Hello
I am wondering if anyone had any experiences with bowel symptoms associated with endometriosis?
If like to know if anyone can advise on what investigations can help to detect/confirm bowel symptoms and if anyone had any treatment they'd recommend?
Thoughts on GnRHs?
Many thanks!!!
I Do! So much so they assumed my issues were just constipation and ibs and if my lap hadn't diagnosed me with endo I was going to be referred for bowel investigations to see if there was a cause there but... my endo is on my bowel.. my right ovary and entire back of my womb is stuck to my bowel so when I get flare ups it sets off the whole lot not just the female organs. They managed to unstick my ovary but my womb is still stuck as it was too risky to even attempt without a bowel specialist present so I'll have to have another op when the pain returns... I would say if but I'm not hopeful haha. So I get a lot of gut ache and pain when passing stool and it's just hell.. but at least now I know it's related. I don't know if there is any helpful methods for it other than finding out exactly what's causing it and if a lap would help.
Good luck xx
Thanks for your reply!
I can definitely identify with you when it comes to other symptoms, to be honest the constipation and associated pain with that can be totally debilitating.
It seems to be a case of weighing up risks and side effects of treatment with pain and symptoms...not easy.
When you say bowel specialist is that still a gynae consultant or gastro? Xx
I think it's a proper gastro they'll just be working with the gyne for the op. And yeah since my lap the bowel symptoms have been getting more pronounced I forgot how bad they could be for a few months but nope well and truly back 😂 x
Hi there, thank you for sharing your story i can relate so much, how did they find your endo on the biwel was it the mri scan that picked this up, iv had endo more than once had bith fallopian tubes removed and lazor treatment twice but im under a gastro consultant now for bowel issues im ashuming the endo has returned, im being passed for different tests but everything comesback clear, but the pain and symptoms tell me a different story,
Hi,
I have endermetriosis which is linked to my bowel. I had an MRI scan and a colonoscopy and they both picked up on this. Just waiting to have my opp now. I’m trying to change my diet as best I can, anything to help my stomach out.
Hope this helps
Good luck x
Hi! Thanks for your reply.
Good to know that there are tests that can pick up endo in the bowel. I'm having trouble getting a consultant to do anything about it, or even do any investigations, they seem to have the attitude that if it's not a womb issue it's not their problem.
As for diet ant suggestions/tips? I lived off oats and figs when things got really bad for a while! Xx
Hi, it was my gynaecologist that sent me for the mri scan and he also referred me to have a consultion with the bowel surgeon and then because of my mri results I had a colonoscopy. So I’ve now got 2 surgeons for my opperation. If you just search the endometriosis diet it will come up on google. To be honest there are a lot of restrictions but my cramps haven’t been as bad and the bloating isn’t as bad. Caffeine, alcohol, wheat dairy and sugar are all things to afford 🙈. If you drink tea or coffee try and go with the decaff as a start. I’ve now cut it out and only have the odd decaf tea. I’ve not been going out as much so not really been having a lot of alcohol. Hope this helps x
I had occasional faints going to the loo which got a bit embarrassing when I ended up in a and e.
A large recto vaginal nodule was found by my GP when I went with bladder issues and repodted Dyspareunia and chronic fatigue and back ache too. I'd been thinking I maybe had kidney infection or fibroids.
I had a transvaginal ultrasound and sigmoidoscopy and MRI scan. The Endo adhesions had pulled my bowel into a u bend. It was amazing I didn't have worse symptoms.
I had it excised in mid July. The op was extensive and am finally on a phased return to work 4 months later after various post op complications.
I tried mirena and GnRh. Tbh neither worked and RV Endo nodules are considered to be hormone resistant in many cases as they are thought to develop the ability to synthesise oestrogen anyway.
I reacted particulary adversely to zoladex myself so couldn't recommend it from personal experience but everyone is different and my symptoms weren't exactly typical and it has worked for others . Hormone treatment is a very individual thing.
Hi thanks for your reply!
Apologies if this is too personal and feel free not to answer but when you say extensive what does that entail?
Thank you for sharing about your experience of hormone treatment. I feel the majority of my symptoms are bowel related at present so it's good to know they might not respond so we'll to those medications.
xx
Extensive was the surgeons phrase and there are worse cases, but it was significant enough to be his BSGE reaccreditation case study and certainly my recovery has been prolonged. The surgery for me involved a deep bowel shave (narrowly avoiding a bowel resection) and excision of a 3.2cm nodule plus extensive adhesions distorting the bowel out of shape and excision also of Endo on bladder, utero sacral ligaments, and above both ovaries. The nodule was significantly bigger than the MRI had originally suggested and had unfortunately grown into and damaged the top of my vagina so I lost about 4cm2 of the top of my vagina and so in addition to excision i had to have a partial vulvectomy and vaginal repair surgery.
Ok thanks so much for the details. Do you feel the surgery has helped or is it too early to tell?
On balance it was the right thing to avoid bowel damage and I had to do it I was incapacitated with chronic fatigue but it's come at a price as I've had several post op complications that are lingering.
Benefits: less extreme exhaustion and brain fog, reduced back pain, no bladder symptoms any more. No risk of penetration of my bladder.
Cons: I now have nerve pain and carry a coxxyx cushion everywhere, I developed GERD which is horrendously disruptive and painful, I also experienced an unreasonable level of post trauma anxiety. I think from my viral meningitis readmission on day 4 postop.
Tstt: my Dyspareunia hasn't really improved and I can't really exercise and still get tired very easily and am not yet full time at work at 4 and a half months. Bowel / digestion still seems not completely happy. I'm a fair way still from living a normal life.
Sounds like that is certainly a lot to go through and recover from. Glad you feel that overall it was the right thing to do.
I also experience severe fatigue that I just can't fight, and will completely knock me out for days...i had no idea it could be directly linked to bowel endo. Kind of reassuring to know that thank you
I had a large rectovaginal nodule plus more bowel endo further up on the right, and my uterus and bowel were stuck together. I had chronic constipation that I could not get on top of no matter what i tried, and I would pass mucus from my back passage. I would get dreadful bowel pain during my periods that would last for 7-10 days, beyond the end of my period. I was told repeatedly it was IBS. I had a sigmoidoscopy which was clear. Detailed ultrasound at a bsge centre showed the endo nodules.
Had 2 courses of gnrhs, first course with HRT and second without and they didn't work either time but that said, I would still say it is worth trying because we have so few options.
I've since had a hysterectomy/oophorectomy and bowel excision and that has helped with the pain but not with the constipation which seems now to be a permanent problem :/
Thanks for your reply!
So even the large nodules took a detailed USS in order to be detected?
I've always had bowel issues around my period but it's started to extend beyond that and fitting less of a pattern making it less manageable.
Sorry to hear that the constipation hasn't eased since surgery. Have they said why they think that is? Xx
No, the ultrasound I had at my local hospital didn't show any of the bowel endo. They found the hydrosalpinx in my right tube and had some trouble finding my ovaries which in hindsight were both signs that something was wrong, but they told me the scan was normal and didn't warrant a referral to gynae. My understanding is that it takes specialist training to identify endo from an ultrasound and most sonographers don't have it.
I can only assume the constipation has continued because 25 years of untreated endo plus the surgery (they shaved the endo off my bowel). Sigh.
My nodule was first found by a ( very painful) manual vaginal exam by my GP. Transvaginal ultrasound doesn't look in the right area to see RV nodules.
BSGE Endo centres work in multi disciplinary teams which includes a bowel specialist as well as a gynaecologist and also a urologist if needed.
The mirena partially worked for me in that it stopped my periods for a bit so gave some relief, but it didn't settle (perhaps it pressed where my ovary cyst had been treated) so gave me mild abdo pain and didn't help my fatigue, bladder bowels or back pain all caused by the adhesion and physical pressure of the nodule.
An overview of RV Endo subtype characteristics, reading this is when the penny dropped for me. I'd just not put all the different symptoms together.
Hi Dee3e3e
I went to my GP in September with bowel symptoms related to my period. Thought I might get some buscopan.. however, to cut a long story short.. I then had a series of scans then a laparoscpy 2 weeks ago. Was diagnosed with severe endometriosis, in fact told I had a frozen pelvis involving ovaries, tubes and bowel. It was too complicated to remove any of the endo at that point. I have been advised to start decapeptyl injections for 3-4 months to see how it goes and I had my first one a week ago. So far not many side effects. I do feel less bloated and I am not peeing as often which makes me suspect there may have been some endo involving my bladder also. It has only been a week however and I don't want to speak too soon. I am lucky I suppose in that I am 48 and had my two children in late twenties without any problems. Looking back the endo symptoms started after that and I just put up with them. When I saw my consultant after the op she seemed to say I could stop and start the decapeptyl for years if necessary until my natural menopause. i am not sure if this is correct and I am not keen on that anyway. I am also not keen on surgery to remove the endo on my bowel as that has it's own risks. My plan is to try to persevere with the injections monthly for 4 months as advised, stop and then see what happens after that. If my symptoms return quickly I will see gynaecologist again to review. I don't know if any of this will be of any help as it is just my own experience and I am still struggling to come to terms with my diagnosis.
Thanks so much for your reply.
I think mentally I'm struggling to deal with the idea of inducing the menopause because I'm not even 30 yet...even if they say it's temporary with no long term side effects I just am not ready.
If you don't mind me asking what scans did you have and did the endo show up on them?
If my bowel endo was not too severe at the moment and there was a lower risk of complications I feel I'd rather have it removed than wait for it to get worse? But I'm not sure the consultant would agree to that.
Hi
I had ultrasound, ct and mri. A 6 cm "suspicious" cyst and elevated ca125 blood test meant they were originally going to remove the cyst and attached ovary. Although my gynae felt my symptoms were endometriosi the only thing that showed on the scans was the cyst. It wasn't until the laparoscopy the extent of endo was apparent. Then they decided they couldn't do anything other than biopsy.if further surgery is needed it will have to be properly planned.I must say I am tempted to ask to have the endometriosis removed from my bowel if my symptoms are same after coming off the decapeptyl. I agree you are very young. I don't think the decapeptyl is a long term solution anyway. I think with hindsight the endo has been running riot in my system for a long time. I feel foolish for not seeking help sooner. Best wishes xx
Thanks so much, really helpful to hear your experiences.
I think I'll start by asking again for further investigations. I will try and push to have a bowel specialist involved too. X
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