Surgery was 8/2/18. Hubby and I drove over the night before surgery. No bowel prep made it nice!
We arrived at the hospital at 7 am. Paperwork filled out. Then they brought me back to prep me for surgery. Vein finding did not go well, 2 different nurses tried in my hands....nope. So they called in for reinforcements and did it in the underneath side of my arm, which is supposed to be more painful but was not at all for me.
I was so thankful for my husbands support. I was certainly a ball of nerves.
Dr. Duke came in and visited and so did the Anesthesiologist, who was very nice as well. Everyone at the hospital seemed nice.
They gave me the versed and wheeled me back, I remember getting scooted over on the table and them giving me the mask to hold and that was it.
Waking up was a different story, pain, horrific pain. I remember the recovery nurse saying no I can't give you more pain medicine you will fall asleep.
This is where things went down hill for my experience. I felt very rushed by the recovery room nurse, she would say I don't want to rush you and then immediately be like should be get you dressed and up. Are you fucking kidding???? Finally I was like fine and she helped me sit up and get into my dress (because pants are a no go after surgery for me). She said we need to get you to the next recovery section. Surgery was supposed to be outpatient, unless I wasn't doing well then I could stay or so I though. So I get in the wheelchair and she wheels me into where my husband is waiting next to this recliner thing. I had to get up out of the wheelchair, this was excruciating, and lift myself into this recliner which was too tall ( imagine a short person trying to sit down on an oversized recliner when every core muscle is screaming in pain), I had to use too many abdominal muscles to scoot back into it and then it only reclined so far. My pain was a 10 for sure, I was dying and I have a damn high pain tolerance. They gave me a percocet. Yeah that wasn't cutting it, they kept asking me about discharge. I was like I can't even get my pain under control. So they said, maybe if you pee it will help. So I went pee, yeah that didn't help and while in the bathroom I missed Dr. Duke who stopped by before heading to the clinic. The nurse says to me we don't want to rush you, but we have done all we can for you here. So I asked about a bed, because there was no way I could get back in the chair, they said well we can, but you are out of time here, there is no medical reason for you to stay and your insurance might not pay for it. So I sat, in the wheelchair, in pain...debating. The percocet got it down to maybe a 5 when I wasn't moving a muscle and I got some broth and jello down. They kept saying we are not rushing you but.....I had to make a decision, fight for a bed or go back to the hotel for the night. Out of sheer frustration I decided to hell with it and we got discharged. Talk about pain. My pain was nowhere under control, but what option did I have. The next morning as we were leaving town, as I was just desperate to get home by that point, Dr. Duke calls, he had planned on admitting me for the night due to my endo on the bowel that was addressed and my pain.... apparently nobody got that memo. My husband did record what Dr. Duke told him went on during surgery thankfully so I at least had that.
It took me several days to even be close to be able to say pain was under control. I don't think it benefits women to push them out of the hospital so fast after such a major surgery. So what did I have done? Appendectomy, hydrodistension and bladder scope, work on the inguinal canals to check for endo in the inguinal canals, endo on my bladder, endo on my small bowel, endo over my inguinal canal, endo on my left pelvic sidewall, obliterated pouch of douglas, adhesions, endo wrapped around my right ureter, I am probably missing something. No full bowel resection was needed but my bowel had quite a bit of endo and is stitched up. Oh and IC was confirmed. No wonder I hurt like hell!!!! How on gods green earth does this extensive of surgery become a day thing and get you evicted before pain is under control. Now I do not believe that this made Dr. Duke happy and at Post Op I will have some suggestions for him. Because despite being a great surgeon if women feel like they have to do more battle for pain management after surgery they might not choose him. I know after my hysterectomy with Dr. Arrington my pain was too bad and they kept me overnight even though it was supposed to be outpatient surgery. And my pain was hard to get under control then. I have to say Dr. Dulemba does the best job of pain control after surgery, he has a set routine for every woman and that is how it goes, no nurse makes the decision.
I am now 5 days post op and feeling more human, still on pain meds and exhaustion sets in easily. My pain that was in the appendix area and prompted surgery is gone. I can't wait to see what pathology has to say about that.
I do not regret this surgery one bit, I do however wish doctors took after surgery care just as seriously. I know a big portion is insurance, I get that. But if I am doubled over in pain ( I couldn't stand up straight until 3 days after surgery) that is medical reason in my opinion to be held in the hospital. I never expected my pain to get to a 0 before being discharged, I realize that is unrealistic, but we were nowhere close to what would have been acceptable and I felt judged or made to feel the pain wasn't that bad when I tried to say otherwise.
Wednesday, August 8, 2018
Monday, July 30, 2018
Consult with Dr. Duke
I was super nervous about this consult. Of course the 3 hour drive gave me plenty of time to think and worry as well. What if my pain was still in my head? I mean I had now had 3 surgeries with specialists, what if there is nothing more that can be done and I have to just suck it up and live this way?
I ended up arriving almost an hour early as I had put my appt. in google calendar wrong. But the receptionist was super sweet and said they could probably get me in early. She was wonderful and kind and I felt a bit more relaxed.
The nurse brought me back after a few minutes of waiting and we went through my complicated history. I kept apologizing for it being so complicated. She reassured me that I didn't need to worry. We discussed my concern for the endo of the appendix and she said don't worry he will fix you right up. She also had endo so she totally understood!
Dr. Duke came in and was also very kind. We clarified some things in my history and he was unhappy that the general surgeon I saw locally did not remove the appendix. He said lets get surgery on the books but I also believe you also have some other pain generators that need addressed. Interstitial Cystitis and Pelvic Floor Dysfunction. Dr. Dulemba had mentioned IC, and said I needed to find a uro/gyn after I had healed from surgery to confirm. Of course doctors here didn't want to refer me. So Dr. Duke pressed and examined and my bladder was painful, way more than I thought it would be, then he cathed me and numbed the bladder.....less pain. He also checked for pelvic floor dysfunction, which I didn't ever really believe was an issue. But let me tell you when he pressed on the obturator muscles I nearly jumped off the tables and they went into serious spasms. We also discussed the masses in the inguinal canals, in which my pain flares at the same time the appendix pain does. He said he would have a fellowship trained general surgeon on standby for surgery and we would remove the endo from them as well.
So after I was dressed again we made a plan. I would increase my Premarin, start taking valium vaginally for the PFD until I was healed from surgery then I would start pelvic floor physical therapy. As soon as surgery was approved through insurance I would have my appendix removed, inguinal canals addressed, he would hydro-distend my bladder and look with a scope to verify IC and do a treatment. Even though I was just diagnosed with 2 other issues, I felt hope, I wasn't crazy. It has been a long journey but I have not given up.
One of the questions he asked me after the pelvic exam took me a bit by surprise. He asked if I had been raped or sexually assaulted before. He was very kind and non judgmental in this question, it was true concern. I paused for what seemed like an eternity, wanting to answer no, but knowing that I had to be honest. I said yes, yes I had been raped about 20 years ago. He went on to explain that women who have been raped or sexually assaulted have almost a 3 times great occurrence of pelvic floor dysfunction. I never would have thought that something that happened that long ago would be still having an impact on me today. It was an emotional appointment for me, but things made so much more sense now. It seems that women don't get treated for PFD after rape or assault for many reasons, shame, guilt or being told by doctors that the pain they experience during sex is not real its just PTSD from the experience, when in fact it is actually the muscles, a real and treatable pain generator.
Surgery is booked for August 3rd and is coming up fast. Of course I am having a horrible flare and it can't get here soon enough. I feel I am in very good hands and am so happy that I only have to travel 3 hours away. My husband will accompany me for this surgery. And best thing is NO BOWEL PREP! He is one who has realized that there may actually be more harm than good by doing bowel preps before surgery.
So if you are still having pain, despite seeing a specialist keep fighting, there are reasons for your pain you just need to find and treat them. I am very hopeful that this is going to be my last surgery for a while!
I ended up arriving almost an hour early as I had put my appt. in google calendar wrong. But the receptionist was super sweet and said they could probably get me in early. She was wonderful and kind and I felt a bit more relaxed.
The nurse brought me back after a few minutes of waiting and we went through my complicated history. I kept apologizing for it being so complicated. She reassured me that I didn't need to worry. We discussed my concern for the endo of the appendix and she said don't worry he will fix you right up. She also had endo so she totally understood!
Dr. Duke came in and was also very kind. We clarified some things in my history and he was unhappy that the general surgeon I saw locally did not remove the appendix. He said lets get surgery on the books but I also believe you also have some other pain generators that need addressed. Interstitial Cystitis and Pelvic Floor Dysfunction. Dr. Dulemba had mentioned IC, and said I needed to find a uro/gyn after I had healed from surgery to confirm. Of course doctors here didn't want to refer me. So Dr. Duke pressed and examined and my bladder was painful, way more than I thought it would be, then he cathed me and numbed the bladder.....less pain. He also checked for pelvic floor dysfunction, which I didn't ever really believe was an issue. But let me tell you when he pressed on the obturator muscles I nearly jumped off the tables and they went into serious spasms. We also discussed the masses in the inguinal canals, in which my pain flares at the same time the appendix pain does. He said he would have a fellowship trained general surgeon on standby for surgery and we would remove the endo from them as well.
So after I was dressed again we made a plan. I would increase my Premarin, start taking valium vaginally for the PFD until I was healed from surgery then I would start pelvic floor physical therapy. As soon as surgery was approved through insurance I would have my appendix removed, inguinal canals addressed, he would hydro-distend my bladder and look with a scope to verify IC and do a treatment. Even though I was just diagnosed with 2 other issues, I felt hope, I wasn't crazy. It has been a long journey but I have not given up.
One of the questions he asked me after the pelvic exam took me a bit by surprise. He asked if I had been raped or sexually assaulted before. He was very kind and non judgmental in this question, it was true concern. I paused for what seemed like an eternity, wanting to answer no, but knowing that I had to be honest. I said yes, yes I had been raped about 20 years ago. He went on to explain that women who have been raped or sexually assaulted have almost a 3 times great occurrence of pelvic floor dysfunction. I never would have thought that something that happened that long ago would be still having an impact on me today. It was an emotional appointment for me, but things made so much more sense now. It seems that women don't get treated for PFD after rape or assault for many reasons, shame, guilt or being told by doctors that the pain they experience during sex is not real its just PTSD from the experience, when in fact it is actually the muscles, a real and treatable pain generator.
Surgery is booked for August 3rd and is coming up fast. Of course I am having a horrible flare and it can't get here soon enough. I feel I am in very good hands and am so happy that I only have to travel 3 hours away. My husband will accompany me for this surgery. And best thing is NO BOWEL PREP! He is one who has realized that there may actually be more harm than good by doing bowel preps before surgery.
So if you are still having pain, despite seeing a specialist keep fighting, there are reasons for your pain you just need to find and treat them. I am very hopeful that this is going to be my last surgery for a while!
Thursday, July 26, 2018
All the insanity, Lack of Updates!
Well life got away from me and blogging just didn't happen. So here is a brief recap since my last post.
Surgery #2 with Dr. Dulemba also known as a second look surgery to break up newly formed adhesions was a success. Another wonderful experience at the hospital and with the addition of the scopolamine patch before surgery there was no vomiting. It was over an hour long as things were already stuck back together again. By now it was obvious menopause had hit and I was started on .625 mg of Premarin. I did not feel as well. When I got home it took about 2 weeks of horrible hot flashes, body aches and just feeling horrible before my body adjusted to the Premarin. It also made me super nauseated. I even ended up in the ER for fluids because of it. So I tried the patch, which the insurance will only cover the generic, which doesn't stick as well and so after almost 2 months of trying that I gave up and went back to the Premarin, this time with increased dose and the nauseated feeling was much less. One of the biggest issues of the patches is no hot baths, and frankly I couldn't even shower without it coming off. Such a pain! So now I was on 1.25 mg and finally feeling more human. I had no idea how different surgical menopause was than natural menopause and it has been trying to say the least.
Then I started having episodes that felt like appendicitis. Was in the ER twice for it. In April they admitted me to the hospital sure it was appendicitis. Scans of course showed nothing but the pain, nausea and vomiting didn't subside. After 3 days in the hospital the general surgeon agreed to open me up. I wanted her to remove my appendix, I was convinced it was my appendix and Dr. Dulemba even felt it was the culprit and regretted not removing it. When she got in there she released a couple of adhesions not even on the same side as the pain and burned (WTF??) a spot she felt might be endo and then left my appendix stating it looked fine to her. I ended up with a blood clot from all the IV pain meds in my arm and that vein is now ruined. Things seemed to settle for a bit, but then it started all over again. The general surgeon said you are still healing its healing pain call me in October if you are still in pain.....I wanted them to at least do a colonoscopy. So for a while I just continued the pain cycle, every couple of weeks I would have 3-5 days of appendicitis like flares.
This eventually got old, this was not healing pain or additional adhesion pain, in addition to this my burning groin pain was happening at the same time. So I reached out to another Endometriosis specialist, one who was added to the list on Nancy's Nook after my surgery with Dr. Dulemba otherwise I may have gone to him to begin with. Dr. Adam Duke was only 3 hours away in Post Falls Idaho.
So I called and made an appt. for the end of June. I will write a separate post about my initial consult.
Also in March my 15 yr old daughter had surgery with Dr. Dulemba as well, her endo was severe, he said it was one of the worst cases he has seen for somebody her age, she also has polycystic ovaries and adenomyosis. Such a horrible diagnosis for such a young girl. She had excision, which ended up being almost total peritoneal excision, a presacral neurectomy for the adenomyosis and ovarian drilling. Her endo receptors were equal estrogen and progesterone. Her second look surgery her ovary was stuck to the side wall. She is feeling better, but with not a lot of option besides hysterectomy for adenomyosis she is stuck living with some pain. She of course hates the pain and heavy bleeding and wishes she could just have a hysterectomy. Its a tough decision for sure.
Surgery #2 with Dr. Dulemba also known as a second look surgery to break up newly formed adhesions was a success. Another wonderful experience at the hospital and with the addition of the scopolamine patch before surgery there was no vomiting. It was over an hour long as things were already stuck back together again. By now it was obvious menopause had hit and I was started on .625 mg of Premarin. I did not feel as well. When I got home it took about 2 weeks of horrible hot flashes, body aches and just feeling horrible before my body adjusted to the Premarin. It also made me super nauseated. I even ended up in the ER for fluids because of it. So I tried the patch, which the insurance will only cover the generic, which doesn't stick as well and so after almost 2 months of trying that I gave up and went back to the Premarin, this time with increased dose and the nauseated feeling was much less. One of the biggest issues of the patches is no hot baths, and frankly I couldn't even shower without it coming off. Such a pain! So now I was on 1.25 mg and finally feeling more human. I had no idea how different surgical menopause was than natural menopause and it has been trying to say the least.
Then I started having episodes that felt like appendicitis. Was in the ER twice for it. In April they admitted me to the hospital sure it was appendicitis. Scans of course showed nothing but the pain, nausea and vomiting didn't subside. After 3 days in the hospital the general surgeon agreed to open me up. I wanted her to remove my appendix, I was convinced it was my appendix and Dr. Dulemba even felt it was the culprit and regretted not removing it. When she got in there she released a couple of adhesions not even on the same side as the pain and burned (WTF??) a spot she felt might be endo and then left my appendix stating it looked fine to her. I ended up with a blood clot from all the IV pain meds in my arm and that vein is now ruined. Things seemed to settle for a bit, but then it started all over again. The general surgeon said you are still healing its healing pain call me in October if you are still in pain.....I wanted them to at least do a colonoscopy. So for a while I just continued the pain cycle, every couple of weeks I would have 3-5 days of appendicitis like flares.
This eventually got old, this was not healing pain or additional adhesion pain, in addition to this my burning groin pain was happening at the same time. So I reached out to another Endometriosis specialist, one who was added to the list on Nancy's Nook after my surgery with Dr. Dulemba otherwise I may have gone to him to begin with. Dr. Adam Duke was only 3 hours away in Post Falls Idaho.
So I called and made an appt. for the end of June. I will write a separate post about my initial consult.
Also in March my 15 yr old daughter had surgery with Dr. Dulemba as well, her endo was severe, he said it was one of the worst cases he has seen for somebody her age, she also has polycystic ovaries and adenomyosis. Such a horrible diagnosis for such a young girl. She had excision, which ended up being almost total peritoneal excision, a presacral neurectomy for the adenomyosis and ovarian drilling. Her endo receptors were equal estrogen and progesterone. Her second look surgery her ovary was stuck to the side wall. She is feeling better, but with not a lot of option besides hysterectomy for adenomyosis she is stuck living with some pain. She of course hates the pain and heavy bleeding and wishes she could just have a hysterectomy. Its a tough decision for sure.
Tuesday, March 20, 2018
Surgery #1 with Dr. Dulemba, oopherectomy, adhesion release and endo excision.
My first surgery with Dr. Dulemba was 2/23/18 at Medical City in Denton TX.
I had to be at the hospital to check in for surgery at 6 am. It was again, pouring rain and an intense lighting storm. We thought we were going to get struck on the way from the car to the hospital.
Check in went fast and they brought me back to get ready for surgery. I was definitely a bundle of nerves. Got into my snazzy gown and the wonderful OR prep nurse got the IV in the first try (they have issues with my veins usually). I got scrubbed, prepped and shaved. The anesthesiology team came in and we discussed my nausea after surgery. They would make sure I had zofran after surgery. We went over everything, signed paperwork etc. They were also very nice. Several others were in and out with paperwork, checking my vitals, checking my blood sugar. Dr. Dulemba came in and talked with us. He was very reassuring. They put the happy juice in my IV and I don't remember anything else until I woke up.
The first thing I remember feeling is the catheter, I really don't like them. And being wheeled out of recover into my room, I wasn't really awake yet.
Then I feebly yelled, I am going to be sick. Thankfully they got me a container in time, but that is not fun right after surgery. They got me zofran. I had some pain, it wasn't horrible though. I was really out of it and once I stopped puking and pushed my morphine button a few times I was out. I remember briefly talking to my mom, who said my surgery was about 3 hours and that she would come back later and let me rest. Once I had a good sleep I woke up, feeling quite amazing. I texted my mom saying I am feeling perky. I am sure the morphine pump had something to do with that ;) But really I felt great.
Dr. Dulemba has a very specific routine for his patients. Everyone stays the night. Pain control is big. Catheter stays in until morning. Rest is important. I also had the on-que pain pump which is crazy but amazing. My room was amazing, single room, very very quiet and spacious. My nurses were also amazing. They checked me at midnight and 4 am. And were quick to respond if I used the call button. I did have an issue with the catheter not wanting to drain, but they moved the hose around and it started draining again.
Oh, you probably want to know what he found. Severe adhesions, when he first went in he couldn't even identify any anatomy they were so bad. The mass in question that was in debate about what it was??? It was a mass of endo around my round ligament where it goes into the inguinal canal. There was clearly no hernia. My round ligaments also had adhesions and were stuck to the ovaries and bowels which were also stuck to my vaginal cuff. There was a spot on my sigmoid colon and the right pelvic wall that he also removed that looked like endo. Ovaries were both removed, there was no saving them they had been completely taken over by adhesions. Dr. Dulemba was horrified at what all was going on and that nobody had believed how much pain I had to be in with all that going on.
Yes! I felt vindicated, yet again. I was not crazy, it was not all in my head!
The next morning they took me off the morphine pump and removed the catheter. I got to eat actual food. I must say the hospitals food could use some improvement, but it wasn't horrible. I was able to get up and go to the bathroom and do some walking. Dr. Dulemba came in early afternoon to visit with me and discharge me. He is an amazing surgeon. I was definitely feeling so much better already! He felt that Dr. Arrington had done a great job with my first surgery and that the endo removed was new not missed.
The on-que pain pump stayed in until Sunday, surgery was Friday. Then I had to removed the tubing through the small hole just above my pubic bone. That was a weird experience, but I managed to do it without freaking out too bad ;)
Sunday evening I was feeling good enough to have lunch with my cousin Pete and his wife Nikki who live nearby.
My followup was on Tuesday morning and my second look surgery was scheduled for Wednesday. I will write another post about that soon.
I had to be at the hospital to check in for surgery at 6 am. It was again, pouring rain and an intense lighting storm. We thought we were going to get struck on the way from the car to the hospital.
Check in went fast and they brought me back to get ready for surgery. I was definitely a bundle of nerves. Got into my snazzy gown and the wonderful OR prep nurse got the IV in the first try (they have issues with my veins usually). I got scrubbed, prepped and shaved. The anesthesiology team came in and we discussed my nausea after surgery. They would make sure I had zofran after surgery. We went over everything, signed paperwork etc. They were also very nice. Several others were in and out with paperwork, checking my vitals, checking my blood sugar. Dr. Dulemba came in and talked with us. He was very reassuring. They put the happy juice in my IV and I don't remember anything else until I woke up.
The first thing I remember feeling is the catheter, I really don't like them. And being wheeled out of recover into my room, I wasn't really awake yet.
Then I feebly yelled, I am going to be sick. Thankfully they got me a container in time, but that is not fun right after surgery. They got me zofran. I had some pain, it wasn't horrible though. I was really out of it and once I stopped puking and pushed my morphine button a few times I was out. I remember briefly talking to my mom, who said my surgery was about 3 hours and that she would come back later and let me rest. Once I had a good sleep I woke up, feeling quite amazing. I texted my mom saying I am feeling perky. I am sure the morphine pump had something to do with that ;) But really I felt great.
Dr. Dulemba has a very specific routine for his patients. Everyone stays the night. Pain control is big. Catheter stays in until morning. Rest is important. I also had the on-que pain pump which is crazy but amazing. My room was amazing, single room, very very quiet and spacious. My nurses were also amazing. They checked me at midnight and 4 am. And were quick to respond if I used the call button. I did have an issue with the catheter not wanting to drain, but they moved the hose around and it started draining again.
Oh, you probably want to know what he found. Severe adhesions, when he first went in he couldn't even identify any anatomy they were so bad. The mass in question that was in debate about what it was??? It was a mass of endo around my round ligament where it goes into the inguinal canal. There was clearly no hernia. My round ligaments also had adhesions and were stuck to the ovaries and bowels which were also stuck to my vaginal cuff. There was a spot on my sigmoid colon and the right pelvic wall that he also removed that looked like endo. Ovaries were both removed, there was no saving them they had been completely taken over by adhesions. Dr. Dulemba was horrified at what all was going on and that nobody had believed how much pain I had to be in with all that going on.
Yes! I felt vindicated, yet again. I was not crazy, it was not all in my head!
The next morning they took me off the morphine pump and removed the catheter. I got to eat actual food. I must say the hospitals food could use some improvement, but it wasn't horrible. I was able to get up and go to the bathroom and do some walking. Dr. Dulemba came in early afternoon to visit with me and discharge me. He is an amazing surgeon. I was definitely feeling so much better already! He felt that Dr. Arrington had done a great job with my first surgery and that the endo removed was new not missed.
The on-que pain pump stayed in until Sunday, surgery was Friday. Then I had to removed the tubing through the small hole just above my pubic bone. That was a weird experience, but I managed to do it without freaking out too bad ;)
Sunday evening I was feeling good enough to have lunch with my cousin Pete and his wife Nikki who live nearby.
My followup was on Tuesday morning and my second look surgery was scheduled for Wednesday. I will write another post about that soon.
Friday, March 16, 2018
Travel Adventures; The loss of my ovaries; Pre-Op
February 21st and 22nd 2018
My mom and I set out late in the evening of the 21st for TX. There are no nice flights out of Montana and it seemed it was butt crack of dawn or middle of the night. We chose late which later we learned would be a mistake.
When we arrived at midnight at DFW in TX, it was threatening to be freezing rain or snow and people were freaking out. By the time we got our bags and took the bus to the rental car station we learned that all the budget employees went home in fear of the storm. But that we could go wait in the very long Avis line, who had 1 customer service rep.....It was late, we were exhausted and hungry. After nearly 2 hours of waiting in line we were finally given a car.
In the dark and pouring rain that was on the verge of freezing we made our way to the hotel. We had trouble figuring out the car headlights, the GPS decided to have us avoid tolls and it was an utter disaster. But we finally got there. Since I would be having to do liquid diet and bowel prep that day we decided to run for a bite to eat. But the only thing we could find nearby open at 3 am was a Jack in the Box in a sketch location....We finally got to bed about 4 am and had to be up for a 9 am Pre-Op Appointment. We were exhausted.
The next morning it is pouring rain and we couldn't figure out how to get to the front entrance of the office building so we climbed the steep back steps up the hillside. So we get to the pre-op appointment and find I was supposed to have had a full bladder for u/s. Nobody told me and but the very nice radiologist just worked with it. On the U/S she clearly noted that both sides of my pelvis were not moving, along with the center as well. Looked like things were all glued together, she showed me on u/s. She would push on my belly while looking with the u/s wand and it was quite visible. My left ovary was nearly impossible to find but she finally found it. What a relief I thought to myself, I at least had some adhesions I thought, it wouldn't be a wasted trip if nothing else was wrong. At the same time I wondered why no other radiologists or doctors had thought to check for adhesions which were clearly visible on U/S.
Then it was into Dr. Dulemba's office where we met him to go over everything. Our visit lasted almost 4 hours. We went over all the details of my issues, treatment plan and everything endo related. It was so reassuring to know I was in good hands. My mom was re assured as well. Dr. Dulemba is very personable, has a sense of humor with some sarcasm but very very knowledgeable about endometriosis and he isn't afraid to go against other doctors who's interest lies in drug companies or failing treatments.
During the treatment planning he pulled out the u/s report to go over it. We had already discussed removing ovaries as they seemed to be a source of pain for me, I did not take this decision lightly and we talked about it a lot. I was secretly hoping that he would find another cause for the pain for my ovaries and that I could keep them. Because facing surgical menopause with PCOS and Endometriosis was scary stuff. He said, from what we can see on the ultrasound you egg supply is gone and your ovaries are atrophying, you are already headed into or are in menopause. I wanted to burst out into tears, seriously. I couldn't believe it. Yes I was considering having them removed, but finding out they were dying and dead was somehow completely horrifying. The realization of menopause seemed horrifying at the age of 38.
Why???? Why were they dead??? I had been having some hotflashes and mood swings the past few months but nothing I thought was menopause. Although my mom looked at me and said "this makes perfect sense for how you have been feeling." Dr. Dulemba's personal thought is that when you take the tubes and leave the ovaries (my hysterectomy and tube removal was about 6 months ago) they are part of the ovary and share a blood supply. He feels that taking just the tubes can contribute to the ovarian failure when that blood supply is cut off. Like I said, he thinks outside the box. I feel like surgeons always encourage taking the tubes as that is where they believe much of ovarian cancer begins. But I was never told there was a risk to it during my first surgery. Here is an article on that https://academic.oup.com/humrep/article/18/10/2175/622722. So it was decided the ovaries would be removed.
I got my prescription for my pain meds and we headed to the hospital to get all registered. This is where we made a big mistake. We thought it was just going to be a little blood work and then we would go eat. Nope lots of paperwork, bloodwork, and surgical counseling. By the time I got done with it all both Mom and I were exhausted, hungry and emotional. Fluctuating between tears and hanger (hungry anger). It didn't help it was still pouring rain and cold! We had skipped breakfast to catch a little more sleep not realizing how long our day was going to be. Well I was on liquid diet, but my support system was hungry. The hospital staff was amazing and kind though and we appreciated their smiling faces. Ryann with the surgical counseling was super sweet and helpful.
So we ran to walmart to get my prescription filled and got some food for Mom and my other bowel prep medicine. Then went back to the hotel and crashed! Awake long enough to do the bowel prep, YUCK, and have a video chat with my sweet kids and husband. I had to report to the hospital for surgery at 6 am. Thankfully the hotel was quiet and the beds were super soft and comfy and despite nerves for surgery I actually slept.
My mom and I set out late in the evening of the 21st for TX. There are no nice flights out of Montana and it seemed it was butt crack of dawn or middle of the night. We chose late which later we learned would be a mistake.
When we arrived at midnight at DFW in TX, it was threatening to be freezing rain or snow and people were freaking out. By the time we got our bags and took the bus to the rental car station we learned that all the budget employees went home in fear of the storm. But that we could go wait in the very long Avis line, who had 1 customer service rep.....It was late, we were exhausted and hungry. After nearly 2 hours of waiting in line we were finally given a car.
In the dark and pouring rain that was on the verge of freezing we made our way to the hotel. We had trouble figuring out the car headlights, the GPS decided to have us avoid tolls and it was an utter disaster. But we finally got there. Since I would be having to do liquid diet and bowel prep that day we decided to run for a bite to eat. But the only thing we could find nearby open at 3 am was a Jack in the Box in a sketch location....We finally got to bed about 4 am and had to be up for a 9 am Pre-Op Appointment. We were exhausted.
The next morning it is pouring rain and we couldn't figure out how to get to the front entrance of the office building so we climbed the steep back steps up the hillside. So we get to the pre-op appointment and find I was supposed to have had a full bladder for u/s. Nobody told me and but the very nice radiologist just worked with it. On the U/S she clearly noted that both sides of my pelvis were not moving, along with the center as well. Looked like things were all glued together, she showed me on u/s. She would push on my belly while looking with the u/s wand and it was quite visible. My left ovary was nearly impossible to find but she finally found it. What a relief I thought to myself, I at least had some adhesions I thought, it wouldn't be a wasted trip if nothing else was wrong. At the same time I wondered why no other radiologists or doctors had thought to check for adhesions which were clearly visible on U/S.
Then it was into Dr. Dulemba's office where we met him to go over everything. Our visit lasted almost 4 hours. We went over all the details of my issues, treatment plan and everything endo related. It was so reassuring to know I was in good hands. My mom was re assured as well. Dr. Dulemba is very personable, has a sense of humor with some sarcasm but very very knowledgeable about endometriosis and he isn't afraid to go against other doctors who's interest lies in drug companies or failing treatments.
During the treatment planning he pulled out the u/s report to go over it. We had already discussed removing ovaries as they seemed to be a source of pain for me, I did not take this decision lightly and we talked about it a lot. I was secretly hoping that he would find another cause for the pain for my ovaries and that I could keep them. Because facing surgical menopause with PCOS and Endometriosis was scary stuff. He said, from what we can see on the ultrasound you egg supply is gone and your ovaries are atrophying, you are already headed into or are in menopause. I wanted to burst out into tears, seriously. I couldn't believe it. Yes I was considering having them removed, but finding out they were dying and dead was somehow completely horrifying. The realization of menopause seemed horrifying at the age of 38.
Why???? Why were they dead??? I had been having some hotflashes and mood swings the past few months but nothing I thought was menopause. Although my mom looked at me and said "this makes perfect sense for how you have been feeling." Dr. Dulemba's personal thought is that when you take the tubes and leave the ovaries (my hysterectomy and tube removal was about 6 months ago) they are part of the ovary and share a blood supply. He feels that taking just the tubes can contribute to the ovarian failure when that blood supply is cut off. Like I said, he thinks outside the box. I feel like surgeons always encourage taking the tubes as that is where they believe much of ovarian cancer begins. But I was never told there was a risk to it during my first surgery. Here is an article on that https://academic.oup.com/humrep/article/18/10/2175/622722. So it was decided the ovaries would be removed.
I got my prescription for my pain meds and we headed to the hospital to get all registered. This is where we made a big mistake. We thought it was just going to be a little blood work and then we would go eat. Nope lots of paperwork, bloodwork, and surgical counseling. By the time I got done with it all both Mom and I were exhausted, hungry and emotional. Fluctuating between tears and hanger (hungry anger). It didn't help it was still pouring rain and cold! We had skipped breakfast to catch a little more sleep not realizing how long our day was going to be. Well I was on liquid diet, but my support system was hungry. The hospital staff was amazing and kind though and we appreciated their smiling faces. Ryann with the surgical counseling was super sweet and helpful.
So we ran to walmart to get my prescription filled and got some food for Mom and my other bowel prep medicine. Then went back to the hotel and crashed! Awake long enough to do the bowel prep, YUCK, and have a video chat with my sweet kids and husband. I had to report to the hospital for surgery at 6 am. Thankfully the hotel was quiet and the beds were super soft and comfy and despite nerves for surgery I actually slept.
What causes pain and stumps doctors? Endometriosis.
You all tired of my saga yet? I know some family and friends are, but I am going to share anyhow.
I am backtracking with these posts a bit. This is from the Middle of February.
After nobody could decide what my inguinal growth was or wasn't. I scheduled a telephone consult with Dr. Dulemba. Because what causes pain and stumps doctors? Endometriosis.
The consult went great. He always know just what to say and what questions to ask. I had also had some bowel issues again and other thing like my painful ovaries that I was mostly set to ignore but he included them in the mix.
We mulled over whether my groin pain could be a hernia, or endo or both. He concluded it would be best to take care of the gyn problems since we knew they existed instead of jumping into hernia surgery that may not even be a hernia. He felt there was a likely chance that I also had adhesions. That 3-6 post op months is when they tend to really start causing drama. We talked about the possibility of removing my ovaries, since I felt that they were a huge source of pain still.
I said to him "I am beginning to feel like this is all in my head again." He reassured me it was not in my head and that he would do what he could to help figure out what the pain exactly was.
So the next morning I emailed his scheduler. He had an opening for surgery the next week. I was shocked as I was sure I would have to wait longer, and if I didn't take the appointment I would have to wait another month for the next opening. After some crazy logistical calculations and discussions we decided to take that surgery date. I have to say that my husband is the most wonderful person! He never questioned it once, or was upset to have to have kids for 10 days or attempt to work from home. He just wanted me to feel better.
My mom was able to take the time to go down and help me through surgery. I am extremely grateful for her help.
Now this is not like planning a normal surgery, in your hometown, where you get to come home after your surgery to your own house. I would be flying from MT to TX and back again 9 days later, after 2 surgeries. SCARY STUFF!
I was able to get a medical rate through Delta for the airfare which helped and the hotel had a hospital discount. This was still not going to be cheap, but at least the surgeon took my insurance.
Over the week waiting for surgery, I felt immense guilt. Guilt that after one surgery that was supposed to fix me up, I was still in pain, still unable to be a good mom and wife, and costing our family more money. I was terrified he wouldn't find anything wrong. Yep, after all those years of being told it was all in my head and to lose weight, it still stuck with me. Even after an official diagnosis. I was terrified of being a hypochondriac. Or that my pain wasn't really that bad.
This says a lot about what its like. https://www.buzzfeed.com/laraparker/what-its-like-to-get-diagnosed-with-a-chronic-illness?
I am backtracking with these posts a bit. This is from the Middle of February.
After nobody could decide what my inguinal growth was or wasn't. I scheduled a telephone consult with Dr. Dulemba. Because what causes pain and stumps doctors? Endometriosis.
The consult went great. He always know just what to say and what questions to ask. I had also had some bowel issues again and other thing like my painful ovaries that I was mostly set to ignore but he included them in the mix.
We mulled over whether my groin pain could be a hernia, or endo or both. He concluded it would be best to take care of the gyn problems since we knew they existed instead of jumping into hernia surgery that may not even be a hernia. He felt there was a likely chance that I also had adhesions. That 3-6 post op months is when they tend to really start causing drama. We talked about the possibility of removing my ovaries, since I felt that they were a huge source of pain still.
I said to him "I am beginning to feel like this is all in my head again." He reassured me it was not in my head and that he would do what he could to help figure out what the pain exactly was.
So the next morning I emailed his scheduler. He had an opening for surgery the next week. I was shocked as I was sure I would have to wait longer, and if I didn't take the appointment I would have to wait another month for the next opening. After some crazy logistical calculations and discussions we decided to take that surgery date. I have to say that my husband is the most wonderful person! He never questioned it once, or was upset to have to have kids for 10 days or attempt to work from home. He just wanted me to feel better.
My mom was able to take the time to go down and help me through surgery. I am extremely grateful for her help.
Now this is not like planning a normal surgery, in your hometown, where you get to come home after your surgery to your own house. I would be flying from MT to TX and back again 9 days later, after 2 surgeries. SCARY STUFF!
I was able to get a medical rate through Delta for the airfare which helped and the hotel had a hospital discount. This was still not going to be cheap, but at least the surgeon took my insurance.
Over the week waiting for surgery, I felt immense guilt. Guilt that after one surgery that was supposed to fix me up, I was still in pain, still unable to be a good mom and wife, and costing our family more money. I was terrified he wouldn't find anything wrong. Yep, after all those years of being told it was all in my head and to lose weight, it still stuck with me. Even after an official diagnosis. I was terrified of being a hypochondriac. Or that my pain wasn't really that bad.
This says a lot about what its like. https://www.buzzfeed.com/laraparker/what-its-like-to-get-diagnosed-with-a-chronic-illness?
Tuesday, February 20, 2018
It just keeps getting weirder, the "is it a hernia" saga
Its been a bit since my last post, I have been processing everything which has taken a totally different direction than hernia.
So the radiologist finally got the MRI results read. No visible hernia, or hip issues, or anything else for that matter, it gave me a clean bill of heath. ARE YOU F"ING KIDDING ME!!!!
So this is when I decided, hmmm what is the one thing that stumps doctors, doesn't show up on scans, and has cause pain in my life. ENDOMETRIOSIS
The radiologist was of the opinion she would be able to see endo on the MRI, well from my experience and many other women that isn't really reliable. So I went back to my calendar of symptoms and sure enough it is certainly cyclic. And by the calendar it is progressively getting worse.
At this point my wonderful NP says she has no idea what to do. But I did. It was time to call in a specialist. So I made an appt. for a phone consult with Dr. Dulemba down in TX.
After speaking with him, he feels we need to address the potential GYN side of things before just pursuing a hernia that may or may not exist. He felt that there could be adhesions, agreed that maybe my ovaries needed to go and considered the possibility of inguinal endo. I told him I felt like a crazy person about all this. He reassured me that my pain was real and he would see what he could do to help.
So the next day I emailed his scheduler, I was expecting months out. But he had an opening the next week, which happens to be this week as I write this. So began the crazy logistics of flying to TX from MT. Thankfully my mom can fly down with me and my husband will be staying with the kids. I will have surgery Friday the 23rd and then a 2nd look surgery the next Wednesday to check for adhesions forming and address them before they get worse.
I am so nervous. Nervous to yet again meet another new doc, although I have had 2 phone consults with him and really like him. Nervous about what he will find (and yes in the back of my mind I fear he will open me up and find absolutely nothing) and what will be done.
As for the ovaries if you remember they are polycystic, and while removing them doesn't cure PCOS it can help with the pain. Buuuuut there is a trade off. Surgical Menopause. I have been doing a lot of research on it and frankly it scares the hell out of me. Some women do ok, some do not. HRT of some flavor will be required, but PCOS since it is endocrine, adds a whole other aspect of treatment and often makes it hard to find a good dose of HRT. So then I doubt myself, maybe I should just live with the pain. But that is silly too. I am certain my right ovary will go for sure, it has always caused me the most pain. Then if I leave the left will I just end up having surgery on it later, one more surgery.....Part of me hopes he will get in there and it will be other causes for the pain in the ovary area, not the ovaries themselves and I will get to keep them. Have I mentioned I hate these kind of decisions?
So my mom and I fly out tomorrow (Wed). My pre-op and u/s are Thursday and first surgery Friday. I get to spend all Thursday doing liquid diet and bowel prep. Fun times!
Last night it was confirmed that I really need to get this taken care of. While making dinner I started to get horrible burning/shooting/tearing LRQ pain. By bedtime it included my right midsection, under my right ribcage and my right should. The pain was so horrific I almost considered going to the ER. Then I remembered they have me labeled as a crazy pain med seeker and won't do anything for me, so I toughed it out. I also had LLQ pain as well but it was nothing like the right side. I thought I was going to die. And it totally felt endo related to me, but then I have never had adhesions so I don't know what that is like. But people describe it as burning/tearing so it sounds about right.
I am thankful for the support of my family during all this craziness. My mom for dropping everything and making the trip with me and my husband for taking care of everything at home and supporting every medical decision I make without batting an eye.
So the radiologist finally got the MRI results read. No visible hernia, or hip issues, or anything else for that matter, it gave me a clean bill of heath. ARE YOU F"ING KIDDING ME!!!!
So this is when I decided, hmmm what is the one thing that stumps doctors, doesn't show up on scans, and has cause pain in my life. ENDOMETRIOSIS
The radiologist was of the opinion she would be able to see endo on the MRI, well from my experience and many other women that isn't really reliable. So I went back to my calendar of symptoms and sure enough it is certainly cyclic. And by the calendar it is progressively getting worse.
At this point my wonderful NP says she has no idea what to do. But I did. It was time to call in a specialist. So I made an appt. for a phone consult with Dr. Dulemba down in TX.
After speaking with him, he feels we need to address the potential GYN side of things before just pursuing a hernia that may or may not exist. He felt that there could be adhesions, agreed that maybe my ovaries needed to go and considered the possibility of inguinal endo. I told him I felt like a crazy person about all this. He reassured me that my pain was real and he would see what he could do to help.
So the next day I emailed his scheduler, I was expecting months out. But he had an opening the next week, which happens to be this week as I write this. So began the crazy logistics of flying to TX from MT. Thankfully my mom can fly down with me and my husband will be staying with the kids. I will have surgery Friday the 23rd and then a 2nd look surgery the next Wednesday to check for adhesions forming and address them before they get worse.
I am so nervous. Nervous to yet again meet another new doc, although I have had 2 phone consults with him and really like him. Nervous about what he will find (and yes in the back of my mind I fear he will open me up and find absolutely nothing) and what will be done.
As for the ovaries if you remember they are polycystic, and while removing them doesn't cure PCOS it can help with the pain. Buuuuut there is a trade off. Surgical Menopause. I have been doing a lot of research on it and frankly it scares the hell out of me. Some women do ok, some do not. HRT of some flavor will be required, but PCOS since it is endocrine, adds a whole other aspect of treatment and often makes it hard to find a good dose of HRT. So then I doubt myself, maybe I should just live with the pain. But that is silly too. I am certain my right ovary will go for sure, it has always caused me the most pain. Then if I leave the left will I just end up having surgery on it later, one more surgery.....Part of me hopes he will get in there and it will be other causes for the pain in the ovary area, not the ovaries themselves and I will get to keep them. Have I mentioned I hate these kind of decisions?
So my mom and I fly out tomorrow (Wed). My pre-op and u/s are Thursday and first surgery Friday. I get to spend all Thursday doing liquid diet and bowel prep. Fun times!
Last night it was confirmed that I really need to get this taken care of. While making dinner I started to get horrible burning/shooting/tearing LRQ pain. By bedtime it included my right midsection, under my right ribcage and my right should. The pain was so horrific I almost considered going to the ER. Then I remembered they have me labeled as a crazy pain med seeker and won't do anything for me, so I toughed it out. I also had LLQ pain as well but it was nothing like the right side. I thought I was going to die. And it totally felt endo related to me, but then I have never had adhesions so I don't know what that is like. But people describe it as burning/tearing so it sounds about right.
I am thankful for the support of my family during all this craziness. My mom for dropping everything and making the trip with me and my husband for taking care of everything at home and supporting every medical decision I make without batting an eye.
Wednesday, January 31, 2018
Radiologists, are they failing women?
Here is more of my groin pain saga, this is why it is so important that we keep fighting and keep advocating for ourselves! Yesterday I arrived at the hospital for a core biopsy of the swollen inguinal lymph node. The appointment was at 1pm and we drove 2.5 hours to get there. Got all set up for the biopsy but they wouldn't let my husband come in with me, I was so nervous and scared and not happy but complied. The ultrasound tech comes in and asks if I had any questions. I reminded her that they also need to look for endometriosis in the biopsy, my wonderful Doctor and I agreed it needed to be ruled out.
The radiologist comes in and says "I don't know why the other radiologist (who read the u/s last week) even signed off on this biopsy your report showed your node is large but normal." So I explained that it was causing me pain and there was the potential of endo in the lymph node that was causing the pain. She argued that it isn't possible. So I told her that my endo specialist told me that yes endo can be "in" the lymph nodes and I had the pathology report he sent me for proof if she wanted to see it. So she says, I still don't think you need a biopsy, they are not without risk. I said, I understand the risk, and I want to move forward with the biopsy. I am shaking with nerves and nauseous at this point, I don't do confrontation well. And at this point I am already feeling like a crazy person and its obvious the Radiologist views me as a crazy person too.
The Radiologist asks me where the pain is so I show her and she starts searching for the node, but instead she saw a mass but not the node, she hands the wand to the tech and says show me where you found this node. So the tech shows her the node, the radiologist then takes the wand back in silence and works it over for a while. OUCH!!! She then says, this is not a lymph node, I believe this is a hernia or an endometrioma, and proceeded to show the tech why this wasn't a node. Including the fact that the mass continued into my abdomen from the inguinal canal where they couldn't see it anymore on the u/s. At this point I am frustrated and near tears.
The radiologist then said, it makes no sense to do a biopsy, this is in no way a lymph node, but there is something there that needs to be addressed. So she asked if I had a CT scan done, I told her yes in Oct. when the pain started and nothing was found. She said I am sending you for another CT scan immediately and I will go over the first CT scan, not just the results but the scan imaging. At this point she has been on the phone with my doctor as well several times. So I get the CT scan done and we give her time to go through the scans. She calls me back to her office and shows me the scans. It is indeed an inguinal hernia and the mass is the inguinal canal filled with fat. Luckily its fat and not bowel. She then pulls up the scan from October and guess what, the hernia is there, just as prominent as on her scan yesterday. So at this point she is horrified that I had 2 ultrasound scans and 2 CT scans (one in November at the ER that she couldn't get access to quickly) in which the radiologist and techs did not see the hernia. And that the techs performing the ultrasounds both believed the mass was a lymph node when it wasn't even close to looking like one in her opinion. So she says, because there are other factors that could be causing pain as well and your history of endo I want you to have a full pelvic MRI including hips, if you are willing I will get you on the schedule today and I will personally go over the scans. I said yes and she called the MRI dept and said I have a patient and she WILL be seen today. So at 3:45 I went in for my MRI, which originally was going to be one hour, but she decided to do a full pelvic MRI with contrast and a full one without. So 2 hours in the MRI. I will hear back today hopefully from the radiologist on what she finds.
It was a hell of a day, but we are finally getting answers. I really had to stand my ground though, if I had agreed not to proceed with the biopsy, she wouldn't have looked and found that it wasn't even a lymph node. It horrifies me that 2 u/s techs thought it was a lymph node when it wasn't and that radiologists didn't question it. Also frustrating that the hernia surgeon I saw didn't go over the actual CT scan, he just read the report. Had he looked it over the scan he would have seen the hernia. Radiologists are relying too heavily on what the techs say and image and not looking well enough at the imaging themselves. They are leaving us vulnerable, in pain and feeling like crazy people!!! The radiologist felt there was no excuse for missing the hernia in the 2 previous CT scans because I was able to accurately pinpoint my pain.
Over 3 months of pain because the first radiologist didn't do his/her job followed by similar mistakes by subsequent radiologists and techs.
I am very grateful for the Radiologist I saw yesterday, even though we didn't see eye to eye in the beginning. After she realized that it was not a lymph node at all, she was extremely helpful and informative.
We know our bodies best and though it is frustrating and exhausting we need to keep fighting for proper care! Educate yourselves, find non biased scientific evidence to share with doctors and don't give up!
Friday, January 26, 2018
Swollen Inguinal Lymph Node UPDATE
Yesterday I drove 2.5 hours to see my old doctor, well actually she is a FNP, but is super awesome. I started the morning out with bloodwork. She tested for everything, seriously....when the lab tech printed the labels they just kept printing and printing and printing. Everything from HIV to Thyroid and Cholesterol. Then later in the morning I had my u/s. I was irritated with the tech, I know they aren't supposed to give info on what they see but she said, well yeah, I guess its swollen, but it looks normal to me. Something about it being flat. But of course didn't give me dimensions, so I was worried maybe the lymph node had gone down and we didn't really find the cause of my pain. Not that I didn't wish my lymph node was getting better, but my pain was not, so it would have left us scrambling for more answers. I was super nervous about my appointment with the FNP. I love her to death, but have been blown off so many times by other docs now I guess you could say I have PTSD over it. When I got to the appointment she went over the U/S results. It was still huge although had changed a tiny bit. But it is still 1 cm on the short axis and 4.2 cm in length, yes that is centimeters not millimeters. She said to me I just couldn't fathom that it was actually that big on the first u/s, and when it came back that big again I knew we needed to take action. Looking on the tape measure, trying to wrap her head around how big it is. She said I need to speak with the surgeons and left the room immediately. I could hear her across the hall, frustrated because both surgeons were not available and left a stern message with the receptionist for them to call her back asap. After a while she came back in to tell me she hadn't got through to the surgeons but talked to another doctor about what was going on. He concurred that the node needed removed in his opinion, that although it had a normal shape, the size was way too abnormal to leave any longer. So now we wait to hear back from surgeons.....I will be happy to have some answers, but we have ruled out a lot of the more common and less dangerous reasons for a lymph node to be that size and the possibility of cancer is freaking scary. I woke up just sick to my stomache with worry this morning at 5 am. I worry about cancer, I worry how we will deal with another surgery, who will help with the kids, if hubby can take more time off work and of course the cost. Here is an image to give you an idea on the size of the lymph node, so 8mm shorter than the size of the lime only flatter and narrow, and is located deep in my groin. No wonder it freaking hurts when I bend my leg and squash that area. She is out of the office today and told me that she would get back to me on Monday with more information.
Friday, January 5, 2018
4 Months Post Op ~ The Good The Bad The Ugly
Well today it has been 4 months since I had surgery. I know its been a while since I posted, I am just
trying to deal with life. So here are some updates so far.
The GOOD~ In some ways I feel so much pain relief, I don't have any of the uterus pain which was intense and I don't seem to have any endo pain either. YAY! No more worries about bleeding to death during my period. Sex life has been great, no more pain their either. Orgasms are different with the uterus and cervix gone but are still amazing. So with a highly trained surgeon there is hope for having pain relief from adenomyosis and endometriosis. Bladder symptoms are gone, no more feeling like I am getting a UTI but not actually having one. No more feeling like I am being stabbed to death during my period or like somebody is dissecting me using a blunt utensil.
The BAD~ A couple of UTI's during recovery. Still lots of abdominal swelling. Still lots of exhaustion, though nothing like before surgery. Ovaries have not been happy, beginning to wish I had them taken as well. PCOS is bad as ever, I had to pluck my mustache for the first time ever. And my nightly hotflashes are getting worse. I don't think the ovarian drilling helped, or not for long.
The UGLY~ Developed right groin pain at 6 weeks post op. Followed up with normal GYN, he thought there was nothing wrong, but reluctantly sent me for a CT Scan. CT Scan showed nothing. Endo surgeon said just wait it out and see if it goes away. Exercise has been impossible and it's frustrating that I am having so much pain. Numerous doctors appointments where it was suggested I had an inguinal hernia, first couple were wait it out some more. U/S was ordered but showed nothing (or so I was told by the regular doc). Finally I was able to get a referral to a hernia surgeon. In the visit to the hernia surgeon he had his nurse call the u/s radiologist right away because they must have got the measurements wrong. I assumed maybe this mean he saw something the u/s tech did not and there was indeed evidence of a hernia. Nope, I had a super swollen inguinal lymph node. This was noted on the u/s but said it appeared normal. The hernia surgeon said the dimensions given were way to big for a lymph node. A 2nd radiologist confirmed the size to be correct, and so the surgeon then said, is it multiple nodes stuck together? Nope just one node the radiologist confirmed. Concerned look on the surgeons face. So then we launch into questions and exam, he does not feel any hernia at all and since the CT Scan and U/S showed nothing he felt that there was no hernia and that the lymph node was causing the pressure and pain on the inguinal nerves. He said contact him in 9-12 months if it wasn't better. Ummmm so what just happened???? So now I move on to another mystery pain. Because of the location in the crack of my leg it is super painful, and I have now had it for about 2.5 months, waiting, resting, yoga, pushing through exercise, nothing is working. Then of course my regular doc is just now on maternity leave. I can't deal with training up a new doc on what is going on so I make an appointment with my old doc who is 3 hours away. You all know what I am talking about here, 15 appointments spent educating the new doc on all the issues, verifying shit that is already in your file, getting questioned on diagnosis's etc.. I want to say to doctors "Did you read my fucking file????" Winter road driving will suck, but at least I have less explaining I have to do for her. I think my family wishes I would just shut up and deal with the pain. It sucks to have a taste at a life without pain only to find something else wrong. Many women experience this though and so I know I am not alone. I am also not crazy! Family history of cancer has me totally freaked about about cancer, either in the node itself of that it is swollen as result of ovary issues or something else. My husband told me I needed to quit researching and googling things. But honestly if I hadn't taken my health into my own hands and done my own research, I would never have found a great surgeon and I would still be full of Endo, facing kidney failure in both kidneys and have an Evil Uterus. Looks like I will need a biopsy of the node at the very least. Maybe I am over reacting. But I did spend about 28 years trying to tell docs about my painful periods before finally getting justification and proof that the pain was not all in my head. I am also still getting supper swollen, still in elastic waist pants etc... I am ready for my life back.
The GOOD~ In some ways I feel so much pain relief, I don't have any of the uterus pain which was intense and I don't seem to have any endo pain either. YAY! No more worries about bleeding to death during my period. Sex life has been great, no more pain their either. Orgasms are different with the uterus and cervix gone but are still amazing. So with a highly trained surgeon there is hope for having pain relief from adenomyosis and endometriosis. Bladder symptoms are gone, no more feeling like I am getting a UTI but not actually having one. No more feeling like I am being stabbed to death during my period or like somebody is dissecting me using a blunt utensil.
The BAD~ A couple of UTI's during recovery. Still lots of abdominal swelling. Still lots of exhaustion, though nothing like before surgery. Ovaries have not been happy, beginning to wish I had them taken as well. PCOS is bad as ever, I had to pluck my mustache for the first time ever. And my nightly hotflashes are getting worse. I don't think the ovarian drilling helped, or not for long.
The UGLY~ Developed right groin pain at 6 weeks post op. Followed up with normal GYN, he thought there was nothing wrong, but reluctantly sent me for a CT Scan. CT Scan showed nothing. Endo surgeon said just wait it out and see if it goes away. Exercise has been impossible and it's frustrating that I am having so much pain. Numerous doctors appointments where it was suggested I had an inguinal hernia, first couple were wait it out some more. U/S was ordered but showed nothing (or so I was told by the regular doc). Finally I was able to get a referral to a hernia surgeon. In the visit to the hernia surgeon he had his nurse call the u/s radiologist right away because they must have got the measurements wrong. I assumed maybe this mean he saw something the u/s tech did not and there was indeed evidence of a hernia. Nope, I had a super swollen inguinal lymph node. This was noted on the u/s but said it appeared normal. The hernia surgeon said the dimensions given were way to big for a lymph node. A 2nd radiologist confirmed the size to be correct, and so the surgeon then said, is it multiple nodes stuck together? Nope just one node the radiologist confirmed. Concerned look on the surgeons face. So then we launch into questions and exam, he does not feel any hernia at all and since the CT Scan and U/S showed nothing he felt that there was no hernia and that the lymph node was causing the pressure and pain on the inguinal nerves. He said contact him in 9-12 months if it wasn't better. Ummmm so what just happened???? So now I move on to another mystery pain. Because of the location in the crack of my leg it is super painful, and I have now had it for about 2.5 months, waiting, resting, yoga, pushing through exercise, nothing is working. Then of course my regular doc is just now on maternity leave. I can't deal with training up a new doc on what is going on so I make an appointment with my old doc who is 3 hours away. You all know what I am talking about here, 15 appointments spent educating the new doc on all the issues, verifying shit that is already in your file, getting questioned on diagnosis's etc.. I want to say to doctors "Did you read my fucking file????" Winter road driving will suck, but at least I have less explaining I have to do for her. I think my family wishes I would just shut up and deal with the pain. It sucks to have a taste at a life without pain only to find something else wrong. Many women experience this though and so I know I am not alone. I am also not crazy! Family history of cancer has me totally freaked about about cancer, either in the node itself of that it is swollen as result of ovary issues or something else. My husband told me I needed to quit researching and googling things. But honestly if I hadn't taken my health into my own hands and done my own research, I would never have found a great surgeon and I would still be full of Endo, facing kidney failure in both kidneys and have an Evil Uterus. Looks like I will need a biopsy of the node at the very least. Maybe I am over reacting. But I did spend about 28 years trying to tell docs about my painful periods before finally getting justification and proof that the pain was not all in my head. I am also still getting supper swollen, still in elastic waist pants etc... I am ready for my life back.
Monday, October 2, 2017
4 weeks post op, a review of my recovery so far
Recovery for me has had its ups and downs. I will be 4 weeks post op tomorrow 10/3/17.
5 dpo (days post op) I kept feeling like I wasn't able to fully urinate, my bladder seemed painful, but it didn't feel like a UTI. I sent my surgeons office an email at 7 dpo asking if I needed to be worried or if it was just post op pain. They felt that it was best to get check for a UTI. So off to my general doctor I went. My husband took me to the appointment because I was still on pain meds and not able to drive yet. My leucocytes and white blood cells came back high but no bacteria yet, but she felt with my history of UTI's and kidney infections it was best to treat with Cipro antibiotics. They sent the sample to see if anything else ended up growing. By that evening I was having excruciating back pain, just like a kidney infection, I tried to let the Cipro do its job and held off until the next morning when I decided an ER trip was necessary. They did a cathed urine sample to check for sure on infection but it was negative. My leucocytes and white blood cell count was still high though. The doc suggested it was sepsis, kidney infection and that my surgeon probably damaged my ureters when excising the endo....I was totally freaking out! I doubted seriously that the ureters were damaged, this is why I went to see a specialist, but the ER doc was convinced it was that, and was irritated I hadn't seen a surgeon here. After a CT scan to rule out that damage, the doc came back in, said everything is fine, keep up with your pain meds and go home.....What?????????? What about the sepsis,white blood cells and leucocytes, he evaded answering the question except to say my fever wasn't high enough....So then why even mention sepsis? Anyhow I headed home kept up on the antibiotics and did lots of resting. Then I got my CT scan report....I had fluid at my cervical cuff, and the diagnostics said it was a likely postoperative seroma but the scan didn't show signs of abscess. The doc didn't even mention this, and it could have been the reason for the bladder issues and elevated white blood cell count. I emailed the surgeon and he confirmed that it was normal for how many days post op I was and that it would likely go away on its own. Just to watch for fever.
I also during the 1 week mark added crazy breast tenderness to the mix, which lasted a few days. I think it was about the time I would normally have had a cycle. But I have never had them be so tender, like I needed to have absolutely nothing touching them, clothing was extremely painful.
At about 12 dpo I started feeling so much better, my pain was almost gone and I was able to start weaning off pain meds. All the pain I had before surgery was gone. Things were looking up. Then that next week I started to have bladder spasms, like crazy! I couldn't sleep through them and was out of pain meds. I called my local GYN pretty sure it was surgery related and thought maybe it was best to get seen. Took them 2 days to call back. By then I had starting taking uristat which seemed to have helped. When the nurse called, she said, that the Dr. had just had time to go through my surgery notes and pathology, wow you really had a lot done and a lot of issues didn't you, that surgeon found a lot. Ummm yes, this is what I keep trying to tell you all. So now apparently they will take me seriously. She said that the bladder spasms were normal after that much surgery and to keep taking the uristat and to call if it didn't subside in a few days. It did thankfully subside, although I notice if I am too active it will still spasm a bit.
I continued to be a little better each day, I still feel like I have a sex drive, which I was worried about. I am not cleared for sex until at least 8wpo (weeks post op). But I feel desire for my husband which is reassuring.
I have not had any bleeding except right after surgery. I had some pink discharge at about 21 dpo but suspect that is from dissolving stitches and/or from doing too much.
26 dpo I have had some crazy ovary pain starting in the evening, and mostly on my left side. I also have had an insanely itchy scalp (which is a premenopause symptom). I fear my ovaries are angry and I don't know when they will get to working again. They didn't work well before and the drilling was a last ditch effort to have me keep them as long as I can, I am only 38 and don't want to lose them and start HRT (hormone replacement therapy).
During this recovery I still have a very swollen belly which is definitely worse towards evening. I am obeying my doctors orders about not lifting over 10 lbs, except once when I forgot and picked up my cat....I am trying not to bend and am not pushing, pulling or twisting. As I feel better though it is hard to remind myself I am not allowed to do these things. Putting on socks and shoes is a nightmare, lol. Bending is not comfortable for my swollen belly and we are now not warm enough for flip flops and dresses anymore.
27 dpo,I can say now that all of the original pain (except for the ovary pain) is gone. I feel so much better, I didn't even realize how bad I was feeling before surgery. I still tire very very easily, and I have to remind myself that though my tiny external incisions are just now almost healed the worst was on the inside and it is still very much healing. My bowel issues (mostly diarrhea) are completely gone, my acid reflux is gone, my back pain is gone, my inner thigh pain is gone and my RLS (restless leg syndrome) is much less. I thought the RLS was completely gone but the cipro seemed to aggravate it. A lot of meds and foods aggravate it for me. But the every day RLS is gone, which I had no idea might be endo related.
The kids sometimes forget that now that I am home and not in bed a lot that I still need help. But they are good kids and with some reminding they get things done.
My husband has been amazing, I can't even begin to describe how much he has been there for me, how much he worries for me, how much he helps me and how much he loves me! I am very lucky to have him in my life.
5 dpo (days post op) I kept feeling like I wasn't able to fully urinate, my bladder seemed painful, but it didn't feel like a UTI. I sent my surgeons office an email at 7 dpo asking if I needed to be worried or if it was just post op pain. They felt that it was best to get check for a UTI. So off to my general doctor I went. My husband took me to the appointment because I was still on pain meds and not able to drive yet. My leucocytes and white blood cells came back high but no bacteria yet, but she felt with my history of UTI's and kidney infections it was best to treat with Cipro antibiotics. They sent the sample to see if anything else ended up growing. By that evening I was having excruciating back pain, just like a kidney infection, I tried to let the Cipro do its job and held off until the next morning when I decided an ER trip was necessary. They did a cathed urine sample to check for sure on infection but it was negative. My leucocytes and white blood cell count was still high though. The doc suggested it was sepsis, kidney infection and that my surgeon probably damaged my ureters when excising the endo....I was totally freaking out! I doubted seriously that the ureters were damaged, this is why I went to see a specialist, but the ER doc was convinced it was that, and was irritated I hadn't seen a surgeon here. After a CT scan to rule out that damage, the doc came back in, said everything is fine, keep up with your pain meds and go home.....What?????????? What about the sepsis,white blood cells and leucocytes, he evaded answering the question except to say my fever wasn't high enough....So then why even mention sepsis? Anyhow I headed home kept up on the antibiotics and did lots of resting. Then I got my CT scan report....I had fluid at my cervical cuff, and the diagnostics said it was a likely postoperative seroma but the scan didn't show signs of abscess. The doc didn't even mention this, and it could have been the reason for the bladder issues and elevated white blood cell count. I emailed the surgeon and he confirmed that it was normal for how many days post op I was and that it would likely go away on its own. Just to watch for fever.
I also during the 1 week mark added crazy breast tenderness to the mix, which lasted a few days. I think it was about the time I would normally have had a cycle. But I have never had them be so tender, like I needed to have absolutely nothing touching them, clothing was extremely painful.
At about 12 dpo I started feeling so much better, my pain was almost gone and I was able to start weaning off pain meds. All the pain I had before surgery was gone. Things were looking up. Then that next week I started to have bladder spasms, like crazy! I couldn't sleep through them and was out of pain meds. I called my local GYN pretty sure it was surgery related and thought maybe it was best to get seen. Took them 2 days to call back. By then I had starting taking uristat which seemed to have helped. When the nurse called, she said, that the Dr. had just had time to go through my surgery notes and pathology, wow you really had a lot done and a lot of issues didn't you, that surgeon found a lot. Ummm yes, this is what I keep trying to tell you all. So now apparently they will take me seriously. She said that the bladder spasms were normal after that much surgery and to keep taking the uristat and to call if it didn't subside in a few days. It did thankfully subside, although I notice if I am too active it will still spasm a bit.
I continued to be a little better each day, I still feel like I have a sex drive, which I was worried about. I am not cleared for sex until at least 8wpo (weeks post op). But I feel desire for my husband which is reassuring.
I have not had any bleeding except right after surgery. I had some pink discharge at about 21 dpo but suspect that is from dissolving stitches and/or from doing too much.
26 dpo I have had some crazy ovary pain starting in the evening, and mostly on my left side. I also have had an insanely itchy scalp (which is a premenopause symptom). I fear my ovaries are angry and I don't know when they will get to working again. They didn't work well before and the drilling was a last ditch effort to have me keep them as long as I can, I am only 38 and don't want to lose them and start HRT (hormone replacement therapy).
During this recovery I still have a very swollen belly which is definitely worse towards evening. I am obeying my doctors orders about not lifting over 10 lbs, except once when I forgot and picked up my cat....I am trying not to bend and am not pushing, pulling or twisting. As I feel better though it is hard to remind myself I am not allowed to do these things. Putting on socks and shoes is a nightmare, lol. Bending is not comfortable for my swollen belly and we are now not warm enough for flip flops and dresses anymore.
27 dpo,I can say now that all of the original pain (except for the ovary pain) is gone. I feel so much better, I didn't even realize how bad I was feeling before surgery. I still tire very very easily, and I have to remind myself that though my tiny external incisions are just now almost healed the worst was on the inside and it is still very much healing. My bowel issues (mostly diarrhea) are completely gone, my acid reflux is gone, my back pain is gone, my inner thigh pain is gone and my RLS (restless leg syndrome) is much less. I thought the RLS was completely gone but the cipro seemed to aggravate it. A lot of meds and foods aggravate it for me. But the every day RLS is gone, which I had no idea might be endo related.
The kids sometimes forget that now that I am home and not in bed a lot that I still need help. But they are good kids and with some reminding they get things done.
My husband has been amazing, I can't even begin to describe how much he has been there for me, how much he worries for me, how much he helps me and how much he loves me! I am very lucky to have him in my life.
Pathology Results from Hysterectomy and Endo Excision
I got my pathology results back a few weeks ago and wanted to share some of the findings.
The uterus did not come back with a positive adenomyosis diagnosis, which can be missed unless they sample the entire endometrium. The pathology did say the the myometrium was slightly trabeculated and from what I have read this can be indication of adeno. Results showed benign endometrial polyps (a relief they were benign because unlike fibroids they can be malignant) and a proliferative endometrium. Although I do not fully understand the proliferative endometrium results on the pathology as it is a phase in the menstrual cycle. A normal endometrium in the proliferative stage is 2-3mm thick, mine was 5mm thick. My uterus was indeed enlarged, normal weight is about 60 grams and mine was 148, with enlarged dimensions as well. A lot of doctors recommend hysterectomy when the uterus is larger than 100 grams in weight, which I am not sure how this would be accurately measured prior to hysterectomy.
Even without a clear adenomyosis diagnosis, I do not regret the hysterectomy. Polyps were reason enough to have it done as they reoccur/multiply and come along with a chance for cancer. Pain was located there, along with crazy heavy, bleeding cramping and clots. I was done having children and felt no need to try and keep it.
Info on Endometrial Polys http://www.cmdrc.com/menstrual-disorders-fibroids/endometrial-polyps/
The endometriosis was confirmed by pathology in all samples taken. I can't tell you how gratifying this was, to finally have a reason for the my pain. I want to take the results and slap the doctors who didn't believe my pain with them!!!! If you have endo or other pelvic issues you know how frustrating it is to find a doctor to take you seriously and not just think you are a drug seeking crazy person!
Endo was in the left peritoneum, over the left ureter, plaque and infiltrating with some adhesions to the ureter. This tracked down into the left pelvic cul de sac at the lateral aspect of the rectum. Right side peritoneum, right pelvic cul de sac endometriosis, right mesosalpinx endometriosis and an infiltrative mass in the perirectal fat on the right side which was confirmed to contain endo.
The Mesosalpinx endo I believe is why I felt like I always had right ovary pain, especially during my period. I always assumed this was just due to the PCOS. I had countless docs note my right ovary tenderness in my chart, always saying we will just keep an eye on it.
It will be interesting to see how my ovaries do after all of this and if they can give me a few years without HRT.
The endo that tracked to my rectum and the perirectal mass explained my digestive symptoms, and pain during defecation especially right before my period.
The ureter endo explains why I always thought I was getting a bladder infection right before my period. Often with blood in my urine. Doctors would find no bacteria, see blood and treat me for a UTI regardless. I can't say how many years I had this happen before I figured out for myself that the symptoms like a UTI went along with my menstrual cycle and that is was not an infection needing treated. But since no doc wanted to listen that it was menstrual related, I chalked it up to "periods" and just knew to have uristat on hand for the pain.
Oddly the surgeon didn't note the ovarian cysts or ovarian drilling in his reports, but we clearly saw him do it on the video of the surgery.
The uterus did not come back with a positive adenomyosis diagnosis, which can be missed unless they sample the entire endometrium. The pathology did say the the myometrium was slightly trabeculated and from what I have read this can be indication of adeno. Results showed benign endometrial polyps (a relief they were benign because unlike fibroids they can be malignant) and a proliferative endometrium. Although I do not fully understand the proliferative endometrium results on the pathology as it is a phase in the menstrual cycle. A normal endometrium in the proliferative stage is 2-3mm thick, mine was 5mm thick. My uterus was indeed enlarged, normal weight is about 60 grams and mine was 148, with enlarged dimensions as well. A lot of doctors recommend hysterectomy when the uterus is larger than 100 grams in weight, which I am not sure how this would be accurately measured prior to hysterectomy.
Even without a clear adenomyosis diagnosis, I do not regret the hysterectomy. Polyps were reason enough to have it done as they reoccur/multiply and come along with a chance for cancer. Pain was located there, along with crazy heavy, bleeding cramping and clots. I was done having children and felt no need to try and keep it.
Info on Endometrial Polys http://www.cmdrc.com/menstrual-disorders-fibroids/endometrial-polyps/
The endometriosis was confirmed by pathology in all samples taken. I can't tell you how gratifying this was, to finally have a reason for the my pain. I want to take the results and slap the doctors who didn't believe my pain with them!!!! If you have endo or other pelvic issues you know how frustrating it is to find a doctor to take you seriously and not just think you are a drug seeking crazy person!
Endo was in the left peritoneum, over the left ureter, plaque and infiltrating with some adhesions to the ureter. This tracked down into the left pelvic cul de sac at the lateral aspect of the rectum. Right side peritoneum, right pelvic cul de sac endometriosis, right mesosalpinx endometriosis and an infiltrative mass in the perirectal fat on the right side which was confirmed to contain endo.
The Mesosalpinx endo I believe is why I felt like I always had right ovary pain, especially during my period. I always assumed this was just due to the PCOS. I had countless docs note my right ovary tenderness in my chart, always saying we will just keep an eye on it.
It will be interesting to see how my ovaries do after all of this and if they can give me a few years without HRT.
The endo that tracked to my rectum and the perirectal mass explained my digestive symptoms, and pain during defecation especially right before my period.
The ureter endo explains why I always thought I was getting a bladder infection right before my period. Often with blood in my urine. Doctors would find no bacteria, see blood and treat me for a UTI regardless. I can't say how many years I had this happen before I figured out for myself that the symptoms like a UTI went along with my menstrual cycle and that is was not an infection needing treated. But since no doc wanted to listen that it was menstrual related, I chalked it up to "periods" and just knew to have uristat on hand for the pain.
Oddly the surgeon didn't note the ovarian cysts or ovarian drilling in his reports, but we clearly saw him do it on the video of the surgery.
Saturday, September 9, 2017
TLH Surgery with Endo Excision, Surgery Day and 1 DPO
I am now 4 days post op. I want to get a good post about surgery while its still fresh in my mind but I am also pretty tired and sore.
10:15 was check in time for the hospital. I had been up early, because who can sleep in on the day of surgery... 2nd enema was done. Nerves were crazy town.
When we got to the hospital, it was crazy town, there was a fire about 2 miles away, evacuations were ordered and houses were already burned, this included some doctors houses. Thankfully my surgeon was not affected and we were still a go.
In pre-op they got me into a gown, pregnancy test done and IV in. Everyone was sweet and helpful. Dr. Arrington came in and gave us a run down of how things would go. And time expected.
Not too long after I handed over my glasses to my husband, and said goodbye as they wheeled me away. I was scared. Into the O.R. I went. Although they gave me something to relax, when they tried to put the mask on me I had a bit of a panic and felt as thought I was suffocating. They gently held the mask just off my face until I dozed off, not rushing me or making me feel stupid.
Coming to in the Recovery Area. My first thoughts upon waking up were thank God I am alive. Then the pain, bladder, pelvic, everything. Burning, stinging, aching. They had trouble getting my pain under control so I spend a bit longer in recovery than some. My husband was freaking out a bit when I didn't come out when I was supposed to. They did thankfully remove the catheter right away. I hate cath pain.....
Finally I was wheeled to my recovery room, I don't remember much of this. Since my pain had been pretty bad I had the option to stay the night at the hospital, which I took. I had quite a bit of nauseousness to work through. Hubby showed my photos from the surgery, including endo that he had found and a para rectal mass. I was relieved...this definitely wasn't all in my head. We won't know for sure about the adenomyosis until pathology comes back. I was also really struggling with oxygen, since I have sleep apnea and pain meds make it worse. I had to have oxygen and my cpap at the same time.
About 8 pm I was finally able to keep some food down and take some better pain pills. I was also able to get up and urinate on my own. Secretly this was a big fear, that I would have to have a catheter put back in. I had a little bleeding but nothing scary. My husband was so sweet, he refused to leave me for the night until I was sound asleep. That night went pretty well, the nurses were great about keeping things low key for nightly checks.
The next morning I had my husband bring me a bagel sandwich and chai tea, I was definitely in better spirits. Dr. Arrington came in and went over everything again with me now that I was awake and would remember. He said that my ovaries were covered in cysts. This is very typical for PCOS, but doctors had never noticed and/or said anything about them at any previous appointments. He drained all the cysts and did ovarian drilling hoping to give my ovaries a jump start. He felt the surgery went well and that he had removed all the endo. It was over both ureters, sprinkled on my left side CDS (cul de sac) as well as having the right side para rectal mass (possible endometrioma) and some on the right side.
I was discharged around lunchtime. Since I wasn't up to road tripping home yet, we headed over to the guest house where we were staying. They tried to take me over in a wheel chair, but the bumps were too bad so I ended up just walking. It felt good to rest without interruption.
My husband was so awesome and supportive through this whole process. I love him so much!
Here are some of the photos, we got a video of the whole surgery too.
10:15 was check in time for the hospital. I had been up early, because who can sleep in on the day of surgery... 2nd enema was done. Nerves were crazy town.
When we got to the hospital, it was crazy town, there was a fire about 2 miles away, evacuations were ordered and houses were already burned, this included some doctors houses. Thankfully my surgeon was not affected and we were still a go.
In pre-op they got me into a gown, pregnancy test done and IV in. Everyone was sweet and helpful. Dr. Arrington came in and gave us a run down of how things would go. And time expected.
Not too long after I handed over my glasses to my husband, and said goodbye as they wheeled me away. I was scared. Into the O.R. I went. Although they gave me something to relax, when they tried to put the mask on me I had a bit of a panic and felt as thought I was suffocating. They gently held the mask just off my face until I dozed off, not rushing me or making me feel stupid.
Coming to in the Recovery Area. My first thoughts upon waking up were thank God I am alive. Then the pain, bladder, pelvic, everything. Burning, stinging, aching. They had trouble getting my pain under control so I spend a bit longer in recovery than some. My husband was freaking out a bit when I didn't come out when I was supposed to. They did thankfully remove the catheter right away. I hate cath pain.....
Finally I was wheeled to my recovery room, I don't remember much of this. Since my pain had been pretty bad I had the option to stay the night at the hospital, which I took. I had quite a bit of nauseousness to work through. Hubby showed my photos from the surgery, including endo that he had found and a para rectal mass. I was relieved...this definitely wasn't all in my head. We won't know for sure about the adenomyosis until pathology comes back. I was also really struggling with oxygen, since I have sleep apnea and pain meds make it worse. I had to have oxygen and my cpap at the same time.
About 8 pm I was finally able to keep some food down and take some better pain pills. I was also able to get up and urinate on my own. Secretly this was a big fear, that I would have to have a catheter put back in. I had a little bleeding but nothing scary. My husband was so sweet, he refused to leave me for the night until I was sound asleep. That night went pretty well, the nurses were great about keeping things low key for nightly checks.
The next morning I had my husband bring me a bagel sandwich and chai tea, I was definitely in better spirits. Dr. Arrington came in and went over everything again with me now that I was awake and would remember. He said that my ovaries were covered in cysts. This is very typical for PCOS, but doctors had never noticed and/or said anything about them at any previous appointments. He drained all the cysts and did ovarian drilling hoping to give my ovaries a jump start. He felt the surgery went well and that he had removed all the endo. It was over both ureters, sprinkled on my left side CDS (cul de sac) as well as having the right side para rectal mass (possible endometrioma) and some on the right side.
I was discharged around lunchtime. Since I wasn't up to road tripping home yet, we headed over to the guest house where we were staying. They tried to take me over in a wheel chair, but the bumps were too bad so I ended up just walking. It felt good to rest without interruption.
My husband was so awesome and supportive through this whole process. I love him so much!
Here are some of the photos, we got a video of the whole surgery too.
 |
| Right Endo |
 |
| Left Endo over Ureter |
 |
| Uterus |
 |
| Left Cul de sac endo |
 |
| Right Para Rectal Mass |
 |
| Endo |
Friday, September 1, 2017
My Pre-Op Appointment
My mom drove me down to Ogden the day before pre-op. We were able to get a room at the Annie Taylor Dee Guest House on the hospitals campus. It is amazing, and I will be staying here until I am cleared to leave after surgery. I was thankful for my mom's company, it helped keep my mind off of my nerves. When we arrived at Dr. Arringtons office, all the staff was sweet and helpful. We caught a glimpse of Dr. Arrington in the hallway being goofy. That right there gave me a sigh of relief. He was not a cranky unfriendly guy. While I realize that not all great surgeons have great bedside manner I was relieved he did. I was a huge bundle of nerves. His nurse brought me back and went through all of my history making sure they had not missed anything. She asked me if I had right shoulder pain, uhh yeah, but what does that have to do with anything? Apparently it can go along with Endometriosis on the diaphragm. I have had shoulder pain off and on for years with no explanation. After we were done talking to the nurse, Dr. Arrington came in to visit for a bit before I got ready for a pelvic exam. The pelvic exam was painful, and most of the pain was contained to the uterus. He felt that if I had Endo it wasn't severe. I got changed and we went into his office to go over surgery details. I feel confident he will do his best to make sure there is no Endo and that the Hysterectomy goes well. Because of my previous chest pain he put in an order for a pre-op ekg. They will have photos and videos available for us after surgery which is cool.
The next day I got registered with the hospital and got my EKG done. Everyone at the hospital has been super nice and helpful. My mom flew out and I am just enjoying peace and quiet this weekend.
My husband will fly in Monday morning and then yikes Surgery Tuesday!
Thursday, August 24, 2017
New Local GYN
I had an appt. to get established with a new GYN who is local. I was pretty nervous for this appt. And wasn't sure if they would be on board with my surgery not being local. The nurse was awesome and I felt relieved before even seeing the doctor. The doctor was disappointed that surgery was not with them, but then proceeded to offer birth control and ablation if endo was found and I went through them. Right then my decision to see a specialist was validated. He was a nice enough doctor, and will have to do for now. Because I did my research, I was not tempted by these offers for lesser care. He did do a pelvic exam (freaking ouch!!!!) and concluded that yes my pain location and feel of the uterus was consistent with Adenomyosis. He also warned me again that surgery may not cure my pain. I am aware of this possibility, but at the same time I don't have much to lose as my pain is crazy out of control. I am confident that the hysterectomy for the Adenomyosis is going to be life changing for me. Whether the causes for my other pain is found and addressed is not a concern. I am going to a specialist, so when I am in surgery he knows what he needs to be looking for and I am confident if he finds it he will fix it. If nothing is found and I still have pain after surgery then I look at other options, but for now things are looking good and I am confident in my decision.
I don't know how many times I have refused birth control, which I don't think would help even ease symptoms at this progressed point anyhow. Its in my records (that he read) from both my previous GYN and my general doctor that I refused birth control. Yet still felt the need to suggest them.
The word ablation also tells me that he needs to get the gold standards of care for adenomyosis and endometriosis figured out. There may be times when ablation could be helpful to certain situations but it certainly should not be the standard of care. This is what my specialist has to say about the care of endo.
I don't know how many times I have refused birth control, which I don't think would help even ease symptoms at this progressed point anyhow. Its in my records (that he read) from both my previous GYN and my general doctor that I refused birth control. Yet still felt the need to suggest them.
The word ablation also tells me that he needs to get the gold standards of care for adenomyosis and endometriosis figured out. There may be times when ablation could be helpful to certain situations but it certainly should not be the standard of care. This is what my specialist has to say about the care of endo.
Monday, August 21, 2017
What is PCOS, Endometriosis and Adenomyosis?
I could write everything out in my own words, honestly I don't have time for that when there are sources already written with great information. I will leave you with links to the sites I find factual and informative about these conditions. They are all worth a read, even if you don't suspect you have it, the information could be passed on to somebody who does. Do not assume your doctor knows the details or treatments for these, do the research yourself and be your own advocate. I cannot stress being your own advocate enough!!! Birth control is not a cure all like they would like you to believe. I am also including some links to some great facebook resource groups. Nancy's Nook is where I found the information and encouragement to be brave and seek a specialist for what I am going through. Nancy's nook is like a library of Endometriosis related information.
PCOS http://www.pcosaa.org/pcos-overview/
Endometriosis http://www.centerforendometriosiscare.com/understanding-endometriosis/
Adenomyosis http://centerforendo.com/adenomyosis-is-it-really-endometriosis/
Facebook Groups:
PCOS United Awareness https://www.facebook.com/groups/474486596072590/
Adenomyosis Support https://www.facebook.com/groups/AdenomyosisSupport/
Nancy's Nook Endometriosis Discussion and Education https://www.facebook.com/groups/418136991574617/
EndoMetropolis https://www.facebook.com/groups/endometropolis/
PCOS Psychology https://www.facebook.com/groups/111632742827497/?ref=br_rs
PCOS http://www.pcosaa.org/pcos-overview/
Endometriosis http://www.centerforendometriosiscare.com/understanding-endometriosis/
Adenomyosis http://centerforendo.com/adenomyosis-is-it-really-endometriosis/
Facebook Groups:
PCOS United Awareness https://www.facebook.com/groups/474486596072590/
Adenomyosis Support https://www.facebook.com/groups/AdenomyosisSupport/
Nancy's Nook Endometriosis Discussion and Education https://www.facebook.com/groups/418136991574617/
EndoMetropolis https://www.facebook.com/groups/endometropolis/
PCOS Psychology https://www.facebook.com/groups/111632742827497/?ref=br_rs
Discontinuation of Provera (Medroxyprogesterone) Mini Journal
One of the steps moving towards surgery is to stop taking the Provera (medroxyprogesterone) 10 mg that I was taking daily to try and thin my uterine lining. I had read many statements from women coming off, especially with Adenomyosis, that the bleeding that follows is horrific. Some even needed blood transfusions from the hospital from the hemorrhages. My general doctor had thought I should stay on it until surgery so that I don't chance becoming anemic. The surgeon however felt that it was worth the risk to come off of it. He doesn't want me on anything that might mask symptoms or pain before surgery. Generally bleeding commences 3-7 days after discontinuation. In my case it was day 3, and the cramping has been horrible, doubled over in pain, crying in bed, heating pad, prescribed pain meds aren't touching the pain. My bleeding has surprised me and hasn't been as horrible as a normal (to me) period, at least not yet. I am day 6 off Provera and day 3 of bleeding. I am keeping this journal here for other women who may have questions about what it is like. I will update as it progresses. I was on the Provera for just over 1 and 1/2 months, so maybe that makes a difference as well.
I can say being on the Provera made me a PMS'ing 24/7 hot mess. Like the kind of hot mess where I have to send myself to time out to avoid being a horrible parent or wife. I can thankfully say that some of that emotional mess has subsided.
Day 3 Off Provera ~ Light Brownish Blood, no clots, horrific cramping.
Day 6 Off Provera ~ Normalish bleeding, no clots, horrific cramping.
Day 9 Off Provera ~ Pink spotting and horrific cramping.
Day 10 off provera~No bleeding cramping has lessened.
My History ~ PCOS, Adenomyosis and Endometriosis
This will be long, but for those suffering like I did you will understand.
I have had PCOS that I am aware of for about 15 years, diagnosed about 10 years ago. My mom and 2 sister also have it. How about those statistics for you! Getting pregnant wasn't easy, pregnancies were complicated but I do have 3 beautiful children. I suffer from ovarian cysts, hair loss, facial hair growth, skin tags, insulin resistance,and weight gain to name a few. I have spent years researching and trying to learn more about this medical condition. I have always had horrible periods which I chalked up to normal...I mean isn't that what we are all told? I would bleed profusely with large clots and horrible cramping for 7-10 days and cycles would be around 40 days, sometimes skipping a cycle or two. In my earlier years I was put on birth control to "help", but I struggled with ones that didn't cause breakthrough bleeding or other horrid side affects.
After I was finished having children, my husband had a vasectomy and I chose to get rid of the birth control. I did not want something in my system that was just masking my symptoms and giving me other side affects. This decision wasn't easy though because my PCOS really started to kick my butt, gaining a ton of weight, and become even more insulin resistant. I tried to eat healthy and exercise, but didn't see the scale move much. I knew I was healthier but the weight just wouldn't budge, I carried it right around my mid section, often looking pregnant.
During the summer of 2016 I joined Beachbody and started drinking shakeology and really started watching my portions. I was able to lose about 15 pounds after a few months. I divorced Mtn. Dew, still haven't touched it since July 11 2016, and don't drink much soda at all, just water. Things were going better, so well in fact I decided to start coaching with Beachbody. I still had to work super hard to even see a little change but at least I felt I was holding ground. January rolled around and I had gained some weight back, I wasn't perfect over the holidays so I threw myself into eating right and working out harder. By February I had gained almost all of the weight I had previously lost back, I looked pregnant. I was devastated, and couldn't figure out what was wrong. I couldn't find anyone to join my fitness group and programs, because who would want to do it if I was throwing myself into it and not seeing any progress. I will say I do love beachbody and shakeology and haven't given up coaching yet, but I have to take care of me right now.
My periods started getting even more painful, and crampy and clotty. I was starting to have pelvic pain when I wasn't on my period. Exercising was excruciatingly painful. I pretty much fell off the wagon at this point, frustrated and confused. In April about a week before my period I started feeling like I was getting a UTI. I normally have this feeling 1-2 days before my period and have for many years. I would go to the doc, they would test, say there was no infection but prescribe antibiotics anyhow. But this was the worst and earliest it had been so I went to the doc. Of course there was no infection so she sent me me for an ultrasound. They found a cyst on my right ovary, so they determined it was the cause of my bladder pain. Since then I have had it off and on, for much longer time periods and at a 2nd u/s they determined the cyst was gone.
So back and forth with the doctor and a referral to a GYN, who was certainly not an advocate for my health. I did however learn that my first u/s had shown an enlarged uterus and thickened endometrial lining, something the doctor never shared with me. The GYN did an in office u/s and found my uterus was the size of somebody who is 12 weeks pregnant and the lining was thickened to 20 mm and globular in appearance. She mentioned Adenomyosis or Cancer. She took 3 uterine biopsies right there in the office that day, and sent me home to wait. After waiting almost 10 days the results were normal, she wanted me to take 10 mg of progesterone a day to try and thin the lining, she originally wanted me on birth control or an iud and I refused both. She would not be addressing any other pain or concerns at that time, and by this time it was July. I was so confused!
Now I have been down this diagnosis road before with the PCOS and knew that I needed to start researching on my own. I first joined Adenomyosis Support on facebook and the support and information was just what I needed. I also joined the Nancy's Nook endometriosis discussion facebook group. I decided to switch GYN's and demand a hysterectomy (only cure for adenomyosis) which of course anybody with recommendations were weeks out, my get to know you appt. would be August 23rd. During the 6-7 weeks of waiting my symptoms increased exponentially even though the Provera was supposed to help, I did skip my cycle the end of July but things just keep getting worse. My pain was daily and debilitating.
The beginning of August I felt like I was getting the wind knocked out of me and had chest pain. I went to the ER thinking I was having a heart attack. But they couldn't find anything wrong with me except mildly elevated pancreas levels. I was sent home with just a few pain meds feeling like a crazy person. I personally think now my pain was giving me panic attacks. But I also learned endometriosis can be found in the chest cavity.
At this point I knew that I needed some serious intervention, I had been reading about the Nook Docs who are specialists in endometriosis excision surgery. Adenomyosis is kind of like endometriosis only located on the inside walls of the uterus instead of outside. Many women found that along with their Adenomyosis they also had endometriosis. There are something like 100 surgeons on this list world wide. And most of them are out of network for insurance. But I was done messing around with docs just wanting to mask my symptoms or make me think I was a crazy person. I called nearly every Specialist on the west coast. I was able to get an appt. with one in Portland or an appt. with one in Utah. After talking with their offices I decided that Utah was my best bet, as the surgeon took the time to respond to me personally.
My husband agreed that we needed to find the best surgeon to fix me up regardless of cost. And we wanted somebody to do the hysterectomy that knew what to look for and how to excise it properly if endometriosis was indeed found. I also found out that endometriosis runs in my family. So I put down a down payment and scheduled a surgery date of Sept. 5th. EndoWest in Ogden UT with Dr. Arrington. So far they have been great and I finally don't feel like a crazy person. My pre-op consult is the 30th. I will be driving 7 hours to get there. Thankfully the hospital has a guest house that is very inexpensive to stay at. My husband will fly down right before surgery to be with me and drive me home.
This is my journey, and I hope an inspiration for you to be strong and educated about pelvic pain and take control of your own treatment.
Christine
I have had PCOS that I am aware of for about 15 years, diagnosed about 10 years ago. My mom and 2 sister also have it. How about those statistics for you! Getting pregnant wasn't easy, pregnancies were complicated but I do have 3 beautiful children. I suffer from ovarian cysts, hair loss, facial hair growth, skin tags, insulin resistance,and weight gain to name a few. I have spent years researching and trying to learn more about this medical condition. I have always had horrible periods which I chalked up to normal...I mean isn't that what we are all told? I would bleed profusely with large clots and horrible cramping for 7-10 days and cycles would be around 40 days, sometimes skipping a cycle or two. In my earlier years I was put on birth control to "help", but I struggled with ones that didn't cause breakthrough bleeding or other horrid side affects.
After I was finished having children, my husband had a vasectomy and I chose to get rid of the birth control. I did not want something in my system that was just masking my symptoms and giving me other side affects. This decision wasn't easy though because my PCOS really started to kick my butt, gaining a ton of weight, and become even more insulin resistant. I tried to eat healthy and exercise, but didn't see the scale move much. I knew I was healthier but the weight just wouldn't budge, I carried it right around my mid section, often looking pregnant.
During the summer of 2016 I joined Beachbody and started drinking shakeology and really started watching my portions. I was able to lose about 15 pounds after a few months. I divorced Mtn. Dew, still haven't touched it since July 11 2016, and don't drink much soda at all, just water. Things were going better, so well in fact I decided to start coaching with Beachbody. I still had to work super hard to even see a little change but at least I felt I was holding ground. January rolled around and I had gained some weight back, I wasn't perfect over the holidays so I threw myself into eating right and working out harder. By February I had gained almost all of the weight I had previously lost back, I looked pregnant. I was devastated, and couldn't figure out what was wrong. I couldn't find anyone to join my fitness group and programs, because who would want to do it if I was throwing myself into it and not seeing any progress. I will say I do love beachbody and shakeology and haven't given up coaching yet, but I have to take care of me right now.
My periods started getting even more painful, and crampy and clotty. I was starting to have pelvic pain when I wasn't on my period. Exercising was excruciatingly painful. I pretty much fell off the wagon at this point, frustrated and confused. In April about a week before my period I started feeling like I was getting a UTI. I normally have this feeling 1-2 days before my period and have for many years. I would go to the doc, they would test, say there was no infection but prescribe antibiotics anyhow. But this was the worst and earliest it had been so I went to the doc. Of course there was no infection so she sent me me for an ultrasound. They found a cyst on my right ovary, so they determined it was the cause of my bladder pain. Since then I have had it off and on, for much longer time periods and at a 2nd u/s they determined the cyst was gone.
So back and forth with the doctor and a referral to a GYN, who was certainly not an advocate for my health. I did however learn that my first u/s had shown an enlarged uterus and thickened endometrial lining, something the doctor never shared with me. The GYN did an in office u/s and found my uterus was the size of somebody who is 12 weeks pregnant and the lining was thickened to 20 mm and globular in appearance. She mentioned Adenomyosis or Cancer. She took 3 uterine biopsies right there in the office that day, and sent me home to wait. After waiting almost 10 days the results were normal, she wanted me to take 10 mg of progesterone a day to try and thin the lining, she originally wanted me on birth control or an iud and I refused both. She would not be addressing any other pain or concerns at that time, and by this time it was July. I was so confused!
Now I have been down this diagnosis road before with the PCOS and knew that I needed to start researching on my own. I first joined Adenomyosis Support on facebook and the support and information was just what I needed. I also joined the Nancy's Nook endometriosis discussion facebook group. I decided to switch GYN's and demand a hysterectomy (only cure for adenomyosis) which of course anybody with recommendations were weeks out, my get to know you appt. would be August 23rd. During the 6-7 weeks of waiting my symptoms increased exponentially even though the Provera was supposed to help, I did skip my cycle the end of July but things just keep getting worse. My pain was daily and debilitating.
The beginning of August I felt like I was getting the wind knocked out of me and had chest pain. I went to the ER thinking I was having a heart attack. But they couldn't find anything wrong with me except mildly elevated pancreas levels. I was sent home with just a few pain meds feeling like a crazy person. I personally think now my pain was giving me panic attacks. But I also learned endometriosis can be found in the chest cavity.
At this point I knew that I needed some serious intervention, I had been reading about the Nook Docs who are specialists in endometriosis excision surgery. Adenomyosis is kind of like endometriosis only located on the inside walls of the uterus instead of outside. Many women found that along with their Adenomyosis they also had endometriosis. There are something like 100 surgeons on this list world wide. And most of them are out of network for insurance. But I was done messing around with docs just wanting to mask my symptoms or make me think I was a crazy person. I called nearly every Specialist on the west coast. I was able to get an appt. with one in Portland or an appt. with one in Utah. After talking with their offices I decided that Utah was my best bet, as the surgeon took the time to respond to me personally.
My husband agreed that we needed to find the best surgeon to fix me up regardless of cost. And we wanted somebody to do the hysterectomy that knew what to look for and how to excise it properly if endometriosis was indeed found. I also found out that endometriosis runs in my family. So I put down a down payment and scheduled a surgery date of Sept. 5th. EndoWest in Ogden UT with Dr. Arrington. So far they have been great and I finally don't feel like a crazy person. My pre-op consult is the 30th. I will be driving 7 hours to get there. Thankfully the hospital has a guest house that is very inexpensive to stay at. My husband will fly down right before surgery to be with me and drive me home.
This is my journey, and I hope an inspiration for you to be strong and educated about pelvic pain and take control of your own treatment.
Christine
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