Bowel Endo?

[SJ0514]

Has anyone seen a gastroenterologist after removal of Endo on ovaries? Post op check today after lap 13 months ago.. symptoms the same so referred me to a Gastroenterologist to check for Endo on the bowel. Had a colonoscopy 4 years ago which was clear but apparently this is not the way to diagnose Endo on the bowel.

I have all the signs of Endo on the bowel, excruciating pain with bowel movements, rectal bleeding, rectal pain which always coincides with ovulation/ period, severe bloating, gas diarrhoea and constipation alternating with nausea.

I wondered if anyone can realate to this and what tests do they do to diagnose?

Thank you ☺️ xxx

[Tulip1983]

My endo was diagnosed after an MRI which showed endo on the bowel. I was then sent for a colonoscopy to see if it had spread to the inside of the bowel.

[SJ0514 in reply to Tulip1983]

Hi Tulip thank you for your reply. Did they treat your bowel Endo?

[Tulip1983 in reply to SJ0514]

My endo is pretty severe. My uterus, bowel and ovaries have all stuck together. I was offered a total pelvic clearance but decided against such major surgery. I didn't want to go through surgical menopause (I'm only 41) and there's a chance that I might need a stoma. I take the pill continuously and I'm lucky in that my symptoms are manageable at present. If things worsen, I can always reconsider surgery. It's all pretty scary but only you can know what's right for you. xx

[SJ0514 in reply to Tulip1983]

Hi there, sorry late reply I have had a bad migraine, so not been on my phone much.

Sorry to hear your endo is so bad, it must be awful 😞 but glad you are able to manage your symptoms and you feel ok atm x

I took the mini pill (Slynd) for a while, felt ok, pain more manageable and my skin cleared up as I have PCOS too- 46 soon and still have acne! After 4 months I was so bloated, pain worse so I stopped it. They tried to get me to have the coil but tried this years ago and couldn’t get on with it. Hear some horror stories about it but a few say it has helped.

I will be very surprised if it isn’t on my bowel as I have all the classic symptoms.

Thank you for your reply and all the very best x

[99anon]

I had bowel endo which was also diagnosed by a mri. After so many years and struggles I had a full hysterectomy in Jan - I also had to see a specialist bowel surgeon before having the surgery and had both him and the gynaecological surgeon present on the day. Before hand I had a colonoscopy to see if the endo had penetrated into the bowel but it hadn’t - I was warned there was a risk of a stoma bag but luckily they managed to scrape it all away and no stoma required. They also had to unblock some tubes from my kidneys to the bladder that the endo had gotten to and remove my appendix for the same reason - it was a long recovery but I feel amazing now and the surgery has completely changed my life.

[SJ0514 in reply to 99anon]

Hi there- apologies late reply I have had a migraine so not been on my phone much. Sorry to hear you had to go through all of that, it sounds awful and must have been so frustrating- for you; did they tell you it was IBS for years too?

I had a colonoscopy 4 years ago and all clear but my symptoms coincide with my cycle every time, ovulation is the worst,l! I am now getting vestibular migraines before my period, it’s horrible!

So glad you are feeling better now, it must be such a relief. All the very best and thank you for your reply xx

[Kazh1209]

Hi Lovely,

I have all your symptoms. My colonoscopy was clear, it did however show that my colon is stuck and poo struggles to move through. I bleed and get a lot of pain. The doctors want me to start with a weak laxative even though I have proven my diet is fine etc. I think the waiting lists for op are ridiculous, I had a hysterectomy three years ago and I feel now that the endo has moved to the outside of my bowel. This disease is relentless xx

[SJ0514 in reply to Kazh1209]

Hi there Kazh

Thank you so much for your reply x

Sorry to hear you are still suffering even after a full hysterectomy 😞

I have always suffered with piles, had them banded numerous times etc. thought the pain and bleeding was from that but it always coincides with cycle, ovulation is the worst!

I take magnesium every night as it stops me getting constipation and helps me sleep. I have now started with vestibular migraines which are terrible before my period. I could be peri-menopausal too as I am 46 soon. It’s a minefield!!

Hope they can sort you out and all the very best xx

[Kazh1209 in reply to SJ0514]

Thanks lovely and you. I’m 41 and went through menopause at 38 when I had the op xx