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Any old prolapse! Uterus/womb prolapse, rectocele, cystocele, enterocele, urethrocele, incontinence, pelvic floor, anterior and posterior repair, TVT etc part 7

(1001 Posts)
gottagetthroughthis Fri 19-Oct-12 00:38:09

This is thread 7 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
Thread 6

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.

cardamomginger Mon 22-Oct-12 20:05:23

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tinkxx65 Mon 22-Oct-12 21:33:01

Hi everyone, not been on for ages and am just popping in to say hello and ask a question. I am seriously having second thoughts about having these procedures and am thinking of putting it off for a while. I am not working at the moment, but need to be and I was wondering how those of you that work full time manage with the rectocele, I mean I spend ages in the bathroom and have very little warning that I need to go.

Hope you are ok Fen and Wouldrather, and Roseanna saw your post and am so sorry that it has not worked out for you. Will read through the posts tomorrow when in a better mood. Take care everyone x

surewoman Mon 22-Oct-12 22:06:14

Roseanna - so sorry you are back to square one. No-one ever mentions the psychological toll this all takes on our mental well-being, and the impact that in itself has on our families and children. When I was told I had to have it all done again I was really upset, but then resolved to getting it fixed once and for all thinking that as I was already in that frame of mind I might as well go for it. Yes, I have spent an entire year trotting to and fro to hospital appointments, etc. but now, having finally been fixed, last year is fading fast in my memory bank and I am very glad that I carried on with the surgery route.

Tink - if you are not working at the moment, then maybe it is the right time to get fixed. I found lengthy bathroom visits were often making me late for work, plus the exhaustion from the rectocele etc at the end of the day would have me lying on my bed with my legs in the air just to get some relief. With all these things, they do only get worse eventually. But, if you are not sure about a repair, then you could always stick to the pessaries. xxxx

Nelly - I have an i-touch sure pelvic toner (from Amazon) and I do find that without it I would not a) be so aware of which muscles to tense and b) actually get around to doing so many pfe's. As it is on a timer, it does make sure you have a good work out in that region (and can be done while lying in bed reading a book!!!) How much difference it makes, I don't really know but psychologically I feel I am doing something to help! x

fengirl1 Mon 22-Oct-12 22:08:48

Oh roseanna sad. I'm so sorry things are not sorted for you. It sounds like you have a good consultant though, but sadly you seem to be yet another case of only doing half the job leading to another op. You're right about the mesh - I asked and was told they don't tend to use it for first repairs and keep it in reserve for if they need to go in again. If it's any comfort, despite a few worries, I'm feeling much more positive this time around and hope that I might have a halfway normal fanjo at the end of it with my BM issues at the very least resolved.
Tink, you're right about BM issues causing problems at work - for me it was not being able to go when I needed to leading to increased problems with constipation sad. As you're not working at the moment, is it worth finding out about waiting times to see if you can get it over and done with before you start working again? Just another way of looking at it maybe.
Troubled, I can't comment as I don't have a sex life (having a broken fanjo put me off after my divorce), but I had a posterior repair three weeks ago and hope that I can 'get back in the saddle' at some point! I do know some women have a few problems but this is mainly scar tissue settling. I have also been offered dilators if I feel I need them and while it may be a bit blush I think I'll take them as at least I can massage the area (I AM blushing as I write this) as I know this helps scar tissue a great deal - not really a comparison, but I had a contracted scar in the palm of my hand with abnormal sensation and simple massage helped a huge amount.
Another question about my perineal repair - I have a hard lump which I think is where the stitch has contracted? Sure, any thoughts??? And have you put 'yours' to the test yet? grin

Goonatic Mon 22-Oct-12 22:34:03

Hello. Have lurked a bit on this thread. I have just ordered a pelvic floor toner as I have a cystocele. Happened last oct actually so have lived with it for. Year and experienced it getting worse, better, worse, better etc depending on how much I am lifting or coughing! I found it to be the most awful thing ever to begin with but after monthly physio am feeling a bit more positive.
I am scared that it s likely to only ever get worse and am putting my head in the sand a bit about the likelihood of having an op at some point.

I have lots of respect fr all of you who have had ops....!

Footle Tue 23-Oct-12 16:42:04

Autumnqueen, I am in my mid 60s and had a rectocele repair 18 months ago. Sex is still very important to us. I was told to wait 11 to 12 weeks before trying.

The next bit is irrelevant to you but anyway :
As I'm so incredibly old, my tissues will have been more fragile and slower to heal than if I'd been younger. We use lubrication anyway ( Sylk seems to be the best ) and I use Vagifem pessaries because I'm post-menopause and they replace some of the lost hormones to keep the vagina supple.

So with these other considerations I don't know if I can be any help but I am still finding sex quite uncomfortable, about half the times we make love. If we take plenty of time , it's much better than if we don't. We've had to change some habits - lying on our sides with him behind isn't as sure-fire as it used to be. But I'd say things are still improving, and my orgasms are not affected - the bits that hurt are at the entrance near the perineum , and further in where the scar gets rubbed. The sorest bit can be avoided by a change of position. My desire to have sex is not affected at all, and I do sometimes think Let's just do this, and it gets better as we go on.

I am very pleased that I had it done, though I wish sex didn't hurt - obviously. You mustn't go on indefinitely feeling horrible about your lady-bits , and they will prolapse even more and get very sore and difficult to manage if left for ages.

My bet is that as you are so much younger, you will get back to having comfortable sex in quite a short time. And what I've got is an awful lot better than nothing !

I hope this isn't depressing, and I hope some women nearer your age will reply to you as well. All the best.

roseanna1 Tue 23-Oct-12 17:49:36

Thanks for your support ladies...feeling a bit down about it all and its good to talk to other people who understand.

Tink - if I were you I would take the opportunity to get fixed before you start work. It's a lot easier from a 'toileting' perspective and it means you wouldn't need to take time off as its quite a long recovery x

surewoman Tue 23-Oct-12 20:02:18

Fen - haven't put anything to the test yet, other than tampax and my pelvic toner!!! blush grin, but... am feeling a lot more confident about my lady bits and am ready to 'get out there' again (so to speak) - as my sister would say, stop faffing about and get a bloody move on!
If (big if) I do 'find' someone and all is a success I will of course let you all know!
Hope you are feeling positive (it is nowhere near as bad the second time around, as you know what to expect - though I was probably more nervous because of that) xxxx

wouldratherbeskiing Tue 23-Oct-12 21:54:09

Welcome Goonatic.

Sure grin

Tinkx - I empathise with your dilemma and only you can know whether you can live with your symptoms. I share Sure's experience and thank her for her continued support of us all. I work 4 days a week and am on my feet most of the day. By the time my op date came I was physically and mentally dragging myself home and was desperate to get my feet up. I took straight to the sofa and then to bed. I work close to home so did not have much travelling time. The day I woke up after the op I felt a huge relief and as Sure said the recovery soon fades to a distant memory - I only had it done in March and it is holding well. It was the right thing for me with just one regret that they didn't fix a small bulge on the front wall (their description) found during the op. It is now a largish cystocele which will be repaired in January. For me cystocele symptoms have been much milder than the rectocele and I can imagine some people may live with this but for me it's not how I want to be physically, or feel emotionally. If you go back to work without surgery you may find a supporting pessary useful to alleviate symptoms. I've just read they are most useful for uterine or cystocele prolapse but I found one invaluable for the rectocele. It is scary for all of us and I, like most on here I suspect, have read everything I can to be as informed as possible but sadly it is not black and white from the diagnosis, to advice through to procedures. I continually want to scream and worry about repairs holding or other things going. Good luck with your decision - remember you are mostly reading on-going stories that are not straightforward on here. Many women are recovering well and getting on with their lives. The only people I know in RL who've had these ops are now fully repaired and operational wink despite having a few problems on the way similar to my own when further bits have slipped.

Roseanna - good luck with further tests - hopefully by this time next year we'll all be fixed and feeling great.

Fen - it sounds like you really are on the home run despite so many set backs. I’ll bear the massage in mind blush.

And Footle - thank you for being so honest and helpful in the intimate department. At the moment I can’t bear to post about it as feel a complete mess.

Take care everyone.

shattered00 Tue 23-Oct-12 22:11:25

Hi everyone, not been on for a while but just popping in to say am now about 4ms post anterior and posterior repair & perineum rebuild. Its been a long journey and an emotional rollercoaster, but it has been worth it for me. I had help with lifting my 6m old and my 2.5 year old for 12 weeks and avoided any heavy lifting during that time, which was a nightmare but I was determined to follow the guidance given by my surgeon. Now I feel a lot better than I did. There have been a few wobbles post op where I really worried that the op had not been successful but I have had two follow ups with my surgeon at 6 weeks and 10 weeks post op and she tells me there is no longer any prolapse. I still got that feeling of something 'coming down' even at 12 weeks post op but that really seems to have settled down now. Tmi warning: my problem now seems to be a lack of natural lubrication which feels pretty uncomfortable at times. I understand this is quite common post child birth and hope that all will return to normal. Has anyone experienced this? Does it ever come back?! No sex yet but have been feeling ready for it & brave enough to be touched which is massive progress on where I was physically and emotionally 6ms ago. Anyway, wishing all you ladies luck on your journeys. Thought it might help to hear a positive story from a 33 year old mum with two little ones who is coming out of the other side now (fingers crossed) x

wouldratherbeskiing Tue 23-Oct-12 22:23:00

Great to hear some good news shattered00. You've done brilliantly to manage with young children. Hopefully natural lubrication will sort when things finally heal and settle. In the meantime some out of a tube should help. I've made a mental note of Footle's recommendation for a brand called Sylk.

surewoman Tue 23-Oct-12 22:27:48

Shattered - wine and grin to you! Glad all is looking good. I'm sure lubrication will come back - are you still breastfeeding as that can hold things up for quite a while? If not, the old KY jelly (or similar) to stop you worrying about it! XXX

fengirl1 Wed 24-Oct-12 15:10:17

sad.... I moved my legs a while ago and either pulled my stitches or (what it felt like) somehow spiked myself on the ends of some of them. The pain made me cry. Sure I don't know how you stuck it for all that time.

Footle Wed 24-Oct-12 15:15:32

Not KY - it's a newish formulation and nasty stuff.
Wouldrather - thank you , it was quite an effort writing that !

lyttleangel Wed 24-Oct-12 15:42:09

Hi everybody, I am looking for some advice please I am at my wits end and don't really know what to do.
I am currently lying in bed after having a laparoscopy this morning to investigate the extreme pain I get during intercourse, I have been sent home with a piece of paper stating no gynae cause found and no follow-up made. I have been seeing a urogynea for nearly a year now and am not getting anywhere. I am 25 years old and since having dd2, 2 1/2 years ago I have had nothing but problems. I have a cystocele and rectocele, pain during intercourse (ruining my relationship) incontenance, I get thrush all the time (related??) constant dragging bulging feeling down below and just feel plain ugly. I am taking Solifenacin 10mg once a day to help with frequency of urination, but it does nothing for the urgency. I have had urodynamic tests done with which they apparently found 'nothing substantial' but I cannot understand this. I regularly leak urine and literally 2days ago pretty much full blown wet myself in front of my partner (sorry to be so graphic) i was mortified. I seem the like prime candidate for a repair but my gynae guy seems very reluctant! Please help. This is RUINING my life

surewoman Wed 24-Oct-12 18:18:13

Lyttleangel - welcome to this thread. Big hugs to you - go and get a second opinion and state that you are feeling an emotional wreck because of this. Have you had any scans to rule out endometriosis, enterocele, etc??? There has to be a reason why you are suffering so much? Good luck xxx

Fen - I hope to god I don't have to welcome you to the barbed wire scenario!!! Know that feeling very, very well! Go and ask your surgeon, sooner rather than later, just in case you need to get the ends snipped. xxx

lyttleangel Wed 24-Oct-12 18:26:54

Hi surewoman, thank you for the advice. Yes I had an ultra sound but they said they couldn't find anything, so then they suggested a laparoscopy to rule out adhesions, endometriosis etc. To be honest the pain is horrible, but at least its only when I have sex. The everyday things are what get me down. I feel like they think I'm making it up.... and to be going through this at my age I feel like a freak and extremely unattractive.

autumnqueen Wed 24-Oct-12 19:47:22

Footle thanks so much for your helpful response, I'm trying to think positively now, and am coming to realise that things will not ever be what they used to be.

Lyttleangel I can relate to those negative feelings, while I don't have urinary symptoms my rectocele symptoms and the appearance of it really get me down. A good doctor should be taking your emotional presentation into account when deciding on the best treatment so, as surewoman says, make sure you are as open as you feel you can be.

Thanks everyone for sharing so much and being such a support, the whole thing is just not talked about, or warned about so it is such a shock for anything like this to go wrong.

gottagetthroughthis Wed 24-Oct-12 23:10:42

footle - thanks for the complete genuine honesty thanks- i havent' had the op yet but know I will soon sad am 52 wonder about the sex part and I suspect it won't be easy but it is something you just couldn't ask anyone face to face - after all it is our womanhood blush i wonder if anyone could answer this - can you still manage sex if you have a ring pessary fitted - physio mentioned the ring pessary to me but just couldn't bring meself to ask the important question about intimacy blush
sure - you are a star smile
fen - hugs good vibes goin your way and always thinkin of you hon and hope all is goin as it should thanks

I know this is a fairly established thread so I'm sorry if I'm gate crashing the party slightly. I've just recently had my suspicions confirmed by my GP that I have a prolapse - a cystocele. She was a little non-plussed about it really and hasn't made any referral to any other Doctors or anything. I'm just feeling a bit out of my depth - have no idea really how severe the prolapse is, what that means or how urgently I should be trying to fix it or get it fixed.... Can anyone help me work out where to start in processing everything? I am usually so aware of my body and completely on top of whatever's going on with it. I have another chronic condition and with regard to this would count myself to be an 'expert patient'. It feels very strange to have something that I know hardly anything about. I'd appreciate any recommendations of good websites for information. Thanks in advance. MPD

Gotta - the leaflet which Cardamom linked to says you can have sex with the pessary but you might occassionally feel it.

Lyttle how awful, I would definitely be going for a second opinion if I was you. Maybe check if any of the GPs in your practice specialise in gynae problems and go via them, ours list their specialities on the surgery website. Go in and stress that this is causing you major emotional problems as well as the physical ones.

Fen - ouch, you poor thing. My stitches are all internal but still give me little sharp stabs sometimes when I move my legs, can't wait for them all to be gone.

Shattered glad to hear yours has turned out well in the longer term and you Would.

Roseanna - sorry to hear you feeling so down, it has been a hard six months for you. Fingers crossed that things go bette when you get reassessed.

Tink - the work question is a hard one. i only work three mornings a week in a desk job but I do a lot of running round with my DCs (6 and 8), walking to school and back plus walking to different activities most weeknights plus endless hours on my feet cooking and cleaning and by the time I had my op (which was about 5 months after the symptoms first appeared) it was getting really hard, I had to spend most of my evenings watching TV in bed because the dragging was so uncomfortable by about 6pm. i had a few good months in between diagnosis and surgery when it really wasn't a problem at all, but that might have been because it was the school hols and a lot less walking, but the last few weeks were really hard. It depends what sort of work you are thinking about getting into too, would you be on your feet, able to use the loo whenever you need it etc. If you really do need to get back to work before having surgery a pessary might be a good stopgap. I can't answer about the spending so much time in the loo part as that didn't happen to me, I did have to splint regularly but didn't have any fecal incontinence and I am very regular in habit (although once I need to go I can't hang on for too long).

tinkxx65 Thu 25-Oct-12 08:54:44

HI, Thanks for all the replies re work - I think I am just getting cold feet, I am booked in for the operation in 6.5 weeks which will be 42 weeks after first going to the doctors, like alot of the ladies on here I have been made to feel like I am making a fuss and as the time has gone on I have got more and more depressed and sometimes think, maybe it is not as bad I as feel it is. But I dont leave the house until I have been as I am scared I would have an accident if not near the loo, plus I have to manually get it out :-( I am a single mum and we are really struggling money wise and I am having nightmares that having the operation is going to cause me more problems than I have at the moment.

My heart goes out to all of your that are finding the consultants less than helpful. I had a cystocele that they described as saggy and it was not until I pushed for them to call it by its name and then asked if it would get worse (the answer was yes) that they then agreed to do it along with the rectocele.

I personally think that a lot of the doctors and consultants do not appreciate the psychological effect having a prolapse has, my bits look a complete mess and it has knocked my confidence, I have not had sex for over a year and sometimes I think I never will again now.

Anyway, take care everyone xx

Bladderama Thu 25-Oct-12 13:56:40

Roseanna I am so sorry to hear that you have had these set backs sad I hope that you get an appointment and some re-assurance soon x

Shattered so pleased that you feel like you have come out of the other side of this and thank you for sharing that with us it really does help to hear different experiences.

Fen l hope that the stitches are starting to feel a bit better for you, I did find that mine felt worse before they felt better, take care x

Footle and Surewoman you two are a pair of stars and so inspirational thank you for continuing to share and offer advice.

Whoknows hope that are taking it easy and resting!

Reading about those TVT tapes has made me gulp what a minefield shock and quite alot of mixed experience on here.

I am going through a phase of being thoroughly pissed off with the lack of information, support and advice that we receive or more importantly don't receive before it is too late and the effect that it has on our lives, sorry rant over.

wouldratherbeskiing Thu 25-Oct-12 17:51:23

Lyttleangel - so sorry you are having to deal with these things at such a young age. I can't offer any experience of the pain you describe but living with a rectocele and cystocele is difficult enough. You say further tests were suggested - are these being booked? Perhaps writing down all your symptoms and concerns will help when at the next consultation. Do not be fobbed off - good luck.

Gotta - although I used a pessary I managed to take it out every couple of weeks. A friend took hers out every night - I couldn't have managed that as it was in quite tight - soooo I never had sex with it in.

fengirl1 Thu 25-Oct-12 18:20:47

Well you have to laugh.... Dd1 to dd2: 'look ds2, if you don't want mum's fanny to crack in half and the sky to come down, you're going to have to help'! grin

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