Has anyone els had lesions on thier bowel ?
I’m stage four waiting for my op
For removal...
Bit worried now they’ve said I may need to see the bowel team before my op ... Been waiting since January for my op it’s terrible that they leave us this long !
Hi, i have just had excision of bowel endo, including adhesions sticking my bowel to my uterus and a large rectovaginal nodule removed as well as other endo removed. Not sure if lesions are the same as adhesions though? I saw it as a good thing when they involved the bowel team which meant they had a colorectal surgeon on standby during surgery incase my surgeon needed assistance depending on how bad the endo had affected my bowel. Hope you dont have too much longer to wait for the op x
Hiya
That sounds like exactly what mine is baring in mind the consultants Secutary was the one who told me , she didn’t say lesion but I assumed that was what it is , how are u feeling after all that did u need a bag at all ? Sorry for questions just sounds very similar xx
My bowel is stuck to my uterus too that’s where my main bit is behind my virginal wall x
Im doing ok but been told to take another 4 weeks off work (already 2 weeks post-op) and have just started sessions with a pelvic floor therapist to help with the partial vaginectomy recovery and my bladder is a bit iffy at the moment but expected and did need a catheter for a bit. I didnt end up with a stoma bag, they prepared me for if i would need one which i was very grateful for but were able to do a very deep shave. Feel free to PM me if you want to chat about it as i know the unknown was what worried me the most before surgery x
Hi lou840,
Sorry to hear what your going through, I’ve been having problems with stage 4 endo for only 8 yrs!! I started late on in life they think the contraceptive pill disguised the symptoms, to cut a long story short I had my left ovary removed cause of cyst that’s when they diagnosed stage 4, been having prostap injections on and off which have gave me some relief until the pain starts again had a laparoscopy 2017 which they had to abandon cause my consultant said everything had stuck together and I had a frozen pelvis his words were it’s a mess in there!! Told me I’d need to go to Oxford for any more surgery he wouldn’t do any, and that I’d end up with a Colostomy bag He said it stuck to my bowel, I m so confused cause I keep reading people’s stories about them having surgery for bowel endometriosis and wonder why I’ve never been given this option, I’m in so much pain on 2 different laxatives a day and pain killers just to go to the loo! 🥴, I just want some Quality of life feel really low sorry to moan, it’s just so hard as you probably know, best wishes x
I’m really sorry to hear this. I’ll message you tomorrow with my story to see if it helps at all as I had a similar case where my gyno who diagnosed my endo wouldn’t remove the bowel endo unless he did a hysterectomy at same time. I didn’t want the hysterectomy but needed the bowel endo removed ASAP as I was getting into a bad mental state due to the extreme pain and researched specialists that would just treat the endo. Will message you tomorrow, stay strong x
Hello,
I had lesions on 2 parts of my bowel which were individually removed by a bowel surgeon while the gynaecological surgeon in May last year. Always have to talk about the chances of a bag but I woke up without one. Depending on how they operate depends if the need the colorectal surgeon as if they respect it, they'll need them but if they can remove the cells they have them on standby.
Good luck. I felt so much better after having mine done!! X
Hi, I'm waiting for an op, could you please tell me what symptoms you had, my bowel feels like it's going to explore, and also so much pain on my right side and server bloating. Thanks x
Hiya lots of symptoms really bad bloating lower left groin pain everyday terrible bowel problems when in period
Ibs terrible
Not fun at all to be honest lol xx
Thanks for getting back to me, I don't have periods anymore I'm no the gnrh injection, but still have really bad pain everyday, got appointment on 23rd may to see gyno consultant and bowel consultant, had endo 30 years I'm 49 know,think on the CT scan it said thickness of the small bowel, but I have it on my sigmoid colon and uterus,god knows where else. Sorry about the moan just so fed up xx
Hello,
After every meal I had pain on my lower left side of my tummy and found it difficult to be anywhere but at home about an hour before needing the toilet (sorry for TMI). Wind was also uncomfortable as it was building but the day after my op, it was relieved instantly. I had it on my rectum and sigmoid colon as well as covering my left ovary, tube, uterus, bladder, uterosacral ligament, peritoneum, pouch of Douglas, pretty much everywhere it had been before which was also excised by the gynae consultant.
I know how draining it is to be in pain every day and really struggled to eat as I knew as soon as I had, I'd be in pain. It was so difficult. I really hope you get a good plan 23rd May. I had an MRI scan which showed my bowel endo pretty well. Good luck x
Thank you, glad your feeling better. Fingers crossed for the 23rd if I can wait that long lol xxx
I'm sorry. I had surgery in June 17 where they found my bowel endo and waited until September for the initial endo specialist and finally had my surgery may 18 so I appreciate how difficult it is to have to just wait. Can you call the gynae secretary and ask to be put on the cancellation list to try and get seen sooner?
Hi, it's a long story, I've been on depo injection for 18 years then started to have a few problems so they put me on gnrh injection, was getting on ok with that then some dickhead gyno took me off it after 3 injections to see how I got on without it. Well it came back with a vengeance, it took me 3 years to get back on it after being pulled from pillow to post to gyno consultant to bowel consultant both saying it was each others problem. So I'm sure in that time with no injection it grew like wide fire. Went to hospital with heavy bleeding which they tried to stop been to a&e loads of times, I'm not mardy person I've a pretty good pain threshold.sorry about the long post there is so much more, but won't bore you with it lol. Thanks again 😘
Oh bless you, that's terrible!! I'm hoping you're now under a gynae consultant that wants to put it all right. Have you been referred to a bsge centre? Sounds like you need one!!! I really hope you get some help as that's terrible xx
Hiya, they are supposed to be lol. Thanks again,I'll just have to wait and see how my appointment goes xx
I’m just so mad that they make us wait so long when they know how bad u are ! I was told I’m urgent ! But I’m 3/4 of the way down the list for surgery I hope they help us soon we shouldn’t have to live like this , I can’t eat most things I have bowel pain most days then terrible bowel problems without being funny I have pus coming out of me most of the time , not right to leave someone like this
Fingers crossed they sort us out good luck xxx
So sorry to hear this, no one knows or understands what pain we are in and how we manage everyday, life is hard xx
Thank you very much hoping mine is better after xx
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