Endometriosis UK
34,658 members30,913 posts

Never ending

Dont even know where to start. Ive had 2 laps the last one in March this year under a fab endo specialist. He removed most my endo apart from a small amount on my bowel. He did remove lots from my bowel, bladder, pelvic wall, basically everywhere apart from my ovaries and fallopian tubes and with that I was told I was one of the lucky ones that should have no problems getting pregnant. My gynae did a cystoscopy at the same time as my lap and found I had interstitial cystitis which I'm now under a urologist for.

Anyway since my op in march I've hardly felt any better, the tugging pains I use to have constantly disappeared but apart from that still in massive amounts of pain.

Since the lap I've been getting awful bowel spasms, which I didn't have before the surgery. So I'm living on a long list of pills. Gynae consultant decided to do a mri a few weeks ago to see what was going on. I got a call a couple of weeks ago and had to go for results last night.

They said part of my bowel has collapsed and I need urgent surgery but under gastroenterology which is apparently been sorted today. The said most my endo was gone apart from the small amount on my bowel that that could not remove and they also said I had some scarring from having endo removed but this is not unusual seeming I had so much. Then they said I had adenomyosis in 2 parts of my womb.

I'm 31 with no children, boyfriend of 10 years who is supportive but I'm beside myself now thinking that the only way to help my pain is by hysterectomy to remove the Adenomyosis.

Im on the verge of losing my job due to 5 months off for lap in march and then further surgery for my interstitial cystitis in june. I'm back at work now on reduced hours but been told if I go off again before Aug 2016 that there is a high chance I will lose my job and that's the same even for more surgery they said. I'll be having the bowel op urgent so I'll have to go off again soon.

Think I just need a rant or maybe some advice if anyone has gone through the same with the Adenomyosis or the collapsed bowel? Was expecting some endo to be causing the pain that was maybe missed or had grown back quickly not that id have 2 more things going on

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