Need a rectocele repair but.... And dreading tomorrow.

[vipersnest1]

It's a long one and quite niche, so thank you if you're reading.
My local hospital are doing everything they can to put it off - I was first referred for this 26 months ago.
Because I also have a problem with pelvic floor dysfunction (which is manageable, it's the prolapse and what it entails that is the real problem), I have been forced to undergo a barrage of tests and investigations which are humiliating and demeaning. Tomorrow's appointment will be no exception, but I need to show willing. (It's biofeedback which you can google if you want the details - I'm not going into them here, and I'm definitely not a poo troll - I first came here many years ago to get support with the prolapses I had then, if you want to check with MN.)
The other issue is I've had a repair before which has now broken down to the point where the prolapse is the worst it's ever been.
It's ruining my life. I'm shaking at the thought of tomorrow and am supposed to go to work after, but I'm not sure how I'll feel.
I just want to be like other people and take my bodily functions for granted and be 'normal'. I'm in my late fifties now and cannot imagine going on like this until old age.
Support would be lovely, understanding even better, if anyone else has any experience?

Err... bump?

No advice OP, but I just wanted to offer you a hand hold and sympathy. It must be horrendous dealing with all that,

I have had a lot of bladder investigations which was pretty grim and embarrassing. It was all worth it in the end though.
Are you happy with your surgeon?
Have you any choice about who treats you?

Hi there I've had some similar issues and I totally get what you mean about the constant examinations. I also found it humiliating as well as extremely uncomfortable. Looking back now I don't think it should have been, I mean, it isn't our fault and we shouldn't have to feel that way, but it is how I felt. I wonder if counselling would help deal with the emotional impact?

On the practical side I had a hysteropexy and it was very successful - though only a few years ago so there's time for it to go wrong. The combination of that and diet changes has really helped, as well as some acceptance that I won't ever be the way I was before.

Sending lots of gentle hugs! Lots of experience in the area. I was back seeing a new PT today after being diagnosed with another prolapse (had surgery around 10 years ago). I broke down in tears while giving my history it’s just humiliating. Counselling was suggested. I am not even 40 yet.

@vipersnest1 I sympathise. It is a Horrible examination. The consultant I saw compounded my humiliation by looking at the results while he was talking to me.

The one thing that has made life bearable, considering the injuries I’m living with after a mis-managed birth, is seeing a private physio who specialises in women’s health.
She examines you properly then trains you in how to isolate sets of muscles. She also set me up with and monitors the Squeezy app.

Any strengthening that you can do in that area will help in the long term with the problems you’re having.

I hope it goes smoothly tomorrow and that work is easy afterwards. It’s a shame you can’t have the whole day off.

Oh wow, you've brought me to tears, but not in a bad way.
Thank you, @endofthelinefinally, @HotPenguin and @FawnFrenchieMum.
This is so isolating. I can't even discuss it with anyone I know - not even my sister who is a very experienced nurse and midwife, or my adult daughters.
To answer your question, @endofthelinefinally, so far I've seen a gynaecologist (who said I didn't have a prolapse! ) - I was then referred to a colorectal surgeon and have now been referred to another who I've never met.
There are barriers upon barriers. I've had two flexible sigmoidoscopies (the first one painful beyond words - I complained to PALS and the doctor's response was that they assessed my pain as a 2 - it was a 10 for me, and I'm really not one to complain, but I felt I was treated very badly - it's the only complaint I've ever made and there could have been many), and I have endured examinations and a physiological investigation involving radio-opaque matter.
@FawnFrenchieMum, that sounds very similar to me - multiple prolapses treated about 11 years ago, but this one has come back (I know the cystocele has also come back, but that's not a problem at the moment). I just feel so defeated and de-feminised.
I just want it all to be dealt with and over.

@Letsgetthisteapartystarted, laughably, my pelvic floor muscles are quite strong. (And I've used the Squeezy app.)
My muscles are as strong as the average woman, but I can't grow tissue back where it has been lost - a good comparison I heard years ago is it's like having a ladder in your tights. That's exactly what's happened for me. If it worsens, the defect will get longer (and I'll end up with parts of my body that should be inside hanging out - it really is that close), or it will break down into a fistula, although that is unlikely.
I don't want to feel like a sideshow at an old-fashioned circus.
Thank you to the posters that have mentioned counselling - I feel that might help me while I'm waiting for this whole mess to be over - it certainly can't make me feel any worse.

@vipersnest1 hope today goes well, please do update us how you get on.

Do you mind me asking what type of surgery you had before?

Full sympathies OP from someone who's life is also ruined due to very similar issues x

I am thinking of you today vipersnest1 and hoping it is going as well as possible.
I am so sorry you can't confide in your sister. I am a long retired midwife and I would be very sad to think that a family member felt unable to talk to me about something like this.
I understand completely how isolating this kind of problem is and how it takes over your whole life.
I really hope that today's consult is helpful.

@FawnFrenchieMum, I had a hysterectomy and cystocele repair first, and then a rectocele repair and pelvic floor repair six months later. I also have a urethrocele which was deemed unfixable - luckily that doesn't really cause me any issues.
So, yes, I'm alive and in one piece...
It was kind of good and not so good. I spent an hour with a physiologist who took me through everything again - diet, fluid intake etc.
I broke down in tears at points and she said she wouldn't examine me or do the biofeedback with me as I was too distressed - the examination etc is all due to the pelvic floor side of things.
I was very honest and did tell her exactly how I feel, including how it adds to my depression and anxiety. She was understanding and sympathetic, but also more in the school of I need to get over it kind of thing. She told me that everyone should feel comfortable discussing their bowels with their nearest and dearest, and that the measures I take to overcome the problems my rectocele causes are very common. I was also told that I need to try to accept that this is how I am now.
She told me she will refer me back to the consultant, but that surgery would likely not be recommended because of the probable scar tissue.
About the only thing that was a positive was that she admired me for still working full time (I was diagnosed with Fibromyalgia eighteen months ago and was off work for months.)
I've been all over the show since, and was very glad to get home.
I'm shattered despite having had a nap and feel very down about it all if I'm honest. It was all a bit of a waste of time.

Oh gosh that sounds incredibly though. Will you be having on going treatment with her?

I just wanted to add my sympathies. I had hysterectomy, cystocele and rectocele repairs in 2016 and my prolapses have begun to recur again.

@FawnFrenchieMum, no. The only thing I've been given to do is pelvic floor exercises, but even those aren't really necessary or helpful.
@Londontrees, have you asked for any help yet, and if so, what have you been told?
I'm now not just upset but also angry - and wondering just how bad things have to be before I get any practical help.
I think I'm going to contact my GP about how this is impacting my mental health, because it is.
As I said to the physiologist, I feel abnormal and would never want a man anywhere near there (i.e. sex - I'm single and would love a relationship), because it would be so obvious. She just said 'you will know if you're 'empty' or not' - actually, no, I don't.

@vipersnest1 I haven't been back to the GP yet as I am putting off the idea of going back through the rounds of tests and don't want surgery unless essential.

@vipersnest1 that is awful! Is there anyway you can afford private sessions?
Ive just been referred to a physio for pelvic floor work and tbh I’ve put it off for a long time as I saw an NHS physio for a while years ago and made no difference. Now I haven’t started anything yet so can’t say if this will, but has my first appointment Tuesday and it was a completely different experience. She listened properly to what I was saying, was interested in how things made me feel not just medical symptoms and kept saying, her role is to improve my quality of life, it doesn’t matter what tests and examinations etc show. It’s how my symptoms affect me that’s the issue. She also mentioned counselling and said it’s totally normal to have strong feeling about what’s happening to our bodies etc.

@FawnFrenchieMum, she didn't give me those to do - the women's physiotherapist did, who I saw in November. The physiologist just said she would refer me back to the consultant.
TBH, pelvic floor exercises make no difference - the rectocele is very thin tissue and there is no muscle there, so nothing to strengthen.

Just coming back to have a grumble really - I feel totally thrown on the scrap heap. I shouldn't draw comparisons (especially given the circumstances because she has complex health issues), but DD1 recently had investigations for pelvic pain and had comprehensive bloods and scans done - for her reassurance and presumably because she's a young woman of childbearing age.
For me, I just feel written off - go home and be grateful for what you have. Meanwhile, I don't want what I have. I want to feel normal and this isn't it.

This is shocking treatment you’ve been receiving op and I’m so sorry. Would Kate Middleton be told there’s nothing to be done? No. There must be something!

I've PM'd you

@vipersnest1 hi. I’d love to hear more about your experience a few years on. I am going through something similar.

@Botanicalsatthesea I finally got a repair op in August last year. Because I’d already had a vaginal repair I had it done by a colorectal surgeon transanally. (The gynaecologist also declared I had no prolapse (!) and referred me.)
Apparently a ‘significant amount of tissue’ was removed - no surprises there.
Things are a lot better now, but I did have a few more issues before my op, so I had a pessary fitted privately to reduce them.
The op itself was very straightforward and recovery was far better than the vaginal repairs I’d had previously.

Wow - I’ve just looked back and realised I ended up waiting 42 months!!!