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Reply to "endometriosis or pouch"

Hi guys,

I know this is a few months old but I wanted to share my experience for anyone considering laparoscopy or surgery with endo and j-pouch.

I’ve had the pouch for 14 years since I was 15 and I’ve had no problems in that area which is amazing! 

However since the surgery I began to get a lot of pain around menstrual cycle. Initially it was a back and forth game from Gyno to colecrector surgeon, various hormone treatments etc. Being told it was scar tissue and adhesions, it was too dangerous to operate “you just have to live with it”. Which I’m seeing a few of us have been told. In the last few years I was spending 2 out of 4 weeks in bed with pain which began to affect my life, had to drop to part time in work. So I began trying different doctors till someone would do something about it.

I attended a new Gyno was highly regarded in his field and as a surgeon. He seemed confident in performing a laparoscopy to get to the bottom of it (diagnose endo/ remove scar tissue etc). He said he would go in under my ribs to avoid puncturing pouch and would not proceed if it was too dangerous. All in all he sounded very confident. (This was something my colerectol surgeon wouldn’t hear of kind of wish I had listened to him. But at the time I was in so much pain and wanted a solution.) 

So I had the laparoscopy done it was a day procedure (even with my complex background) the nurses said I could go even though I told them my pain was 9/10 they treated me like I was exaggerating (wouldn’t go back to that hospital was a dreadful experience). Anyways Home I went was on oxynorm which was making me really sick over the course of 10 days my pain was getting worse. I thought It was due to the procedure or meds... wasn’t keen to rush back to hospital incase I was “exaggerating”. On the 10th day I sat on the couch and suddenly I couldn’t breath with the pain (I usually have a high pain threshold but I was screaming). When my parent came in they said my lips were blue and my face was so white. I was freezing but wet with sweat very strange. They called and ambulance and I was rushed in and had to be resuscitated with 4 blood transfusions and IV. Turns out they had burst an artery on my ovary and both ovaries were bleeding. I didn’t have time to get transferred to hospital where my colerectal surgeon was they need to do an open surgery immediately as I was haemorrhaging. This whole experience was pretty traumatic prob took me most of last year to get over the shock. I had to sign a waiver whereby I could lose the pouch among other risks. Everything went well thank god i didn’t lose the pouch I didn’t lose my ovaries I was very lucky. My scar was bigger but sure look. I was in hosp 10 days whereby I was finding it really hard to keep food down (took pouch awhile to work). Then I was released it was a slow long recovery but eventually after I was back to work full time. (Missed 8 months in total that year).

After the surgery I was still having pain for awhile so again tried various treatments settled on decapeptly (puts you through menopause) and estrogen. This was working well till recently I was in a lot of pain even though I wasn’t having periods which was very strange. Turned out I had an 8 cm endometrial cyst that needed to be dealt with (ran it by colecrectal surgeon and he ageeed but insisted on open surgery rather then laparoscopy. As you can imagine I was terrified I never wanted to have surgery again after last year but it was nessessay as symptoms were bad and was in a lot of pain. Same risks loss of pouch/ ovaries...

my new Gyno (who isn’t the same as the one who did laparoscopy last year) is amazing she tried loads of hormone treatments throughout the year but once it was 8cm it needed surgery. I met with a general surgeon who would be involved incase anything went wrong with pouch. The operation went so well they removed the cyst apparently there was a lot of scar tissue and adhesions and a hernia near my belly button. My recovery was so much quicker than last year I was out of hospital in 6 days. I’m at home recuperating now it’s been 11 days. 

Sorry for such a long winded post but wanted to share my experience in the hopes it would help people chose carefully when making a decision about endo/surgery. Based on my experience I think it’s too dangerous for us pouch gals to have laparoscopy too much going on in our abdomin. Open surgery is safer they can see what they are doing still risks involved though. But I totally get the frustration of not being able to live in pain and being on strong meds. Decapetpy really worked best for me with pain so maybe try this or something that stops periods completely before opting for any surgery.

Must try pelvic physio

thanks for reading hope this helps xx

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