Any old prolapse! Uterus/womb prolapse, rectocele, cystocele, enterocele, urethrocele, incontinence, pelvic floor, anterior and posterior repair, TVT etc part 5

[Piplysmelie]

This is thread 3 of a long-running series of posts from ladies suffering from pelvic prolapses to support each other through the process of diagnosis, repair and recovery.

Here are the previous threads:
Thread 1
Thread 2
Thread 3
Thread 5

Info from BBC Health

What is a pelvic prolapse?

As the muscles, ligaments and supporting tissues in the pelvis become weaker, they are less able to hold in the organs of the pelvis such as the womb (uterus) or bladder.

Gravity pulls these organs down and, in the more severe cases, may appear through the entrance to the vagina.

A variety of problems can occur, depending on where the weakness lies and which organs are able to descend, but in every case there is some degree of prolapse of the vaginal wall, which begins to invert (rather like a sock turning inside out).
Prolapse of the womb or uterus is the most common prolapse, affecting as many as one in eight older women to some degree
Prolapse of the bladder, known as a cystocele, is less common.
Prolapse of the urethra (the tube that carries urine out of the bladder) is known as a urethrocele.
Prolapse of the intestines is quite rare, and known as an enterocele or rectocele.

Symptoms

Symptoms depend on which tissues descend, and how severe the prolapse is.

They may include:
A sense of heaviness or pressure in the pelvis.
The appearance of a bulge of tissue in the genital area, which can be quite alarming, and is often red and sore.
Urinary problems, such as having to urinate more frequently, feeling the need urgently, being incontinent (losing control of the bladder) or, conversely, being unable to pass urine when you need to.
Pain in the pelvis or lower back.
Sexual problems, including pain and decreased libido.
Constipation.
Vaginal discharge or bleeding.

Treatment and recovery

Once a prolapse has developed, surgery to fix the affected organs is usually the only way to cure it effectively.

However, another option is to use a device known as a vaginal ring pessary. This is rather like a contraceptive diaphragm or cervical cap. It's made of silicone or latex, and placed in the vagina to push back the prolapsed organs and hold them in place. Many women happily manage their prolapse this way.

Oh Daisy, I could weep with you - the frustration! I would definitely go for a second opinion privately

Oh daisy I can totally understand your frustration. It took from Oct last year for me to get a referral. I would go back to your GP and explain that you have private insurance but you need the referral to initiate it. My OH department also advised me to select the consultant that you want ahead of time to help speed things up. Good luck x

Daisy, if you are keen to move the process on, use the private option through your DH's policy. Also, an enterocele is not bladder related - as far as I know. It is an intestinal prolapse further up than a rectocele. I had a suspected enterocele, but it turned out just to be a long high rectocele in the end.

Bladder, I would have rather have my eyes poked with sticks than have a spinal and be conscious while I had my legs akimbo & an hour plus worth of repair work done to my inner lady bits! General worked well for me & I came around with no pain at all. Obviously, as the general and local anasthesia wore off, I felt the discomfort increase but I was well topped up with pain killers, so can honestly say that I was never in actual pain.

Thanks for the replies. I saw a registrar today I think, but another doctor came in and chaperoned the internal exam (they were short of nurses!) and it was her who diagnosed the rectocele and enterocele. They disappeared out the room, I heard them discussing options, then he came back and said he had discussed it with his consultant and this would be the way forward... He said that as physio had helped previously (even though I said it wasn't a marked improvement and things were getting worse inspite of regualr PFEs) it was the "best course of action" I can't help but feel that they go down this route to weed (no pun intended ) out the women who aren't gutsy enough to fight for surgery and go away thinking that a little improvement is better than nothing.

No assessment of pelvic floor. They didn't even ask me to squeeze during the internal exam, only cough...and even then very little wee escaped as I was flat on my back and with an empty bladder! At the end of the day after a six hour shift I can't even stand up without leaking if I'm even vaguely needing a wee.

As an aside though, my GP seemed to think that my pelvic floor itself was in not too bad a shape when I saw her initially.

The consultant lady seemd more interested in the recent stitches in my thigh where I had an accident with a craft knife and the three in-situ stitches on my shin where I had a mole removed last week. They probably thought I'm one of those mad, addicted to surgery types that you see on Channel 5

Lord, I got that all the wrong way round....it was small rectocele (bowel) and a moderate cystocele (bladder). Getting my celes mixed up

I'll dig out some info I picked up at the Spire last time I was there, and try and get another opinion.

I had lots of specialist physio and used cones as well as some sort of electronic feedback device, and it made no difference at all. I could have been clenching until the cows came home and nothing would have got better.

My surgeon explained that there are very, very few people properly trained to assess and repair pelvic damage properly in the UK - you might be talking about a couple in each hospital. So it really is a lottery when you go to be assessed. Your best bet is to find someone who has a specialist interest. I am happy to pass on the name of my surgeon if anyone is in the East of England - he mostly does NHS work but also does private appointments, and is a leader in the field. He did a fantastic job on my bits, absolutely fantastic (although it took a few months for this to become properly apparent as they were a right mess beforehand and there was a lot to do).

Daisy - what they have told you has made me really . If you have an enterocele (I had a large one of those) then it has absolutely nothing to do with your pelvic floor - it is a true hernia of the upper fascia (support tissues) that stop your guts invading your womb area. Basically you get a whole in this support system and your intestines fall down it and end up stuck between your vagina and rectum and it is your pelvic floor in all its glory that actually is stopping your loopy intestines from falling out completely. (This is very common after a hysterectomy as it is your uterus that helps to keep it all out) What utter rubbish they utter. Yes, they have all been given 'guidelines' to follow, and three step procedures to go through before surgery, BUT, when there is no other solution then why oh why do they carry on with this charade??? ..!!!!!

Having got that off my chest I shall now go back and read the other posts

Daisy - I should have read the other posts first - so you don't have an enterocele! Well, PFE is rubbish anyway and only delays the agony of deciding to go for surgery. My pf was so strong it spat the speculum out at the consultants face when he asked me to cough!! I still had a cystocele and another rectocele, but my perineum was a disaster so that having been fixed this time has made all the difference - feels like nothing will fall down now! xxx

Roseanna - are you still around? How is your rectocele repair holding up as I know you were worried at 6 weeks? I am feeling a bit paranoid that it hasn't worked again, but maybe it is my anal sphincter muscles that are sluggish? Has anyone else had problems getting going with a BM? Just the initial exit (sorry TMI) doesn't seem to happen of it's own accord, although BMs are nice and straight. So I sit for a while and just wait for things to get going (even though I am bursting!) or use a suppository to kick start. Anyone shed any light on this?? xxx

Sure - as I said to the bloke who does my garden (I don't care who I tell these days.. ) you can be like Arnie Scharzenegger 'down there' and it won't make the slightest bit of difference if your prolapse is big enough! I totally agree with you. Besides having a 'Fallen Fanjo Roadshow' to educate the women of this land, we need to all be invited to medical conferences across the country to sort out lazy and inefficient consultants who fall back on the physio route as a way of fobbing us off don't we? (Rant over ) Sorry to hear about the BM trouble - cant advise you as I still have a rectocele, but have you been back to ask your gp? Might be worth the question....

I've managed to bypass the physio route straight to surgery (NHS) too, the GP wasn't sure whether to refer me to the consultant or the physio as she said sometimes the gynae does bounce you back to physio first, but after consulting with one of her colleagues they referred me straight to gynae who didn't mention physio.

But, I had been referred to gynae for it about 5 years ago (after the birth of DC2 when I realised I had a small prolapse) and they had recommended PFE, which I kept up for a couple of years and then let slip as I was not having any problems (until about 3 months ago). It meant that although I hadn't actually had physio my records say that PFE has been ineffective. Without that I might not have managed to get straight to surgery.

Footle - I daren't mention my consultant's name as he is the kind of person who would log on to MN to see things from a patient's perspective and I really don't want him to see what I've been discussing (he has three late teen daughters so is very 'up-to-date- with this sort of thing!!!). My other disaster consultant was Nicholas Hill, working at Princess Royal hospital in Farnborough (but by naming him I'm sure the other consultant now knows who I am as I have questioned Mr Hill's expertise quite a lot in the last 6/7 months!! (day surgery for v. large enterocele/rectocele/cystocele!!!???? - no wonder I was back in theatre in June , not to mention the surgical removal of unabsorbable sutures in Feb!!!). Can defo recommend my current consultant xxx

Fen - which garden was that - the herbaceous kind or the lady one!!!??? Lol x

Sure - cheeky devil! Definitely the herbaceous kind..... Haven't let anyone near it for some time!

I'm in Leeds if anyone knows a good consultant here!

I did say that the previous pfes made a degree of difference. Should have kept my Fin shut, lol. Though they will have my records on file. I also maybe didn't stress how debilitating it is. I said I leaked during sex, but not that my sex life is practically non existent as I'm too embarrassed about losing control, and when I do take pity on my extremely understanding DH, I have to hold things open for him . And he asked how many pregnancies and if I had had any sections, but nothing about the length of time I was pushing before I needed the sections or the third, forceps delivery. And I found talking to a young, good looking male doctor quite difficult. All I could think of was "why do you want to spend your days looking at broken lady bits, why?" rather than explaining how irritating the flappy bit I'm left with after an episiotomy actually is on a daily basis.

Would my age be a factor in not offering surgery straight away? I'm 43.

O
On a positive note though , thanks to this thread, I now know how to aid the transit of my bms and am much less uncomfortable in the bottom department! It has also given me the courage to seek help :)

I just hope that, in time, I'll be able to advise others after my journey is over!

Kept my Fin shut??? Eh?

How did autocorrect get that instead of gob? I am not a fish, honest!

Oh Daisy - you really shouldn't have to put up with all of that. If you can bring yourself, write or phone the consultant with the stuff you didn't say and stress how it's affecting your life. Pfe's aren't going to make your 'flappy bit' go away are they? Write and say so. Please don't just put up with it, you have every right to have the decision explained to you again and to CHALLENGE it. Good luck.

Ladies I am wavering on something. Was I too quick to dismiss the uterine repair? I was so shocked on tues that I couldn't really absorb what was going on. I do want to avoid multiple surgeries so if it is inevitable that this will need doing I would prefer to have it done now with everything else. Any thoughts?
And sorry for being so needy

Not needy at all. There's so much to take in and gathering information and thinking things through is part of the process. So please don't apologise.

I think this is such a personal decision. I was down to have a possible hysterectomy with the rectocele repair but my uterus was reported to be of normal size and in a good position. I was happy to go along with their decision either way as I have abruptly hit the menopause - I hadn't realised . Sure has pointed out the increased chance of an enterocele and when I did my research there is 10% more chance of having a prolapse if you have had a hysterectomy. When I had a rummage earlier in the week I could feel a smooth bulge at the top and a squidgy lump on the front which I know is the cystocele and think the smooth top bit may well be my uterus so that may be slipping now. I'm sorry this doesn't seem to be that helpful to you but what I'm trying to say is do as much research as possible on here and on other sites to be fully aware of the procedure they are talking about. As we've all said so many times it is so difficult to get your head around what is the best route when our bodies are slip sliding away and we can't quite get a grip on it. Sorry for ramble - need to leave for work - but so wanted to respond to you Bladderama as you have so much going on. Big hug.

Not needy at all bladderama. Could you call your consultant and have a chat? I wish I had something more constructive to say.

I stupidly told the receptionist I didn't need my appt letter back yesterday, so I don't have any names at all. I was hoping to google the name

Oops, this bloody phone!

Google the name on the letter and see if It's the same doctor I saw yesterday.

Thankyou would rather and daisy
I have decided to try and get the uterine repair done at the same time (not the hysterectomy) so have called his secretary and she is going to call me back. Am so tearful and very grateful for all of your support and advice x

Bladder it is understandable to be upset. It is worrying and hard to make decisions about these things. I put off my op for over 8 years as I was such a big girls blouse about the whole thing!
To both you and Daisy, I would say to try and gather as much info as you can. If there is any option to seek a 2nd opinion, then that can be well worth it. I was initially set on a colo-rectal approach to my repair, but following some very good advice on here, I sought a 2nd opinion and went for a gynae approach in the end. Be pushy with your GP if need be. A GP can't fix this problem, so has to refer you on to someone. If you don't feel comfortable with anything the consultant has said, then ask the GP to refer you to someone else.
Daisy, please tell your GP & consultant everything. I know it is hard & it seems embarrassing - but they have heard all of it & worse before. They see broken fanjos day in day out & they aren't repulsed or embarrassed - for them it is just a physical problem to be fixed.

Daisy - age might be part of it, but I guess different areas have different policies. I've managed to get straight through to surgery this time and am 45. Diff part of the country though. Have you tried the website of your hospital, ours lists all the staff by dept, if yours does the same it might jog your memory as to the consultants name.

Bladder - what is the name of the uterus op they want to do, is it a sacrospinous ligament fixation?? That is when they put a stitch in and staple the other end of the thread to your coxix I think, which holds up your uterus. With regards to the hysterectomy, it all depends if you would like to continue having your periods and whether they are normal. I personally chose to hang on to my uterus although I have fibroids forming and it is slipping, but when the time comes I will go for keyhole hyst i think. Another area is to research laparoscopic surgery (robot surgery) for fixing your uterus. This is available on NHS but you have to ask to be referred to a laparoscopic surgeon/consultant - there aren't many around as it is quite new but I've heard it is brilliant - four puncture marks in your abdomen and that is it, plus it is more successful as the view is clearer on screen.

Don't worry about ranting on here - we have all done that and everyone is so supportive and understanding. It's no surprise that we are into the four thousands with the messages. Lots of love your way xxx