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.

Roseanna1... Wow surgery 8 days later that is very impressive. I like the sound of that. I wouldnt even have time to stress over things with it being so quick. Then again private clinics is a business and they want your money.

I think everyone I have seen so far is reluctant to offer surgery because of the transplant so dissmiss me and leave me im tears which promps them into telling me I need anti depressants or therapy. Ive had my case packed over a year now as I thaught I would have been sorted by now.

Yes, I think you are right that the consultant should match the patient. Right now the way I feel I could do with Harrold Shipman as I have used every ounce of energy fighting for help and I am no further forward.

I have had a quick google at the NICE guidelines but I will need to get to a pc for proper research. Thank you for your help.

Footle... I have no idea why they have done all the tests and not help me. I would not have put myself through the humiliation of it all if I was just left like this. I might change my name to "torturedtodeath" as that seems very appt at the moment.

Bladderama... love the name x Than you for asking how I am, how thaughtful. I am alright at the minute because I have another week off work and can rest aswell as take movicol to help. I have clarted around for years with fibre, laxatives and stool softeners and I can not get the balance right. I either lose control, produce too much gas and mucus or give myself the runs. I can not get the balance right and of course I can not be having these problems when I have to go to work.

I have a doctors appointment in 3 weeks time. I already had it booked for something else but I will whinge about my prolspses now. I could get a sooner appointment but it will be with one of the othet GPs who seem to have lost their ears because they do not listen.

Bladder unfortunately I have first hand experience of what Guyfawkes said. I was initially sent to a colorectal surgeon who after lots of yucky tests (we know the score!) diagnosed me with a large rectocele. He refused to operate due to me being "too young for this kind of surgery". However when I asked if I might get further privately he said he had recently set up a private practice and would happily see me there!!!

Just to balance things out a bit, I know this doesn't help you Mangled, but for the benefit of lurkers or posters still awaiting referral, I managed to get referred for surgery fairly easily on the NHS with milder symptoms than many on this thread have described (no incontinence to speak of and not affecting my work) so it isn't always a fight. I realise I've been very fortunate, but don't want others to be discouraged from seeking help.

Hello can I hijack please - my DM had an op called colposuspension approx 3 weeks ago for vaginal prolapse ( I hope I have correct lingo)
She has had no aftercare yet ( follow up at 6 weeks)and wonder if anyone can advise on three concerns -
1.How long is it normal for bleeding to continue?

1. She keeps being told by friends and relatives that their operations didn't last.. Is that normal ?
2. My main concern is how do we know if she is overdoing it - she isn't lifting anything but she is up and about most of the day and pottering around doing washing up and things .. She finds it impossible to do nothing despite me nagging her that she may be reducing the chances of things recovering as well as possible..

Any input most gratefully received.

Mangled-my heart goes out to you. I am not in quite your situation physically, but wanted to offer you a hand to hold with regard to feeling tortured and exhausted and sad. You deserve to get help, you may just need to shout loudly to get it!

I have been arguing with my GP for 2 years about my symptoms and pain and problems. He has been worse than useless and I got very depressed and lonely at having to deal with these awful things on my own. I changed GP a few months ago and it's SO MUCH BETTER NOW. I am on a waiting list for much needed surgery and getting further tests done.

It CAN get better and it should. Please don't feel like you are a hypochondriac for changing doctors. My advice is to search until you find someone who listens and takes you seriously.

Many hugs to you, I understand what it's like. Keep talking here.

I have HAD IT today. I am on the brink of refusing any more tests and just insisting that these surgeons fix the known problems and stop trying to find anything more.

I hate the tests. Hate them. I know they are necessary but do they honestly have to make them so utterly degrading and humiliating?

I don't want to know the extent of the nerve damage I may have anymore. I just want the rectocele and prolapse fixed so I go to the damn toilet without drama and pain. I can't use tampons anymore because I can't get them past all the bumps and bulges! Ugh. UGH.

Live - your mum should definitely get the bleeding looked at. Light bleeding is normal for about two weeks, but after that infection is a concern. My DM can be stubborn about health things, but will usually see her dr if I offer to make an appointment for her!
Mangled, I've been thinking about you a lot which is why I haven't responded before.... My symptoms were not as bad as yours, but after my first op I was still having symptoms and was very unhappy (couldn't wear thongs as my rectocele rubbed on them for example, and much more besides). What swung it for me was writing a letter to the Head of Gynae at my local hospital, in which I listed everything that was happening, and how it made me feel (abnormal and no confidence, not able to start a relationship as I didn't want to have sex the way I was etc). I would really second Tink's suggestion and contact PALS if I were you. If you don't feel able to say what you want to, write it down (make a list first putting things under headings such as physical effects, emotional effects (how it makes you feel about yourself) and how it affects your life (sex life, going out, working)) as this will help you to think things through. Don't leave ANYTHING out, even if you think it is small as it will give an idea of the whole picture iykwim. Sorry if that comes across as bossy , but I think you've lived with this long enough! Just to add, I went to see PALS before my first op due to concerns about something very traumatic that happened to me at the hospital which I hadn't been able to speak about in RL. The lady from PALS was lovely (despite me sobbing throughout) and really did help me. Good luck.

Oh Whodve, so sorry - I spent so long composing a reply to Mangled (and taking a phone call) I didn't see your posts. I know it's not what you want to hear but could you strike a compromise where you co-operate with the tests but ask for a plan to be put in place so you know when at least some surgery can take place? Mind you, I can totally understand if you were to go to your next appointment and just burst into tears and say how you feel - in fact I think you should... To go on and on with no end in sight is enough for anyone to get to the end of their tether. You need to let them know how you feel - after all, the bigger part of prolapse is how we feel about it, otherwise we would all just carry on dosed up to the eyeballs on painkillers and laxatives wouldn't we? Have a look at the reply I posted to Mangled - I think you will find it relevant. Putting out a hand or two for you and Mangled to hold. (FWIW, I have nerve damage to my bladder and nobody could care less! )

Yes, whoknowswherethemiseltoes, you are correct in what you are saying that some have an easier time getting tests and treatments and quicker fixes. I have read through all the previous prolapse threads and there is a huge difference for many of the posters. I read one that they were all examined,tested and operated on within a couple of month. I guess its like any kind of health issue and different hospital protocols with surgeons experiences and prefrences also. It is the same with surgery recovery, some seem to have major issues and problems while another poster takes a few paracetamol and feels amazing almost immediately. I never knew it was such a common medical problem until reading this website either.

Liveinthepresent.. I think it is good that your mother is feeling alright to potter around and be mobile as long as she has the energy to do so and NO lifting. Her body will tell her if she has overdone things and needs to rest aswell as an increased pain. But I have also read alot of conflicting information on here so I guess my reply is not very vald. Your mother does need to be very careful incase she damages any of internal repair work as everyone idea of pottering around is different too.

awww whodveThaught thankyou for your kind words x I have heard the saying those who shout the loudest get listened to. Well after a whole year of trailing back and forth to my GP about the pain I did get annoyed and raise my voice and earned myself a doctors asbo letter sent to my home. I was mortified and embarrassed but was at the end of my tether with pain down below and this was before I knew what was wrong and all anyone offered me was STI tests. I sleep alone.

Sorry to read you have had a long drawn out battle also but pleased your nightmare is going in the right direction at last. Heres hoping you do not have long to wait between appointments either. Best of luck for a smooth hassle free journey xxx

whodvethaught. What tests did you have today and what is the nerve damage you mention please. At least you are a step closer xxx

fengirl... Thanks for the reply and I think I will write myself a list of symptoms and how much it effects my life. Its so much easier having everything written down because all i do is tediously repeat myself over and over again when I have been on my nhs medical merry-go-round as they pass me onto someone else or discharge me. I would not have been iterrigated this much by a policeman if i witnessed a murder. The issue I have with PALS is that I used to go to school with her so I would rather not have such peronal details read by her. It was bad enough that a chaperone for the gyne was someone from my school days. Every part of this journey has been horrific.

I am very sorry to hear you have nerve damage to your bladder, I care xxx How has that happened and what are your symptoms please. I have some angry nerves down that area and my symptoms were some evil pressure force making me want to wee every 12 seconds. I also have burning pain. I take gabapentin medication and its seems to be helping touch wood.

So now I have shared my 4 year nightmare with you all I am hoping to sometime soon to share good news. I have a Drs appointment in 3 weeks and will ask to be reffered for a 3rd opinion. If not I will ask to be refered for a private one

Thank you so much everyone. I am not usually an all about me me me person despite what the last few pages may look like. I am so pleased I have found you alk but sad that so many suffer with this. night everybody x

Hi

Just coming on to have a rant Definitely back to not being able to get clean, my rectal prolapse is back and I am upset, angry, fed up. So much for the doctor saying that the rectocele procedure should hoist everything up. And now everything is back to being stuck in the prolapse, it is really hard not to strain. Roll on March when I have my next appointment. Really hoped 2013 would be a good year, but I guess being able to have a BM with no difficulty was too much to ask for (yes I am feeling sorry for myself).

Anyway that's my rant, hope everyone is ok and that you all had a good Christmas xxx

Tinkx!!! So sorry to read your news. I know little about rectal prolapse but it sounds awful. Is there any chance things may improve when everything is healed from the rectocele surgery? Keep up with whatever laxative works best for you - Constipation is definitely a formidable enemy. Hopefully 2013 will still be your year and this is only a setback. Xx

awww nooo tink sorry that you are still having issues. March seems such a long time away for an appointment when your still struggling with the same problems after surgery. Fingers crossed once your healed that it improves things. xxx

Troubled that is shocking and awful that that consultant did that

Whodve so sorry that you are having such a terrible time with all of the awful tests that they are putting you through. They are so difficult and humiliating. A big hug from me

Fen also sorry to hear that you have nerve damage to your bladder, are they looking into it for you?

Tinxx. rant away and then some more. Hope that things do improve as you heal. Have you thought about phoning either the gynae ward or your cons secretary to get your appointment brought forward? March seems like a long wait for you x

Whoknows do you mind sharing the name of your PFE app? I can't find one. It was also good to read that you got referred and treated quickly, hope that you are still recovering well.

Mangled I don't really know what say other than keep persevering and posting and don't worry about what others think it is your body and your life. I cannot imagine how much a kidney transplant took to get through or the effect that it would have long term, so brave of you.

Bladder - it's called Kegel Trainer, you can search for it in the App store, it comes up under Iphone rather than Ipad apps. The logo is a pink square with a tick on it. I definitely need it, still getting a bit of leakage. Otherwise doing well at the moment thanks.

Thank you whoknows to leaky bladders

Hello all. Sorry to hear some not feeling so good, thinking of you all.

Saw my GP on Thursday, she was very reassuring . She examined me again and thought cystocele not serious, recommended physio. The lumpy tissue I felt plus discomfort are possibly something else entirely. She does think I may also have interstitial cystitis which might explain other symptoms. I feel much calmer and more positive. On with the pfe and no more running.

Ladies I really thank you for all your generous support. You are an awesome lot and I shall be following your progress but possibly ( hopefully) not posting so much.

One thing I did forget to ask was if it is safe to iuse a pelvic toner? Has anyone used one and are they recommended/safe for mild cystocele?

Thinking of you all. X

bladderama thanks for your empathy about my transplant xxx Although I did find the whole process of kidney failure a bit overwhelming at the time, it was not as bad as this prolapse nightmare. There is help for life threatening conditions and all tests, procedures and appointments follow each other rather quickly and all by very kind drs and nurses. Now these prolapse appointment , tests and consultations take months and months; and you end up with no light at the end of the tunnel as in my case. But I guess my case is different because of the kidney being placed in the groin and plumbed into my bladder from down there where a surgeon thinks it is too risky so discharges me back to GP.

Sorry to here of bladder leakage. I have no experience of this so can not really relate to how unpleasant it must be for you. Hope you find the kegal some help.

Frequent wee... There is a test they can do to diagnose The inter cystitis if its Bothering you that much. The fill your bladder up with something. I can not remember all the details though a quick google will inform you more as im only on my phone with a titchy screen.

I had frequent wee and toilet visits and an awful force making want to go to the toilet even for a few dribbles. This drove me bonkers. Don not want to frighten you but i was sent for a cystoscopy to look for small bladder stones. I didnt have any but my bladder seems to have calmed down its frequency now my urethra is bent and forcing its way out with my cystocele.

I didnt have a pelvic toner but was given a pelvic educator by the physio and that put every nerve super angry with lots of spasms. I was over doing things for an overnight quick fix and never used it since. Good luck with everything and hope you find and improvement in your symptoms xxxx

Happy New Year everyone. A huge thank you for all your support this year. Op date for cystocele repair and poss hysterectomy is end jan so not long to wait. I'm feeling surprisingly good.

Happy New Year everyone and a big thank you for all the support this year from me too. xx