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.

Roseanna, I am so pleased for you. Thank goodness you had surgery early. The pain is unbelievable and you can't live with it. However many women have to as theydont have the quick response of a surgeon who is brave enough or skilled enough to remove the tape once it is in. You are now one of the lucky ones like me and we need to be grateful every day that we can now live a life of quality once again. Close call!!!
I don't want to stress anybody out but if you are even considering going for TVT please check out the websites first. There is TVT mum, TVT info and others. They provide a pretty balanced idea of the scale of pain and suffering out there when things go wrong and are not addressed.
Ironically my mum called today and said she was having some bladder issues and was thinking of tape. I went almost went mental and told her categorically that she wasn't having it even if it meant padding herself up to go to walk with the dog. She was a bit surprised as she doesn't know about my christmas nightmare as it would have stressed her out too much,but was surprised by my knowledge of the tape... There is no way on this earth that I want someone that I know (or don't know for that matter!!!) to suffer in that way.
Love to you all, I know it is not an easy journey but thank goodness we have each other to bounce ideas off and gain knowledge from, xxxx

Thanks for info re appt, I called the doctors yesterday just to check if the referral had gone through, and the lady on the phone said it would be st least 6wks before I heard anything from the hospital.
I discussed the option of seeing a private consultant, but she said once I'd left the system is have to pay for everything and wouldn't be able to get back in, and that could work out really expensive.
I got off the phone and had a little cry. I'm very fed up feeling shite all the time and not being able to do anything. And also the not knowing about whether ill be able/want to/enjoy the ski trip is stressing me out. Maybe I should just bite the bullet and cancel, even if it means letting down 14 other people.
Sorry to rant... Had a shite day yesterday, just had a shite sleep too.

Thrifty - poor you xxxx It's always worse when you have had a bad night . If you really want to go on your skiing trip, then tell the drs and maybe go down the pessary route. If you have an op in 5/6 weeks then you probably wouldn't be able to ski as you will still be feeling delicate by Christmas. My first op was Nov 3rd and I was definitely not up for skiing or anything strenuous until about March. Hope this gives you an idea on time for healing etc. If you are desperate for the op, then cancel the skiing, save your money and go another time when you are feeling really fit - I'm sure your friends will understand xxxx

Roseanna - I'm so relieved that you are now ok-ish and glad that the pain has gone. Poor you. What a good thing that your consultant was happy to take the tape out so quickly - he wasn't feeling guilty about anything, was he?

For anyone else with regard to tvt - I have not had any problems at all and am completely pain free. I have my final check up on Monday and will be asking the consultant why some people end up in such excruciating pain afterwards, just to see what he says.

Jackie/Roseanna - I do feel bad that this op has worked so well for me and the two of you have had such a nightmare. Happy healing vibes your way xxxx

Glad you are so much better Roseanna.

Interesting to read all the comments about TVT (even though I'm not meant to be having it). One of my friends had it last year and says it's the best thing she ever did. It's worrying how extreme the different experiences can be. So very useful to have all theses experiences talked about here as so few people talk about it in RL.

So many thoughts running through my head all the time. Still stressing, but just let it all out to dp, who is being supportive.
Can you tell me roughly how it goes wrt appts. Say for ex, do you get a thorough examination, scans and whatnot when you see the consultant, or is it a long drawn out affair with weeks in between, being seen for the first time?

Hi, I don't often post on here but I'm out of mind with worry :(

About 10 weeks ago i started to have a pain in my left side by my hip, it was annoying and it went away after three weeks only to surface on the other side and it's remained there since. Its an ache that gets worse throughout the day and with exercise.

I saw my gp (several times) as I was really concerned, I have an ultrasound scan done plus blood works including markers for ovarian and bowel cancer - all fine. I was diagnosed with a cystocele a d rectocele last year, had some abdominal pain that wore off after a couple of months and I haven't really given it much thought to be honest - at the time I was told to go away and do pelvic floor exercises.

I just dont know what to do now ! Im so anxious, i can't eat or sleep, ive got two DCs who need me including a DS with ASD. Is it likely to be the prolapse? My gp wasn't very helpful. I've also got alot of groin aching that goes down below :(

Sorry if this sounds naive but I thought some of other ladies might have some advice.

Thrifty - for me once i saw the consultant I was immediately put on the waiting list for op - no scans or further investigation. I did say I had been on a strict regime of pelvic floor exercises which was true but is often the first fob off in terms of delaying any surgery. For my first referral I was just given a choose and book referral form straight away by the GP and could phone myself. I impressed how bad I was feeling. At that time I had it in my mind that I wanted a female but didn't care who - I was given an appointment within just two weeks. If I'd taken the first slot for anybody it would have been sooner.

This time around I was referred by letter to the consultant who eventually operated on me (not the same one as the initial consultation) and who I am keen to stay with. I have now made contact with his secretary and she has been really helpful in sorting out an appointment. In my area there is a central booking system - it may be worth ringing them to say you've been referred and wonder when you will hear. I can see that if a particular consultant is requested then things take longer as it goes to them before the booking system. Even when you get your appointment you may be able to bring this forward by saying you are available at any time should somebody cancel.

Did your GP talk about referring you to a particular consultant?

Bagpus - I had shooting pains, like sciatica, in my groin and down my right leg, which seemed to come from my hip joint. Since I had the rectocele/enterocele op these pains have completely vanished. They were so bad that I had to take iboprofen each night just to sleep. I've since read that prolapse can cause back, groin and leg pain. Hope this helps xxx

So my appt came today, not til 29th Oct though, so another 6 weeks. I needto see if i can change it though cos its in the morning and I work mornings. Have decided to cancel ski trip as it needs to be paid for by then, and i won't know what the outcome is. I don't want to go down the surgery route, if there's an alternative. So now I just have to wait and see. I feel calmer now, haven't told my friend yet about cancelling the trip.

Thrifty - sensible decision x

Bagpuss - pains in hip, in side between hip and ribs, pains down legs, achy fanjo (and rectum) here too. I also walk like John Wayne at times and get a sore back. I'm hoping it's all down to the prolapse or I'm an old crock before my time!
Thrifty - a tough decision to make, but given you don't know when the op will be or how you would get on with a ring, it would have been a gamble to carry on. The catch-22 is that the longer you can't exercise for, the less fit you get! Consequently I'm trying to get a bit fitter before I'm back in, but am finding it hard and achy going!

Bagpus, I really feel for you. I know that sounds trite when everything hurts & you are worried. I am on my own with two DCs & my DS is ASD too. I put off the op for my posterior repair for 8 years because I was so nervous about it. However, I'm nearly 7 weeks on now and so glad I finally had the op. The DCs were fantastic & have been such a great help - I think it's been good for them!
So, please try and get some sleep and eat, because hopefully it will all work ok and you'll get loads of support on here.

Thanks surewoman and fengirl, yes you hit the nail on the head re the fitness thing. I figured if blackberry picking left me in such pain, how would I ever manage a ski lift. Oh well, decision made and email sent last night. The stress relief is immense, and it means that if i do need an op, I have enough money saved to put towards the bills while I'm off work.
I am finding the wholewoman posture really helps, I felt soo crap yesterday morning, but after a day of standing and sitting correctly I was feeling a lot less achy and draggy last night. I haven't gone the whole hog and ordered the books/dvds, just looked it up on YouTube. It's quite hard to stay in posture, and our sofa is the work of the devil, though i spent yesterday afternoon sat on the floor sorting lego. :)
Post- are you able to do stuff now?

Thrifty - I think cancelling the skiing ie very sensible. Re changing the outpatients appointment, I phoned up to change one a couple of years ago because of work, thinking I would just get another day around the same time but no. The person on the phone said "are you absolutely sure you can't make it?" so I said yes (although I probably could have done it was just inconvenient and I knew my bitch boss would have been nasty about it, that's another story, I left soon afterwards). Person on phone then grudgingly allocated me another one two months later which I then felt obliged to accept, although I would actually rather have had the earlier one and put up with the possible hassle at work. It may not be the same in your area, but be prepared!

Will bear it in mind, thanks. I'm self employed, so if i don't turn up then I let down all my customers, and, of course, I lose a days takings. However, saying that, Mondays are my quietest days of the week, so if it can't be moved then I'll just have to take it. Will call them tomorrow and see.

Bagpuss - your post hadn't come through when I wrote mine so I am sorry if it looked like I ignored you. I had all sort of aches and pains before surgery and still do have a lot of aching and dragging going on with a cystocele. Try to be reassured by your GP - is there a gynae clinic at your hospital you can be referred to? Try to care for yourself and seek further advice on where you are physically. Good luck. Big hug.

Thrifty, my energy levels are not quite what they were pre-op - not helped by the fact I have the mother of all colds. I'm doing all my normal day to day activities - which is fairly full on, as it is just me and the DCs and I work full time & don't have any help/cleaners etc and am a bit OCD.
I started back with gentle pilates exercises (the ones I was confident I could do without any pelvic strain) but this cold has really knocked me back & I'm just shuffling through the days at the moment.

Thanks to everyone who replied to me. I feel so much better now, all of the symptoms described on here are a mirror image of mine. When I was first diagnosed I think I was fobbed off with pelvic floor exercises. I love exercising (!) and run three times a week. I've only recently found out this is not a great idea with a prolapse :( so I've been making it worse without realising.

I'm going to go back to my GP to get a referral to the gyne clinic and I'm going to try a pessary too - need some relief - I've got an DS with ASD, a DD aged 3, (a real handful) and a severely disabled dad to look after. My DH is brilliant but he's away alot. I'm nor sure surgery is an
option - doesnt it have be classed as 'severe' . How bad does it need to get? At the moment I'm just crawling through the days :(

Bagpuss - A pessary could really help but "crawling through the days" sounds bad enough for an op, even if you choose to delay it. I hope you can get some proper diagnosis and good information. From reading these threads it also seems common that when they do eventually operate they report that the bulge was much larger than originally thought so do not be fobbed off with 'it is only mild'.

Hi, I haven't posted on this thread before, I've got a few questions that I'd be very grateful for any insight on. I know my problems are very minor compared to what many of you are going through. I've got a mild urethrocele since DD was born a year ago. I was referred to the physio and saw her for a few sessions, she checked I was doing the pelvic floor exercises correctly and discharged me after three appointments. I don't really know what to think - if I miss doing the exercises properly even for a couple of days then I can feel the prolapse a lot more, so the muscles are obviously still very weak. I know they have to be done every day but it really alarms me how much it deteriorates if I miss them! What does the future hold - can I continue like this indefinitely, will it get better at all? Also I've read that after menopause prolapses often get worse so am I likely to be facing an operation at that point? I don't have any pain, just some mild discomfort, and the physio said when I was lying down she couldn't see the prolapse.

I haven't had any incontinence although I sometimes have some close calls if my bladder's full. The last time I went swimming I wet myself a bit when I was getting dry (which I was mortified about and had to literally drop DD into the playpen and rush to the loo). Another reason to hate swimming! I want to start exercising again but don't know what's 'safe' for me to do. I'd started using one of those mini trampolines before I had DD but I imagine that would be a no-no with a prolapse.

Hi zimbah, I think menopause can worsen prolapse - apparently because of the tissue changes due to decrease in hormones, so in theory HRT / oestrogen cream could help, and might be something to be aware of as you approach it. The exercise thing is a difficult one. If it helps you, then it is well worth sticking with it. If you find it a pain and could find 20-45 mins in your day at a go when you could be still, it might be worth pursuing the idea of an electrical machine that does them for you? Several ladies on here use them.
Bagpuss, if you feel you are crawling through your days, tell your gp / consultant and anyone else that will listen. Pain, continence issues, or on the other hand difficulty going are factors that should be taken into consideration along with your quality of life, self-esteem and sex life, so don't be shy about saying exactly how it affects you. Notes are good for helping you to say what you want to! (As an aside, I was going to be left to cope with a rectocele until I wrote a very honest letter to the head of gynae at my local hospital, literally throwing myself on her mercy. The upshot is she saw me within ten days and I am now waiting for my second op which otherwise I would have waited at least a year for, if I ever got it!)

Zimbah - welcome. I have no experience of urethrocele. I would suggest you go back to your GP and ask for a referral to a urogynaecologist to get advice.

Didn't mean for that to sound so short - I think it would be good to get a referral because from my own experience it is better to see a specialist to get a proper idea of where things are at, future prognosis etc. So sorry you are having to deal with these things. Hopefully somebody else will come along with helpful advice on living with an urethrocele.

Well it just gets better here!! Saw gp, he said gynae wouldn't see me unless I had stress incontinence and that I had a sports hernia! ( he didn't examine me). Strangely enough when I told him I do sometimes get stress incontinence, that I was diagnosed in May 2011 with a cystocele and rectocele and that I had private health insurance he referred me like a shot - or I am I just being cynical? Seeing gynae on Thursday, fingers crossed for a way forward.

So upset and frustrated. I've got the symptoms in bucket loads, Ive got a diagnosis, it's clearly got worse and I need help yet the gp's won't really help. I even asked about a pessary in the hope of at least some relief ur he said it wouldn't help and was really only for older women ( I'm 40). Why won't they listen? :( I feel like I'm going mad.