Hi Ladies,
I am currently debating whether or not to get surgery to treat recto vaginal endo.
Could any of you tell me about your experiences, was it worth it?
Did any of you have to have a stoma put it. The idea is really putting me off the surgery, but what are the chances you get it?
Thank you!
I empathize it worried me alot and i delayed my surgery 6 months to try zoladex first, but in then end I did not have one, and the published bsge statistics do show that its a very rare event.
Every case is different, you need to ask your surgeon your individual level of risk. And also the risks of not having surgery eg endo penetration into bowel, also in my case the bowel being constricted by adhesions and stopping functioning, potentially life threatening.
Mine said to me I was in the middle of the severity cases hed operated in. He said you never know until in surgery as it depends on how friable the bowel is. All surgery carries risk. But i think because its the most serious complication they have to emphasise it to be really clear. There are other non serious risks that weren't mentioned, eg nerve pain, which i did unfortunately develop as coxxodynia, which is now gradually improving over time.
Ultimately its your decision about your personal balance of risk and can you live as you are now? I had ground to a halt, had tried all hormonal means and if id not had surgery my bowel was at risk so I have complete peace of mind that I made the right decision at the right time.
That still stands despite the fact that 4 days after surgery i was just very unlucky in that i was unfortunate enough to contract viral meningitis and be hospitalised with that for a week and have been left with lasting life changing after effects.
My surgery was successful my bowel can open without me fainting in toilets, and my bladder frequency is much better and my back pain and stiffness much improved.
The bsge surgery outcome stats for 2017 are published here in a table with total surgeries and how many needed resection abd of what type.
google.co.uk/url?sa=t&sourc...
Same for 2016
google.co.uk/url?sa=t&sourc...
Same for 2015
google.co.uk/url?sa=t&sourc...
Total surgeries by centre by year
bsge.org.uk/data-for-bsge-a...
Hope you find this useful. It reassured me alot. xxxx
Thank you for this
Thank you for your reply. That’s all really useful. I’m sorry to hear about your situation but it’s great it’s being sorted.
Hi, I hope you don't mind me asking - but what were your symptoms ofrecto - vaginal endo? I have endo but feel it's been missed. Have also got adhesions on my bowel, this is due to the endo and not previous surgery.
Hi, I didn’t heard of it until they found it during my surgery.
But symptoms I have from it are painful bowel movements on my period, nausea, painful sex in certain positions.
Why do you think you have it?
Ask them to check, they can do it with a rectal probe.
Thank you SO much for your response. My symptoms are EXACTLY as you describe. Also, little what feels like electric shocks in my rectum, left leg sciatica pain and deep stabbing pains. The pain during sex is really deep and so uncomfortable.
I've written a letter requesting to be seen by a specialist as I feel something has been missed. The lady that operated on me was general gynae and had no expertese in endo. I know they won't test me for it.
Yeah same as what you said, although I think it feels like a knife ahah.
Hmm, you’d think these days they’d all know what to look out for when they have the opportunity.
If you’re having the symptoms, insist to have a rectal probe examination. Not sure what department in the hosptial do that, they did mine while I was in surgery. But there will be someone who can look.
I’ve just tried researching what it is they did to me, but can’t find much. Hopefully they’ll know what I mean
Hi
I’m in exactly the same position as you. I have stage 4 rectovaginal endo and have my surgery in just under 2 weeks. I’ve been told a temporary stoma is a possibility and so scared of the thought.
I decided to have surgery first before starting IVF as my bowels have started to leak fluid / mucus on a daily basis (sorry for TMI) and I have a constant throbbing pain in my rectum and back pain.
I had an MRI scan done a few weeks ago and am told the endo nodule is very low down which makes putting a stoma in place more complex. I spoke up my surgeon the other day and he is now saying the chances of a temporary stoma are 50/50.
I thought it was best to get this done now as things are only likely to get worse and I’m going to have to have the op at some stage.
Hopefully things will be a lot better post surgery but I will let you know what happens.
Emma
X
Glad the facts helped Good luck to you xx Thinking of you.
Stoma Bag and stage 4 
Risks of child birth and endo
Endo and oestrogen and risk for blood clots
Pelvic scan snd vaginal scan / endo
endo pain getting worse and I'm at risk of losing my job.
