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Endometriosis UK
37,975 members33,220 posts

Feeling rotten

After a really long struggle to get diagnosed, I was diagnosed with endometriosis nearly 2 years ago. A lot of my symptoms were bowel related so I was mis- diagnosed with crohns (patch lesions in my colon) IBS and PCOS based on cysts on my ovaries.

When I had a my laparoscopy, in recovery the consultant told me there was some inflammation on my bowel and they’d found patches of endometriosis all over my abdominal cavity, I also had been diagnosed with ashermans prior to surgery and had the adhesion removed (they kept asking me if I had had a D &C/ miscarriage- I have only ever been pregnant, successfully once, lucky Mum to one). In my follow up there was no mention of the bowel inflammation in my notes and I was discharged.

Roll forward to now and I am struggling with bowel movement, it’s like it get stuck behind my vagina. I have to use suppositories, which work every time. If I don’t it feels like I’m going to prolapse and sometimes I get little splits. If I don’t push/ use suppositories, I go out and it’s painful, I get sweaty, hot and urgency and likely to have an accident. Also quite often it feels like I’m being ripped apart when I do have bowel movement and have to suppress screams. I’m exhausted, I have a constant ache in my lower abdomen- no pain relief works and I use a hot water bottle when I can.

They fitted the coil but after being persuaded to trial for a year I finally got it removed- it unfortunately didn’t help. I am using the pill and having a break every 3 months, with every break things get worse and I only bleed with bowel movements- a lot.

So I’m being re-referred to a specialist centre and scared things will get missed and I’ll be made to feel crazy

1 Reply

Big hugs. So sorry you've had such a difficult time.

I had a large RV Endo nodule that had distorted my bowel anatomically into a c bend and gave me fainting problems on the loo and horrific Dyspareunia and chronic fatigue among other symptoms.

If it helps, I can say i have had nothing but excellent treatment with my BSGE accredited Consultant ( I am private with insurance) . Which was very reassuring after having a very bad experience ( also private with insurance) with a general gynae who had misdiagnosed me as Adeno and wanted to do a hysterectomy ( because he could, ignoring the GP's nodule findings).

Its been a hard post op journey as despite successful though extensive surgery I unluckily developed viral meningitis afterwards, which gave me several nasty complications.

On the plus side 5 months on from my op, my bowel, bladder and back symptoms are all very much improved.

Hope this helps xxx


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