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.

Jackie - thanks so much for keeping in touch, I was wondering how you were getting on. I'm so sorry you have had such problems with the tvt removal etc. and feel bad that so far I have had no trouble at all and only have good things to say about it. I hope you haven't done any damage with the chest press collapsing under you. It's amazing isn't it how long the recovery period actually is. I wonder if the consultants really understand the impact post surgery? Look after yourself xxx

Hello everyone! Came back from a few days away and have been washing, tidying and seeing name tapes on (including socks - gaaaah!)

Jackie, a friend of mine had a seroma after a mastectomy and ultimately the only thing that worked to get rid of it was a further surgery. Sounds like you were dealing with yours well and I'm

......

Aargh, can you tell I'm tired? Anyway:
I'm that you have had a setback (and in such a way). That really shouldn't be allowed to happen. Hope everything settles soon (and that the gym have the decency to give you at least a year's free membership as compensation!)

My consultant sent me a link to the rcog leaflet below called recovering well which I have found really helpful:

rcog leaflet

Having a low day here with BMs still not working

nankypeevy - I can't quite get my head around a 'continence party' - unless all the lovely ladies on here were to arrange a get together which would be some feat of organisation I can't imagine holding one with my friends. I am not denying it is needed, just that these things should really be taught alongside antenatal classes - the vague mention of pelvic floor exercises is just not enough. If I had been told the real possibility of having prolapse problems in the future I would have taken much more care with exercises and lifting.

Jackie62 - sorry to hear about the TVT problems but glad you have popped back in.

Fen - always so much to do isn't there? Don't overdo things - humping laundry around etc.

Bladder I know Movicol has been recommended many times on here. No experience myself but perhaps you need something stronger to get going.

Big cyber hug - hope things get going, and keep going soon. It is miserable and I reckon all of us are in sympathy with you having been there.

Nanky - I definitely agree that PFEs etc need to be taught, but I would prefer it in a more medical environment I think, or maybe in the daytime in groups, advertised say by HVs, GP Surgery, but not in the evening in a wine and nibbles sort of way. I have a lot of mum friends and have shared my current predicament with at least 20 of them I should think, but I really can't see us getting together in the evening for this. The main reasons are that if wine was involved (or even if it wasn't) there is a good chance that everyone would go off subject and start chatting amongst themselves, which is what always seems to happen at Pampered Chef etc, also, while I'm more than happy to chat one to one amongst my friends, I really don't fancy sharing in a group situation. If it was a group I'd rather it was strangers TBH, or at least people that have come along because they really want/need to rather than because it is their friend hosting, again like Pampered Chef.

Nanky - lovely idea but I'm with WouldRather & WhoKnows. I agree that the whole pelvic prolapse needs to be better understood - but I just can't imagine doing that with a bunch of friends. Most of my friends have no idea I've had to splint for the last 8 years in order to do a poo & to be brutally honest, I'd rather they didn't know!
Hugs Bladder - hope it improves.

Thanks for the feedback, folks. Really useful.

I think there's scope to catch people between giving birth and before they get to the stage of needing to see a continence advisor.

It appears that many people live with a mild to moderate continence issue for aaaages - and only after a trauma, an illness or worsening symptoms do they seek help.

I'm aiming to catch the ones who maybe have a bit of stress incontinence that would respond to basic advice and simple exercises.

I totally agree, anything that you folks are experiencing needs to be done in a clinical setting - but I wonder whether an informal setting might be good to help encourage women who have a Bit of Bother?

I asked your thread because I presume that you've all had experience of being taught pfexs - ask the experts, right?

Thanks for the thoughts, it's very helpful. Am still mulling.

Hi, Nancy :)
Having read your advice on t'other thread, I have no doubt that the hilarity at a party hosted by you would have everyone clenching and reaching for the Tena, but again can't imagine this in a social setting. Far better to target mother and baby groups, especially ones run by health visitors. Would there be funding available for this as well, if it is going to save the NHS money in the long term?

And, as others, I've shared with friends that I have an issue which may need surgery, but not the extent, and we have all laughed about trampolining. No-one's has yet asked for the ins and outs (pardon the pun) of it all, so I doubt I would be able to muster a group together.

Same old same old here. I have a date for my initial (group ) physio session. I'll carry on with this route for the minute, but will book in with my gp to get a second opinion once the dc are back at school. I'm starting my college coyrse in September, so any op would need to wait until after February when It finishes, so I'm in no great rush.

Hi Bladder, how are you doing? PLEASE don't hang on waiting for this to sort itself out if you're still having problems - see someone tomorrow and if you're asked, it IS urgent.... Never mind the misery, it's putting your recovery in danger (and seems to be the one area surgeons wash their hands of - mine just told me I must never be constipated again, but not how and did not offer to help... ).

Nanky, I've been mulling over what you've said (and tbh have been waiting to see what other people said). I don't think it's the pfe's that are the issue, it's the continence side of it that makes people reluctant to talk about it - it's ok on MN but only a few people know of the extent of my problems in RL for example. I don't know what happens now when women have babies but it is at that point where pfe's should be mentioned along with what can happen in later life - my problems only became apparent as I approach menopause, which I was completely ignorant of. I really can't imagine having a 'party' like this because I know I would have questions that I wanted to ask but find them hard enough one to one. You only have to read a few pages of this thread or the others to see what people put up with initially because they DON'T KNOW it's not right or that there is help out there. (sorry to shout but I do think that's an real issue for older women, and seemingly younger ones too by the posts on here.) someone somewhere needs to put some funding into making post-natal women far more aware of what is and isn't normal even if it makes a few people's hair curl! I could say lots if things about the nhs attitude towards all of this but I know that's not your fault - I just wish that something could be done nationwide to prevent prolapse where possible and let women know what help should be available if they need it.

Hi Fengirl I have had a much better day today thank you and the BMs have sorted themselves out (even though the first 2 felt like giving birth )
The pressure against all of the internal stitches was awful and made me quite tearful.

I am going to go to the GP tomorrow for some more pain relief. The perineal repair was far more extensive than the Dr anticipated and he has warned me that it will be painful for months - nice. So so far I cannot sit down and only for a short amount of time on one of those ring pillows that my lovely romantic DH bought me. DH has been an absolute start looking after me and the DC's

Nanky I have to agree with the other ladies on here and I am only 38. I have not discussed any of this with anyone in RL and this thread has been my only outlet. I do agree that there needs to be far more understanding on the long term affects of childbirth (especially traumatic births) and the benefits of PFEs but it needs to be in the correct setting. For me this is definitely not with people that I know or friends. A more professional setting where I would feel able to ask TMI questions would be far better.

Although in saying that I would love to meet the women on this thread for a !

Daisy I am really shocked at the group physio session! What course do you start next month?

someone somewhere needs to put some funding into making post-natal women far more aware of what is and isn't normal

Yep. This.

The thing that has me hopeful is that the NHS needs to cut costs. Surgery and management for continence problems are expensive - and, prevention could be dirt cheap. I've got a meeting tomorrow looking at trying to get some funding for a small study... fingers crossed. It'll be done in the NHS and, might be a preliminary bit of work.

So, if you you are happy to keep sharing - what good experiences of care have you had - and what was bloody awful could have been better?

Apparently it's a general session, and no personal info will be shared. Probably similar to what nanky is thinking of, I imagine. During this group session we'll be given individual appointments.

I downloaded the tena pfe app and can hold for the required length of time for a "big squeeze" and it tells me my pelvic floor is strong. Hopefully the physio will conclude the same and refer me straight back to uro-gynae!

Yay to things moving in the right direction bladderama :) A note of caution on the rubber ring though. I got one after DS2 as my episiotomy and piles meant sitting was very painful, but was advised not to use it as it can actually make more pressure on the wound as it will try to pull apart as your undercarriage sags into the hole. A pressure sore relief cushion is a much better option, but these are ££££££. Not sure whether you could get one prescribed though.

That does make sense about the rubber ring Daisy, I'm still pre-op but when I sit on the loo it starts feeling unsupported and uncomfortable and just generally as if it is not a great thing to do.

Going back to the group awareness idea, I don't think I was given much if any info by midwives etc about PFEs, I had read about it and had a vague idea, also various friends who already had children used to mention it sometimes but that was all. I have done Pilates off and on for years which gives you a very good pelvic workout if doing it correctly, but have had to drastically reduce what I do now as far as the rest of the body is concerned. As far as the sharing thing goes, I mentioned having shared my predicament with umpteen friends, well, that is only in fairly vague terms, my problems are fairly mild compared with many on this thread too, I would definitely not want to share in detail with people I know. However if you could target new mothers you would mostly get to them before things had got too bad in most cases. I am still very close to my ante-natal classmates 9 years on and I could have seen us all going to a talk at the health centrer about it back in the early days, we certainly shared every gory detail of the birth stories, but probably not now.

But as someone else mentioned its not just mums just having given birth, it's actually a woman's thing. This should be included in our period/reproduction/women health basics. Especially important is the fact that many of you have strong pfe and yet still have serious issues. This is an age related issue for some and a side effect of giving birth for others but either way women need to know they don't have to put up with it.

Advice that I think would be helpul would be to give women who have just given birth a serious talking to about taking it easy, particularly if they had instrumental deliveries and or lots of tearing / episiotomy & stitching.
I had two brutal deliveries with 2nd degree tearing each time but I don't remember any one saying to me I should be careful about heavy lifting, not standing for too long or all the other advice that I've been given following my rectocele / enterocele repair. This advice should be really drummed into post-partum women and particularly those having subsequent babies - so they don't go home and heave around their great big heavy earlier children!!!!!!!
Maybe there could also be a bit more emphasis on pelvic floor at post-natal classes, rather than just breast-feeding. Perhaps there is now, but certainly when I was having mine a decade ago there wasn't anything on this.

Yep, and the older women seem to be really reluctant to engage in getting help.

I'm getting the vibe that there's a distinct difference between people who are at risk or have a minor problem and those who have a real clinical need. One group would respond to an "we're all in the same boat" setting, and the other needs privacy and clear advice.

The current system's a bit shit, really.

Nanky it is also worth remembering that when we finally do pluck up the courage to talk to our GP's about this it takes alot to get them to listen and provide the correct referral. There are many of us on this thread who have had to go through months of tick boxing exercises before we see the correct person for the correct diagnosis and treatment. This subject is not just about our own awareness but how the medical profession approach it - rant over.

I walked to the GP's surgery yesterday and nearly back and then had to sleep for the rest of the day and night, crazy.

On a really positive note and only 7 days post repair I am noticing such a difference already. No more 2am bladder alarm calls I have slept through the night every night since I have been home for the first time in years. My bladder no longer leaks - YIPPEEEE I am so happy and I dont feel like my insides are about to fall out.
Still very sore down there but am so pleased that I did this and cant wait to be healed again.

Hope that everyone else is healing well too

Interesting comments about the ring cushion, the Dr knew that DH had bought one but did not comment on it. But I cant sit directly on it I have to kind of lie over it so I can see what you are talking about Daisy.

Footle apologies - sweeping generalisations are never helpful!

I meant that the research shows that the older a woman is, the less likely she is to initiate seeking help. This suggests that many women see continence issues as a natural part of ageing - which it is clearly not.

To answer your question - my gynaecologist friend says that if women worked on their pelvic floor she'd be out of a job. Doing the exercises will improve the support your undercarriage has - and so that will have an effect on counteracting the stress on the uterine ligaments caused by the cystocele. It might not resolve any symptoms that you have, but it should improve them.

Bladderama that is a very good point. I am struggling to rationalise why continence issues are so common - when they are often so easily treated. The thing that I keep coming back to is time, if the patient's clinical experience is not positive then it can take a loooong time for them to pluck up the courage to raise it again with their care provider.

I think there's a bit of taboo busting would help.

Footle you might get more sense on the menopause forum here about Vagifem.

FWIW I have some info on this from a private gynae I see for other reasons.

Local HRT is safe long term. This is the latest thinking. Previously GPs prescribed it for 3 months only at a time. Some GPs are still in the "old days" and adhere to this.

If a woman uses vaginal HRT indefinitely- ie every week for years, some gynaes recommend they have a uterine scan after 2-3 years just to check that the hormones have not caused over growth of the uterine lining.

The absorption of HRT into the system via vagina is miniscule. Vagifem is the strongest form- Ovestin is a cream and a weaker oestrogen if you are really worried.

Bladder - so pleased it's good news for you so far and you are healing well. Isn't it the most surprising thing to wake up in the morning and realise you didn't get up in the night to pee??!! Lol! For me, definitely the best thing post op x

Nanky - my mother (young 80) has definitely got prolapses - cystocele and rectocele and I suggested she get things looked at with regard to physio (no ops at her age) but her reply is that it has been like that for years so what's the point? A part of getting old!! I'm sure she speaks for all her friends (70+ age group). but seeing her dash to the loo every 30 mins and unable to poo other than rabbit droppings I do wonder!

Sure that makes me cross. Really cross. Not cross with your mum, but with our society that accepts that women of a certain age have lives limited by something that is easily fixed! Suppose she wants to go hiking in the Hindu Kush? Actually, mibbe not there just now Suppse she wants to climb the Inca Trail?

My current work is with your mother's age group - you tell her that the latest research shows that older people have a BETTER response to strengthening exercises than any other age group. They strenghten more quickly (perhaps in part because they are more compliant) and have greater gains (improved balance and cognition and a whopping 60% reduction in falls risk are shown after 150 mins of moderate exercise a week with two sessions of strengthening. ) than, for instance, me at half her age, can expect.

There's going to be a revolution in the way that the older person is regarded. 1% of kids born this year will live to be 100. So, is it reasonable to expect a person to live with incontinence for 30 years? Bloody ridiculous.

Tell your mum that any muscle, of any age can be strengthened - she might initially need a bit of help to generate a contraction, but there are lots of ways to do that. Most of which involve a gadget in a special place, which is out of lots of older ladies' comfort zone - though, my friend's mum has recently been given a copy of 50 shades of crap and is really rather keen on her pelvic floor all of a sudden.

Get her a voucher for Christmas with a women's health physio or a continence nurse? PM me if she's interested in doing something about it - I might be able to find someone near you.