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.

Long time, no speak! Hi, to anyone who remembers me, and to those I've never talked to.
I couldn't face talking, when it seemed like I was the only one not progressing.

I finally got a diagnosis, after 16 years!

I have a rectocele (not major, and probably not worth surgically repairing), and an Intusseption (which is on the report, but the surgeon denied!), which appears to be causing the serious problems. I have been misled, lied to, fobbed off, and made to feel like I was imagining it all (and needed a psychiatrist, not a surgeon!). I have had to demand the correct tests/scans/appointments, and my GP has had to ask for second opinions, repeatedly!

I also appear to have an Iliosacral joint injury (that still hasn't been officially been diagnosed - appointment with another Orthopaedic surgeon on 25th September). I have the right trauma history, and symptoms, but they have only just agreed to look (they kept looking at the symptoms, so have only checked my hip and thigh, but have never checked out the point of pain - the Iliosacral joint). This also affects the movement of my bowel, and causes immense pain, as well as increasing the backing up of bowel contents.

I have been given a Coloplast Peristeen (rectal irrigation kit), which is marvellous (no more manual evacuation, or straining which increases the problem), and am fighting for surgical repair of the Intusseption. I was told that I could have either the management kit, OR surgical repair, which is totally unacceptable. I have said so, and requested both ( so I can manage it until it's fixed!).

I have asked the Colorectal nurse to look at what is on this forum, as the NHS is letting women, nationwide, suffer unnecessarily, destroying marriages, careers, and any quality of life! She admitted she has even had patients say they were considering suicide! She has told me of a forum, being put together, to find out more, and asked if I will speak with them, so I intend to tell as much of what I have seen on here, as possible. She asked what I thought of the service provided thus far, and I have been very clear, about the arrogance of the "experts", refusal to listen (I've been discharged - no further action needed - 4 times!), refusal to offer/perform the technical scans/tests needed (a quick poke around cannot possibly see what is actually in there!), dismissal of the pain/other symptoms we tell them we have, and even insinuating that "it is all in your mind!"

I can only hope that changes will follow.

What do you think?

Hello Nannasylv! It's wonderful that you've finally got a diagnosis. Perhaps you can now get on the road to recovery. There's a new thread now which you can get to by clicking the link a few posts back. It's got over 600 posts already so don't hang around or there'll be another one. Lovely to hear from you - we wondered where you'd gone!

Many thanks to all those who have shared.
I tend to name change to keep anomynous but have posted a few times.
I am 4 weeks post open mesh rectoplexy, colpopexy and had the added surprise of having my ovaries removed to add insult to injury.
Thank goodness for HRT patches.
I am still waiting for biopsy results - I hope no news is good news.

I just lifted (well dragged rather than lifted) my 12 kg child in the heat of a tamtrum (her's not mine), am a bit sore.
Please tell me I wont have done any damage.
I am also concerned about the amount of time I am having to be on my feet,
how much is too much?

It is not the first time I forgot but am a single mum to three DC (2, 5, 8) and have very little help, the cleaner I organised just quit with no notice.
I was discharged with no instructions except do nothing for two weeks and don't lift more than a kg for 6 weeks. - Easier said than done.
Surely they would not operate on mums of young children if it was all going to disintegrate if we do always stick to the severe restrictions? (grasping at straws)
My follow up is not until the end of January.

What am I allowed to do ?
How much walking?
When can I vacuum, dust etc?
Will I ever be able to run and lift normally again?
Am still having to splint perineum occassionally to poo (but no bulge), is that normal?
Am taking movicol to keep motions soft.
I am regetting doing this now would it have been so bad to splint forever?

The only good thing was them finding the dodgy ovary and removing it.
That explained a lot of symptoms for the last 4 years but none of the scans picked it up and GPs just brushed me off even though I complained every time I saw them.

It does feel better physically, hadn't realised how bad things were down there having put up with it for 8 years.
It is not nearly as painful as I expected, ovaries are the worst.

My eldest is a star. He has been lifting his sibling and other things for me but is only 8 so can't ask too much.

Oh found the new thread and reposted there

Hi Ladies,
I'm new to mums net. I'm 44 and not a new mother but have been suffering from the same problems as you girls for years. I have 3 kids -all 9.5lbs+ and born with their backs to mine so probably not surprising I have problems Youngest is 17 now so it's been going on for a long time, gradually getting worse.

I finally found the courage and spoke to my urologist (see him for a separate unrelated problem with kidney) and he sent me to urodynamics and then referred for TOT procedure.

Saw the registrar and she says I need TVT as they don't offer TOT at my local hospital. I heard that TOT is less likely to have complications??

She also mentioned that I have a 'bulge at the back' and that they'd look under general anaesthetic.

She told me about the TVT op but didn't cover the bulge and now I'm wondering what she meant and what it will mean for my recovery.

I'm self employed and can't take much time off. I work mainly sat at my PC and was told i should be ok aft 1 week, now I'm wondering after reading the threads if a 2nd repair would mean more time off.

I'd appreciate any advice you can offer.

Thanks girls
Mel x

I see there's a new thread so will re-post there :)

Hi Everyone. I wish I'd found this thread years ago. I am about to have biofeedback/physio and/or a laparoscopic ventral rectopexy (SP?).
On the plus side, have already had TVT, anterior repair and hysterectomy (uterus only) and highly recommend all 3!! The TVT/anterior repair did cause me some issues in the healing process - it's a big deal to have a huge slice cut in your privates - but the results were very good in the long run. The hysterectomy I give *** (five stars, NOT a swear word!). Stopped the huge clots and anaemia, helped prolapse, no sexual repercussions.

BUT I do have a rectocyle and a bit of rectal intussusceptions (charming!). The first consultant implied that physio was a waste of time and I should march on with the mesh/pelvic floor/rectal op. The 2nd (whom I had seen before) was more circumspect and thought we should try the biofeedback (learning to poo again, from scratch). I did say I have had slight improvement due to dietary changes and NOT ignoring the urge to go! Apparently many women feel too busy to go, and that makes things much much worse.

SO, I shall be reading everyone's posts with interest (is there a way it can be grouped by subject?) and just want to reassure people having anterior repair, TVT or hysterectomy that with patience, practical support and understanding from partner, you can recover and be much better off in every way.
xxx
BTTA

Hi, I was pointed to this thread by someone in the 'ragged bits' thread. Maybe someone can help me with stories or advice (or just enablement to sit on the couch and drown my sorrows today!).

I had a series of mortifying tests done this morning and was told that I have to have surgery to fix an anterior rectocele that has left me incontinent. I am 30 and only have one child, I am feeling terrified.

This is my second surgery since a botched forceps delivery to correct 'complications' they caused. The first was vaginal reconstruction after masses of tearing. I, well, I am tired of this and feeling very stressed.

Hi, I was pointed to this thread by someone in the 'ragged bits' thread. Maybe someone can help me with stories or advice (or just enablement to sit on the couch and drown my sorrows today!).

I had a series of mortifying tests done this morning and was told that I have to have surgery to fix an anterior rectocele that has left me incontinent. I am 30 and only have one child, I am feeling terrified.

This is my second surgery since a botched forceps delivery to correct 'complications' they caused. The first was vaginal reconstruction after masses of tearing. I, well, I am tired of this and feeling very stressed.

sorry, thread is full? Will hunt for new one.

hi ladies,
I would like some advice.
I had a prolaspe 4 years ago and it seems to rectify myself a few weeks after. I had just given birth when it happened.
last night I was constipated and noticed a bulge when I wiped myself after a wee. I'm now terrified that its back. I know my pelvic floor is very weak because I've been leaking wee slightly. I'm now terrified. I'm only 29 and I'm thinking of the worst case. is there any options other than surgery? I really don't want the surgery. if I do need it how long does the surgery mend things for? can I have a normal life? I have two young children and like running around with them. I'm so worried and have made a doctors appointment for Wednesday.

thank you in advance x

Hi there I had a posterior repair on the 13th may 2013, I am now into week five of recovery. Just want to know what activities can I do? We run a pub so not sure when I should be back pulling pints. I get tired after standing for an hour, it's more my left buttock and top of my left leg goes numb. Should this be happening? Ps, I have a four day break booked for Center Parcs ..... Stop bleeding ages ago so what can I do there also.
So many questions....

Hi Edinburgh - you need to go to the new thread (7?) which you will find on the front page of General Health (click on it at the top of this thread). Lots of people on there!

Dahlialover: I scrolled to the top and saw general health, sorry to sound daft what do I do now?

Is anyone from this thread still about?

I have previously posted about my post-birth pains and have a few questions I wouldn't mind asking someone who has had problems with a rectocele before.

I am 5.5 months post-birth and been back and forward to GP since giving birth with ongoing pain. I can't pass bowels (sorry for TMI) without being in absolute agony. I was given so many numbing creams/gels, pain relief, laxatives but nothing helped to ease the pain.

After seeing my GP again last week, she thinks I have scar tissue internally from the perineum to sphincter (I had an episiotomy and forceps delivery and a medical student helped stitch me up - that's a completely different story!). She felt a hard lump which is causing me most of the pain. I also have symptoms of a rectocele prolapse. The pain is so bad when I need to pass my bowels and just before, that I was crawling up the stairs to go to the toilet yesterday

I am finaaaaally seeing a gynaecologist on Monday (I feel like I am 5 and Christmas is coming!). My questions are:

If the gynaecologist offers physio as the first route to go down, can I refuse? Surgery is obviously risky and not everyone's first choice but I just want to be fixed. I am 27 and it's has really impacted the experience I have had with my first daughter, my relationship, when I will be able to go back to work, how I feel about myself and my body etc. I should have been offered physio months ago and the thought of just prolonging things a few months is depressing me.

If you did have an op to remove scar tissue/correct rectocele, how was recovery and how long was it until you felt more like your old self, if at all?

Finally, did they do any tests/scans at your consultation? My GP said they may do a test to check my pressure points as I have lost the sensation of needing to go and may also be referred to a bowel surgeon

Any advice would be greatful

Anyone?

Hi Snicci - So sad to read of your pain and the tough times you're having. I have lived with scar tissue from my first (traumatic) birth but in recent years had major surgery - cystocyle, recocele, bladder sling which has left me with severe damage and more scar tissue. If I could i'd never have gone for the surgery as for me personally it's left me with terrible damage and more pain to manage.
Re. rectocyle etc - i had a terrible time before and after surgery but was eventually prescribed a Peristeen irrigation kit to use daily which has radically changed things. No more pain due to pressure or needing to push = less pressure on an already scarred and fragile area. Also once I got used to my own way of using it, it gives me a little feeling of being in control again - something i've lost over the years due to the failed surgery etc.
There are those out there who would recommend avoiding any further surgery at all costs as each time leaves us with more scar tissue and the possibility of complications.
I'd certainly look into the option of using a Peristeen kit - it really is worth trying.
Such an individual thing..but there are alternatives to surgery.
Daisy x

Hi Daisy,

Thanks so much for getting back to me. So sorry to hear of your pain and troubles after surgery :( I know how much it can impact your daily life and how exhausting it is.

Unfortunately my consultation didnt go so well yesterday. Consultant wasnt very helpful or sympathetic (gynae). Now awaiting to see a bowel consultant, almost 6 months after giving birth. So exhausted of living this way, feel there is no end to it at all.

Will look into the kit you mentioned. Was this available on prescription? Not heard of it before but will check with Dr Google :-)

Hello, can anyone help me please?

I have a prolapsed bladder which has just got worse, and its uncomfortable now.... protruding

Im waiting to get an appointment with a doctor that Im comfortable with, this week.

Does anyone know what can help? Obviously pelvic floor exercises but anything else or is it always surgery?

Please anyone? I think I will just have to keep bumping because I havent been able to get any help or advice from anywhere.

Ive now got an urgent referral to the gynae for a mild prolapsed bladder and a moderate prolapsed uterus and she reckons they might need to pin it back up.

Whats the op like? Is it bad? Ive got no family near by and im a single parent as well. Does it floor you for ages or can you bounce back?

Pleeeeaase someone help.

These threads clearly used to be lively, surely not everyone is fixed and sorted?

Help please!

Hello all

Some advice please! Been having trouble leaking urine for about the past year. It's got worse and ranges from everyday leakage to completely wetting myself lately on a night out

Saw GP today and got an immediate referral to gynae as she felt my uretha had prolapsed. Said she could see it "popping out" when I coughed. I think she said it was the uretha (well, the word was definitely mentioned but I can't remember if she said bladder prolapse as well??) but I was a bit taken aback as I was expecting to be told it was age/traumatic birth related and just to do PFE (which I do but makes no difference) and wear tena for the rest of my days.

She said it would probably be an operation so here's where I could do with some advice. I'm currently the only bread winner (long story) and don't get sick pay What does the op involve? An overnight stay? What recovery time etc?

Any help gratefully received

Hi sackandcrack just wanted to acknowledge you I'm in the same position as you (have posted after yours). I'm sure the ladies will screech along with wise words soon! Till then we'll take it in turns to bump

Four weeks into rectocele repair and everything is bulging worse than before ?? Is this normal help !!!!!

There's a lot of internal swelling for sure, which takes a good while to settle down. Make sure you rest loads and get on the sofa as much as possible. Follow the rules regarding no heavy lifting. Try to avoid driving as much as you can get away with.
If you are worried, ring the ward where you had the surgery and hopefully someone will reassure you.
I had a bladder prolapse surgery (cystocele) and the cure definitely seemed worse than the disease for a couple of months. I had mine in early Oct 2014 and it was the end of the December before I stopped feeling like I was sitting on 'something'. Plenty of times during the first year I was thinking 'it's back' but it got much better over time.