Any old prolapse! Uterus/womb prolapse, rectocele, cystocele, enterocele, urethrocele, incontinence, pelvic floor, anterior and posterior repair, TVT etc part 4

[Ben10NeverAgain]

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

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.

Hi Gail - glad you saw your GP. My anterior got worse after the posterior repair, and I ended up having to have the posterior done again with the anterior (apparently it is better to do both together to keep the anatomy in the right place - makes sense to me!) x

Livelong - I have been told to rethink my lifestyle with regard to lifting as the cystocele repairs aren't known for their strength and quite often return if you are not careful. I am forever lifting children in my work (special needs) so need to alter my methods!!!

Yey Shattered - you made it!!! Hope you are now more on top of the pain meds. Sorry the nursing isn't great, where are you? Private or NHS? I had bad bladder problems to start with too, but that is apparently quite common after anterior repairs. Five jugs of water = empty catheter, followed by fast IV drip and two full bags of cranberry-juice-looking wee!!! Getting better now, at least it's clear and the quantity is improving daily. Still have to get up at night though, every two hours, which is a pain in the bum!

Today is day 11 and... I got dressed and went to Tesco (with my Mum). I lasted about 10 mins and had to go and sit down in the cafe like an old woman, lol!!! But I managed to get out of the house!!! Hurrah! Felt much better psychologically but realised that this is going to be a long haul as I have been hurting a lot since and went straight back to bed afterwards. My stitches are beginning to give, so maybe that is why I am so sore (at least I know for certain that I have no barbed-wire fence this time!!!)

PostBellum - I know it isn't easy to keep calm (I didn't sleep for the week beforehand) but try and read a book or something before bed so you go to sleep thinking about something other than fallen fanjos! Lol!! Shades of Grey??! You will be fine and will be so relieved afterwards xxx

I've got all my DCs here at my mother's now - the eldest has 'had enough' of clearing up behind the middle son, complaints such as " he just leaves stuff everywhere", "he puts empty packets in the sink", "he leaves his towel on the floor", "he covers the work surface in crumbs after I've just wiped it" - how I laughed - sounds familiar!!!! He even said he had really missed me!! Aaah (that's a first!!), bless! What a learning curve, I shall now be pampered for the rest of my life by my DCs (worth having a fallen fanjo for!!!) x

Congratulations sure on your first trip out. Got to start somewhere...hopefully your strength will gradually build up from here. When did they remove your catheter? I am hoping they will take mine out today. My pain has subsided but am staying on top of it with pain killers. Hoping once packing removed things will feel more comfortable. Am private, in guildford. The night shift nursing staff have been so much better in terms of bedside manner. I am just so very grateful to this forum for all the info-it has made me feel much more in control and able to be assertive about my care. Re change of lifestyle, I too have been advised by womens health physio to make some pretty drastic adjustments which have taken me a long time to come to terms with. So, no heavy lifting, no jogging or other high impact exercise etc. As a fit and previously healthy young (34) woman I felt devastated by this advice and have almost had to 'grieve' over it all iykwim. However, this is a super cautious approach to try to avoid recurrence. I do believer there has to be a balance between being careful and being able to enjoy life so I am going to see how it goes, be vigilant about PFE and avoiding constipation and, where exercise is concerned 'listen to my body'. One thing is certain: I never want to go through this again if I can help it! X

Hi shattered - glad you're feeling more on top of things. My packing was taken out on Saturday (op Friday) - I was very nervous about that but it didn't hurt atall, felt like the last bit of delivering a baby, when it just wibbles out! It made things a lot more comfortable as it had been pressing down on my posterior stitches. The catheter was taken out on the Sunday lunchtime - to be honest I was quite happy having it in as it meant I didn't have to go to the loo, but they needed me to have a BM (Christ that was bad!!!). Ask for some laxatives now, so that when you need to go it won't be so painful, and if you are having problems, then a glycerine suppository is a life safer (I panic if I run out now, as they are my 'just in case' rescue package! Lol!) xxx

Fen - what were your symptoms of an infection? I woke up this morning with a real burning pain around the left side of my stitches, and what looked like pus (but could be stitches dissolving as I know they make a creamy discharge). Can't really tell if the smell is usual or getting worse (kind of a metally, rotten leaves smell -sorry TMI!) but again this might be normal for dissolving stitches??? As I had mine surgically removed last time I don't know what to look for, so any advice welcome. Did you have to go to your GP to be looked at? Don't want to do that as I have never been to see him in my life, only the female GP!!! x Thanks xxx

Hello! Had to go on my computer to catch up as it's a bit hard on a phone!

Livelong - I'm going for a checkup this afternoon so watch this space.... I have a lot of the same questions as you.

Sure - how many times did you think 'I told you so' even if you managed not to say it to your DC's? I strongly advise you to go and get a swab taken if you're at all worried about infection and ask for some antibiotics to cover you while you're waiting for the results (around 5 days). If you feel more comfortable see a nurse practitioner as they can do the swab and prescribe.
I wouldn't go on just smell - it's only bacterial vaginosis that causes the 'reek'!! The other symptoms are pain, discharge and feeling unwell (they didn't really take me too seriously as I didn't have a temperature - despite having constantly cold feet and feeling DREADFUL.... Until they did the scan of course.) As far as pain goes, remember you can take paracetomol, ibuprofen and codeine if you need them - I used to 'save' up an ibuprofen dose to take at bedtime and another one in the night if I needed it. (Yes, I know best to avoid codeine, but the pain was bad at times.) In fact, it's only been the last ten days or so when I haven't had to take them at some point in the day.

I'm actually feeling a lot better now, far more human and on top of things, to the point where I've sorted out the spare/junk room and burnt and shredded a lot of old paperwork! Just as well as I'm back to work on the 12th (10 weeks and a day after the op.) Still taking tablets for thrush though - the lovely leftovers of 147 antibiotics tablets!!!!! (I wondered so I worked it out - scary. So if I include painkillers I think I've taken about 400 tablets. )
Oh well, a means to an end I suppose - but I will be asking if my cystocele has actually gone 'cos there's something still peeping out at me!
Will come back later to tell you what they say.

Fen - thanks! Hope you don't now have a cystocele, good luck . I will ring the GP now, just in case, don't like to make a fuss though in case it is nothing!

Sure - better safe than sorry! Had a 'high' cystocele repair but the bit I can see never had any stitches on it so who know?? All I can say is my fanjo looks far from normal still.

Got a gp appointment for tomorrow morning - just hope things don't get worse by then. if I apply a bit of pressure near the sore bit, then lots of goo comes out, so I think it is infected, and bloody sore.

Fen - how did you get on at the docs? I had to laugh at the amount of pills you've taken - scary thought, isn't it (are you by any chance a maths teacher!!!? Lol!) x

Well..... I'm back......
Livelong - the good news is that I can now go back to normal as far as lifting and everything else is concerned.

The not so good news (pretty rotten really) is that I still have a heavy thrush infection (ok I can live with that), but also while I don't have a cystocele (the bulge is the repair apparently), the back wall is 'quite lax' which those of you who by now know how to translate HCP'S talk (uncomfortable = it's going to hurt, there might be some pain = it will be pretty excruciating and so on) means I still have a rectocele, which explains the pain doesn't it? For crying out loud. I'm not sure I want to go through all of this again. I've got to have three months of 'intensive' physio and then possibly oestrogen cream before they decide. WHY didn't they do it in the first place???? I could have gone to get dd from cm but needed to come home first to get my head on straight otherwise I might cry.

Sure - no more poking! You need to leave it alone really. I hope you get on ok tomorrow.

Can I be rude and ask the ladies who went private if it cost more or less than £5000? Sorry to ask but I do have some money put aside (saved over many years) which I was going to put into the new house when I finally move - but I just want to get this sorted out.

Fen - so sorry to hear your news. By intensive physio do you mean PFE's. This seems to be the standard along with oestrogen - I have pessaries which are rather like a biro but not sure whether my GP intends for me to stay on oestrogen. The consultant who operated on me wrote a paper on a trial of women using an intensive programme of PFE's and the result was that they did make a difference in helping women avoid surgery so he is an advocate of using exercises as a first treatment. I have been giving this a good go using a TENS battery pelvic floor exercises and doing them during the day. I can't see it working but have mentioned before I know I need to do this to have a track record when I'm finally referred back. As I am only 16 weeks post op I am not keen to have surgery too soon. If the word 'slack' has been used and not 'bulge' then it is worth a try and may be enough to keep it at bay. I am so sorry this has happened to you as you are so supportive of everybody here and I thought this was your 'home stretch'.

I remain a bit fed up - bleeding stopped yesterday evening but started in the night and has been ongoing today. Red blood just like a heavy period but I never had heavy periods and haven't had one for a year! I haven't contacted my GP because it is probably 'normal' and not related to stitches. Has anybody experienced bleeding like this post hysterectomy or v. post menopause?

Wouldrather - went through physio (ie pfe's) last time and have a pelvitone which I used prior to surgery although can't now. It's why I'm so frustrated.... I feel like I have to jump through the same old hoops again. I want to sell my house but didn't dare until I was recovered but don't know what to do about that now....
As far as the bleeding is concerned, have you been checked for an infection? It can be a symptom. If I were you, I would be on the phone to your consultants secretary or your gp tomorrow expecting some answers. I had anterior repair plus vaginal hysterectomy with minimal bleeding so it doesn't really sound right to me.

Oh and I should have said the nurse's words were 'we might have to operate'

Fengirl, really sorry you are still having problems. Hope you get some sort of resolution soon and you have something positive to aim for.
Wouldrather- I will make a point on Friday of asking the skiing question and let you know what my consultant says.
Had a sleepless night last night stressing about the op and will probably have the same tonight. Still at least it will mean I will be knackered by the time I get to the op so will hopefully sleep after!!!

Fen, poor you, so sorry to hear your surgery has not been successful. That is my biggest fear now but guess I should think positive. Surgeon seemed happy with how op went. In terms of cost of op privately mine was £600 for surgeon plus £275 for anaethetist. Plus cost of stay in hospital (not sure how much that is). When I was trying to find a new consultant I did find there was quite a range in the fee charged but most expensive was a top uro gynae prof in london who charged £1800 (for anterior and post repair plus perineum rebuild). Hope this helps. Can I ask how soon you realised the operation had not fixed you? Skinniky-good luck for tomorrow. I am now at end of day 2 and feeling so much better already. Just make sure you keep on top of pain relief and be prepared to hassle the nurses! X

Oh Fen - poor you, I know that feeling, utter desperation and depression. The 'all for nothing' scenario. Why the bloody hell they can't fix it all in one op, which is the recommended, instead of trying to get away with it and then making us go through it all again is beyond me. The consultant I had this time said it is very important to do both front and back walls at the same time to give proper support and restore anatomy, otherwise things get pulled out of sinc. and the problems get worse. The pfe route is a load of rubbish because it works on muscle tone and if your vagina walls are slack, they are slack and exercise won't make a jot of difference. But, the NHS criteria (I looked it up today) says that in order to save money all patients should go through a set physio programme to try and eliminate some patients from surgery waiting lists. If you can get referred again, and explain in person your desperation, they might well let you miss the months of physio. If it is upsetting you to still not be 'fixed' (like it did me) I would definitely try and have more surgery now while you are focussed on it. I have wasted an entire year now, but hopefully this time (fingers crossed) will be the last. I have had three operations in 7 months and I did lose the plot when I was told in May exactly the same as the other consultant had said to me in September "you need x, y and z" - I just burst into tears and said 'but I've heard it all before and I am still sitting here a year later, how can I believe you?' I think that did it because then he was incredibly sympathetic and said it was obviously upsetting me a great deal (well done!) and promised he would fix me this time. So far, so good!

Fen, have a really good cry (I should think you need it) and we are all here for you. Keep focussed and get assertive - you shouldn't have to go private (I was told that too by one GP after the first op). What about contacting a surgeon's sec and explaining everything, missing out the GP??? Big hugs your way xxxxxx

Fen -it just occured to me that you should get it fixed because after a hysterectomy, prolapses like enterocele are quite common and if you already have lax walls, it doesn't bode well. (that's when your intestines fall down the pouch of douglas, between your vagina and rectum) xxx Been thinking of you all night!!!! (((((((hugs))))))

Bless you Fen, I really feel for you. I can only imagine how you must feel. Private should be well under 5k. I haven't had all the costs through yet but looks like 200 per consultation, 50 per physio session, and about 2k for actual op/ anaesthesia/ hospital stay. If you are paying yourself rather than via insurance the BMI hospital chain I used negotiate a 'package' price for everything which I think is both cheaper and saves you worrying about post op complication and consultation charged. Sending you hugs xx

Sure - sounds like some ab's needed and
as Fen said - leave it alone lol! Hope you're feeling better today though and sending you hugs too xx

Shattered - so pleased its all going well so far and you're safely 'out the other side'. Now comes the hard bit - plenty of rest :o

Gail - I don't know much about the bladder retraining part, but doc has said I have to do this along with tablets for overactive bladder and more pfe. Have to see him on Tuesday to start what he calls 'phase 2' of fixing me lol. I'm not entirely convinced I must admit (still quite sure I have a cystocele as well as the rectocele I just had fixed) but will let you know how it goes.

Wouldrather - cant help but thinking of you.xx

Fen so sorry to hear your news you must be so fed up. I have to agree with the others can you go back and say I know you are meant to send me for physio but can we in this instance by pass it. May be mention all the infections you have suffered being such a strain and just want to get it sorted out. I also don't think you should have to pay privately.

Wouldrather, I think you should go to your doctor. I do understand about not wanting to bother him/her for something "normal" but think of your relief if that is what they say. If not at least you will get some help.

Ooh Sure sounds very painful, did you get some meds to sort it out.

Roseanna, I hope you are well and getting plenty of rest.

Gail, gosh you seem to be having a bit of a hard time. I did have some pain in my pubic bone after op is this what you mean? It did go after a while. Hope the doctor sort it out for you.

Skini I remember stressing before the op, just try and relax! Sending good luck thoughts your way.

Waves at Post, Who and Lala.

Thanks for all the helpful advice regarding the dreaded AF it has all settled down now thank goodness. If fact the pain and swelling seemed to receed really quickly after AF waved good bye!

I do have a question if anyone can help. If I am up a lot a I get a burning sensation in side my perfectly tucked up fanjo :). Does/did anyone else get this? so frustrated with taking it easy. I feel fine and just want to get on.

I also would be really interested in hearing about the PF exercises recommended by physios if anyone has any info about when to start them which ones to do, how many to do could you please post the info thanks.

Also if anyone is visiting a consultant if you get a chance could you ask about starting exercise when, what type are good to start with. I don't see my consultant until September and have limited access to him.

Very disappointed with this aspect of my care I am thinking of paying privately for a physio or badgering my GP. I am in my fifth week post op and never want to go through this again so I am really worried about damaging all the good work :(

Hi pip my consultant said I should start with toning exercise like pilates & yoga and work up to more high impact stuff. I think she meant once 12 week recovery period over but I will double check when I see physio later. Its day 3 and am in agony again-catheter out and cant wee, despite having desperately full bladder. Also feel the need to do no.2 and cant. The two combined are causing a lot of pressure which is seriously uncomfortable. Took stool softener last night and had glycerine suppository this morning but (sorry TMI) still feel full of poo!

Oh shattered I know exactly what you mean poor you. Do not put up with it, I had really bad constipation after op and had to call the doctor out. He gave me a micro anema for immediate relief and then movocol to help my bowls get started. I think you should ask for something other then stool softener. I was given lactolose and the GP was amazed it was all I was given.

Did you have the tape some ladies had to wee bending over initially to go to the toilet.

Whatever you do don't strain. I got this from michele kenway site it helped me so might help you. For weeing try sitting on toilet legs apart raised slightly might help but do not lean back have a curve in lower back and and to wee push lower stomached out.

For pooing again try sitting on toilet legs apart raised slightly might help but do not lean back have a curve in lower back. Make a the sound of the letter m mmmmmm and you feel the sides of your stomache push then make an o sound ooooo relaxes splinter. Yes you may sound like a mooing cow in the toilet but the relief is wonderful! :)

bladder

Sorry can not find the bowel one at the moment but will have another look

Thanks pip, tried positioning advice but still only tiny amounts coming out. Bladder scan shows 900ml so they have just put catheter back in which was pretty traumatic but feel much better already now pressure relieved. Just asked for anti inflammatory which I would have thought would be prescribed as standard (and nurse seemed surprised that it was not in my notes). Not feeling hugely confident in my care at present. Missing my babies and want to get out of here. Sorry to be miserable-was feeling pretty good first thing this morning.

Shattered sending you with a big hug, I think you need one and a .

Take a deep breath and think about what would make you feel better and then ask to speak to the person in charge of the ward, it always get them running around like headless chickens!!

Horrified they had not been giving you an anti inflammatory I am still on them now 5 weeks in.

Are you private or NHS?

I know what you mean about missing your babies but you really need to concentrate on you at the moment. Just relax and think that you are doing this for them too. My DD are amazed I am no longer on the toilet all the time :)

Thanks pip. Am private but it just goes to show that standard of care is not necessarily better in private hospitals. Thanks for your continued support. This hospital room is a pretty lonely place:-(