Rectal prolapse anyone?

[Bottomsout]

Feeling the need for a support thread. 20 weeks into a 70 week waiting list to see the colorectal team, minimal info or support and feeling very sorry for myself.

Already been through hysterectomy and anterior repair, several years ago now. What a different experience that was. Back in the day when you saw your gp promptly and weeks later were on a decent pathway, fully informed and supported. Maybe I was just lucky then, my gp was superb. Has left practice now and I feel totally at sea. Feels like the world is falling out of my bottom 😪

Anyone else been/going through this?

What are your symptoms? Is it a true rectal prolapse or a rectocele where the rectum bulges into the back wall of the vagina? Or a rectal prolapse where the actual rectum is coming out of the anus either fully or internally? Going through something similar at moment, and to be honest, private health care has been rubbish too. Long story.

Pm me if you'd rather chat privately x

Ah thanks Hooty. Feels a lonely place! Yes it's a rectal prolapse rather than a rectocele.

Sorry to hear private has been rubbish, flipping heck!

I'm fine discussing on here. Just appalled at the the lack of info.

What's been happening for you? How long have you had this?

5 months.
You can join the Facebook group Rectal Prolapse, Intussusception, Rectopexy and Resection Support Group if you want.

My main symptom is 24 hour a day constant rectal pressure/fullness/heaviness.
Have been told MRI proctogram showed no "definite" intussusception but I am still utterly convinced that is what is happening. Urogyn wants me to have an enterocele / rectocele repair and a uterine suspension to see if that might work, but I am 100% sure this is a rectal inner prolapse so will be a very expensive and probably worthless operation.
Join the group, there's a lot of good info and support.

Thanks, I will. I don't even know what intussusceptions, rectopexys or resections are so I've def some learning to do! 🤦‍♀️

Sounds a really tough situation to be in. It's horrible to be dealing with and awful to be facing surgery that's not what you think you need. Can you get a second opinion?

I too now have 24/7 discomfort and frequent leakage 🤢 am told I won't get to see a physio til after I've had a diagnosis, which I won't get til May next year. I get they don't want to give me exercises that may make things worse but I'm paranoid I'm making things worse anyway and need to know what I shouldn't be doing, as much as what I should! The waiting lists really suck.

I’m going through this. Two kids, two very difficult births. Had a pronounced rectocele and slight uterine prolapse between the two kids and for a year after the second was born… then started to recover by itself and felt normal again. 5 years later I have 24/7 rectal pressure and a heavy dragging feeling. I also have a tilted uterus (apparently, was told during smear tests). I think my uterus is basically sagging into my rectum. I mean I can actually feel it when I put a finger into my vagina! It’s very annoying and uncomfortable.

went to GP who was at a loss until I mentioned prolapse history and then they perked up a bit, referred me to pelvic physio and sent me away! Waiting list about 30 weeks here , considering paying for an appt with a private pelvic physio. Im unsure if I need to see any other type of specialist eg colorectal.

just about to put kids to bed but wanted to join and say I’m going through this too, and it’s horrible !!

Bottomsout - sounds like you’re seeing consultants etc first before accessing physio? It’s the other way around here !

You can, in most areas, self-refer for physiotherapy. I would do this, search this up on Google with your local area. Ask for a pelvic physio when you self-refer; they normally give you someone with a specialism, and I'm sure they will with your severity, just let them know on the form. You will still need surgery, but if it helps alleviate your symptoms, then that's great while you wait for surgery. They likely can also refer you to a better specialist, if they think you need that, after you see them. I'd try and see if you can do this.

Yes, I'd been told I need to have the diagnostics first, then physio! I went back to gp and they have made an urgent referral for pelvic physio. Also confused me by saying it was a rectocele on my notes, not a rectal prolapse, and couldn't lsee evidence of the latter on examination. It's definitely my rectum I'm feeling an issue with (and can feel lumpy bulge after going) so I am a tad confused, but pleased to have physio referral!

And sorry to hear of others going through it. It is horrible, but hopefully this thread can be a support to all

So glad you got a referral to the physio, you'll likely still need surgery but it will likely help as well even if just a little. Ask for any other scans as well, transrectum scan if possible and maybe any other tests they haven't done. Also if you have any more symptoms, ask about an MDT meeting or plan.

Thank you @TheLivelyViper that's really good advice.

Hi @Bottomsout , I wondered how you were getting on. I am still having episodes of rectal pressure that can last weeks at a time. I’ve had blood tests (all fine) and am awaiting pelvic physio and a transvaginal ultrasound (actually for something else but could turn up
sonething useful I suppose). Also awaiting fit test results. Am absolutely sick of this and doubly sick of not knowing what’s causing it.

I wondered if you’ve managed to find any answers? Once fit test results and pelvic physio assessment are done, and if I’m no further forward, I’m considering paying to see a rectum person!

👋 @Minecroft it's been a confusing old journey tbh but am due to see colorectal this week! It seems the gp expedited my referral to them (rather than to physio as I had thought) but my self referral to physio paid off as well! Except after a thorough exam they think I need Gynae not colorectal 🤦‍♀️🤦‍♀️🤦‍♀️
They could refer but strict rules about number of sessions before they can. So hopefully colorectal will do their thing and refer me straight away. Just hoping not another year's wait 🥴

I'm pleased to hear you've got physio and a scan in the pipeline though. Let's hope you get a good one who knows their stuff and can explain things a bit. Mine explained well the confusion around rectal prolapse vs rectocele on my notes and it turns out its a rectal prolapse but it stems from a rectocele, hence the need for gynae!

The good news is the physio gave me exercises and there's already been an improvement. She does think I've got torn fibrous tissue though, and not much can be done about that...

A thanks for getting back to me @Bottomsout . I seem to be on a similarly confusing pathway , I’m glad I’m not alone … it sounds like things may be getting clearer for you (but after a long and confusing journey)?

this struck me

”Mine explained well the confusion around rectal prolapse vs rectocele on my notes and it turns out its a rectal prolapse but it stems from a rectocele,”

as I have a history of rectocele (quite severe) but that is not what I am experiencing at the moment , this is different. (Although nothing is protruding out of my bum IYSWIM).

I do wonder if we have the same thing. Please keep me updated on your journey and any answers / discoveries you find along the way !

@HootyMcBoobys how are you doing?

Oh gosh, maybe. It does sound a bit similar? Let's hope the fit test rules out anything nasty for you and you get to see a physio/have the scan soon.

The not knowing what's going on is awful

Well I saw the surgeon today who was lovely. He's organising more tests including a defecography mri and a sigmoidography and given me a script for suppositories to help me empty my bowels properly, which I'm hoping will let me get on with my day a bit better. He does think we'll try to avoid surgery as far as poss due to poor success rates after previous surgery, and will likely refer me to gynae once he's sure there's nothing else going on. Which is a right relief tbh. Kicking myself for not asking how long a wait it might be for gynae referral but hopefully I might be able to do that through the newfangled nhs app, which is all a bit new to me! 🤞

So @Minecroft keep pushing for tests and to be seen and to get the answers you need. I saw 3 different GP's in the end and got expedited in the end, for which I'm hugely greatful.

Scuze my spelling!

hi @Bottomsout it sounds like you are making progress. Well done, and I hope
you continue to move things in a good direction. Since I last posted i got FIT test results back (all normal, lowest possible score) and spoke to the pelvic physio on the phone. I am seeing her in person for appt next week and she already told me she will be doing exams in lying and in standing. We spoke for ages and she says it sounds like posterior wall prolapse / posterior compartment prolapse. I do think my uterus has prolapsed a bit too and also anterior wall a bit. Very very uncomfortable now. I feel km seeing the right person as she is the clinical lead in this area and works closely with gynae / urogynae in a multi disciplinary team so I think seeing her and letting her have a good look will be the first step on my road to clarity! Currently my uterus is pushing very hard into my rectum , I think I might have high rectocele and a prolapsing uterus that’s sort of fallen into the “pocket”. I’m so keen to see the pelvic physio. She was all like “now I won’t do anything you’re uncomfortable with but I will probably need to examine XYZ….”
and I was like “YES PLEASE , ANYTHING, JUST WORK OUT WHATS GOING ON!”

I have private insurance but there’s a five year moratorium, and as I had a lower down rectocele post childbirth I need to check my medical notes (pretty sure there is a 6 year gap in symptoms) so I’m hopeful that if surgery is needed I’ll be able to get it seen to privately… but even it’s not covered I feel I’m heading in the right direction. The not knowing, whilst being in extreme discomfort, is just the worst.

in Scotland we do not have the NHS app sadly. please let me know how you get on with your tests and referral. Good luck!

She does think I've got torn fibrous tissue though, and not much can be done about that

are you by any chance referring to the rectovaginal septum / fascia? I am thinking the same thing. TMI but if I insert a finger vaginally and do a kegel, I can feel tightening in a few places but the “pocket” (which now contains my cervix) doesn’t move or react at all. I had wondered if the inner layer was torn/seperated

Not good.

I went ahead and had the rectocele and enterocele repaired vaginally with the urogyn. It hasn't made any difference whatsoever to the rectal pressure/heaviness/ fullness.
The operation wasn't bad at all, I never had a day of pain or bleeding - it just didn't work, and now there is a whole load of scar tissue at the entrance to the vagina which is great.
I've since had a second opinion on the MRI images and video from another consultant radiologist who specialises in MRI defecography. He reported that there is indeed an internal rectal intussusception (no reported by the first radiologist) and that this is probably the cause of the rectal pressure. He also reported the enterocele which the first radiology report didn't mention either.

SO.
I've been to a completely different colorectal surgeon who also specialises in pelvic floor disorders (it's VERY hard to find someone who deals with both) and he agrees that the rectum is the problem and not the rectocele etc. As I've had surgery 7 weeks ago, I now have to wait to heal from that before he can do anything. He is going to discuss it with the MDT team (multi disciplinary team of colorectal and gynae) then he thinks the outcome will be more surgery, this time going in abdominally and doing a ventral rectopexy with biological mesh to lift up the rectum from the inside. He will be in touch with me in a couple of months.

I regret not following my instincts and pursuing colorectal, I was just hoping the gynae surgery would be the magic bullet and its not. I'm scared to be honest, that the colorectal op won't fix things either and I'll be left like this.
Just have to keep hoping.

Oh no @HootyMcBoobys what an ordeal, but amazing you've found someone who covers both areas. It amazes me they don't all really, where prolapses are concerned at least. Im sure he wouldn't suggest putting you through another op unless a good chance of success?

Hopefully.
It's ridiculous that women are bounced back and forth between gynae and colorectal, so far I've seen 3 colorectals, one gynea and one uro-gynae.
There seems to be a real lack of dedicated women's health in the area of prolapse. A dedicated clinic with all the relevant disciplines would be great but sadly doesn't seem to exist, at least where I am.
The second colorectal surgeon I saw actually said "I don't DO pelvic floor, you're asking the wrong person, I got out of that game a long tome ago when the mesh scandal broke". Not very helpful.

I honestly don't know tbh - the physio didn't say, just observed particular weakness on one side and offered that as a liklihood. It makes a lot of sense to me, given my lack of progress after exercises, and ny general awareness of things not being right on that side. I'll be pushing for a scan, or whatever they need to do to find out, when colorectal are done with me!

Completely agree. I actually had no idea there was a division of speciality! I thought "pelvic" covered the whole lot 😩