Bowel endo?

[LeaneWright18]

Hi ladies

I'm feeling confused.... docs and consultants suspected endo due to my (extensive) symptoms, I had lap a few months ago but the nhs gyno just removed a cyst and looked at my uterus to tell me "I'm healthy" and to "keep trying for a baby because that'll cure me". (Dont get me started on how upsetting that was to hear after 4 years of being off the pill and married!)

My GP is now sending me for a colonoscopy, its excrutiatingly painful to go to the loo and I bleed every time too, along with mucus. my pelvis aches all the time and the pain changes through my cycle, along with daily pain and aching in my thighs and bum, feels like I've ran a marathon some days. My periods are incredibly heavy and painful and sometimes have large clots. GP says she's testing for inflammatory bowel disease but I don't have any of those symptoms apart from bleeding, and with the noticeable differences in my symptoms as I go through my cycle I'm still wondering if they were right in the first place and its endo but the nhs surgeon didnt check my bowels only my uterus.

Has anyone had similar experience?

I don't know what to do, feeling lost xx

[JeanOsborne]

Hi you need to get a referral from GP to a BSGE centre. These are specialist centres that only deal with endo. General gynaecologists don't always recognise endo.

Have a look on the BSGE website for a centre near you. Then ask GP for referral to them.

[Sez73]

Absolutely agree with Jean - get a referral to a BSGE centre ASAP. If you have any bowel related endo, to be honest I'd rather get my fingernails removed than go to see an NHS surgeon. You must see someone highly qualified when the bowel is implicated. By what you've said, you are undoubtedly suffering with recto-vaginal endometriosis and need help soon. Your treatment at the hands of that NHS surgeon sounds disgraceful and is testament to why so many of the lovely ladies on this forum struggle so much with endo when we don't get the specialist help we need. A proper laparoscopy to diagnose endo does not simply mean the surgeon can look at your uterus, remove a cyst and think everything's AOK. My diagnostic lap checked my spleen, my kidneys, bladder, bowel, could de sac, pelvic side walls, ureters, uterus, uterosacral ligaments and that's just off the top of my head. To have the symptoms you have and for the surgeon to not check anything to do with the bowel is a disgrace. A "proper" diagnostic lap will report findings showing all major organs and whether endometriosis has been found. It will then detail where endo has been removed. A cursory glance that tells you it all looks OK is no where near good enough, nor, more importantly what you deserve.

Get a referral to a specialist endo centre (just ask your GP, it is your right) and see someone who knows what they're talking about as you need proper support for this. Any other questions, just get back to me and I'll do what I can to help you. I was failed by the medical industry for over 18 years and told all the symptoms and pain was in my head. It took a visit to Australia before I was finally diagnosed by a GP who actually listened.

Good luck and keep me posted how you get on. You need to take responsibility and get the right care from the right people, and soon!

Sxx

[Emmalouiseclarke]

Hi!

I'm so sorry to hear about your symptoms. It sounds like we have very similar problems!

I had a lap 3 weeks ago with an NHS surgeon and he was brilliant. He found endo on my uterine wall and uterosacral ligaments, adhesions on my bowel which he released, and suspects inflammatory bowel disease as well (I don't have loads of bowel symptoms but do bleed when I poo, and have horrific diarrhoea around my period. I have a review appt on Monday so will discuss with him then. I suspect I will need a colonoscopy with biopsies which doesn't excite me in the slightest, but I would like to know what's going on. It's definitely worth ruling out other things as well, unpleasant as it may be.

Did you get a letter from the surgeon copied to you about what was found on your surgery?

If you feel unhappy, it would be worth a second opinion for sure. I hope you find some answers.

Stay strong, ELC.