Pelvic Organ Prolapse

Women's health
1

I do wish this subject wasn't so unheard of as it is soo common and yet this forum has only a minimal amount of posts. I think we as women feel so distressed and alone with this that it is not talked about. I discovered my prolapsing uterus about 6 months ago and now my bladder has also prolapsed and I am sure my bowel is not far behind. This is a horrible situation. I was examined lying down both by my doctor and by a gyno and both times was told I had no prolapse. However when standing up everything drops!

I am truly depressed and horrified by everything that is happening to my body and do not know what to do. I just wish I knew somebody personally who had this that I could talk with.

2

Hi Soph...I fully understand your distress, having been there myself.

It takes an examination under anaesthetic for the true degree of my prolapses to show. I have now had three repair ops and each time it took a while before the doctors and consultants were convinced. The consultant examined me lying on my side and then upright and was still not convinced,but it all showed up in theatre.

It is very frustrating, but you do have to keep going back. It might be worth seeing a gynaecologist privately who specialises in pelvic floor surgery.

3

Wow Scriv, 3 ops!

That's what worries me about this - there is no lifetime cure and I find that thought sooo depressing which is why I am so upset at the moment. I don't know how to live with these symptoms which have worsened over the last few days to a degree that I don't want to leave the house.

Some women get 15-20 years of relief but I rarely read those stories, just the ones where ladies are having the surgery over and over again.

I really am having a hard time coping at the moment and I have two small children to contend with as well.

If I was asymptomatic then I would live with it but these feelings are horrible!

Have you had the same repairs done each time or for something different?

4

I can reassure you that I did have 17 years between the first prolapse and needing the second repair.

I then had a hysterectomy and anterior repair as the uterus was on its way down. The back then appeared to be well supported, but then a rectocele appeared and needed repairing two years later.

You can't go on as you describe, Soph. If you have it repaired and keep up your pelvic floor exercises - yes, I know it's a pain, but they do help - and try to avoid really heavy lifting as much as you can, the chances are good for a good many years.

5

I appreciate your reponses. Thank you.

I do seem to have everthing descending at once and feel it would be major surgery which scares the hell out of me. Not to mention it will put me out of action and I need to be able to look after my kids as they are young.

I will have to take it one day at a time for now and see how long I can cope. It is hard though and I have spent pretty much all day in tears over this.

Thank you again.

6

It might help you to know that I had my first surgery when my kids were small too. Everything was descending all at once then following childbirth and I came to the point when I just had to get something done as it was interfering with every day life big time.

I decided to go for surgery i.e. with three months drastically out of action rather than the every day misery which was wearing me and my family down, day in day out. I have never regretted it. After three months, I was more or less back to normal and was able to get back to the normal very hectic life of a parent with young kids. And the repair held good for 17 years. Having this done when you are youngish, means your tissues and muscles are likely to be in a good condition. They are just damaged.

My operation and recovery were very smooth and planning around it is easier than you think. You are not allowed to drive or lift anything heavier than a kettle for 6 weeks, but you can work around it. You also call in family and friends to help - they are ususally so willing to - and if you can afford it, paying someone to vac and do the bathrooms once a week helps enormously. For the next 6 weeks, you get back to normal gradually. I found this preferable to a lifetime of misery.

Fears about surgery are also very normal,for one thing it is fear of the unknown, but the nurses and doctors are usually so lovely and reassure you.

But first things first... your doctors have yet to assess your prolapse and then will probably prescribe physio if they haven't already. You will then be able to see if things are getting better or worsening...and then the decision will be made easier. As I said, I came come to a point when I knew I just have to have the surgery as I could no longer walk around like that and quality of life was zilch.

Good luck in your decision...but whichever route you choose, you need to have another chat with your doctor/gynae to tell them just how much this is affecting you.

7

I sincerely appreciate you taking the time to tell me your story.

I think for the moment the symptoms are more severe than the prolapse themselves. It does affect my everyday life and I am very aware of down there! Nothing has fallen as yet but my uterus has dropped as it was never there before and the front wall is bulging and saggy. I believe they would only see this as mild prolapse and wouldn't advocate surgery at this time anyway although I have to say it feels much more severe than that. I went from no symptoms to being plagued by symptoms in the last 2 months.

I will probably have to go back to my doctor and ask for a PT for now.

I am completely shocked that this has happened and never even knew it existed until it happened. I feel completely disfigured.

I take it you just had everything stitched back together? I think when the time comes I will have to have my uterus lifted as well.

I just wish we as women were better informed as this is much more common that we are lead to believe but we are made to feel like we are alone and freakish. Katie Price mentioned when she was pregnant with Princess that she wanted some work done not for vanity reasons but because she knew something was wrong. If you google it you will come across headlines such as Jordan is a loosey goosey which absolutely infuriates me. This is not something we had happen to us by choice and it is distressing enough without that crap obviously written by a man!

I am not handling all this very well at the moment and feel like an emotional wreck but again thank you for taking the time to talk to me.

8

Hi again...

Yes, the first time, they lifted everything up and kept the uterus. My gynae has told me that the uterus can be used to support the other organs and they only like to remove it if it is too low and/or causing a problem in itself - which is what happened the second time with me.

It is worth bearing in mind that with some ladies - like me - the symptoms are often much worse than the degree of prolapse which can be measured and diagnosed. As I said before, my complaints never matched the clinical findings and I was always a puzzle until they actually got there under aneasthetic. In every case, the consultant acknowledged this when he could see what was what.

That is why if the symptoms continue to cause you anguish, you have to keep on, as you might be one of those ladies too.

9

Scriv, did you have a gynae do your repairs or a uro-gyn? I keep reading and hearing from others about using a uro-gyn as they are the experts in prolapse surgery but I am being referred to a gynae. Just wondered. I am really stressing about the surgery.

Thanks.

10

I know this is an old thread, but it seems sensible to add to it rather than start a new one, as I would probably be giving it the exact same title.

I find myself in a bit of a difficult situation. I've had far too much gynae work done already - colposuspension about 14 years ago now, for stress incontinence, worked brilliantly - then two vaginal repairs for prolapse a couple of years later, these were just six months apart because it all fell straight down again - then 6 months after that, yet another repair, together with a vaginal hysterectomy because it all fell down yet again, and this time round I had uterine prolapse as well.

After that I had a gut obstruction caused by adhesions from all this messing around - and more surgery to deal with that. Then to top it all off, surgery to deal with a Bartholins cyst. So that's 6 lots of surgery so far.

Right now, I know I've got another prolapse. The vagina seems to have fallen down and feels like it is about 1\" or 2\" at the most. I have a rectocele again - I'm having a lot of problems emptying my bowels. I'm also having problems passing water, and this is worrying me as I was told when they did the colposuspension that the suture supporting the bladder was attached to the outside wall of the vagina - which has now fallen down, of course.

I'm in a fair bit of discomfort, with low back ache and some sharp abdominal pain, plus assorted leaking and unpleasantness.

I went to my GP who did not examine me (rather surprised about that actually ) and said that he did not know whether anything could be done about all this - and that really did worry me. I am waiting for a gynae referral now, I've got an appointment at the end of March, which seems a very long way away right now.

So my question is - has anyone any experience of such a situation? I will admit I am more than a little worried about my GP's comment that he did not know whether anything could be done.

I do hope that someone has some input here!

11

Just a bit of an update.

I had some piles banded three weeks ago, and that's definitely helped to a degree - the doctor said they were 'very large prolapsing piles'. They do still seem to be prolapsing - basically it feels as if anything that could possibly fall down/out is trying to do just that! - but something has changed and it is a bit easier to empty my bowels than it was before. Still have to 'support', but it is easier than it was.

The colo-rectal surgeon who did the banding was also very reassuring about the other prolapses, he said that they could all be dealt with and wouldn't present any problems. I was very relieved indeed to hear that!

However, I've now developed an infection of some sort. My GP says it is probably prolapse-related, and probably in my bladder,. The kidneys are now giving me a fair bit of discomfort as well. Still got a couple of days to go with the antibiotics, though.

I initially thought that the nasty lower abdominal pain and high fever must be something to do with the banding so I rang the ward where it was done - they said call GP immediately, so I did, and I was seen literally within 30 minutes of my phone call.

Pretty good service there really, in fact hard to see how it could be better.

12

I've finally had my gynae referral, and to be honest I'm not very happy this evening. I saw the registrar, who then called in the consultant, who said it was 'complicated' and a 'challenging problem'. He wants another opinion, but has told me that 'sometimes the best thing to do is nothing at all'.

I was not looking forward to the prospect of more surgery, but I find that the prospect of not having any of this fixed - or at least improved - is even less appealing.

And to top it off, I believe that I now have a hernia in the diagonal crease at the top of my right leg, and possibly one on the left as well.

13

Regarding prolapse of the uterus, I saw on TV last week 3 items that can be placed inside of the vagina and which would exercise the pelvic floor. My question is, if the uterus is so far down that it can be seen, would these appliances do more harm than good. I do hope that someone saw this programme and would be able to advise me or anyone else in this position. I am not sure how this forum works and if I am replying to the person or persons that first posed the question.

14

I didn't see this programme, but I've been in this situation in the past, and I've tried various exerciser things - some work better than others, and they can be a real help.

Whether or not your prolapse can be helped by exercising will depend on the degree of prolapse, and also the cause. If the cervix can be seen actually outside the body then of course it won't be possible to use these exercisers at all - but you'll have realised that.

I do suggest that you consult your doctor. You'll get informed advice, and surgery is definitely not the first option that will be considered.

15

I have been a great believer in pelvic floor muscle exercises, did them whenever I remembered while waiting at traffic lights. elevators etc. However it was not producing the benefits I had hoped for. I was still leaking, had to use liners and my prolapse had not improved.

I just about gave up. A friend recently told me about a new app (Kegel Aerobics) I got the app 6 weeks ago, what a difference it has made. It seems that it takes a one on one training experience to get real results. This app has 3 reminders, I set them up for twice a day. It starts you as a beginner & you increase levels at your own speed. It than coaches you for a full exercise program. I am now continent, my prolapse has improved, and I can even have sex without pain.

Try this app available on your smart phone.

16

Has anyone here found a gynaecologist who has successfully operated on their prolapses for three times upwards? I have had three repairs and it's gone again. Currently, my NHS gynaecologist suggests leaving it, but my life is so affected by it, -its painful and so uncomfortable. I have been there with pelvic ring pessaries, had a hysterectomy as the womb was affected and became misshapen due to long term prolapse after children. I am an otherwise very fit and active 52 year old. Is there any surgeon anywhere who can make me better? Or any other treatment, anywhere? Thanks

17

how are you now I have had two repairs and dreada third

 

18

Hello,

i also wish I could speak to someone who has had successful surgery.

I have pelic floor prolapse in all 3 compartments.

My womb and bladder are right down as well as lining of bowel.

I am in totall discomfort 24/7 now as this has been going on for nearly 3 years.

Prior to that it was minimal.

I have only slight urine leakage.

Womb right down, and bladder.

I have been looking at opitions and realise now that different specilaists have different techniques. The patient is aware of this.

It is difficult for me to do pelvic floor exercises as it is though there is something stuck in my anus. I have had haemorrhoids, with remaining skin tags, and all this i realise rather late is from the pressure of my prolapse. The urogynaecologist does not seem to work with the colorectal specialist, hence there are different techniques and many people have two or 3 surgeries because the first surgey was not the correct surgery.

Doctors who may be looking at this.

If you dont come together for us ladies we are going to be left in a worse condition. We need proper assessment.

ie Investigation under anaesthetic

Protogram in the sitting position not lying down MRI, the old fashioned method is best. 

Two brains coming together from both areas to help the patient.

I have paid privately to get different opinions so I am now in the know.

Haemorrhoids that are not from bleeding or constipation are from prolapse.

I am still looking for the right surgeon.

In USA they do Sacrolpexy with robot.

There is also Ventral Rectopexy mainly for the rectum, however I believe this also helps with the bladder too.  

There needs to be a specialist who undersands both areas properly.

I have back degeneration of my lower spine, so I am not sure if some of these methods will be good for me as I believe with some of these metheods one uses the Sacrum to secure the bladder and womb etc. 

I believe also that it could be valuable to keep the womb as without it you can also get further back ache. 

In my opinion albeit rather late I think it is possibly to really explore the PESSARY.

Especailly if you have low chronic back pain. 

Any ladies out there with successful ops please let me know.

Mind over matte ladies, keep strong. 

 

19

I had hysterectomy due to prolapse. At same time had posterior repair, a year later had bladder prolapse so had anterior repair.  This time mesh repair, I have had two years of not feeling right down below, but feeling better now.  As the posterior repair was not done with mesh, chances are I will need another repair at some point.  

 

20

Hi Christine,

Thanks for your info much appreciated.

it is a worry having surgeries. If only more people would write in and offer support and share their stories. 

If any one could help me with my problem would appreciate.

Proctogram showed prolapse in all 3 compartments 1 year ago.

i have discomfort now 24/7 

My womb is right down to opening of vagina, bladder right down too,

bowel slipping lining down.

I'm not sure whether to try out a pessary first to help discomfort,

or go for banding for haemorrhoidal tissue.

I am not getting help NHS now.

After 3 years UCLH colorectal discharged me.

I am sure they do not BAND patients for haemorrhoids.

Outside opinion private gave me two options.

1)  Try banding as a first port of call.

2)  If you get relief HALO could be an option too, this procedure can also include hitching lining of bowel.(muco-pexy)

Let me say I do not have full blown haemorrhoids.

I do not suffer from bleeding or constipation.

i have constant anal discomfort.

Summer 2013 had thrombosed haemorrhoid was in bed and now have many skin tags.

Now I have discomfort in my anus 24/7

Discomfort when sitting, lying down etc etc.

I probably need assessment under anaesthetic.

Has anyone had this?

Unfortunately chronic low back pain from disc degeneration has not helped.

There is a possibility that my back is the main problem as I have had 10 years of chronic back pain on waking primarily. I only get 4/5 hrs sleep if I'm lucky and remain very fatigued.

Is there anyone else who has chronic back pain that may contribute to their prolapse?

Christine I wish you well.

Even in the private sector you are not analysed by colorectal and uro-gynaecologist together. All specialists have different  skills and techniques.

I have only realised after 3 years of struggling.

If any doctors are reading these forums.

There needs to be joint assessment (colorectal and uro-gynaecologist together.

As an NHS patient are choice of hospital is prohibited.

The NHS site infers that we have a choice to choose our hospital, however this is not true.

The GP will send you to the local hospital not always the best for your condition because of funding issues. 

We are all in need of a better NHS.

Sandra