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

[gottagetthroughthis]

This is thread 7 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
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.

Wishing everyone in the FF club a very happy Christmas xxxx
...and speedy recoveries in 2013 x

Cost of private surgery please anyone? Good morning and merry xmas to you all. I have been reading everyones nightmares and horrors of prolapses for a while now. I have bowel prolapse grade 3-4 and bladder prolapse graded a 2. This was last examined 6 months ago and its worse than ever and i am sure i have a urethra prolapse now as mt urine is very slow at times and a horrible force sensation where i wee crooked. Gynae doesnt want to see me again as im not incontinent and offered pain clinic and psychology to help me cope. I have seen the colorectal and had the poo xray (awful humiliation) That detected an internal prolapse, rectal i think. All that was offered was anal irrigation to help me manage my stuck poo as all other softeners and laxatives make me loose control as i dont have hard poo its just stuck. Diets with fibre ect do the same. I can not have irrigation equipment unless i do a training session infront of a nurse, how cruel i could just cry. Anyway i have no further appointments with anyone and nobody wants to see me anymore. I am not even being monitored to see how bad things get. I was told rectal prolapses dont get surgery until its fully..... fell out hence the irrigation referal. I have to strain to clean myself so my insides of my bum come out and it takes all day to empty. I cant believe a doctor would let me walk around like this especially since ive had the pain down below for a few years now but this was before i knew why and discovereddd tha that ssso my insides were hanging out. All the drs i have seen dont think an operation is best for me at this time but psychology or counselling would be the solution. Anyone know an average private cost as to have surgery for this inhumane torture the nhs have put me through as i can not bare it any longer.

Merry Christmas everyone :)

Mangled - sorry you're having such a rotten time. I had different procedures from what you might potentially need, butif it helps, I had posterior repair for rectocele and then tvto tape insertion andthen removal which incl. CAT scans, urodynamics, hospital stay etc came to about 8.5k. Consultations cost around 200 per visit. I was lucky enough to hae insurance through work though. Do bear in mind that you can ask for a second opinion on the NHS too though. A urogynaecologist rather than standard gynae might be better as they are the experts for prolapse. The rectal prolapse is a bit different though, and colorectal would be appropriate.

I'm not a doctor, but I think the problem with rectal prolapse is the significant risk of complete faecal incontinence with surgery so unless the symptoms are so bad they warrant that risk, they are usually quite reluctant to operate.

From the urinary side of things, the cystocele could be causing those. Urodynamics testing could help identify that, but unfortunately it's another quite difficult test emotionally.

None of this is easy I know. I'm not sure the treatments privately will be terribly different from the NHS ones (you just tend to get seen much quicker) and consultants are usually the same ones who work for the NHS too. I do think a second opinion might be helpful for you though to help you explore the options that are available.

Not sure if any of this is remotely helpful to you, but in any case sending you hugs x

Thank you very much for taking the time to reply to me roseanna1 , it means alot that you have taken the time and on xmas day too. Ouch that is more than I thaught for the cost of the operation.

I have had 2 referals to gynae and the GP will not send me to anyone else because they have discharged me and dont need or want to see me anymore. So ive had nothing but stress and hassle fighting for help and i am disgusted that the uncaring and dismissive Drs think it is alright to let someone walk around with their insides hanging out. I have had physio a year ago and she can not dot anything for me. Had pessary and that was horrid i couldnt use it without pain and my rectocele was sitting underneath it so i was still sitting on my insides. I can not even stand to wear clothes as they rub in mt insides.

Just to complicate matters and which would probably double the amount of tests or procedures i would need before any operation is that i have had a kidney transplant and no doubt the cost of surgery would be double. The kidney is placed in my groin area.

The colorectal dr is wanting to help manage my symptoms with irrigation rather than operate and rightly so really. I can not face doing irrigation lessons infront of a nurse, i actually feel sick with the thaught of it. But all irrigation (peristeen equipment) does is address stuck poo it doesnt help with all the misery and pain of my rectocele and cystocele. I do not have any power to get the urine out so i wee all over my bum cheeks and thighs but this has been ignored and all i get told is i am not incontinent.
Thank you so much you have been more than helpful. Merry Christmas and thanks a million xxxx

Roseanna your previous post brought tears to my eyes, thank you for such kind advice especially after your long journey it is very humbling and I have followed your posts since before joining the thread and taken courage from them x.

Merry Christmas to all you lovely ladies x

Mangled what an awful position to be in that I cannot imagine
The cost for my private treatment for anterior, posterior and perineal repair was 6.5k but am another one that has insurance through work and has since taken out private insurance for my DH and DC's.
I continue to have similar bladder trouble to you but do not have an urethrocele so am another one that would advise going back to your GP to demand a second opinion from a urogynae. One of the lessons that I have unfortunately learnt over the past 12 years is that this subject is consultant dependant and I feel very blessed to have fallen into the hands of the one that I have now who has had to sort out the mess that previous ones have left me with. As Roseanna said the private consultants also work for the NHS so if you can give us an indication where you are one of us should be able to recommend one.
I know it's difficult but keep pushing to get the diagnosis and treatment that you need.
Hope that you are all having a lovely day x

Mangled - just read your post and am so sorry you are not being supported by the NHS. Going private does sound expensive but I too would be pushing to see another consultant. Perhaps they can't fix everything but should be providing good information on exactly where you stand with each bit. Sorry have to go ... door bell going 13 for food - will post later. xxxx

Just a quick post from me, Mangled - perhaps have a look at your GP practice website or ring the reception and ask if any of them specialise in Women's health and make an appointment with that one, you should not be having to put up with this.

On a happy note from me, I have just spent 3 hours on my feet cooking Christmas dinner (got DH to lift the turkey in and out of the oven) and not a twinge out of my repair, I'm so pleased. Hope you are all having a lovely day. xx

I hope eceryone had a Happy Christmas, and did not do too much
I thought at 11 weeks post opI could do everything apart from lifting things out of the oven.......... I was knackered by the evening. Today I think some help will be called for.
Feeling so good compared to even 2 weeks ago though.
For thoses a few weeks behind me I can remember feeling as if I was not getting any better, just walking made my tummy hurt and terrified me that I had done something. I did a bit of dancing (one song) Xnas eve and you would think I had done an aerobics class. I intend to start walking on the treadmill at the gym tomoorow, sacred but have to remember that consultant said I could do anything, just listen to my body (apart from very heavy weights)
There are not many people that have these ops and dont have at least a bit of pain and troubles......... however for most it does come to an end and there is life after prolapse.
Good health for 2013, you lovely ladies x

Slink - I plonked myself on the sofa after dinner and didn't lift another finger all day, also fell asleep, which is quite unlike me (I had been awake since 3.30 off and on with a thunderstorm though). I am definitely still more tired than I used to be (I'm 13 weeks post op) but I think that now is probably due to lack of regular exercise as much as anything, I need to get back on track with it now Christmas is out of the way.

Mangled - sorry I didn't post back yesterday. I did start to write something before I went to bed but couldn't quite think what to write - rectal prolapse is outside of my experience. I feel really sad that you are having to put up with such miserable symptoms and it seems nobody is listening to you. However difficult it is I suggest you go back to your GP as they are the gatekeepers for referrals. I enquired about a private consultation when I needed to go back following a repair for a rectocele and the cystocele had got worse. I was told I couldn't have a private appointment without a referral because I had been discharged so had to go back to my GP. Who knows has a good point about a women's health clinic. From your description my symptoms are mild in comparison to yours but I pressed for a repair because it is affecting my daily living; stopping me from doing all the things I love and a disaster on the intimate front - I feel fortunate that the consultant was very approachable and viewed me as a person. My rectocele repair done in March has been successful. It would be useful to know what area of the country you live for consultant recommendations. As Roseanna pointed out most consultants do a bit of NHS and private so you could always just look at paying for the initial consultation for advice and revert to NHS for the op. Good luck and big hugs all round. x

How are you feeling now Tinxx?

Whoknows I also managed to cook the christmas dinner too for the first time in years and this is the first year that I have not fallen asleep after it which I think is testament to how much better I feel in myself since the repairs.

Hang in there those of you that are still waiting for diagnosis and treatment it will be worth it and it does give us a new lease of life.
Bladder issues aside I cannot believe the difference and complete lack of discomfort that I now have.

Some-one had an appointment tomorrow and I was popping in to wish them luck but cannot remember who it was (sorry) hope that it goes well x

Thank you for the replies everyone. I have had a 2nd opinion and they too advised a counsellor to help me manage and dont want to see me anymore. The words she used was " I am sorry if you have been disalusioned but there is nothing we can do for you, we cant help you, we dont need to see you again" how cruel could a Dr be. Nobody sees it as a problem because i do not pee my pants and as long as urine comes out I can just plod along in my misery.

I am in North East, aged 44, one apparently normal child birth although I found nothing normal about it lol. Had epsiotomy 20 years ago that had to have the stitches redone because I was stitched and sewn up wrong. I have lots of pain in the scar area itself but the doctor said it was impossable to have pain in a scar so old.

I have been to the Dr who deals with women and she told me to take paracetamol, do pelvic floor and have laxatives. I had to practically force her to take a look at me. She just said I have a relaxed vagina and its normal for my age and it might help if i talked to my friends about my problems. Silly woman so I will not be going to see her anymore.

I take gabapentin for the burning pain down below that I have had for 4 year. The burning at times when I have overdone things is like acid being poured down below. I was told the burning is not related to the prolapses but I am not convinced because now my backside had caved in aswell I get the burning in that area also. I take oxycontin for the prolapse pain which causes constipation so a continuous circle of misery. I can honestly say that going through kidney failure was a breeze compared with prolapsed insides.

As for going for private treatment I have no money so it would have to be on a credit card. I did not think it would have been such a high cost though. Do you think it would be possible to just pay for the surgery itself and not the tests as i have already had the tests and bladder and bowel scans on the nhs. Or am I being naive. As I only work part time I have no way or means of paying the debt either. Isnt life awful at times xxx

Sounds as of it has been a good Christmas for many.

Mangled, so sorry to hear about everything you are going through. I'm not big on experience and my problems are very minor compared to many, but I'm a good hand holder. I think finding a GP with an interest in women's issues is vital for you.

Bladder, it's me seeing my GP tomorrow. I was diagnosed by a GP registrar who did not suggest anything other than pelvic floor exercise. I have a lot of time for my regular GP so hoping to have a good talk to her. Feeling guilty at my self pity when others are battling much more difficult issues.

Hugs to all.

I never thaught I would be facing another new year walking about with my insides hanging out after the Drs have found out and done the tests to see what is wrong. I even said if you can not but my bits of body back to where they live then take them out. That rang alarm bells and now they think I need anti.depressants and psych help grrrrr. I also asked if the doctor would think it was acceptable to walk around for 4 year with his willy stuck in his zip ha ha ha so why does anyone think its alright for me to walk around like this and just continue to dissmiss my issues and just offer an increase of pain relief.

It doesn't sound acceptable Mangled. Is there any chance you would change GP? Sorry you are having to live with this. X

Thanks frequentwee I have thaught of changing GP but I was told it was a classic sign of being a hyperchondriac so I have stayed put.

Thanks for all the replies everyone you have been more caring and helpful than any Dr I have seen. I am using a mobile so apologise if my posts dont make much sense or havnt acknowledged someone that has replied but I am unable to see the posts and remember what was said once I scroll down to to the reply box.

Mangled so very sorry to hear how awful you are feeling and how poorly you have been treated.
As hard as it is keep seeing your GP and asking for a referral. I think that the majority of us here on this thread have struggled to get listened to and referred and it is an awful part of what is a very difficult journey for us.

It is definitely not a quick process and does not seem to be handled well by our current health service who have so many restrictions at the moment.

The ladies on this thread are all amazing and offer support, advice and hand holding when you need it, I know that I would not have coped without them x

Hi Mangled, I went private after 2 NHS appointments where the Registrar was very dismissive of my symptoms. I couldn't do my full-time job because I couldn't wee after sitting for 4 hours and had to go down to half hours. I researched the consultants at my local private hospital and chose a urogynacologist who specialised in prolapse. I rang up for an apptment and was just told to get a GP referral letter to take with me (which I did). Appt cost £150 and he had a quick look at me and offered me an anterior and posterior repair and a vaginal hysterectomy (I had also had 15 yrs of dysfunctional /heavy bleeding and had tried all other treatments). I paid £5,400 for the surgery including 3 nights in the private hospital and a follow-up appt at 6 weeks. At 12 weeks post -op I had another anasthetic and an afternoon in hospital to sort out some troublesome stitches that hadn't dissolved. There was no charge for the additional work.I had the op 4 months ago and I'm back at work full days, sitting for 8 hours a day. We extended our mortgage to pay for it but BMI offer interest free credit cards to pay for it. It was money well-spent and I haven't regretted even tho' the recovery was sometimes hard. I also was not incontinent but couldn't wee or poo straight , was splinting in the loos at work and was suffering UTIs because I couldn't wee. I had a large rectocele bulge which prevented me from walking far or cycling. You don 't need to have the tests re-done, just ask the GP to include the results of a your tests in the referral letter. My surgeon could see with his own eyes what needed doing. I'm 50 and had 2 uneventful births over 25 yrs ago. Hope this helps:)

Hi Everyone, feeling much better, thank god for antibiotics, can now walk and sit with no pain

Mangled - have you complained, try PALS initially and then go as far as you have to. If you have a rectocele and or cystocele that are causing you problems then you should have surgery if that is your choice. Like you I have no money and if they had not agreed to do it on the NHS I would have fought like mad to get them to do it - it is not right that people feel they have to go private. Ages ago I went to the dentist (I have five teeth that are crowned at the front, had them done when I was twenty-one on the nhs, cant remember why now, but I presume because they were bad) anyway went to a nhs/private dentist as a nhs patient and was told they needed replacing, but that I could not have it done on the nhs and that it would cost me 1900 private. I was furious and complained all the way to the top, it took me a year and many phone calls and even more letters, but I was entitled to having them replaced on the nhs and the dentist had been talking shit. I know it is different, but if you need it done that you have a right to get treatment. I am sorry I am not good at writing and it all sounds a bit muddled. I just think you need to start complaining in writing and then I am sure you will see some progress.

Tink, you're absolutely right, I too am furious that I've had to pay. I've worked full-time for 25 years and was in danger of losing my job because of my problems. In that sense, it was money well-spent to get it done and get back to work. But I should never have had to pay and, like you, I fought to get bridgework done on my teeth on the NHS (and won).
I honestly think there is an NHS policy now not to do any surgery unless the condition is life-threatening. I really didn't think I had time to pursue complaints and force them to do it on the NHS. I don't even believe in private healthcare really as it's the same consultants who work in the NHS refusing NHS ops who will happily do it privately. Suddenly you're a customer and have what you want. It's correct that if this was a man's complaint they wouldn't be refusing ops.

You're right, it does seem to be so much less of a battle when its private. I had to see two different gps just to get them to give me a referral letter for a private consultation, but as soon as I had the referral I had an appt within the week and surgery 8 days later.

Having said that, there's also a lot that depends on the surgeon's personal preference, so whilst some are inherently scalpel-happy, others are very conservative and won't do surgery unlessthey think its absolutely essential. In some ways, I think its really important the consultant matches the patient if that makes sense.

Might also be an idea to look up the NICE guidelines as NHS doctors are compelled to follow these unless there is a very good reason not to (you'll find it by googling NICE and the condition eg NICE rectal prolapse) and it might give you a better idea of what to expect.

Bladder - you're welcome (hugs)

Footle I lose this thread too from time to time

Tinxx glad to hear that you are starting to feel better.

Frequentwee how did your appointment go yesterday?

How are you doing today Mangled?

Guyfawkes that is awful that you have had to resort to paying for private treatment that you clearly needed . These repairs make such a positive difference to our lives that we should not be denied them it makes me so cross.

I agree with Roaseanna that although it is the same consultants that work privately and for the NHS it is Dr dependant. I certainly don't think that a decent consultant would offer to do something privately that they would not be happy to do on the NHS. The differences that I have noticed is that there were more options available and no restrictions on things like time in theatres which is very restricted on the NHS. It goes back to it being so important that we find the right consultant.

Gutfawkesnight.... Following your reply of your horrible prolapse journey and private surgery I have had a look at BMI hispitals and there is one in the North East. I have never heard of it before. I wl nor be able to have an interest free payment option as I do not earn enough and had bad debt previously (due to poor health) so thst will be refused. You seem to have quite alot of surgery for the price compared to others I have read. I, like you have pain sitting, bending, walking and it has got si bad now I can not even find a comfy position to lie in bed. I strip off as soon as I am home as I can not stand to wear clothes or underwear.

I will have a better search at the BMI ince I get to a pc as I only have mobile phone to google. Pleased you got sorted with your issues xxx

Tinkxx65... No I have not complained to PALs and never thaught of doing so. I do not think it would do me any good because all a consultant has to say is that I have a kidney transplant and It is too risky.

My case/file has been to the pelvic floor multi disaplinary team and all that came from that was "managing options for my symptoms" The option was that I was offered peristeen anal irrigation. I can not have the equipment unless I have training sessions to make sure I am able to use it and do it infront of a nurse to see that I am capable of doing it all by myself like a big girl. I can not bring myself to do this and refuse. I know I did the poo xray but that was a quick 5 minute test. The irrigation session I will be sat on a comode for 30 minutes with a nurse and trying to empty real poo not barium paste. Its enough to make me cry. If I do not do the managing options I was told I wont be seen again because I have to help myself. This was said by colorectal and so I have no further appointments and rectal prolapse is only operated once it has completely come out of my bottom.

Then I have the cystocele grade 2 and rectocele grade 3-4 and a gynae (2nd referal) has discharged me even though everything is worse and is probably a grade 666 now ha ha. The gynae suggested pain clinic where they do biopsycho or whatever its called. Oh yeah because talk therapy will stop m sitting on my insides and help me empty my bowel. They make me so a
annoyed.