Pt 8 (Oct13) Any old prolapse! Uterus/womb prolapse, rectocele, cystocele, enterocele, urethrocele, incontinence, pelvic floor, anterior and posterior repair, TVT etc

[Bladderama]

Welcome to thread 8 (again - see below) 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.

With apologies for confusion in thread numbers - an earlier thread was called part 7 but it was actually the 6th thread.

Here are the previous threads:

Thread 1
Thread 2
Thread 3
Thread 4
Thread 5
Thread 6
Thread 7

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.

I hand delivered my 'complaint/moan' letter on Monday and hope to hear something VERY soon. However the consultant who may now be doing my op is on leave for 2 weeks so they told me not to hold my breath until those 2 weeks have passed. I breach at the end of Jan/beg of Feb so am REALLY hoping to get surgery in pretty soon after that but as it's a relatively long op compared to other gynae prolapse ones I might have to wait a bit longer. Feeling very down about it and being pretty anti-social at home! Just don't want another summer to come and go without being able to get out and do stuff that I'm used to. Can't even plan a holiday not knowing what will be happening.

Sounds like you are both (Happy and Dragon) are having very tough times. My heart goes out to you both. I too hope to have a bit of 'doss' time whilst I'm off work without feeling too terrible to enjoy it!

Hi happy, how you doing today? Antibiotics doing their work yet? I went for a painful walk round town, sat for 30 minutes in costa trying to relax but it was so uncomfortable I went home and have laid on settee all afternoon again. Can't wait to see consultant tomorrow although I am sure he will say it is ok.
When I am horizontal all afternoon it really eases but within 5 minutes of getting up it swells and stabs me. Really feels like my bladder. I then get horizontal and eventually it eases til I get up again. Really passing me off now!

Noordinary - your situation was my worst nightmare and turning up at the hospital to be sent home is utterly traumatic . You sound much saner about it than I would.
Happy and I seem to be going up and down. I read some of our posts back and my posts at least are inconsistent in terms of how I am doing. I am getting frustrated now as I am more than four weeks post op. Some of the information suggests some woman return to work at this point! I have the option of going in for lunch during a meeting break at work but it might not be possible since I can't really sit upright for an hour. Blink in' Nora!

Dragon, not just as fluey as yesterday. Tablet making me feel sick but think I caught infection in the early stages. Smell is clearing now thank God as I have to do school run. I stand well back at gates and judge which way the wind is blowing so smell doesn't carry
Want to say good luck tomorrow hope you get some answers as to what is causing swelling tummy. Don't take no deal of them, go into teacher mode x:0)

That was don't take no crap of them, bloody predicta text.
No ordinary, I'm glad to hear you handed letter in. Hopefully it got rid of some of your anger. If you don't mind me asking what operation you having done.

Went to see consultant and sweated and cried my way through it. He said my swollen belly can't be due to operation! I have read here or somewhere else that others have been told the same. He wasn't dismissive though and said he could see I had an ongoing infection so I have joined Happy on a second antibiotic, metronidazole. Happy, I shall read back your description of what your GP said it was like to take.
Glad to say he didn't think there was any erosion of the tape but there were one or two other possibilities so I will have a scan at some point. I would not be surprised if all this is down to the infection which time and antibiotics will cure.
Funny moment of the appointment was when he asked if I had had sex yet! I had sat down like I was sitting on needles, shown him my belly and told him how painful it all was. Bless him, I suppose it was a question to be asked!

Happy I'm having a sacrocolpopexy. It's mesh stitched around the outside of the top part of my vagina then the mesh is tunnelled around my internal organs to then be pinned onto my spine somewhere in the sacrum area. Apparently it's technically challenging for surgeons to do it laparoscopically due to all the suturing needed, hence not many of them qualified in the hospital. I know in the grand scale of things there are a vast amount of ops that are far, FAR worse, but it's my own little nightmare going on. Wish it was all over and done with.

Btw - I loved your comments about standing down wind with your smell at the school gates.

Dragon - how are you now? I read some of the previous thread/pages back just before, and saw that you lived alone. It must have been so hard for you recovering on your own or has it been quite 'useful' at times, not having to worry about anyone else in the house? Oh, and isn't it a bit too early to be considering sex yet? Aren't you only about 4 weeks post op too?

lolly are you still checking in on this thread? Just wondering if you had started exercising again yet ( assuming you did before). I am really getting to the stage that I need to - too much xmas overindulging combined with weeks of inactivity before have certainly taken their toll on my waistline now!!! !! I requested an appointment to see a specialist physio at my post op check but have had to keep changing appointment so wont see anyone for a couple of weeks - That's atleast 2 more lbs at my going rate!!!! How are things going in general with you now? anything to report - dtd yet?? Think it will be fine for me when actually get round to doing it!

Also - just a question for those that know how to use MN better than me - how do I change my psuedonem (sp)?
And meant to say wanted to see physio to have advice regarding safe exercising (am paranoid about undoing good work!) sorry had a few glasses of

Hi, just thought I'd share some things with you lovely ladies- speaking as one who is now 8 years post op and not yet menopausal.

I had cystoceole, rectocoele and a wrecked perineum along with a dropped uterus after childbirth. My repair was anterior, posterior, perineal reconstruction and Manchester repair (this one is quite an old fashioned technique). I had no bladder issues prior to surgery.
The posterior repair failed a few months after the op, the anterior repair has gradually failed over the course of 8 years and I'm back to where I was. The other 2 bits are fine.

What I learned:
-When they give you a success rate for an op is, ask what the follow up time is. usually they only follow up people for a couple of years & then you fall off the radar. I reckon I have done well to get this long out of my op.
-Have proper physio with a women's health physio at the first signs of problems. This was never available to me prior to my op. I have since seen one and she was fantastic.
-If your perineum is wrecked at DC1 do not let them talk you into waiting until you have finished your family before having a repair. Your perineum forms vital pelvic floor support.

• If your sex life is good, be aware that it could be permanently very not good after the op.

-If you have no bladder symptoms prior to an op, be aware that in repairing one condition it may uncover a problem in this area that was being masked. Always ask what the risks of developing incontinence are. -If there are several different repair techniques for a type of prolapse it usually means that none are great, otherwise every surgeon would be using it.The pelvic region is a hugely complicated region of the body in terms of muscles, blood vessels, nerves and organs. -Ask loads of questions however silly you think they seem, and don't allow anyone to disregard your concerns.

• Double the recovery time they tell you.

-Each repeated surgery caries a lower potential success rate.

I'm not going to have any more surgery unless my innards are outards. I don't want to take the risk. I can live with the bulges. I have a good sex life. My rectocoele is controlled by a high fibre diet and plenty of exercise. My bladder function remains ok.

Noordinarygirl - yes, 4 weeks is too early for sex and I was surprised he asked but maybe he was just checking. As for living on my own, it was far from ideal in the first couple of weeks and I really needed a bit more hands on help than I had. It was complicated as my daughter who would have helped was dealing with her own sick baby. However, after that time it has probably been better as I have no one to run around after and have been able to laze around to my heart's content. I think those with small children probably have more of a challenge than I did.
I woke up feeling less sore than yesterday. I think a lot of the pain I have had recently is to do with the infection and today is day 4 of the co-axiclav and day 2 of the other one and symptoms are easing. Has anyone else had metronidazole? I googled it and others have reported feeling very unwell on it?

Your op sounds like a biggy and fingers crossed they pull their finger out and give you a new date soon. How are you coping?
lotsofquestons I am seeing the physio people on Tuesday and will be interested in what they say. Never been good at any sort of exercise but as intheround says, it is very important. I really don't want to do this again and I am still loving peeing and pooping normally.

To one and all, how much time has everyone had off work with these ops? I will have had 8 weeks by the end of my last sick note. Would particularly be interested in knowing what hours are involved and how physical they are expected to be.

Does anyone know of causes (other than prolapse) of pain when sitting? I had a rectocele repair about 4 months ago. The gp says it has all healed niceley and she cant see why I should still be in pain. The only suggestion was constipation, so I am still on the fybogel and senokot every day so not constipated but this is not helping the pain. I never got a follow up with the gynea. I always assumed this pain was caused by the rectocel but it seems not. The pain is not in my bum but throughout the genitals (sorry tmi !)

Dragon glad you are feeling a bit better this morning. Think those antibiotics are good at getting the little blighters. Hopefully you will be on the road to recovery. Sex is the last thing on my mind. Hubby said oh your near 6 weeks. I gave the look that told him a lot.

Noordinary that does sound like quite a big operation no wonder you are nervous and just wanting it done. I would be the same. Isn't it terrible what us women have to go through.

Lotsofquestions, I'm interested too when I can start running again. If ever, I feel like Mrs blobby at the minute, I have put on some weight not through over eating from just sitting on my rather painful area. I am an active person and I think this is the most frustrating thing.

Dragon maybe you will find out when you see physio, my after care has been shocking really.

Jcake maybe you should ask for re referal as its not right you have been left in pain. Just for your own piece of mind.

intheround - can I ask you - you say "If your sex life is good, be aware that it could be permanently very not good after the op" yet you have had these ops and say you have a good sex life??
Can you explain? thanks

I had 6 weeks off -then went back with mixed feelings - in one way I really wanted to go back and feel 'normal' again but I had quite liked my time off (job not great) and felt very vunerable to start with but only work parttime and office job

Lotsofquestons - I know what you mean about wanting to feel normal again. I am avoiding work and did say before all this I would do some work from home but I really don't want to. I think I am losing my confidence a bit and don't want to face it just yet. For another 3 weeks I am on sick leave and could start doing some bits and pieces but at the moment I can't face it.
I am hoping in a week or two the urge to work will return as I feel better. At the minute it doesn't feel like up it will.
Does anyone else feel guilty about not working? I am really annoying myself by not being able to just relax and concentrate on getting better.

Happy - if you feel anything like me, you're hubby is barking up the wrong tree! Consultant (the one who told me at the beginning that I was too young to be having these issues and surgery was the way to go), said that he gave younger women stitches that dissolve in a few weeks but at my age he did ones that would take about 8 weeks. Apart from wondering if I am young or old, sex would be a bit prickly for the man with a line of stitches to rub against!
On the other hand, I am sure there might be a market for it out there somewhere!

Gotta I think I was lucky- I've read on other forums of people who have developed problems after the op, especially when tape or mesh is used- due to erosions etc. I didn't have any tape or mesh though and it's something I personally would want to avoid. So much also depends on the skill of the surgeon.
I think what I was trying to say is that my criteria for surgery now would be "Is my lifestyle being significantly affected by my prolapse and do the potential benefits outweigh the risks?" The answer to that currently is no.
This has been a helpful website: prolapsehealth.com/

www.webmd.com/urinary-incontinence-oab/news/20110713/fda-surgical-mesh-for-pelvic-prolapse-risky-unnecessary
I'm not scaremongering but it is important that all possible side effects are considered.
www.nhs.uk/Conditions/Prolapse-of-the-uterus/Pages/treatmentoptions.aspx
My surgeon was very insistant that I didn't have a hysterectomy as he said I could develop complications later on. You'll see from the NHS advice that Hysterectomy on it's own is not considered a solution for prolapse now. The muscles also have to be repaired.
Below are the NICE recommendations
www.nice.org.uk/Search.do?searchText=prolapse&newsearch=true&x=16&y=12

Haha Dragon I'm sure there would tut men eh. It's the last thing on my mind I got a mummy look where I don't have to say any words the face says it all. Hubby hasn't brought it up again (the subject I mean). How you feeling on the new antibiotics??

Happy- so far ok on the antibiotics . Just a bit under the weather and tired. I did laugh when I read the list of what they could cause. How about you?

Yeah I felt like I was playing Russian roulette with these drugs. Nearly had to take diazepam straight after alas I'm here to tell the tale. No wonder you're feeling like the way you do what with having an infection for fortnight. Hopefully things will start looking brighter. Has the swelling went down any?

For those of you who are experiencing mesh complications or who are considering having mesh implanted, this may be of interest.
I discovered this website when I was considering repeat surgery
www.tvt-messed-up-mesh.org.uk/index.html

In the round while I agree that some do go wrong, as with all surgery come the risk of complications, I also know of 3 of my friends (over10 years) that have had tvt tape that have been very successful and have drastically improved the quality of life. A lot of women on here are very intelligent and I'm sure with all surgery they do thorough research into this. The web is a wonderful tool for research etc. Thank you for coming on here and bringing another view point. I think we know recognise you're view and concerns but some ladies are recovering from these operations and they need reassurance at this point in their life's without causing undue stress and if they do face complications then your wonderful advice and web link will be of great benefit a lot further done the line. Thank you.

Sorry that was now (know) just woke up