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.

Hi,

I was just wondering if anyone had similar experiences and how long they had to wait for being sorted.
I have a 3 year old daughter and since she was born I have been diagnosed with both recto and cystocele, with the cystocele being the most severe. I have tried 3 pessaries with no avail.
My GP reffered me to GYNE in march and have an ap next week, my app was brought forward as in the last 2 months I have had 6 utis and kidney infections. I have been hospitalized 3 times.
On the last occasion I was told that I am not fully voiding with over 200 mls remaining stagnent in my bladder. This is causing the frequent occurences.
My GP and urology seem surre surgery is the only way forward which I hae no reservation over as thefrequent uti's, painful sex, constant blood in urine, and having to go to the toilet comnstantly or worse having to go and be catheterised after not weeing for days .
I know my GP classes the need for surgery as urgent due to 12 weeks of blood in urine, the 6 utis which have caused me to be sick and loose over a stone. But what I was wonderinbg if anyone had a simlar situation how long they waited for surgery.

Thanks you

Hi Strange - poor you sounds like you have been having a hell of a time. I don't think any of us have had it as bad as you with all your uti's, infections, blood in urine etc. etc. I really hope you are able to get an op date v. soon. It seems to be about 2 months on average with NHS, between diagnosis and surgery date but private quite quick. If it's classed as urgent, you may well find you have a date within a week or two with NHS. Is your cystocele actually poking out?? (sorry, just curious, as we have all been discussing sizes recently with regard to what they will/won't operate on). I bet you can't wait to get all this sorted. Best of luck xxxx

Happy - so glad you had a good holiday and all looking good still. Great news all in working order too !!! (So far I haven't had any problems with the tvt, but still quite cautious - however, no wee accidents at all!)

Gail - sounds like excuses, as surely like me, 46 is when you really want things looking good and in full working order, rather than wait until you are post men and not so interested iyswim!!!!

Fen - have you broken up yet? xxx

Gail ? thanks for getting back to us so quickly. I suspect this is what will be said to me ? not as young as you though ! You mention your NHS appointment ? is this with the same consultant? I don?t know how we are to make informed decisions when consultants? advice differs so much. As Sure says is it just an excuse? ? what they deem as small can have a hugely negative impact on somebody?s health, others are happy to live like that. How can they quantify that? On the other hand we do not want to have surgery that could turn out to be detrimental in the future.

My friend who had a rectocele repair last year and hysterectomy and cystocele repair 16 weeks ago said today she feels she has her life back, is strong and feels fully fit ? and best of all ?normal?. So there is hope.

Fen ?Shame you can?t record your Consultant whilst at the appointment on or better still you could have us all on conference call chipping in questions!!!!

That's interesting to me too Gail as I'm about the same age as you, they are only planning to do the rectocele on me as well.

Strange - I was told in our area the time between referral and surgery is around 18 weeks (I'm waiting for my date at the moment). My symptoms are nothing like as bad as yours though, that does sound grim. You need to make sure whoever you see at your appt next week really gets the message about how bad things are, maybe push for a cancellation slot.

Gail and Whoknows - I'm 46 too - must be the age for it!

Was laughing to myself at the thought of an impromptu meeting of 'The Fallen Fanjo Club' at the hospital! It would certainly get their attention if we could all turn up mobhanded!

Footle - I didn't mean that I think sex is less important after the menopause (on the contrary) just that statistics harp on and on about women and reduced libido, hormonal changes, etc. etc. post menopause which is why it surprises me that they seem to think it better to 'wait' for years before these ops by which time hormones, quality of tissue, recovery, etc. are not as healthy and a sex life that we could have been enjoying has gone completely out of the window due to prolapse induced pain, embarassment, incontinence, bm blockages, bleeding, flatulance, floppyness, lack of sensation, orgasm, etc. etc. (! the list is endless) xxx (ps. lucky you and I'm very envious )

strangeyettrue I feel for your pain, hopefully you'll get an appointment very quickly.

Sure - I don't really want another Op, would be happy to go with what it looks like as long as these pressure pain & feeling of needing a wee goes & of course hubby can get past it lol!!

Wouldrather, he is the consultant on my NHS notes, however have always been seen by other Drs & another Consultant did the Op( think he maybe the Big boss)
so it was a bit of tricky one, he didn't really want to see me private yesterday thought I shouldn't have to pay, but have a feeling it was a conflict of interest, I am going to give this double weeping ago till I go back next week & go from there. He did say because I have had a Hysto to repair both walls can make the Virgina very tight & sex difficult ( hubby was there ) so now he has him on side for no Op

Footle !!! Long may it last - my parents kept going until last year when chemo put an end to my father's manhood, aged 83 (which was a sad day for them) so you have at least 20+++ years left! Keep going for the rest of us!!! X

Gail - how about a pessary for you to alleviate the symptoms, then you will feel fine and not need another op, as long as your fanjo isn't blocked X

Thankyou all.
Sure- It's only very slightly poking out, it tends to do more so at the height of infection but I think that's more oedema.
I just want them to get cracking, my GP says pessaries and pelvic floor is too little, both my uterus and bowel are prolapsed too but are not as symptomatic apart from a bit of trouble with opening bowels and have to manually push prolapse in to help. I guess that in itself is not helping infection. But they almost seem to be competing and pushing each other out which in turn forces any pessary and makes the cystocele worse.
Its good to here that waiting should be a reasonable time as a collegue had to wait 9 months, which prior to all the infections was fine, but apart from feeling lousy, it's upsetting my daughter having to come and see me in hospital everytime I go downhill.
It's been very helpful to read everyone's messages though, it something I have not really had the chance to discuss with anyone, as soon as you start talking about these things people seem a bit horrified.
So thank you

Strange - sounds similar to all of us I really hope you are able to get sorted out soon. Are you being referred to a urogynaecologist? They are the consultants best able to fix this as it is their specialist area, so if not I would suggest you ask/demand to be seen by one prior to any surgery xxxx Good Luck

Sure, I've asked 2 separate medical staff & both have said I can't have one as I have no uterus would I lose it up there as nothing to stop it at the top??

Hi all

Happy glad you had a great holiday bit TBH sounds wonderful.

Strange sorry to read your story hope you get an early appointment. We are all here to help and provide a listening post as you go through this.

Fen I would love to be at the appointment where we all came with you. Even better I would love to get all our consultants in a room with all of us so we could question them about conflicting advice and different care received.

Tink I was advised to stay off the caffeine by my consultant and the person who did my wee test told her colleague that if she did not stay off the coffee she would be doing the test on her soon! I do notice if I have a couple of cups of coffee shop coffee in a day I have the urge to wee frequently! I have really cut down on coffee drinking which has been extremely difficult as I am a coffee lover :(

My news is that I went to see my consultant today seven weeks post op. I spoke to him about my concerns and he said to remember that it is still very early days in terms of healing. Althought the stitches have gone on the surface the stitches underneath may not dissolve for 3 - 6 months! He examined me and said that both prolapses are completely gone, in fact if he had to show a perfect repair he would show mine :) not sure if he was congratulating me or himself!

I was told not to contemplate sex for at least another 4 weeks and then he went in to great detail about how to tackle it for the first time.

Interesting point was he said PFE's would not prevent prolapse reoccurring, he said woman have a design fault with their pelvic floors men don't have! The best thing from now on is to avoid the things that trigger the fault, constipation, prolonged bad cough, lifting. He said he often gets women back in to have it fixed again who say oh I was doing the gardening and felt something pop! Yikes!

The other thing he said was he had done the cystocele at the same time (originally only down for posterior repair) because once he had done the posterior repair, he could see the cystocele was hanging down and needed doing.

I think that's all, can't think of any other useful info to share.

Best wishes to all

Pip

Pip - if we got them all together it would be a bit like Question Time wouldn't it?

Can I ask a few Q's (would appreciate as many replies as possible)...
If you had a cystocele repair is a lump still visible?
Did you have any 'bobbly bits' left hanging?
Did you feel like your fanjo is still gaping?
Do you still get aches/pains even if you're 'fixed'?
Would love to be armed with some answers ready for Thursday.

Pip - your consultant sounds lovely and in some parts I am heartened by his advice especially as I am 4 months post op for rectocele and have been feeling some pulling - think it probably is the stitches. BUT what is it with PFE's? My consultant is a huge advocate of them. I haven't had much faith but have gone along with quite a strict routine to prove to him and myself that I have done all I can to keep the cystocele at bay and not get sent away to do the exercises after a long awaited appointment. I am so pleased for you that he did the cystocele at the same time as the rectocele.

I don't want to be a weight lifter but I am still finding it hard to accept limitations on my life.

Fen

Answers to your questions

No lump from cystocele visible now.

I do have a bobbly bit hanging and asked consultant about it today, he sort of squinted and said which bit! I had to find it myself to show him which bobble I was talking about. I had to stand up in the end so I could find it. Yes I have no inhibitions left, I will quite happily touchmay fanjo infront of my consultant and nurse just to find the bobble I am concerned about! He said it was tissue from the scar, he had to put some deep stitches into the muscle just where the bobble is. He said it would probably go, if not he could easily remove it but not to think about it for at least 6 months.

No I do not feel like it is gaping. I some times feel downward pressure which concerned me but now I have had it checked I know it is just healing.

Yes I still have lots of aches and pains, in my fanjo, perineum, up my bum! My consultant said it is early days, it is still all swollen so take it easy, use pain relief and movical to keep constipation at bay!

Hope that helps

Pip

Would I know what you mean about the limitations. I was hoping to start getting some confidence in my body back so I was faintly horrified when he said to avoid these things from now on. To be fair though we did not discuss specifics I.e. can I carry a bottle of milk, a shopping bag, small child without causing damage. I must do that next time.

Pip - someone somewhere should train these people so that they give the best, standardised care. I've been told I may well need another op but can do what I want!

Footsie he said to have lots and lots of foreplay, use lubrication and know it will hurt at first as I now have a nice tight vagina ready for great sex. his actual words not mine!. He did add that it will get better as it all relaxes. I have told my dh to start planning my seduction :)

The PFE thing is funny isn't it, my consultant seemed to think they were great for keeping incontinence at bay but not for prolapses.

Fen totally agree I think it is amazing the different advice, surgery we have all had, when suffering from the same problems. I do think it depends on how experience your consultant is.

Piply - how you didn't combust with mortification on being told how to have well lubed sex by your consultant I don't know!!!!!

I'm not sure I get the PFE thing either. Don't most prolapses occur because tissue is actually torn? I have a rectocele & I can kegel until the cows come home, but it isn't going to repair the tear in the tissue. I presume that PFEs help with muscle tone & that is obviously a good thing as it will help hold whatever has collapsed inside you - but it isn't going to make it any better? Is that right - or am I missing something?

Hi all, glad recoveries seem to be going well :)

Footle, I've been diagnosed with irritable bladder (had leaking and urge incontinence since childhood) and will be starting treatment after my six week check following the recotocele repair. This is to consist of pfe, bladder retraining and medication. I'm a bit confused as to how the pfe part will help too. I had a pfe referral prior to the rectocele repair including the stimulator, and my pf muscles did not improve at all, so not sure what has changed. It's all very confusing isn't it?

Pip - dont know how you held it together, am blushing even thinking about it lol

Fen - re cystocele; I don't seem to have a lump now although it is very early days yet (can't even see evidence of a fanjo, so definitely not gaping anymore!) x

re Pfe - I was told not to do any for at least 6 weeks now, and have also been told that they don't make any difference to prolapse as it is the ligaments that are torn, and vaginal tissue stretched. I think if they are toned, then your fanjo is less grand canyon in dimension. I worked on mine massively before this surgery (using the i-touch sure) and found that it was impossible for the probe to work both sides at once as there seemed to be a lack of muscle in the middle where the cystocele was, so it was a question of left side then right side. It didn't seem to make any difference to the prolapses which continued to get worse, but my vag muscles got so strong that when the consultant inserted the speculum and asked me to cough it shot straight out and hit him in the face, at which he remarked that there was nothing wrong with my muscle tone!!!

Pip - thanks for sharing that info and please keep us all updated as it is very relevant to me and you are a month ahead post op xxx

Just an idea - shall we all be brave one day and arrange to meet up in London???? Could be fun!