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.

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.

Right Endo

 

Left Endo over Ureter

Uterus

Left Cul de sac endo

Right Para Rectal Mass

Endo

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!

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.

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

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