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Pt 7 (Feb13) Any old prolapse! Uterus/womb prolapse, rectocele, cystocele, enterocele, urethrocele, incontinence, pelvic floor, anterior and posterior repair, TVT etc

(993 Posts)

This is thread 7 (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 - the previous 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

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.

Nannasylv Thu 03-Oct-13 17:55:21

Troubled - I was hoping that hoisting everything back up might stretch the intussusception out, or would this not be the case if they did that sling surgery? I tend to think that if it's stretched taller (ie - back to whence it came), it's going to take up the width (rather like a pair of tights on the right-sized legs.

Nannasylv Thu 03-Oct-13 17:48:21

Gingeroots - thanks, I've looked at both links, however no-one seems to display the indicators for surgical intervention. I've read, on other sites, that pain, digital evacuation, and difficulties with vaginal intercourse are considered to indicate the need for surgery, but I can't prove that the NHS should be obliged to intervene surgically. Anyone know where I could find this? I can't give up! I've also contacted the surgeon's secretary, and asked for a report of their findings/reasons for their decision, to be sent to my GP (I saw him this morning), and to see them sooner than 3 mths. She was so helpful, and understanding, and said she will try to bring the next appointment closer. By-the-way, does anyone know if Estrogen? creams/pessaries help with any of this (I was asked, in the hospital, if I currently take any HRT)? Has anyone tried the Aquaflex pessaries for improving muscle tone? I've even ordered those, to make sure my muscles are in tip-top working order (maybe get a 5 out of 5 score lol!) and maybe they can hold things back a little?
Hugs and thanks to all!

Westcountry Thu 03-Oct-13 13:29:39

Sadly I didn't get to see the surgeon who did my op , my pain got worse and worse and I ended up at A&E in agony , after a week in hosptial it has been decided I have nerve damage , I'm on all kind of narcotic painkillers and nobody seems to have any answers, I'm devastated and in pain every day , I'm told to wait and see if the nerve gets better . I didn't know that this surgery could leave me like this , don't know if ill be able to work and as sex is not possible due to pain I don't know how my marriage will go ... I wish I never had the op I the first place it was the worst decision of my life . Today I'm seeing a nerve pain specialist to help with my quality of life and see if he has any suggestions for how to proceed , I first thought that there must be a way to fix it if surgery caused it , but it's not that simple . Has anyone heard of this happening before ?

Bladderama Tue 01-Oct-13 18:13:03
mrsclairet Tue 01-Oct-13 16:31:00

Oh by the way the op I had was a posterior and anterior repair.

mrsclairet Tue 01-Oct-13 16:30:38

Thanks summertime, I am disappointed it didn't work 100% first time but I'm hoping it is something that can still be fixed, things have improved since the op but my GP said today I have got some scar tissue and I'm a bit worried that I will get more if I have another op. But hopefully it will not be such a big op next time? I guess I need to stop worrying about it until I talk to the consultant as he is the only one that can give me any answers.

Tr0ubled Tue 01-Oct-13 14:53:39

nana as you have an intussusception could you ask your GP to refer you for biofeedback? My posterior and anterior repairs have sadly not fixed my need to splint, and post surgery I have more problems going to the loo than I did before. I was sent for a defecating proctogram (my 3rd) and they found an intussusception. This along with a few other rectal problems cause me more problems than my rectocele ever did sad However I have started to see a physio specifically for biofeedback and it is helping, even after just a few sessions. Certainly worth a try for you, even if its just as a short term aid prior to surgery.

summertimeandthelivingiseasy Tue 01-Oct-13 13:54:17

What was the op you had?

Hopefully the consultant can give you the pros and cons of an op when you go there.

TBH, I had a perineum repair with my op, and was told it would make things tighter and to use lube. It seemed so at first, and the geography is slightly different, but does not feel any tighter in a bad way, and I have to use lube anyway (meno), so I wouldn't let that put you off.

They just have to give you a standard list of downsides and you need to understand it, so that you know what can 'go wrong'

Don't dispair smile

mrsclairet Tue 01-Oct-13 12:04:27

Hi, I feel a bit like crying! I have been back to the GP today who is lovely, I went in about my kidney scan but ended up telling him I am still feeling uncomfortable so he examined me and said my vagina is open at the bottom?? He asked me to cough and said it looks like the muscle tissue isn't supporting my pelvic organs properly. I am seeing the consultant again on the 18th, do you think I should push to have another operation to tighten me up? My GP said he thinks I could do with it being tightened a bit more but there is the risk of them tightening it up too much. I don't know what to do now, I am only 32 so don't want to never have sex again but I also just want it to be properly fixed.

IDoAllMyOwnStunts Tue 01-Oct-13 09:24:19

Good luck musttidy, nerves completely natural. I was like a zombie beforehand. Be thinking of you. Hope it all goes well, x

MustTidyUpMustTidyUp Mon 30-Sep-13 23:08:38

I have my op in the morning. Feeling a bit nervous. Can't sleep. What might I have forgotten?

gingeroots Mon 30-Sep-13 10:27:04

nanna although I see that there is some kind of get out clause regarding "monitoring your condition " I woder if there is anything in these links that might help ?

www.nhs.uk/choiceintheNHS/Rightsandpledges/NHSConstitution/Pages/Yourrightstochoice.aspx

www.nhs.uk/choiceintheNHS/Rightsandpledges/NHSConstitution/Documents/2013/choice-framework-2013-14.pdf

Maybe you could contact the Clinical Commissioning Group mentioned here ?

^You can contact the hospital or clinic providing your
treatment, or the organisation arranging your treatment
(this is usually your Clinical Commissioning Group).
Clinical Commissioning Groups must provide advice or
assistance to patients who have waited or will wait
longer than 18 weeks, or two weeks if your GP thinks it
is possible you have cancer.^

IDoAllMyOwnStunts Sun 29-Sep-13 21:06:24

I know what you mean - it felt surreal when I was at hospital, couldn't quite believe they were going to 'fix' me after all those years. I was weeping with relief in the anaesthetic room.
Hope it all goes well for you.

Homebird11 Sun 29-Sep-13 21:02:47

In a couple of weeks, provided I can get rid of my cold. Just trying to get my head round it is finally happening.

IDoAllMyOwnStunts Sun 29-Sep-13 20:57:20

Homebird - I've found drinking one of those Actimel a day after surgery has helped - especially as they pump you full of antibiotics at hospital - seem to really help re-balance my system. Easy to drink and lots of nutrients too.
Not sure if you're prone to cystitis - I am and thought as they'd fiddled with all my bits this may be a time it would make an entrance. I've stocked up on Cranberry juice and been drinking a couple of glasses a day since surgery. I've also stocked up on cycstocalm sachets but not needed them at all yet.

Good luck - when is your surgery?

Homebird11 Sun 29-Sep-13 19:57:47

Thanks for the list

Footle Sun 29-Sep-13 19:57:14

summertime, I was told not to use anything scented to wash with - might be best to leave the nice smells till you've had time to heal.

Nannasylv, it's a desperate situation and you have few options. How long is it ? 18 years or something ? Short of rocking up at the Health Secretary's lair and demanding attention, your MP is as high as you can easily go. You'd probably rather not go to the local paper .. I'd find that very hard.
I wonder if anyone here has had surgery under the same health authority that you live in. If so, you're off to a good start.

Nannasylv Sun 29-Sep-13 18:32:55

Homebird, OH how I envy you! Good luck!

Nannasylv Sun 29-Sep-13 18:31:19

Footle, you must be telepathic! I was talking to my niece about doing that, just this morning!

summertimeandthelivingiseasy Sun 29-Sep-13 16:49:36

Homebird

My list:

Movicol
Glycerine supositories
Sanitary towels
paracetomol, ibuprofen, codeine (not good for constipation)
lubricant (gentle such as Sylk, Yes ) for later use..........
bath stuff such as salt, lavender oil, teatree if wanted
easy to wear clothes, esp trousers
easy food
fruit and other food good for insides....
things to read, do, dvds, music bearing in mind you may not feel like doing much
hospital friendly night clothes
hand cream - might as well catch up with the manicures!

Footle Sun 29-Sep-13 16:00:39

Nannasylv, nice to see you back, but it's hard to believe you are being left in this situation even now you have the diagnosis. A drastic suggestion : have you thought of asking your MP to find out why you are being refused surgery ?

Footle Sun 29-Sep-13 15:56:30

I am a twit. Got the thread upside down. I am now standing on my head so it's the right way up.

Nannasylv Sun 29-Sep-13 15:16:49

Thanks Bladderama, I'm just getting the transfer of equity done, then will see to the divorce (hopefully), but then I'll look into a private consultation. Last night I just felt so depressed I wanted to curl up and die. Today I'm trying to get my fighting spirit back by continuing with the renovation of the bathroom. Still buying lottery tickets, as that might help (in my dreams)!

Bladderama Sun 29-Sep-13 10:08:00

Oh nannaslyv sad a huge hug from me. I was wondering how you were.
This has been the most awful journey for you.
I am glad that you finally have a diagnosis and know what is going on but am so very sorry to hear that they are going to wait another 3 months to see you and are not planning to repair.
Did the Dr give you a reason why they would not offer you a repair?
It is truly shocking the differences in treatment for our pelvic floor troubles, it has such a huge impact on our quality of life and well being.
I really don't know what to suggest for you other than paying for a private consultation with a good surgeon and being asked to put on their NHS waiting list. This seems to be something a few people in RL have done.
I hope that you feel better soon after your GA and that you keep posting x

Nannasylv Sun 29-Sep-13 02:31:24

I think I just posted this in the wrong place.
Hi, I've not been on here in ages (I had nothing new to report, and I couldn't cope with seeing how so many were getting repairs, and I was still struggling to get even a diagnosis), but I thought I'd come back and say that I now have been diagnosed (yesterday) with a moderate (not small) rectocele, and a cystocele (I had an examination under general anaesthetic), as well as the intussception. However, it still seems that they are not planning to repair???, and will see me in three months (to discuss the situation), despite the physiotherapist saying my muscles work well (4 out of 5 score) and she would recommend repair as the only way forward! I just want to sit and cry, and wondered whether my personal bits are supposed to completely descend (to the point of being visible at all times) before any kind of repair might be considered. How much is it to have this all hoisted back up in a private (presumably very costly) clinic? I am sick of being in pain, having to manually evacuate, and not being able to guarantee that one bit, or the other, won't leak if/when I get the chance to have sex again (my H left me in February, after making me spend most of our 9 yr marriage celibate, so I would like to think there was some pleasure to be found in the future!).
I've never heard of a man being refused a hernia repair, and I see news of girls getting bigger boobs because their small ones upset them, so why is this considered non-essential?

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