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Pt 8 (Oct13) Any old prolapse! Uterus/womb prolapse, rectocele, cystocele, enterocele, urethrocele, incontinence, pelvic floor, anterior and posterior repair, TVT etc (994 Posts)

(358 Posts)
gottagetthroughthis Wed 19-Mar-14 00:24:19

Welcome to thread 8 (again - see below) 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.

With apologies for confusion in thread numbers - an earlier thread was called part 7 but it was actually the 6th thread.

Here are the previous threads:

Thread 1
Thread 2
Thread 3
Thread 4
Thread 5
Thread 6
Thread 7
Thread 8

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.

scifigeek Wed 26-Mar-14 17:39:53

Hi there - glad to find this thread as I think I need both advice and moral support to cope with a broken fanjo.

I had a horrendous birth 2 years ago with emergency forceps and third degree tear. I thought I'd recovered after a few months but started getting a very 'pressured' feeling in my pelvis and thinks looked visibly different. Fortunately no leakage but still not good.

I was referred to my local bladder and bowel clinic, had a rectocele confirmed and saw the specialist nurse several times. Did the pelvic floor exercises as instructed and was discharged a few months ago and told that the prolapse wasn't severe enough to merit medical intervention, and that I had to live my life without lifting heavy things or doing exercise such as running. It wouldn't get better but it hopefully wouldn't get worse.

Not very practical advice with a toddler and a job which does demand some carrying of heavy files! So I've carried on my life as normal, but obviously tried to avoid lifting too many heavy things. To be frank the 'no strenuous exercise' advice seems more appropriate for someone in their seventies not their thirties and trying to lose baby weight.

The prolapse has suddenly got a lot worse over the course of a couple of weeks. I've referred myself back to the bladder clinic but can't be seen until the end of April. My rectocele is far bigger and protruding and to my completely untrained eye I think I've got a cystocele as well. Everything's falling out basically! I have to poke things back in a couple of times a day and it's really really constantly uncomfortable and sore. I suspect there's chafing. Ugh.

The bladder nurse doesn't seem to take a very 'interventionist' stance, and by the sound of it the health authority approach if I do get referred up is 'we'll try a ring pessary, if that doesn't work we'll do a little patch-up, then if that doesn't work - and it normally doesn't (!)- maybe a bigger one'. I'd rather have a big one-off fix-it op even if it's painful than faff around with minor interventions that don't work and I really don't want the ring pessary which needs to be changed every few months.

The nurse is very nice, but she's not a consultant, and I wonder whether I need to push for a hospital referral. Also DP has BUPA cover at work which extends to me, so I wonder whether I should ask for a referral down the private route when I see her, as they may take a different approach and move quickly. I hate the idea of queue-jumping but I'm hobbling like a little old lady and worried to pick up my son.

So your advice ladies would be most welcome. Both on any short term relief to get me through to the end of April without hobbling around like John Wayne due to the discomfort, and what to ask for when I get to the clinic. grin

LackaDAISYcal Wed 26-Mar-14 17:50:23

hi scifigeek; yes, do push for a gynae referral, or at least to the gynae physios.

NoG, I've read that things can move southward following hysterectomy. They are taking my cervix as well, so it'd "just" be a case of my vagina turning itself inside out and/or my bladder dropping even further.

I'm kind of resigned to the thought of further surgery down the line but I will ask if they can at least do a TvT whilst they are in there to keep my bladder anchored where it should be! I guess it depends on what the CT scan has shown. I'm willing Friday to come around quickly.

Frenchfrogbutt Wed 26-Mar-14 17:58:05

Good luck with everything ! Nog
New body new home and new Man. Very soon !:-)
I wonder how those great ladies who told their stories managed to rule their houses take carre of their children cook manage their job , live their lives with a pop a rectocele
Mine is SAID to be small the bulge is hall what IT was 2 months ago that is to say less than 1. Cm a few mm. . But IT killed everything inside me i had some great support by mail on the thread by my family but i i am hopeless cant stand the pressure the pain the fear of the future . I cant even stand the idéa of the pain of te operation which i wont have before years. I am afraid that my husband wont cope with the situation to traumatise my children crying . I cant take the transports go i. Public places . Everymorning my first thought is oh no its e
Real ... Am i fucked up forever ? Did you manage to get your Life even before the op ? To enjoy Life ?
IT is SO hard . I see a psy but not really effective is IT ?
Sorry again need a place to let that go ...

happylilme Wed 26-Mar-14 20:29:48

Noordinary glad you are on the road to recovery and turned that corner. I'm feeling fine now my body and scar tissue tell me if I've overdone things. I'm lucky in that work has actually been very understanding which surprised me.
Life before repair was rather depressing, would not let hubby look there at all as my rectocele actually hung outside the entrance. I couldn't have a normal bowel movement unless using laxatives and in the end I even struggled with them. Splinting became the norm. But it's not normal to have to live your life like that at the age of 36 .
Life after repair, well it has greatly improved I can poo freely, still slightly afraid of pushing to hard. I feel like the old me before kids, I'm tighter but not too tight. All my close friends have said they notice a real change in my mood a lot happier. I'm am doing pelvic floors everyday as I don't want any thing else to go wrong. I do get occasional pain around scar tissue but it is still early days, I'm now four months post op.
I would recommend anyone who has any concerns about prolapse to demand referral to gyne don't suffer unduly. We have all been in the same boat and know the emotional trauma of prolapse. It's a shame it's a very secret isolating condition when it's obvious so many women suffer with it.

Dragon if you're still about hope your recovery has gone as well as mine x

Frenchfrogbutt Thu 27-Mar-14 08:43:01

Happy This is always good to hear . I think my problème is more psychological as the rectocele had Now really reducced. Never at the entrance i cant really see te bulge actually Its like a smalll wave of skin and it doesnt pushbzither when i need to go to the loo.But the constipation is there i take a laxative but never splint . Pressure is strong on the rectum they say IT might be the hemmoroids . But i am SO tired and anxious especially in thé evening cant get that out of my head . Ans i w

Frenchfrogbutt Thu 27-Mar-14 08:48:25

And i know for sûre i wont get the operation.
I am Still on sick leave afraid to go back to work i Will need to get to the loo before leaving its just like the rectocele tool control of my Life ! I have a lot of transport !
Well anyway its good to read you tak care of your health go
And yes scaring is just at the beginning so IT Will be better and better

Noordinarygirl Thu 27-Mar-14 09:03:28

French, Happy is absolutely correct when she says there's emotional trauma that goes hand-in-hand with these prolapses. I think my 'illness' had a huge hand to play in the break up of my relationship. I admit that there were loads of other issues within our partnership but we were managing to work through everything until I became 'ill'. I don't know about everyone else but I felt as if I was almost shutting myself off from DP in some way. The hardest part is that outwardly you appear fine as it's NOT an illness/disease as such just an anatomical issue that needs fixing.

It is really pretty shitty to live with these problems and Scifi you DO really need to get a referral to a consultant IMO. I lived with a pessary for about 8/9 months but I knew it was only a short term fix until I got my op date through so it was bearable. I certainly wouldn't have wanted to live with it for much longer. I am 46 (still not old!) and I'm assuming that you are a fair bit younger. I think the pessary route is probably much more preferable for much older ladies but not those of us who have decades left and are fit and active normally. I know exactly what you mean when you say you'd rather have a one-off big fix, that's exactly how I felt. I used to go up mountains and do 30-40 mile bike rides almost every week and then it all came crashing down. I just wanted my old life back. I'm positively hopeful now as I seem to be recovering fine now. Here's hoping......

Happy where are you up to exercise-wise now? I am now doing 2 short walks each day - only approx. 1-1.5 miles but it's progress that I'm happy with at the moment. I don't want to push things just yet in case I set myself back. I tried a longer walk earlier in the week and ended up clutching my stomach on the return. It's deffo helping to keep BMs regular now. Things are good in that department for me - long may they continue. smile

clemandjaz Thu 27-Mar-14 11:16:39

I am a newbie on here but have read through a lot of other sites / threads and there seems to be more real advice and experience on here than anywhere else on the web, so thanks for letting me join in.

I am booked for anterior and posterior repair +/- vaginal hysterectomy on 15th April. I am now 57 (although find that very hard to comprehend - where did that go to...?) and have lived with prolapse since pregnancy with DS2 who is now 19.
I was told I needed a hysterectomy when he was 6 weeks old but felt very unready for that and got myself sorted out sufficiently by urodynamics etc, was fitted with a ring pessary, and managed with that just fine until the menopause when pelvic floor gave way even more.

Hadn't actually seen a gynaecologist for years, just GP nurses when having smears etc, am very comfortable changing pessary myself. My current gynae seemed amazed that I have been coping like this but reading through others' experiences I don't think it's been so bad - up until the menopause it really didn't affect my life much, certainly didn't affect my ability to exercise [was a runner] no splinting for BMs etc, just used to take the pessary out for sex, although that's not been an issue for some time now but that's another story...

Would love to hear from anyone else who has had this op at my age re recovery - what can I realistically expect to be doing when? I'm a very independent sort of person and don't like the thought of being looked after, even if DH and DSx2 were inclined to do that sort of thing [which they aren't] I'm pretty fit going into the op although not doing nearly as much exercise as I used to.

I've been told to take 6 weeks off work but would like to think I can work at home [on computer ] before then - presumably my brain will recover quicker than my body? How long to driving an automatic? I have 96 yr old Mum who lives alone and who I visit frequently - not comfortable with not being able to do that for long.

mrsclairet Fri 28-Mar-14 13:48:46

Hi I am almost 2 weeks post op. I had to get admitted to A+E for 4 days as I had a temperature and abdominal pain. I'm still not really sure what it was, the gynae team assessed me and didn't think it was related to the op, they initially said it was an infection but then later they said they don't know until they send it off to be tested and they don't get the results for 5 days. Anyway they gave me some strong antibiotics and painkillers and I am now out of hospital. I feel a bit scared though as I am still getting a bit of abdominal pain, I really don't want to end up going back there. Plus when the urogyn examined me he said that the vagina felt too tight and that I might need to get something done about that in the future. Great! But I suppose as one of my friends said I'd rather have it too tight than too loose!

Frenchfrogbutt Fri 28-Mar-14 15:02:54

Hello msclairet , good to hear from you too bad for this infection but IT seems your are well in Hand Now. Dont Worry too much now about tighten or not vagina , focus on the healing . I am in the waiting room of the second spécialist i see i dont even know why i took this appointement !
Take care

scifigeek Fri 28-Mar-14 21:49:48

Thanks to everyone for their kind comments. It's a relief to talk to people with the same problem. I know I joke about my broken fanjo, but if I don't laugh, I'll cry.

Noordinarygirl you summed it up when you said that there's emotional trauma involved with all this. After a difficult pregnancy, a horrendous birth, slow recovery from birth injury exacerbated by a break out of agonising genital boils (!), then the prolapse, I just wish I had the anatomy of a Barbie doll and could forget that anything existed 'down there'. I'm fed up of being poked and prodded and doing pelvic exercises to no avail and wandering around scared to pick anything heavy up. I just want to feel normal.

flouncymcflouncerson Fri 28-Mar-14 23:28:56

Welcome clem and hello mrsclairet

I'm still struggling along. Still waiting on 2nd opinion which I really hope is through prior to my next gyn appt. Surgery likely to be scheduled in early June. Hysterectomy and prolapse repairs. The pessary is helping in the interim but keeps dislodging and requires shoved back up for want of a better description. I'm sure it's the wrong size but can't get back to gyn before April to get a different one!

Getting quite down at the fact I'm in this mess and I've only just turned 30. Have counselling /cbt appt at end march to discuss this any many other issues,

mrsclairet Sat 29-Mar-14 11:38:22

I just wanted to say hi to the newbies. I am feeling slightly better today, just really wiped out. I can sit comfortably in a chair for short periods now which means I can sit and eat dinner with my family which is nice and I can sit at the computer for a short time. I haven't left the house for 2 weeks (apart from the hospital) and I am really starting to wish I could do more than just sitting around all the time but I know if I did go out I would feel unwell so I'll have to wait a bit longer for that! Hope everyone manages to have a nice Mother's Day.

LackaDAISYcal Sat 29-Mar-14 15:06:39

hello to all the newbies smile

My hysterectomy is booked for the 14th April...no repairs until after that as they will not do repair surgery alongside cancer surgery and they think the hysterectomy will change things anyway. Either for the better, so no repairs needed, or for the worse, so better to see how it waffects me before making a decision.

So, it looks like this op won't be my last. I'll lurk with intent in the meantime wink

Good Luck for all the up and coming surgeries smile

mrsclairet Mon 31-Mar-14 10:20:14

LackaDaisy I'm sorry you seem to be having a really tough time of it. When I was in hospital for my infection they put me on a gynae ward and a woman who was in her late 50s I think had tvt, hysterectomy, anterior and posterior repair. I couldn't believe how well she seemed afterwards. But anyway I guess you just have to trust what they are saying.

I am feeling a bit down today. It is 2 weeks and 2 days since my 2nd op and as I wasn't having nearly as much work done I thought this would be a breeze compared to the last one but unfortunately it has been every bit as bad. It started off better, I went home the day after the op, I pooed after 2 days but then ended up in hospital with a pelvic infection and then today when I went to the toilet it really really hurt. I'm sorry moaning cos I know compared to you LackaDaisy it's not that bad, but I haven't been out of the house for 2 weeks so I need just somewhere to vent. I had a really bad night last night, I woke up at 4am and couldn't get back to sleep and had to take some co-codamol. I'm sure that after last time I wasn't still on strong painkillers after 2 weeks but I suppose my memory could be playing tricks with me.

LackaDAISYcal Mon 31-Mar-14 18:03:03

Aw, mrsc, sorry you are having a hard time sad. fwiw, my second, elective, C-section was so much worse in terms of pain and recovery than my first emergency one. I had expected to breeze through it as I had the first one, especially sonce I hadn't had 48 hours of labour before hamnd, but it really knocked me sideways. I guess you just can't tell how we are going to react.

I hope things start to feel better soon xx

I haven't had any urodynamics testing done, so I imagine that is a factor in not doing the repairs. I'm on a gynae cancer ward as well, so maybe the general gynae surgeons don't mix with the oncology gynaes?

mrsclairet Mon 31-Mar-14 22:14:36

Hmm, when I was in hospital they put me on a gynae ward but then I was under the care of the surgical team because gynae said it wasn't a gynae matter. Its frustrating when you feel like no one is communicating or working with each other. Take care xx

scifigeek Wed 02-Apr-14 13:22:43

Well some progress for me. I was offered a cancellation appointment this morning to see the specialist nurse rather than wait until the end of the month. She's confirmed that the prolapse is definitely worse and has referred me to a consultant for a 'surgical review'. So things are moving forward (unlike my insides which are moving south....).

Noordinarygirl Wed 02-Apr-14 16:18:01

Scifi I'm glad they saw you today and that you are now 'in the system'. I hope you get to see a consultant very soon. The waiting is the most frustrating part!

mrsclairet Wed 02-Apr-14 17:28:11

How is everyone else? I went for a shopping trip today which was prob a bit of a mistake but I hadn't gone anywhere for over 2 weeks, apart from the hospital and my sister in laws house so I was desperate to get out. Needless to say I am now sitting on the sofa feeling rather sore. I am going to see my consultant tomorrow but I'm feeling a bit nervous. The surgical team in a+e said I need to see him but the gynae team said the infection was not due to the operation and when I spoke to him on the phone he was basically saying the infection was nothing to do with him. I thought about cancelling but then I thought maybe I should just go for my own piece of mind. When I was in a+e they examined me and said my vagina now looks too tight so I guess I could ask the consultant about that tomorrow and see what the next steps are.

mrsclairet Wed 02-Apr-14 17:29:14

Peace of mind not piece of mind!

flouncymcflouncerson Wed 02-Apr-14 17:41:14

mrsclairet I hope the appt goes ok tomorrow. I wouldn't worry about being too tight just yet. It takes some time for the swelling post surgery to go down and that may have coloured a&e Drs view, they won't be used to seeing post op vaginas! As for doing too much , try and slow It down, I found even just a short walk was quite painful and a lot of effort and I suffered that evening and the following day. Gravity is a cruel force!

scifi it's good to get a referral and once you see the surgical team you'll know more where you stand.

I'm doing ok. Things at falling lower and lowers and my pessary needs readjusting at every bathroom visit and with an overactive bladder there are many. About 3 weeks now til I see my old surgeon again and hopefully find out what repairs he would like do alongside the hysterectomy. I'm still waiting on my 2nd opinion appt and I would ideally have had that before seeing original dr just so that I can discuss her ideas etc with him. I'm only 30 and this will be my second surgery so I would prefer something longer term however he wasn't keen to use mesh....

mrsclairet Wed 02-Apr-14 19:23:14

I'm so sorry to hear that flouncy, it is so disheartening to have to have another op. I am only 32 and my urogyn didn't want to use mesh either, he said where will we go from there? I didn't really know what he meant as I thought mesh was basically permanent but later he told me we still don't know enough about mesh and its putting a foreign body inside which can create problems. The consultant said after my 1st op my uterus had dropped but I don't think they did anything about it, I really hope that doesn't cause problems. I sometimes can't believe in this technologically advanced 21st century that there isn't more that can be done.

Noordinarygirl Thu 03-Apr-14 09:52:56

Hi everyone, I'm now 6 weeks post op - WITH MESH! - and I'm feeling SO much better. BMs still going great and I'm walking up to 1.5 miles in one go now. Anymore more than that and I still feel it too much and I get aches in my stomach and feel heavy down below. I haven't felt brave enough to 'see' if I'm too tight yet IYKWIM!

I turned a corner at 5 wks post op with energy levels, pains (stopped painkillers due to BM problems) and generally feeling more my old self. If I'm on my feet too long it does take it's toll and need to lie down for a while. Still not tried sitting on hard, office-like chairs for much more than an hour so not sure when I'll be up to going back to work. I sometime have to cover weddings and bars operations so it can involve up to 12 hours on my feet and lugging around till drawers full of cash, which I point blank refuse to do just yet.

I managed some of hovering yesterday, only hard wood floors not carpets as that involves much more 'force'. I also tried walking over a hill in the local park. Well, I got about 3 steps up and it was agony. It was only then that I realised it's such a different action to walking up and down stairs which just uses your leg muscles and not your stomach muscles! Shan't be trying that again for a while either.

I AM taking things very easy after making the HUGE mistake of doing too much too soon after my last op. My back is still holding up OK. I was VERY concerned about them pinning the mesh to my spine but it's faring pretty well to date thankfully.

Mrsclaire take it easy and try not to get too frustrated. You really must let your body heal for a while longer before putting it under too much duress.

Flouncy sorry to hear about your pessary problems. I had the same issues - having to push it back up into place all the time so I'm really glad that I don't have that any more. I'm really hoping that I don't have mesh problems in future. I think it is a pretty 'industrial' strength fix so I'm hoping I'll not have to re-visit this type of op again.

GingerPunch Thu 03-Apr-14 14:50:09

You & Yours Radio 4 today 12.00 - 1.00pm talked about problems with mesh for bladder prolapses, was quite interesting you can catch up here;

www.bbc.co.uk/programmes/b03zdbrj

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