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?

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.

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!

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.

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.

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.

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.