Fused uterus and colon- surgery experiences?

[Ejt86]

Hello, I've recently been diagnosed with endometriosis. The location of the endometriosis means that my uterus and colon have fused and I've been referred for surgery to separate the two. I would be really interested to hear others' experiences of similar surgery, positive or negative. Did surgery provide pain relief? Thanks!

[Crazycatladyjones]

Hiya hope u dont mind me asking did u have an MRI that showed this or a lap? Amy what kind of symtoms do u have?I saw a endo gyne specialist and he suspects this going off my symptoms 🤦‍♀️ from this page I have read both positive and negative experiences the thing with this endo isnits all so individual for everyone its so hard cos I read differnt things and I dnt know sometimes weather this page makes me feel better or worse x

[Crazycatladyjones in reply to Crazycatladyjones]

Sorry Im so bad for typing quick and not reading back and making lots of errors hope it makes sense 🙈

[Ejt86 in reply to Crazycatladyjones]

Also - really sorry you're going through the same thing. It's horrible and it's so hard to get any answers. ❤️

[Ejt86 in reply to Crazycatladyjones]

Hi! This was identified on an MRI.

In terms of symptoms, I have pelvic pain front and back, spreading down my legs. Worst pain is on my right. I get a dull ache all over with shooting/ burning pains within the aching. Also a pressure/ bearing down/ pulling sensation from my pelvis (hard to describe!) Always had really intense period pain but pelvic pain all month (esp ovulation onwards) last 6 or 7 years. Spotting and breakthrough bleeding. Vary between constipation and diarrhoea at period, with horrendous smell (sorry TMI I know! But think bowel symptoms may be relevant- MRI also showed endometriosis on bowel and rectum for me). Hope that helps but happy to answer any other questions if I can.

[BetterDayzAhead in reply to Ejt86]

Hi, re you waiting on an NHS Surgery, your symptoms of "period pain and pelvic pain 6/7 years) why have you gone on so long with this? I'm an identical case to yours so can PM you my experience of Surgery! X

[Ejt86 in reply to BetterDayzAhead]

That would be great- thank you! 6-7 years is the length of time I've had those symptoms for. I've not been waiting for surgery that whole time. I've had other appointments over the past few years, but these have focused on other conditions. Endometriosis didn't show up until I had an MRI recently.

[Rose153]

What a bloody shame for you. Isn't this absolutely awful!!!!!! This is the same for me. MRI results last Thursday show endo bloody everywhere, particularly around rectum, on bowel on c-section scar, near bladder, ovaries..! I have a lap booked next week to see what they can remove and then it is looking like a total hysterectomy. My lovely surgeon says it looks stage 4 from what he can see. I've honestly cried a lot since Thursday but one day at a time I guess. I have all your symptoms above except breakthrough bleeding. I also have adeno. Everything bowel wise has ramped up for me over the past 6 months, I just knew something was wrong, but I didn't know what. My surgeon is a complete gem, he cares, is very gentle but so positive. I am so very lucky in a lot of ways. I have my daughter and I am so thankful. So much luck for your surgery. Do you know when it might happen? x

[CryBaby91 in reply to Rose153]

Might sound like a daft question but when you had the MRI did you have to go in head first all the way in? And how long were you in there for roughly? I've had an MRI before but it was on my brain, just wondering if its different when you have it looking at your tummy? I'm so horrifically claustrophobic, but I want to push for an MRI to see if we can identify where things are before they do the lap. Xxx

[Rose153 in reply to CryBaby91]

Feet first and head out!! You'll be fine... DO IT! Also they can sedate you if you feel nervous or they can stay with you. The worst part was my heart beating out of my chest after the buscopan but that subsided after a few minutes. I was in and out of the hospital in 30 minutes!! xxxx

[CryBaby91 in reply to Rose153]

Phew! That sounds much more manageable for my claustrophobia, it's the head first that scared me, and I did that twice haha. I'll give my consultant a nudge on the 5th August when he rings, he said an MRI wouldn't be necessary and to just do straight to lap but that was in his private practice so he may decide to do one if I'm waiting 3 months for the lap anyway! Thanks for the info xxx

[Ejt86 in reply to CryBaby91]

Feet first for me too, although my whole body was still in the scanner. I was in for about an hour and a quarter. Possibly obvious (though not to me lol!) but you need to keep your face mask on during the MRI. If you're worried about feeling claustrophobic I think you can ask to be sedated. Definitely worth looking into- hopefully means all the surgery can be done on one day.

[CryBaby91 in reply to Ejt86]

Oh gosh! That's a long time! Longest I've had to do is an hour, the woman doing the scan said she's never seen someone's legs shake that badly but their head stay perfectly still! I went for another last year but they let me take off my face mask during because I was alone in the room and they cleaned everything after I finished anyway. I'm surprised they had you wearing one! I've never had the sedation during, though I've asked and been told my GP needed to sort it so I don't know who to ask! New hospital this time though so it may be better, I'm hoping so! Xxx

[Ejt86 in reply to Rose153]

Oh that sounds awful! Mine is less extensive- all focussed on the colon/ rectum/ bowel area. I was a bit surprised because I get a lot of what I think is ovarian pain, but my ovaries look clear. Hoping that is a good sign fertility wise.

I'm looking at private and NHS options. I know I'd been seen privately within a month but I'd like to find out about NHS waiting times before committing. The extra steps with the colon and bowel make private pretty expensive, although it will be worth it if I get good pain relief.

Great that you have a supportive surgeon 👍🏻 Do you know what kind of timescales you're looking at?

[Rose153 in reply to Ejt86]

That is a great sign if your ovaries are clear!! I am having my lap next week privately, so that will be less than 2 weeks since my results. It would be 18 months to 2 years on NHS. I don't know about the hysterectomy, my surgeon thinks the lap will get me some time to see if we can do that on NHS, but I am not sure. It all depends on what he sees next week. I am in Scotland so if you are in England it might be a bit different?

[Ejt86 in reply to Rose153]

Yes, I'm in England. Trying to find out about NHS waiting times but suspect I'll end up going down the private route. It's all been going on for a long time and I just want to get some relief as soon as possible. Also worried about things deteriorating further if it's a long wait.

Great that the lap will be so soon for you. I really feel for you- the idea of a hysterectomy must be so hard to come to terms with.

[Rose153]

Yes, also you can get one done privately too. I'm in Scotland and non urgent MRI on NHS is 4 - 6 weeks waiting, I was 4 weeks. My lap is private. My surgeon does both NHS and private.

[Bluesea7]

My endometriosis was stuck to all over and to and my bowel and bladder, I had full hysterectomy, ovaries removed, stitches to bowels and bladder, it's been 3 years now, so far I ok, and I can go a loo better now , I dont have to have spear tests now, I'm dealing with menopause ect , hope they get you sorted .

[Ejt86 in reply to Bluesea7]

Oh gosh that sounds really difficult. Good to hear you are seeing benefits a few years down the line though.

[Bluesea7 in reply to Ejt86]

Thank you I'm pain free now and I hope the endometriosis dont reoccur , as I'm hearing some people have.

[mrskiki]

I have similar, they had to leave my uterus there during hysterectomy because it was stuck to bowel. No idea why the MRI didn't show it in my case, I don't think they examined that area of it. They are just leaving mine as I'm older they're hoping it wont get worse. Not sure what happens if I have to have the hysterectomy in the future though.

[Ejt86 in reply to mrskiki]

Fingers crossed for you that it doesn't get worse.