Anyone here with bowel endo??

[LJC1416]

Hi all,

I’m just after a bit of feedback from anyone who has been diagnosed with bowel endo.

I was diagnosed with endo last year but there was no mention of it on my bowel. However I get this feeling that something is constricting my bowel. In my top left abdomen, I feel as though everything gets stuck there and nothing can pass at all for a few days and other days I can hear and feel everything trying to pass through. It’s so uncomfortable I want to rip my stomach open!

Before I had my laparoscopy I had a CT scan, an MRI and lots of ultrasounds and nothing was picked up. There is just no way there is nothing in there causing this.

Doctors don’t want to know, they just give me laxatives, but this is NOT constipation!

Could the endo here have been missed? Does this sound familiar to anyone who has been diagnosed with bowel endo?

Any advice would be appreciated 😊

[Sabrinacolada]

Hi,

I am so sorry you are going through this. I can fully empathise with your circumstance.

Ultimately at laporoscopy in June I was told there were adhesions and attachment of the reproductive tract to the sigmoid colon. I was told this was freed at surgery. But I realised I couldn't defecate, it was becoming more string like and the straining was causing severe pelvic pain and even right sciatic symptoms. I was told to take more laxatives!!!

I was concerned I would get a stricture so just kept going back to doctors and then the surgeon ( private). He was reluctant but eventually approved a mri. That found a rectovaginal nodule, I saw a private colorectal surgeon who said this was the source of the issue thus my instincts were unfortunately correct. I later found out at laporoscopy the rectovaginal region cannot be visualised completely which in hindsight makes alot of sense (there's a video on one of lindles post which goes into visualisation at lap).

Are you under the care of an endometresiosis centre? How long ago was the MRI ? And your laporoscopy, when was that? Every surgery has the risk of further adhesions / scarring. Repeating imaging could see if endometresiosis has progressed since then and if there could be any endometriomas, nodules, scarring etc. Be mindful that it also depends on who is interpreting the mri since adhesions are not always directly assessed and sometimes indirect signs are looked at but larger nodules would be more obvious.

Unfortunately I found via nhs although one good gp took my signs seriously she was limited to reffering for a colonoscope ( also important in my case to rule out other pathology but it was negative since the nodule is not internal). I was already on a waiting list to see the endometresiosis specialist via nhs but I am still waiting 5 months later! I found paying to see a specialist in endometresiosis privately was the easiest way to get a plan for longer term. Thus now I am awaiting surgery to remove the nodule (a depressing 1 to 2 year nhs wait) and will start zoladex soon to see if it can alleviate my symptoms.

❤ Sabrina

[LJC1416 in reply to Sabrinacolada]

Thank you for your reply! I had my lap in August last year and the MRI was about 2 years ago. The attitude of the bowel consultant (who I was referred to and then ordered the MRI) has been rubbish since day one, he basically laughed and said my discomfort was a pulled muscle because I was a personal trainer?! So I feel like he would not have looked at my results with the attitude of trying to resolve my problem. This issue of mine has never been taken seriously and even after being diagnosed with endo the doctors will not help. They just prescribe laxatives, peppermint capsules and tell me to go on the pill 🙃 one male doctor even said to me (over the phone, so hadn’t even seen/looked at me) that there was 0% chance I had endo on my bowel because I had no bleeding when going to the toilet… that is ONE symptom of bowel endo, not the only symptom! During my lap they found endo had attached my rectum to my uterus, and even with this I had never had bleeding!

After being diagnosed last year I have just been left to get on with it. So right now I am just in discomfort every day and it feels like I have nowhere to turn.

I may have to try the private route now.

Good luck to you ❤️ I cannot believe we have to wait all that time for surgery or pay tens of thousands and go privately!

[Sabrinacolada in reply to LJC1416]

Oh this is awful I am so sorry. It is so bad alongside chronic pain, fatigue and everything else endo brings we are also trying to advocate for ourselves when being dismissed. I also felt ignored raising my bowel symptoms being told to take more laxatives! Its crazy how we are expected to live like this.

Since endo was attached to the rectum this sounds more likely severe stage. They should have reffered you to an endometresiosis centre after. It may be worth looking for a gp with an interest in women's health. That really helped me to be taken seriously but also she has been very good at expediting refferals and discussing pain releif options. Its worth discussing your surgery and signs regarding rectovaginal endo regrowth or even if deep infiltrating endo may be possible. Seeing if the GP can reffer you to an endo centre would be a logical step. The pitfall is the nhs route is so slow which made me so anxious I have ended up going private where possible.

It's a shame to spend money privately but hun the symptoms sound so suspicious for bowel endo. Specialist imaging and seeing an endo specialist could hopefully help you get some answers and the care you need.

❤ Sabrina x

[Purple_Badgers]

Hi! I wouldn’t be particularly surprised if you had some endo that had been missed. A lot does depend on the skill of the person interpreting the scan/doing the surgery. Also if this is a new pain for you, perhaps they didn’t think to look closely at that particular area?

I had a stricture/blockage in the bottom right area of bowel, around the appendix. The way you describe your symptoms seems very familiar to me and makes me wince to remember how my poor bowel was struggling to carry on.

I had weeks and weeks of trying different laxatives. Deep down I knew it wasn’t “ordinary” constipation, but I ignored that gut feeling (sorry, bowel pun!) and blamed myself for not drinking enough water, eating enough fibre, getting enough exercise etc. I was back and forth to the GP, but it took an emergency A&E visit and operation to sort it.

Anyway, it could be endo or something else giving you this particular trouble. In any case, please don’t give up on getting help with it. If laxatives are not working for you, or only work temporarily, then they really should be looking into it further. Good luck xxx

[Becky2894]

I totally empathise with your situation and sorry to hear what you’re going through. I have had an mri which shows bowel involvement and adhesions between the sigmoid colon and uterus and am on the waiting list for surgery (likely to be 18 months) so even despite knowing it’s there it’s made no difference other than they give me a tonne of laxatives (I’m on about ten a day now). Your symptoms sound similar and just to clarify I didn’t get rectal bleeding either so it sounds really shocking what you’ve been told! I really hope you get a plan in place and sorry to hear you’re going through this x