Bowel Endo advice needed please

I have been diagnosed with severe rectrovaginal endo and am currently waiting for my 2nd lap on the 13th May at a specialist endo center in cornwall. I was given a 3month Gnrh analogue shot on the 18th Feb (so it should still be working!) but about 10 days ago I woke with horrendous stomach cramps and diarrhea, it is still going on everything I eat and drink is going straight through me!! My stomach is now very sore to touch and is now sensitive enough and bloated to be very uncomfortable walking or in any position other than lying down.

Sorry if TMI but the diarrhea has blood and muscus and I have also started lightly spotting (strange as the GNRH shot should still be in my system) I went to the GP and they took bloods and stool sample and the bloods came back with high level of inflammation but haven't got the stool sample back yet. I'm now on antibiotics to see if that helps but at the moment am still going to the loo about 15 times a day!!

The gp is convinced it isn't endo and thinks its Inflammatory Bowel Diesease of some sort and I can't get hold of my endo specailist so I just wanted to know if anyone with bowel or intestine endo has these symptoms at all, could it still be endo?? For my lap in May they have arranged for a bowel surgeon to be there.

Also has anyone else had experience of bleeding before the hormone injection should have run out, can they run out early??

Thanks so much guys, I'm really concerned so any help would be great! :)

13 Replies

  • Hi - the hormone injection only attempts to control what is a result of oestrogen, so the inflammation from endo itself, but unfortunately it won't do anything for damage that the endo has done. If you have severe rectovaginal endo it has unfortunately probably caused damage to your bowel that the injection won't help as that is structural and not hormonal. The endo centre will be hoping to excise all your endo nodules and repair things if necessary. You should keep trying to contact your endo specialist as GPs are unlikely to know what is involved. Leave a message with the secretary and keep chasing but to be on the safe side I would write a letter addressed to the main consultant detailing all of this and send it to the centre by recorded delivery. I do feel you need to be safe rather than sorry and don't rely on your GP.

    Click on my username and have a look at my posts, particularly the last one on rectovaginal endo to help you understand. x

  • Hi Lindle thank you so much I didn't think about writing a letter I will do that next week if I still have no luck. I'm just worried that being this ill may delay the operation and I feel like I've waited forever to get it sorted!! Do the symptoms (acute diarrhea for so long, with the mucus and blood) correlate to rectrovaginal endo? I've never had it go on for more than 2 days before.

    I'll read your other posts now thanks so much!

  • There is no way of knowing how different people are affected as it will depend on just what will be going on with you. But even on the injection to hopefully reduce endo inflammation your bowel is likely to be being irritated and setting off IBS type symptoms. Thank goodness your surgery is soon and is being done in a proper centre x

  • Hi there

    I have just come out if hospital having had the same syptoms as you .i am Also waiting for lap( in cornwall strangely!) for adhesions and small bowel endo .I had a ct scan that showed up diverticulitis I had two days of Iv antibiotics and now have 5 days of oral

    So your gp may be right .

    I was so shocked with having another diagnosis on top of endo which I have had for years .

    The antibiotics may clear things for you

    As for the GNRH problem I've never had spotting with this so I can't be much help with that

    I hope yup get some answers soon

  • Ohh just thought have you tried contacting the endo specialist nurse at cornwall hosp

    Private message me and I can dig out her number for you if you don't have it

  • Hi Mablesky thanks so much for replying, I do have Cathy Dean's number and have left messages on both of her phones and with the receptionists but no one gets back to me! Perhaps the gp is correct then if you've had the same type of thing as you say it just seems so unlikely that I would have 2 different conditions! Fingers crossed the antibiotics help soon I'm only on day 2 so hopefully they'll start working soon,

    Thanks so much for your help and good luck with your op at Truro x

  • That sounds painful, I was also going to suggest contacting the nurse but it sounds like you have already done that. I am also waiting to have surgery at Cornwall!

    I have stomach cramps when I eat certain foods but don't tend to get diarrhoea.

    Sorry I can't really offer any advice but hope it sorts itself out. xx

  • Hi Pemberton24, I have all these problems and will be attending an appointment at Stepping Hill endometriosis centre on Tuesday as my ovaries are both fused to my bowel. I have been on prostap for almost 12 months and can assure you it won't do anything for your bowel symptoms, I go from diarrhoea to constipation and bloating all the time so I really understand how you feel. I have tried something called colpermin, peppermint oil tablets, supposed to be for IBS, that you can get on the shelf and they really help. Hope your surgery goes well take care Heidi xx

  • Thanks for everyones replies, just a follow up after receiving my blood test results Truro have said that the op has to be postponed as they think the surgery was too major to have while I'm so unwell. I am really really disappointed as I've put so much into waiting for this surgery and hoping it be the start of a new pain free life! I have to go and see a GI specalist next week and see what he says and once they have new blood tests and the all clear from this new doctor they will re book the surgery so that'll properly be months and months down the line :(

    Thank you for everyone's help though xxx

  • Hi I had recto vaginal endometriosis very severe and was also treated by the end I centre at treliske!! I was in just a lot of pain and didn't show many bowel symptoms surprisingly. I had a few operations a few years ago to remove everything and the team is brilliant especially Mr Faux the bowel specialist couldn't of got through it without his support. Just recently though about a year after having my daughter the pain is back and have a upset stomach pretty much most of the time, I've put it all down to the endo being back unfortunately 😕.

    Hope you have your op soon and it goes well xxx

  • Hi Rahholden, thanks for your reply! I had my colonscopy which came back as clear so they rebooked my operation in Truro, last week I had phone call to say they had a cancellation so I am booked in for next Monday! I am super nervous but everyone has said lovely things about the team so fingers crossed it all goes well. Thanks again xxx

  • Let us know how you get on good luck xxx

  • hi everyone! I thought I'd give everyone an update, I had my op on Mon morning and am finally back home! All went well as far as I can tell and Mr Brynes was very happy but they did end up doing quite a lot! They suspected and found severe rectrovaginal endo. They had to unstick quite a lot and had to shave a lot off the left side of my bowel but luckly didnt have to cut away anything deeper. They cut away areas in the pouch ofdouglas, around the front and back of the womb, both sides of the pelvis and did a lot of work around my bladder. On plus side my ovaries and womb look healthy! :) I think thats everything I can remember but sure I've missed loads! It took a while to be discharged as my body temp and blood pressure kept dropping & once they took the catheter out I still couldnt pee! I've had to leave with a catheter fitted for a week which they've said isn't uncommon but I'm a bit panicked about it! I'm worried in a weeks time that my bladder still won't work!!?? Also worried about getting UTI as i get them all the time normally! If anyone has any experience with having the catheter for a week after surgrey please let me know how it all went for you. Right back to sleep for me :) x

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