AIBU to ask for advice re. prolapse

[Propol]

I’ll try my very best to keep this brief:

• 2021 - went to GP about symptoms of rectocele. Having to push on perineum every time I had a bowel movement. Was referred to the colorectal surgery department at local hospital.
• Hospital appointment was cancelled by them five times, spanning 12 months, and by the time I actually had an appointment, I was pregnant with my second baby so they paused my referral for 12 months.
• Started pregnancy consultant led because of suspected rectocele (never been examined at this stage) but after initial appointment, consultant said having a second baby vaginally would make no difference so sent me on my merry way. Midwife led the rest of the pregnancy.
• Finally had my colorectal appointment in March 2023. Short examination; not ‘diagnosed’ with anything and then referred to the trust’s women’s physio but told there actually wasn’t one so don’t hold my breath. He tells me that what I thought was piles is actually part of my rectum protruding out of my anus. Now referred to bowel nurse and to have a colonoscopy.
• Colonoscopy comes back fine
• June 2023: bowel nurse does a thorough examination and tells me I have multiple prolapses but she’s not surprised I haven’t been diagnosed because doctor’s don’t care. She tells me to buy a pelvic floor trainer and also provides me with a device to use as an enema so I don’t need to pass bowel movements as frequently in the normal way. She says I’ll receive another appointment with her. I haven’t.

Since then, I’ve heard absolutely nothing from anyone. My prolapse is getting worse: I still don’t actually know what sort it is but I can feel large bulges coming from both ‘sides’ inside my vagina. The opening is completely blocked. It is nearly bulging out of the vaginal opening. I also have a worsening in the amount of tissue coming out of my anus when I pass a bowel movement. Usually, it goes back ‘in’ on its own but sometimes, I have to push it back inside with my fingers. Sorry, this is gross.

I know I should have chased this up before now but I don’t even know who to contact anymore. The colorectal people just seemed to be worried about bowel cancer and once the colonoscopy came back clear, I don’t know if I’m discharged from them. I have no way of contacting the bowel nurse, who doesn’t even operate in a hospital in my county.

To make it worse I don’t even really understand my condition. Is this really bad? It is dangerous? I have a 6 year old, a 1 year old and a full time job as deputy head in a secondary school. I am completely and utterly overwhelmed by all
this and also quite scared and I don’t know what to do. If anyone has any advice or experience of these types of symptoms and if/ how they were successfully treated, I’d be hugely grateful.

If anyone knows how I get seen by the appropriate department now, I’d appreciate that too. Do I call my GP?

Thank you!

Oh gosh, you poor thing, I’m so sorry. I had surgery to correct an anterior & posterior prolapse but yours sounds more severe than mine. Yes go back to your GP, and ask for a gynae referral, you do not have to live like this.

I had my surgery in 2013, it was successful and all still in place, but I remember very well how debilitating it is. It’s not dangerous per se, but it’s fucking awful to live with and it can be fixed. It is a major operation, I was off work for 7 weeks, but it was well worth it. Please go back to your GP.

Oh bless you that sounds bloody awful. Go back to the GP and tell them how thoroughly awful it is
In the meantime try not to force, wee or poo
Are you taking laxatives/stool softener - if not, do
My physio said to try and avoid ever being constipated
She also recommended decaf coffee and plenty of water and cordial
Best of luck
Get on the phone on Monday 🤞🏻❤️

Oh you poor thing that sounds brutal. Get back to your gp asap.

OP, in your shoes, I'd google private colo-rectal surgeons in your area and pay for a consultation (£200-300 usually). Yes, it's a lot of money but it should be worth it. Especially if you ensure the consultant is also NHS as they can then put on their NHS list. If they are not also NHS, they will send a letter to your GP who can then refer you back to colo-rectal at your local hospital based on the report from the private consultant.
Also,with a private consultant, you get more time to discuss your options: scans, treatment, surgery. NHS appointments tend to be rushed.

You are definitely going to have be more proactive.

The first step is to see if you've actually been discharged. Ring up the hospital switchboard and ask to be put through to the colorectal secretaries and see what they say. Or ask for the bowel nurse team.

If you're still under the care of the hospital, ask them when you'll been seen again. Stress you've worsened and need a review.

If you need a new referral, ask your GP to re-refer you (you might need a consult before they'll do it) but you absolutely can get it sorted, it'll just take a few phone calls (hopefully!).

Thank you everyone. I feel so stupid for leaving it this long but I suppose I was burying my head in the sand a bit and also life is pretty hectic so it wasn’t a priority.

I’m going to get back on to the GP on Monday. I’m not sure who I should be referred to: either back to colorectal or to gyne. I think I was also referred to gastro once but can’t even remember if I was seen by them at all.

No one has explained anything to me at any stage through this. Except the bowel nurse.

@DamnUserName21 I’m going to see how it goes with GP on Monday but then follow this advice. I’d rather this was all dealt with sooner rather than later. Thank you!

@edwinbear thank you. It’s so reassuring to hear that yours was successfully fixed. Can I ask what surgery you had?

You poor thing, this sounds absolutely dreadful.

I don't have any personal experience, but I have 2 close friends (both in their 40s) who have had prolapse surgery this past year. One had had the anterior and posterior vaginal repair. Posterior colporrhaphy and anterior colporrhaphy
procedures, front and back essentially.

As others have said, the recovery is slow and you must rest a lot in the first few weeks (I think it's 2 weeks complete bed rest & then a further 6 weeks recovery, no driving etc). Do have a supportive partner? Or family close by?

However, post surgery they are both fully recovered & back to leading normal lives.

They did both have to go privately though as the NHS wait list was so long.

Both of them now feel very strongly about how under reported these prolapses are, particularly in younger women, as they are far more common than many realize.

Wishing you well 💐

Go back to your GP, put pressure on them.

This sounds like me. I kept going back to GP, I was given appointments months away and getting cancelled. I was taking laxatives and wetting myself. When I got pregnant in the middle, after giving birth I'd been told they'd be in contact, yet had actually been taken off the waiting list! I was moved hospitals in the end, who were so quick and efficient.

@Flourshiba really interesting. I am now 35: was 32 when I first went to the GP but this was initially caused by my first pregnancy/ birth when I was 28. The bowel nurse I saw said she sees women all day, every day, who are in exactly the same situation!

@Crazydaze82 did you have surgery in the end? How was that?

I don’t know how bad your prolapse is but I had one following a 3rd birth in 2022 and it’s been very successfully managed by a pelvic physio.
it was paid for my by healthcare but the initial consultation was only £50, I’ve had 6 sessions over 8 months, it does come and go depending on how active I am that day, but it used to be there the whole time.
Mine was based in Bishops Stortford in Essex but you can find a list of them on the squeezy app.
A good pelvic physio will be able to tell you just how bad your prolapse is and help tell you what to do and say to your gp if more intervention is needed

@Cheeseismyfavourite I am about 20 mins away from Bishop Stortford. Would you be willing to DM me their contact details? I’d like to do this purely to find out what I’m dealing with!

I have a bowel and bladder prolapse and have had 2 different types of pessary fitted. Unfortunately for me, neither worked as they fell out but you could ask your gp for referring for one of these. It holds everything in place. Also, just be careful not to lift anything heavy, jump or run as these can make it worse. If you exercise, be mindful of what you do. Google has lots of help. There is something called Hyperpressives, think that's what it is, too that's supposed to be good.
Hope you get the help you need

I had an anterior and posterior repair. I was fortunate in that my surgeon wouldn’t use mesh, he felt there wasn’t enough data on the long term effects so he used the ‘old fashioned’ method of cutting & stitching. It’s held very well. As others have said, I need to be careful for life in terms of avoiding heavy lifting (no weight training), I also can’t run, but I can still do spin & swim. I’ve also found keeping my weight down helps, if I put a bit on I can find I feel a bit of ‘pressure’. It’s no bad thing in terms of keeping me motivated to stay at a healthy weight.

Day to day, I’m completely back to normal. I remember pre-surgery, the constant dragging feeling, everything ‘falling out’ when coughing/sneezing. It took over my whole life whilst I was living with it. Please do get back to the GP and keep pushing until you get somewhere. It’s no way to live.

Pm sent

First thing I would do is join Benenden, it's around £15 a month & after 6 months, you can claim for private treatment. Prolapse surgery is on the list of operations you can have. If you are overweight, try & lose some weight as this would help both your prolapse & help with the operation & recovery. Do some investigating & find out who would be the best surgeon for what you need, if you use Benenden you can also claim for physiotherapy afterwards to help your body relearn how to use your muscles & prevent it happening again.

In the meantime, you can take cosmocol/movicol daily. You can buy it over the counter but you could see if your gp will prescribe. It keeps stools soft and is safe to take long term.

Having searched online I came across this thread, I’m 64 and have at last been diagnosed with a large rectocele! I have been suffering for about 10 years and had mentioned to my gp 3 times and been dismissed and told at my age I just had to live with it. So hard to talk about anyway so eventually gave up. But I’ve been married 38 years and this started to affect our physical relationship…. So having admitted the problem to him eventually I took action - I got a referral to a private gynae consultation who suggested physio, did this for 6 months no change. She then referred me to colorectal, he then referred me for tests in London. I went to my GP having paid about £800 on consultant fees and asked that he refer me for the tests on the NHS - he did but after 3 months of hearing nothing I rang the consultant sec who said they were booking people that had been on the list for 18 months already and they were being given appts 12 months away so she said I’d unlikely be seen on the NHs for 2 years +! So I paid £4000 to have the tests privately. Luckily I have private medical insurance which will pay for the surgery but none of my OP appointments or tests.
My operation is Jan8th next year and I would love some help with how I manage post op with #2’s - I can't go without inserting fingers into my vagina to help evacuate my bowel. I am petrified of how will be able to go??
For anyone suffering go to the GP and keep going as even when taken seriously it will take ages to move through the system!
Love to hear from anyone - thanks

@Retiredrenovator
Sorry to hear about your issue. I am not experienced in this area but I will imagine you will be given plenty of laxatives to keep you regular and soft. I would encourage you write down your questions to discuss with the consultant beforehand. All the best with the procedure.

Just to add, you will likely not bowel open the first few days post-op. But laxatives will be definite.