Rectovaginal endo

[Cactus80]

Hi ladies,

Just looking for some advice. Been diagnosed with rectovaginal endo stage 3 in the last year and currently waiting on a sigmoidoscopy as my rectum and uterus adhered. My symptoms seem to have changed over the last few months and wondering if anyone has the same issues. I'm always constipated but recently stools been very small and thin. I've been prescribed stool softener but no change. Apart from the shooting rectal pains and throbbing I am now experiencing a weird rough feeling inside like something is stuck. I've read nodules rarely penetrate right the way through the bowel but still makes me worry a bit. x

[Cactus80]

Thank you. I'm in Scotland. MRI had shown it in Dec last year then had a diagnostic laparoscopy in April this year Had a chat about the risks of surgery and have another appointment to discuss again in January. Just sort of stuck been appointments and overthinking everything really x

[Cactus80]

The specialist I saw in June and will see again in Jan is from Edinburgh western hospital which I beleive is a bsge centre and the same for the collateral surgeon doing my sigmoidscopy x

[EmaW]

Hi, sorry to hear about your diagnosis.

I too have rectovaginal endometriosis. Part of my rectum has been pulled up to one side and is stuck to something else with the endometriosis.

I used to only get problems going to the toilet while on my period but my symptoms changed too over the past year to what you’ve described.

I have the urge to go a lot of the time due to a pressure or heavy feeling but can never actually go. It’s so frustrating.

I’ve just found out I’m pregnant which a lot of people say they get relief from the endo pain but I am still getting a lot of bowel pressure so much so that it wakes me up at night. I wouldn’t say it hurt hurts but is very uncomfortable.

I was being referred to an endo specialist centre for another laparoscopy with a bowel surgeon to release my rectum but it will have to wait now. There are risks but I got to the point of feeling I’d rather deal with the risks and try to fix the problem instead of letting it get worse and penetrate deeper.

I did start taking CBD oil which really helped with my pain and spotting between periods but I can’t help but think once it gets so far in the bowels that it does damage, not much is really going to help it apart from surgically fixing it?

I hope you find some relief soon or hear back about your surgery! The constant waiting around is one of the hardest parts for me.

[Cactus80 in reply to EmaW]

Hi, first of all congratulations. Wonderful news. Yes sounds like me. It was alot more manageable but I feel its definitely getting worse. Like you, the bowel movement always feels so urgent then nothing. Never at my desk at work due to this but my colleagues are used to this now 🤣. X

[EmaW in reply to Cactus80]

Thank you.

🙈 It’s just awful. Can’t bring myself to tell friends and family properly about the problems I have except my husband. We kind of joke about it a lot now. He knows if I’m going to the loo I’m gonna be gone a while and gonna come back angry haha.

[Cactus80 in reply to EmaW]

Yeah totally eats up your day. Getting totally fed up with it tbh. Constantly thinking about. I hope your symptoms ease off for you at least a bit. Youve got lots to look forward to. Focus on that. Easier said than done I suppose x

[EmaW in reply to Cactus80]

Thank you. I do too but I feel maybe it’s a little too late and the only thing that will sort it is the surgery.

Anyway, I hope you get things sorted. Make sure you keep pushing for a resolution so they don’t fob you off or delay your treatment. Maybe see if you can get your appointment brought forward 😊

[Cactus80 in reply to EmaW]

Yeah the quicker the better for both of us. Thanks for all your advice. It's nice to speak to people who understand x

[Cactus80]

Yes Jack Stuart was who I saw in June and seeing him again in January. Got my sigmoidscopy with Dr Potter x

[Cactus80]

Thank you x

[StefaniaJW]

You need excision surgery with a highly skilled excision surgeon and possibly bowel resection ASAP. You cannot go on like that with stool softeners that don't work.

Please PM me to get the names of the most skilled excision surgeons working with a team of surgeons (including a specialised colorectal surgeon) and within the NHS.