endometriosis or pouch

Hi all,

 

I've had a J pouch for 16 years with no problems at all (yay!). But the past year, I've had terrible pelvic pain and gynaecologist thinks it is endometriosis. Initially I did really well on hormonal treatments for this, but now  I have stopped responding to these and pain is back and worse than before. I'm being sent back to colorectal surgeon to see if there is something structural in the pouch that could be causing my pelvic pain as it is unusual for the hormones not to help if it is endo.  Has anyone ever had any "shifting" in the pouch, like a prolapse, that needed surgical correction for pain? Also, has anyone had a laproscopy for endometriosis with your J pouch? It sounds like it is very risky for us pouch girls to have one so I am worried, but equally don't have ay other options right now other than narcotic pain killers until I hit menopause which really isn't an option.... thanks for your thoughts.

Original Post

Hi Duck,

So sorry for all of the pain...

My situation was a bit different and a long time ago plus I have a k pouch...but...I started having intense pelvic pain on the right side...first they thought endo, then they found cysts around the right ovary and inflammation in the tube (salpangitis), after a HSG (hystérographie ) they put me on massive doses of antibiotics  but ended up operating (open surgery )... my pouch sits on the abdominal wall so I was terrified. 

The surgeon did a fantastic job (general surgeon with my obs/gyn in the o.r.) and cleaned up a big mess of infection, cysts, adhesions etc and even 'opacified' my tube hoping for it to heal up normally for fertility reasons. 

They put me on progesterone for 3 years to allow the region to heal and prevent reccurance...it/they never came back.

You need to speak openly to them about your fears, have your C/R surgeon present and ready to dive in if needed.

Good luck and I hope that they get this all straitened  out for you.

Sharon 

 

Hi Duck11,

please tell me how your story has evolved. I began having pelvic pains a few months ago and two days ago I ended up in the emergency room at the hospital with crazy pains. Yesterday I went to the gynecologist who said they did not find anything and had no explanation as to what caused the horrible pain. Because the pain did not occur when I have my period they say it cannot be endometriosis.

Please let me know what happens with you

Lovelife, 

Just because they didn't find anything does not need that there is nothing there.

Sometimes it takes different types of tests to discover what is going on. If it never happens again, then fine but if it comes back then there is Something there...stand up for yourself, your health and your body...

Sharon

Hi Lovelife,

My husband and I did IVf treatments and the pelvic pain started about 6 months afterwards. At first, it was only mild after sex, then with periods and finally evolved to all the time and the pain intensity went through the roof.  I finally saw a good OBGYN who diagnosed the endometriosis but it took FOREVER. "it's just your pouch", "it's just your scars" etc. Everything gets blamed on our Jpouch surgery like a scapegoat. I really had to push that something was wrong. Like you, I had  numerous trips to the ER with pain so bad I was throwing up that lasted for weeks at a time. I had about a year where all I did was go to work and lay on the couch. It really sabotaged my life.  My gyno would not do ANY surgery, and still won't, unless I agree to all the risks, and rally strongly said it was a bad idea unless I am desperate due to the risks to  the J pouch. I appreciate him being honest about this instead of ruining another part of my health (my j pouch has been very good to me). Instead, I am on a crazy drug called Lupron that puts you into meno pause. It has helped a ton-- not perfect, but my pain is so much more managed so I chose quality of life with the potential long-term risks. No one can live in chronic pain like that indefinitely. My understanding is that endometriosis takes 10-15 years for diagnosis since it can only be confirmed with laparoscopy or a positive response to the drugs that treat it. Can you try progesterone and see if you respond? My gone said if you respond to the drugs, you can use that to confirm the diagnosis as there is no other reason they would work.  The other thing you might want to check is pelvic physical therapy. I developed all kinds of muscle/ligament issues from the J pouch/chronic pelvic pain/hip arthritis that then becomes it's own pain--you tense up your abdomen forever from pain and then the tight muscles create a new kind of pain cycle that wouldn't correspond with your periods. I was really surprised how much pain this could cause. You don't need a doctor referral to see a pelvic physiotherapist and it has really improved my life a lot. I hope that helps you on your journey and hope you get the answers you need. 

 

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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