Just wondering if anybody has had surgery to remove a rectovaginal nodule, obliterated pouch of douglas endo and to unstick the bowel from the uterus?
I am 27, I had a diagnostic lap and some endo removed but I have been sent to see a colorectal specialist alongside an endo specialist to discuss the removal of this more serious endo.
I am very keen to have it removed as it impacts my life so badly. I also want to start a family.
I have been made aware that it is a risky procedure and there is a possibility that it may result in a stoma. I just wondered if anyone had any experience of this as I am just not sure what to do. I am worried surgery may worsen things.
I take 2 Desogestrel a day currently which helps a bit but not completely. But off the pill I am unable to work really. Does anyone have any suggestions of medicinal treatments or anything that helps?
If anyone has any similar experience I would be grateful for any advice.
Thanks all x
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I had rectovaginal endo nodule and had surgery in 2018 to remove it. Mine was pretty bad so unfortunately I did end up with a stoma but I had it reversed after 7 weeks. The only lasting impact is a bad scar on my tummy as the wound didn’t heal well (I don’t think I had the right level of care taking care of it). My symptoms were much better after the surgery so it was the right decision for me. I went on to have IVF treatment and now have a beautiful 20 month old daughter and am currently 17 weeks pregnant with my second. My endometriosis has been pain free whilst pregnant and breastfeeding my first for the first year but came back and was very painful so helped me make my decision to get pregnant again.
Ah no problem at all. I know how hard the decision to have the surgery is and if I’m being honest, I didn’t really expect to end up with a stoma but it was Sod’s law I did. My endo nodule was very low down in my rectum so I think that’s why I had to have the stoma.
My symptoms were a constant throbbing in my rectum and I had to started to leak poo a little on and off (so grim I know). I had to wear a sanitary towel every day and I thought this is only going to get worse not better and I didn’t want to have major surgery after having had children (although I suspect I’ll have a hysterectomy in a few years).
It definitely got rid of the symptoms I had before but my endo my no means went away and I felt pain in other areas instead. I also think the endo has spread to my left glute and i sometimes get throbbing in that.
I think it’s quite rare that you end up with a stoma but it’s good to discuss it at lengths with all of your consultants. I also had to meet with stoma nurses before my op to understand what life would be like living with one. I can’t say I enjoyed having a stoma for 7 weeks but I was very lucky I was able to reverse it so quickly (although I really pushed for it to be asap). I also had private healthcare and this was pre Covid so I was treated fairly quickly.
I hope this helps. Please let me know if you have any other questions.
Thank you so much for sharing, it's really kind of you.
Not at all, yep, my symptoms are pretty similar now, it's good to know that stopped for you! - so sorry to hear you still suffer with pain in other areas though, sincerely hope you can get that sorted x
No worries at all and sorry to hear you suffer with similar symptoms. It’s so hard! I hope you’ve got some good painkillers to help with any pain. I used to have take tramadol to fully get rid of the pain.
The recovery after the reversal was fine. I had to spend 3 days in hospital as I wasn’t able to leave until I had done my first bowel movement and I felt really sick so struggled to eat the gross hospital food. They warned me I might have some accidents as my bowels adjusted but I didn’t at all and actually things got back to normal fairly quickly. I am definitely more regular now than I used to be and get less constipated than I did before.
Life with the stoma took a bit of getting used to and I had to eat a very bland and beige diet (nothing healthy) which is the opposite of my normal diet. I was very lucky it was only for 7 weeks.
All in all, I really don’t regret the surgery and think my endo would have be far worse if I didn’t have it done. Totally a personal choice though. I was off work for a few months as didn’t feel up to going back in between the operations and then needed a couple of weeks recovery post reversal.
Please let me know if you have any more questions. Always happy to help.
Oh gosh I am sorry to hear that, I take codeine and paracetamol at the mo, but actually the Pill has helped me to manage pain quite well in comparison to what it was, it's the IBS symptoms and mucus that are having the worst impact on me. Off the pill the pain was excruciating though, I also get terrible PMS symptoms and migraines.
I'm glad to hear your recovery went well afterwards, that's so good to know you had relief. And so good to know you are glad you had the op. You have been through such a lot, wishing you lots of positive and lovely things for your future.
Work is such a difficult thing to manage with this condition. I have learnt that you can only do what you can do.
Thank you so much for this advice I can't tell you how helpful it is. I am so grateful xx
That’s great you’re able to manage your symptoms with the pill. I was told by a doctor to run the pill back to back and no have periods which helped me a lot before trying to conceive.
I’m so glad I’ve been some help. I wish you the very best of luck for the future and if you do have the op, I hope you have a super speedy recovery and everything goes well. I’m here if you need anything;
I had a diagnostic lap in a BSGE hospital 6 weeks ago, but I had been on the waiting list for 4 years.
I had suspected I had it a long time ago as all of my pain was in that region, so hounded Doctors until I got referred to Gyny and then I asked to be sent to a BSGE centre. Eventually a GP told me they could feel something on the outside of my bowel during a rectal exam and I was referred to Gastro and Gyny. I had a clear colonoscopy, endoscopy and Flexi Sig, I had loads of ultrasounds (all came back clear). After having the lap and being diagnosed I was sent for an MRI scan.
It's such a hard thing to diagnose, my advice would be to ask for an MRI (I asked for an MRI a lot but was always told it wasn't needed), or ask to be put on the waiting list for a laparoscopy if you feel comfortable with that. I know how scary it can be to have a surgery to diagnose something (I was utterly convinced before the Op I was wasting their time and I was going to wake up without a diagnosis) but knowing what it is has made a big difference to me. And even if I had not received a diagnosis it would have been good to know I had tried everything.
Hi I had it removed by Gynae at hysterectomy, there was supposed to be a colorectal surgeon, because there wasn’t, a part of my bowel was tethered from one side to another had to wait for further op over a year later. Please make sure you have both parties there to give you the best chance 🙂
Make sure Gynae is aware that you want to start a family so fertility and getting the correct treatment is important.
It’s a bit better since I’ve had gallbladder out as well. Still getting some issues, but also found out recently that I have some sort of heart failure, more at activity, and this can cause inflammation of other organs so could be that, I think more likely that.
Try to make sure they include checking small bowel for adhesions whilst they are there.
There are various anti inflammatory diets, low fodmap, Paleo, lactose free.
Diclofenac suppositories can be helpful at times, works better than opiates.
SIBO can be linked with Endo. I tested positive for IMO but they are now doubting the test results, not just me, so hopefully retesting soon.
I’ve just started Lions Mane, a mushroom, it’s for the nervous system (sm bowel feels as though it’s effected) I think that’s working a bit.
If you do try herbals, just one at a time otherwise it’s hard to know if something works.
I'm so sorry to hear that, I hope that can get sorted for you soon!
I have tested positive for SIBO actually, I tried the diet and antimicrobials for a long time but didn't see a huge difference. The only thing I find does change things is going sugar free (It is so hard to avoid sugar though!) - I felt my energy was a little more stable.
Thank you for the recommendations! One at a time is great advice as well!
Interesting about SIBO, was that in the NHS or private? It is hard to avoid sugar, I do try but then find I’ve bought something with it in without realising.
I bought the FoodMarble device to try and see what my body tolerates. I need to buy their test kit. It does Hydrogen and Methane. There is one NHS consultant that recommends it.
I payed for a private test initially, but I have managed to get an appointment for a SIBO test with my Gastro consultant although I have not had that yet.
I hadn't heard of that before that's interesting! Thank you!
Hi love. This time last year I was navigating exactly the same thoughts & it did seem so overwhelming then. So sorry you are going through this. I was awaiting surgery for severe endo, bowel involvement, recto-vaginal, recto-cervical nodule, pouch of Douglas, back of uterus to bowel & large endometioma stuck to colon. It also transpired I needed endo removed from both my ureters. A mess really & debilitating for me at the time.
Really want to encourage you. I went for stoma fitting etc & had all the relevant bowel prep before surgery - but in my case the nodules were able to be removed/ shaved away without the need for the stoma. I’d spoken to quite a few people about the process of a stoma to prep myself & although it is a huge undergoing - it is normally quickly prioritised/ reversed with positive outcomes. Good to prepare yourself mentally for the possibility - but they’re not always needed.
I truly thought my body was probably too damaged to conceive - but currently in my third trimester & expecting our rainbow kid in October. Despite being lined up for IVF we fell pregnant naturally within a few months of lap surgery.
Goodness thank you so much, feeling a bit overwhelmed by how supportive this community is.
I'm sorry you have been through all that, and thank you for sharing. I have been trying to prepare myself for every outcome, it's such a overwhelming decision.
It makes such a difference to hear real life experiences, it can be a lonely thing to go through. I really hope things continue to go well for you and huge congratulations on your pregnancy! x
This severity of endo must only be treated in a specialist endo centre so were you already under one when you had the lap? Normally when this is found at a diagnostic lap you would then be referred on to a centre.
I had my Endo op privately by one of the top guys (I know your not allowed to name names, so I wont) but it was really strange the way he went about it and I wasn't clued up at the time that this wasn't quiet normal.
I saw him at a consultation and explained all my symptoms which where awful.
He told me he suspected Endo but wouldn't know until a laporoscopy. (I had only had an ultrasound by this point, which the doctor had told me suspected endo)
He never did any examination of me internally at the consultation. I was given a date to have my laporoscopy and was told the surgery would also be done at the same time to remove whatever was found which I paid for in advance.....I must say, I did think it was strange at the time that I paid almost £6k upfront before knowing if I had endometriosis or not for sure, I did think if its not Endo then surely this is an expensive Laporoscopy??? But I was in such agony at my wits end, and he is regarded as one of the best in the country.
I had my room booked and everything at the private clinic, and it was strange now looking back after reading everyone else's experiences, as everyone else seemed to know prior to surgery and have a team involved depending on bowel/bladder issues. I didn't have any of this as I didn't know for sure 100% that I even had Endo, yet had paid 6k and was booked in for potential Endo excision if found at my first ever laporoscopy.
When I woke, afterwards I was told by him that I had stage 4 Endo, uterus was stuck to bowels, Endo in pod. It had spread to my left and right side of the abdomen....he told me he had removed it all and separated my bowels from uterus. It was deep and infiltrating. I stayed in hospital for 2 nights and had a catheter fitted.
Looking back I worry that he performed all of this without a bowel/bladder team and separated these important organs.
I was also told at the follow up appointment that he suspected ademonyosis as well.
It did start to return after 6 months, but I manage it myself naturally now with supplements and diet, which works quiet well, however I do still have problems with my bladder and bowels, and do worry that this wasn't really dealt with by a team, but rather 1 person.
I've always had the urge to go for a wee often, and the feeling of a full bladder...I also get a painful tugging feeling just at the point where I need to poo, it comes on sudden and makes me double up, and I have to go to the toilet straight away to pass motions.
Does this sound strange to you on how I was treated, or am I being paranoid.....for all I know this specialist could be qualified as a bowel specialist as well....I just worry he was messing about with organs he shouldn't of and its trou led me for years, as my bowels and bladder are not quiet right.
I'd really appreciate your thoughts as your really knowledgable on these matters.
Hi, sorry to interrupt your post, you’ve had a tough time. Have you got any follow ups with him?
I know what you mean, I’m beginning to think that some surgeons can multi task to a point, but only since gallbladder out by a general surgeon. They can sort adhesions as well.
My uterus etc was similar but I know he avoided my bowel question after but said I had Rectovaginal Endo, which he didn’t think was there.
Did he see fibroids? I had three show on scans that turned out to be far more than that.
Digressing 😂
Can you send an email to ask about the pain and if there is anything amiss with the bowel or bladder that may need other work.
It’s a long winded way of asking if he got it all 😂
£6K doesn’t sound too bad as he took so much away. I paid £3K for more diagnostic and some removed. He said it was too inflamed to do much and he hadn’t planned on that, thought just a bit of superficial.
Yeah funny you should say that about the fibroids, yes they spotted fibroids and cysts on the ultrasound, and i think i had a cyst burst inside me as the pain was sudden and absolutely agonising.......what did your fibroid turn out to be?
I suppose I could email, but I've put it off but always had this niggle about it all!
It's such a horrible illness, I'll be so glad when they understand it more. And so many of us suffer with it as well! X
When it came to hysterectomy the fibroids had their own blood supply so it got a bit complicated. Had to have a blood top up after. So funny in recovery, a dr asked if my face was always red, I’d had a reaction to the blood 😂Always swore I’d never have one, then couldn’t wait to get rid.
The niggles are distracting and frustrating. It’s hard to move forward when we keep thinking about it.
I’ve got one from gallbladder, said he’d look everywhere but no mention of small bowel, again. Three out of four ops I’ve asked.
I signed up to the BSGE mailing list and earwigged on their webinars. Last one I asked why communication is so poor with patients, they didn’t say much apart from there is a unit on the RCOG training. One unit! 🤦♀️
The Edinburgh Uni research is really good, there’s a webinar on the Endo UK site.
Far more sufferers than they think as well. It’s not the first condition they go for in suggestions.
Yes the doctors don't seem to diagnose, they also just want to show various medications at it! Which I don't think most of them work, just make you feel worse in yourself!
That's awful about you having a reaction to the blood! ......I didn't realise fibroids have there own blood supply.....mine were never removed....I was told they were small and clusters of them....although my periods are a lot lighter lately so I've not been too concerned about them....my cysts were also left, again I was told I had 2, one was bigger but they weren't concerned about that.
One unit is ridiculous isn't it 🙄.
That's useful to know about the Uni and the webinar as well, thank you so much.
So agree re meds, they’ve no idea how to handle things these days.Gastro says it’s the opiates causing constipation so I’ve stopped them (winding down already, never just stop any) still got constipation and bowel pain. I’ve asked GP for back up that symptoms were there before any meds, yet to find out on that one.
That’s great periods are lighter. Fibroids aren’t always a concern or have their own blood supply, mine had probably been there a long time. I don’t know anything about cysts, it could be if not causing any issues safer to leave than drain, maybe the come back bigger if disturbed.
Have you decided to email? Putting your mind at rest is important as well. 🙂
They prescribed me the 30/500mg coedein painkillers which are strong, but do make me constipated. 🙄....I always try and get the good bacteria replaced in the gut if taking extra painkillers, as they destroy the good bacteria. So eating kefir yoghurt is a good way, and taking probiotics also.
Yeah Cysts may be best left alone, im not sure.....altho they can burst, which I had once and the pain was just awful ....I don't think that's the norm tho.
I'm definitely going to do something, not sure how to play it though, may write to them, or above them to complain. It's difficult to know what to do. I don't have much confidence that I'll get anywhere tbh as I believe they all look out for protecting themselves in the medical profession unfortunately.
Hope you sort your constipation out, maybe try eating more fibre in your diet as well.
If a Dr is blaming them, not saying they are wrong, keep an open mind with everything though.Probiotics are good for most gut conditions.
I’d recommend requesting a copy of your records in advance so you have a copy. It helps with formulating an email. Tough one on who to contact first. I’d probably do a digging email to ask questions rather than a complaint, it’s more likely to back up the complaint 😂
I think I still have adhesions in small bowel area and recently tested positive for intestinal methanogen overgrowth which causes constipation. They are querying results so planning a retest.
I use probiotics and add linseed to yogurt most mornings. I still have little appetite though so eating is generally hit and miss.
Thanks for info, I will let you know how I get on.
Also just to mention that serrapeptase is good for adhesions, I find anyway. It's a natural supplement that helps to dissolve them and can help when you have bowel issues with Endo.
Might want to do a bit of research on that yourself though. Xxx
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