Looking for support with pressing for prolapse surgery

[vipersnest1]

It's a bit long, sorry.
After lots of messing around (seeing gynae first who denied I had a prolapse, being referred to colorectal who said I did, then being referred to women's physiology), here I am, back at where I started basically, with a rectocele, nearly two years later.
I had it repaired before (11 years ago, but hyper mobile which might have contributed to the failure of it, plus a pelvic floor dysfunction which I've now sorted out - that's what the physiology was for, plus being menopausal now).
It's miserable. I won't go into all of the details but if you know, you know.
I hate it, I feel unclean and abnormal.
I'm seeing the same surgeon again that I've already seen twice. Each time he has just told me to avoid straining, and that's it.
I've even sent a letter into the hospital saying how it affects me (and I'll take a copy with me when I go).
How do I say in a firm way that I cannot continue with this? ATM, I feel inclined to tell him to try urinating on to his own hand every time he has a bowel movement (sorry for the TMI, but that's what I have to deal with).
My prolapse is at the point of nearly hanging out, and I am not relishing the thought of going through surgery. Has anyone had the same experience,

Did they offer any alternative solutions like a pessary to help? What's the rationale they gave for not operating?

I've recently had an op for this....you need to push for a referral to urogynaecologist..don't take no for an answer.

I'm so sorry, @Embarrassingparent and @Leicestershiremum, I didn't see your replies earlier.
I've had no offer of a pessary (when I wrote a letter I even said I would buy one, but didn't know which I should get), and when I saw the women's physiologist, she told me she wouldn't proceed with the things she would have done as I was too distressed. She was suggesting I should be able to speak to my family about my issues (there's no way - it would be crossing a boundary that most people would have in place, not to mention it would be a taboo subject), and also take measures to ease my symptoms which would have made me feel even worse about my condition because they were so degrading.
At this point, I'm prepared to be stubborn - as I wrote in the letter I sent, I don't want to be an 'old lady' with this problem, and I'm in my late fifties now. It's got worse and is really bothering me.
The only other reason that anyone would want this surgery is if they had some kind of mental health condition (sorry to bring that into it) and I certainly don't - both times I've had surgery in the past for prolapses, I've had nasty infections which have seriously affected my recovery, to the point I've had to take way more time off run is the norm for the operations I've had.

When I went for my consultations I had to complete an nhs questionnaire which had lots of opportunities to share how it was personally affecting me in all areas. Have you been asked to complete this? This was then discussed with a panel of consultants before they proceeded to operate.
I have just had a rectocile and perinium repair.for a stage 3 rectocile. I will need a repair going forward for a cystocile, but not there yet.
I was never offered a pessary at any point. I did see a physiotherapist but that didn't work, and even after my op I am waiting for electrostimulation therapy as my muscles are naff.
You said about infections after your last op, did you have mesh then? This had now been banned because of problems.
I'm a bit muddles from your reply...do you or don't you want surgery? Are you or your doctor suggesting only someone with mwlental health problems would have surgery.
Have you not discussed this with family etc at all.? Although it's not nice to talk about it.was important for me to share. It was affecting physical activities, tiredness, pains etc , and obviously after the op I needed support.

@Leicestershiremum, I want / need the surgery. I did do a questionnaire, but that was for physiology, not the consultant.
The reason I've mentioned my mental health is because I'm sick of living like this, but even if that wasn't taken into account, the prolapse affects me physically as well - if it gets any lower, it will be hanging out, plus other issues.
Meanwhile, I feel like this time I'm being seriously fobbed off - no-one would choose to have this surgery gratuitously and I feel like I'm being treated as if I want the surgery, rather than need it, IYSWIM.
I haven't had any mesh, but was very unwell both times (cystocele repair and hysterectomy first time, ended up off sick for ten weeks, rectocele repair and pelvic floor repair second time, off for nine weeks).
I'm quite happy to discuss details such as pain, but obviously do not want to discuss intimate details of how I manage my prolapse.

@Leicestershiremum, I forgot to add my cystocele is back too, but that isn't causing me any symptoms.
As far as my pelvic floor is concerned, I've been told it's pretty good (should I be flattered I wonder?) - actually one muscle wasn't relaxing properly, so was 'too strong' in a way. The muscle thing isn't an issue now.

No advice but sympathies. I'm younger than you and in a similar situation. My prolapse is 'hanging out' as you say.

It affects everything including my ability to exercise. Had one surgery 7 years ago and as the problem has come back (probably due to my having young kids and over exerting myself) they don't want to do any more surgery to help. I keep getting referred round the houses to physio and back. After my last experience with a male gynae I also want to request a female surgeon but they're like hens teeth and as I'm struggling to even get agreement to surgical repair it feels like a moot point.

With me they say I'm too young and should wait til I'm in my 60s to get it done [I'm early 40s). They day that if I get it done now the scar tissue could prevent it being done again when I'm older and it inevitably prolapsed again.

Honestly I think they just don't like to offer the surgery and want us to just 'get on with it'. It costs a lot and only affects women so they don't care.

Hope you find a solution just wanted to say you're not alone sadly.

The issue is menopause can cause an increase risk of prolapse so as horrible as it is to be made to wait it is the sensible option if you're still premenopausal

I think op is in menopause already? And for those like me who experience prolapse issues after childbirth we should wait 15, 20, in some cases 30 years dealing with prolapse and related bowel, urinary, social and sexual issues until we're post menopausal before having surgical treatment?

@Embarrassingparent, @movintothecountry is right. I am definitely in the menopause now, and even if I wasn't, I've actually lived with the prolapse for about seven years now, with the effects of it getting worse over time.

Oh and @movintothecountry I have a nasty area of scar tissue too. If the surgeon uses that as an excuse not to operate, I'll request that a plastic surgeon be involved. I'm also ready to ask for a fascia lata graft (where the fascia of the thigh muscle is used to reinforce the tissues) if need be, if I'm told it could fail again and am fobbed off yet again.
I hope you can tell I've done my research!

I realise this my comment was to the post above mine. I should probably have quoted it to avoid confusion.

So, it's tomorrow. I'm off to bed now and will update, but in the meantime if you're awake, I'd appreciate any positive thoughts you can send my way.

Final update for @Embarrassingparent, @Leicestershiremum, @movintothecountry and anyone else interested:
I was with the surgeon for nearly twenty minutes and the conversation was looking like he was only saying that he would discuss my case with the MDT. Interestingly, I have spent most of the day sitting on a hard chair and then had to drive quite a distance, so the prolapse was feeling the worst it had for a while.
I asked straight out that if I hadn't had a prior prolapses if he would offer surgery.
After a lot of umming and ahhing, he said he would still discuss with MDT but in all likelihood, yes.
The upshot was that by the end of our conversation was that he wants me to do another proctogram 'urgently' we all know that still means a wait, but I don't mind 'so that we know what we're dealing with', so that he can then discuss with MDT 'as he'll need another pair of hands' (due to scarring).
I'm thinking that his response meant that I might well get the surgery? I don't want to get my hopes up, so would like others people's opinion.
Thanks for reading if you have.

Anyone? I'd really appreciate thoughts either way.

@vipersnest1 did you ever get your surgery? I hope so!

Sadly not. My case was finally discussed by the MDT team over a month ago and I'm down to have a transanal repair of my rectocele rather than the ventral mesh rectopexy which I believe is the best route for me. (I only found out about the MDT decision after poking about in my NHS records.)
I'm disappointed but hoping to influence the decision when I speak to my surgeon.
However, I've also realised that I'm going to be continually bumped to the back of the queue as he is also a cancer specialist.
I'm still thinking about what to do, as in being referred to another surgeon.

Oh sorry to hear this. Hopefully when you see him you can discuss as you say. Not good that they haven't even seen you this long on though!

THIS IS NOT A ZOMBIE THREAD - OP BACK TO UPDATE.....
Sorry to shout!
Well, who knew......
After experiencing vaginal flatulence at work (OMG - I work with teenagers mostly) I did go and get a pessary fitted, not entirely successfully. It was a massive ring pessary which was extremely uncomfortable. I bought my own smaller ones but have recently given up because they flipped so they aren't in the right position and while they relieve some of the discomfort it doesn't help with other symptoms.
I also experienced something much more mortifying a while back which ended up with me being sent to A&E to get checked for cauda wquina - not something I want to go into detail about.
I've spent the last week or so feeling really disconsolate as when I would ever get a date, but it happened today. I was just about to get my hair washed at the hairdressers and nearly didn't answer my phone as it came up with unknown number.
I'm having surgery in just over three weeks time!!!!  I had a few tears and am still taking it on board.
Thank you to everyone who commented and to @Mnk711 in particular.

@vipersnest1 congratulations, hope it all goes well for you and resolves your symptoms

Thank you for your wishes @Mnk711.
I really appreciate your support.
I do so hope this will be the end of the misery for me.

Oh gosh. I wasn't on your thread originally but I've just read through, what a long time to wait whilst suffering. I really hope the surgery goes well and things get better for you.