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.

Just popping by and saw a couple of new names, wanted to say hello.

Daisyji - I am still waiting my first op so nowhere near as much experience of it all as some of the ladies on here, and can't answer your specific questions, but I hope it goes well for you this time.

Huntingbears - I joined the thread 3 or 4 months ago, having lurked a bit previously, like you I found the threads were a bit long to really follow. Sorry you are feeling down about your problems at the moment, perhaps you could tell us a bit more about what's going on (there's no such thing as too much information on this thread) and see if anyone here has had similar experiences. I think it's fair to say we've all felt pretty low about the state of things down below at some point. I feel decrepit too, I took up running last year and was doing really well, I stopped in May when things took a sudden turn for the worse in the pelvic floor and feel really unfit now.

WhoKnows Thank you for responding and I'm sorry you took a turn for the worse - running? Wow you must have worked hard to achieve that! Any idea what caused you to feel worse?

I have gorgeous DT's born 18 months ago. Forceps & nightmare labour; have cystocele & rectocele. Nightmare potty problems (me, not DT's). Been told to forget about surgery until DT's are older. Really sad to hear people have to have more than one op.

I had a traumatic forceps delivery 8 years ago followed by a less traumatic ventouse one 6 years ago and developed a noticeable rectocele after the second. However it didn't cause any real problems until this year, I was out running one night and I felt a real dragging in my abdomen, the discomfort got worse over the next couple of weeks till it was continual apart from when lying down. It's actually eased off a lot now but that is in part because I've cut right back on physical activity. I'm booked for surgery in about 3 weeks.

Hi everyone.
Daisy, it may be a good idea to search for TVT tape on the Internet. There are three good sites, tvtinfo, TVT mum and meshed up mesh. There is also a you tube video of Natalia price from the jr hospital in oxford removing TVT. My experience was not good, and I would not recommend it at all. A friend of mine receives a call a day at least from women who are desperate for help in removing the tape so it is not at all uncommon to have problems.
I really don't want to worry anybody, but can only go on what I know. I haven't read back very far so I don't know how bad your incontinence is. Many women say they would rather wet themselves than be in the pain you can get from the tape. I have benefited a lot from Michelle Kenway's pelvic floor exercises. I am certainly not back to normal yet and it is a year from posterior repair and perineal body repair, and eight months from TVT removal...it is so easy to put in and so hard to remove.
Someone asked me way back which tape i had, it was the johnson and johnson gyneacare 'gold standard.'
Good luck to all of you, xxx

Hi everyone, posted a few weeks ago regarding seeing the "consultants assistant" at follow up after anterior, posterior repair and TVH.
As I said still seem to have cystiocele and rectocele and also skin tags not there previous to surgery.
I am very grateful for the advice from you ladies and thought I would let you know I have managed to arrange an appointment with the consultant who did the surgery. Will be seeing him in November.
Thanks again.

Welcome to all of the new ladies

Daisyj I am 15 days post anterior, posterior and perineal repair and had the mesh discussions with the consultant. His advice for me was to avoid them so I went with the natural mesh free repair for both and I feel really happy with that decision. Feel free to ask any questions about his thoughts advice etc.

Colo I have no experience of that but it sounds like it is very difficult for you x

Huntingbears I can really sympathise with how you are feeling I have found posting on this thread so helpful and supportive about things that I didn't even want to think about. I am another lady that has had these issues due to two very traumatic deliveries but it has taken me over 10 years to face up to it. It must be even more difficult with such young DTs for you too x

Roseanna just wanted to pop in and wish you luck for today x

It has been quite sobering reading through all of the threads and seeing what a journey this subject is with difficult diagnosis, treatment and then so much post surgery problems and further treatment. What an incredible group of ladies you all are and so brave to share all of your experiences.

How you feeling Bladder?

5 weeks post op here. Back to work for half days & managing ok. By the end of 4 hours sitting at my desk, my fanjo is achey, but I guess that is only to be expected. 6 week check with the consultant next Monday. Hoping he'll be pleased with everything.

Glad you got your consultant appointment Jess.

Coco - apologies, I wasn't ignoring you the other night, I must have cross posted, my second post was made on my phone so didn't see you then either. That sounds horrible, have you had any improvement yet, or have you had any medical advice? I'm afraid I can't suggest anything really.

I am still very up and down post thank you for asking
On the upside I can't believe the improvement in bladder/bm symptoms which are already completely normal again. Also just feel so much more supported and comfortable down there.
But on the downside I am still struggling to sit down have a really sharp pain that goes right up to my navel and I think the perineum had fallen apart again.
Still more positives than negatives and early days yet.

Bladder, any chance you could phone your consultant to ask about the pain going up to your navel & the sitting issues?

Thanks, there's been a vast improvement. I think my bladder had been irritated/inflmmed , still leaking a bit but not to the extent it was. Hopefully it will pass

Just to quickly say Nannasylv has posted on the old thread and I've told her to come here and join us.

Coco - glad you have improved in that area x

Bladder - I still have the odd shooting pain but I think it is nerves reconnecting after being sliced and diced. I have heard it takes a while. I am about 12 weeks post for a&p, tvt, perineum and all ok so far, but still achey at the end of the day ie now!!! Have just started back at work and all is good but definitely not 100% yet in terms of leaping about and crouching down, but I'm sure that will come.

I cancelled my post-op check as I had a mega period, so have not had the all clear yet (re-scheduled for 17th Sep) but all feels ok. Actually managed to use a tampax for the first time in a year!!!! It went straight in and later on came straight out - no getting stuck, having to go round corners or twisting back on itself!! Probably TMI here but I found that mildly interesting, LOL!! (bit tricky finding a hole to put it in though - he wasn't wrong when he said that things would feel 'tight' to start with !)

Roseanna - xxx and thanks!

Fen et al, hope all ok in your departments.

Nanasylv - how ARE you?!!!!!! xxx

Fengirl1 - thanks for re-directing me
This is what I posted earlier.

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?

Also, my H has decided we need to divorce (he's developed a crush on a colleague!) - great timing!

Hi Surewoman! Thanks for asking, my post will probably explain. I'm better than I was, and hopefully closer to a fix, but will need it to be soon, or I'll lose my house (I need to be able to work!)

Nannasylv - so glad that at last you have some results after all your searching/questioning; albeit not so positive at least a big leap in the right direction. Very sorry to hear about the divorce side of things, lots of support here for you as you know. Nice to have you 'back' so to speak - keep posting xxxx

Nannasylv - big hugs.

NANNASYLV!!! thank goodness you are all right!! We were all so worried about you.glad to hear you have a diagnosis. A lot of us have been fobbed off by similar arrogant experts. They are only there because we need them and get paid handsomely for the privilege and then have to the cheek to make us feel like an inconvenience!
Long journey ahead but at least you have some answers and can go forward.
And, yes, I sympathise with the husband scenario. Mine told me I was 'On my own' five days after the TVT removal operation! Great timing indeed!!
Lots of love to you all! Xx

Hi Nannasylv, so sorry to hear of your problems.

I'm a relative newbie on here, having just had a rectocele & enterocele repair. However, it was thought at one point that I had an intussusception too. I did a fair bit of research on it and I saw a colo-rectal surgeon as well as a gynae surgeon, just so I could make sure I knew all the pros & cons of the different approaches to repair. If you do go for a surgical repair, try and get more than one opinion, because from what I can gather intussusception repairs can vary quite significantly. In my case, I felt the colo-rectal surgeon knew more about the intussusception than the gynae surgeon - but that could have been specific to me.

Sorry to hear about your H too. Mine also buggered off with a colleague - but fortunately that was well before my poo problems needed to be dealt with.

Hi Footle, did your neighbour get the surgical repair?

PostBellumBugsy, sorry to hear that your H was also a strayer! Mine has officially been diagnosed (during psychosexual therapy - 3 courses!) as Madonna/whore, pity she didn't explain the full implications, at the time, as I could have avoided the continued stress of trying to fix an unfixable marriage, on top of the bowel problems, by getting a divorce sooner! What area are you in? I wonder if your surgeon is/was less dismissive than mine, of the amount of damage it does to your whole life?

As to the impending divorce, I'm relieved to, finally, know that this marriage cannot be repaired. I was pretty sure he strayed 5 years ago, but couldn't prove it. This time (whilst doing HIS accounts for him, I saw all these calls/texts, to one number, and rang her, on his phone (in front of him!) - GAME OVER!
It looks like she has now dumped him ( there's no contact this week), he's like a bear with a sore behind, and he can't afford to move out (should have thought of that before he burned his bridges!). I owned the house, before he knew me, and he knows that I don't have to wait for him to be ready, before I start the divorce, and he has to go!

I've been open, about looking for someone new (after 8 years of near-total enforced celibacy), and I intend to just get on with finding a new, full life!

Hi everybody! Nice to be able to say something positive. A diagnosis, hard fought for, but here at last! The battle continues for repair, and for diagnosis of the SI joint problem!

I, too, had a forceps delivery (2nd child), and they have told me that this is an obstetric injury. Nice to get answers, after so much time and pain.

Hugs to all! XX

Jackie - sorry to hear about your H too!! xxx

PostB - yours too!!! (and me, Fengirl and a couple of others too!)