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Sacrohysteropexy advice needed please

(12 Posts)
ladysingstheblues Wed 29-Aug-12 21:08:39

I was diagnosed with a "slight" rectocele in January and then in June was told I had stage 1 enterocele and rectocele but it didn't need surgical repair.
Tried having a ring pessary fitted but it was so uncomfortable I told the gynae to take it out again.
Tried pelvic floor exercises for past 3 months but everything seems to be getting worse not better.
Have today been told by a different gynae who I was referred to for a 2nd opinion that I should consider sacrohysteropexy but he listed a number of negatives - procedure not fully tried & tested, it might not help and my symptoms could even get worse etc. - so I'm just wondering if anyone has had this done and can give any advice.
I'm feeling very depressed - I'm now feeling the "bulge" more or less all the time, having dreadful problems with BMs, and sex is too painful to contemplate (sorry if this is TMI - am new here).
I don't know what to do - the thought of putting up with this for the rest of my life is horrible (I'm 48) but the surgery sounds really scary. Would be v. grateful for any info.

Lirogiro Wed 29-Aug-12 21:16:54

I have no personal experience but i worked at NICE when they appraised the procedure. There is a patient information leaflet on their website here:
Hope it's useful and that things work out for you.

ladysingstheblues Wed 29-Aug-12 21:26:38

Thank you for this - I think it's the same info the gynae gave me this afternoon. The bit that's worrying me most is when it says "There is not much good evidence about how well this procedure works or how safe it is."

WorldFamous Wed 29-Aug-12 21:45:43

I had this done a few years ago. I had a prolapsed uterus which, at its worse, meant my cervix was outside my body - grim! I also had a prolapsed bladder and was developing a rectocele too. Like you, I tried a ring pessary but it didn't work in hoicking things up. Pelvic floor exercises just didn't work; for me, it wasn't a problem with my muscles, which a physio has told me are pretty strong, it's because I have crap tissue which stretches and doesn't rebound.

I had keyhole 'robotic' surgery so recovery wasn't painful at all, I was up the next day and went home. Sadly, the re-suspension didn't work for me and I had to have a hysterectomy 3 months later to resolve the issues. The mesh suspension did then help in pulling my bladder and rectum back into place, without the weight of my womb pulling things down. Basically it re-suspended my pelvic floor. My symptoms weren't worse after the first procedure, it just didn't help much in any significant way.

It's a procedure that seems ideal in theory and so I was hugely disappointed when that it didn't work. That said, the two surgeries together have sorted me out. I kept my ovaries so didn't go into menopause but tbh, I hadn't really finished with having babies (late 30s) and I felt very sad to lose my womb. However, now, my quality of life is so much better. I can completely relate to what you're saying about the 'bulge' and sex being a no-go area, it was exactly the same for me. I was also having continence problems; the bladder incontinence was just about manageable but it was the bowel problems really affected how I lived my life. It really was a grim period of my life!

Is this surgery the only option you've discussed or have you considered it alongside a hysterectomy?

I have huge sympathy for you, it's an awful condition to have to live with, particularly when your bowel becomes involved. I felt desperate at times. My bladder and rectum are prolapsing now again so god knows what I'll have to have done next time, I'll probably have metres of mesh inside me by the time I pop my clogs.

Good luck! ((unmumsnetty hug))

Lirogiro Wed 29-Aug-12 21:51:49

I think it means that there isn't much well regarded evidence to say that it is safe or effective, rather than there is evidence that says that it isn't, iyswim. But i can see that if you are going to have a procedure you want cast iron evidence that it will be beneficial. There is more in depth info about what evidence was considered and how the commitee reached its decision in some of the other related guidance documents, but they are all a bit sciency.
The specialist who helped the committee make their decision was a mr mark slack and he seems to have some good patient info resouces on his website

I've just googled him and this came up so i can't vouch for this info but i thought it might give you some other resources.

MissBoPeep Wed 29-Aug-12 22:31:48

OP if you go to the General Health forum here there is a very long thread on "Any old prolapse"- certain there will be Mns there who can help.

ladysingstheblues Wed 29-Aug-12 22:54:44

MissBoPeep - thanks - I meant to put this on General but miss-clicked (like I said - I'm new here) blush
Lirogiro - thank you again - will def read this but prob tomorrow so I'm awake enough to understand it.
WorldFamous - thank you for sharing your experience - really feel for you. I asked about hysterectomy but my gynae said it wasn't necessary as I'm already menopausal (quite early, I know - which is part of the problem - also I can't take HRT as it interacts with other meds I'm already on).
I could probably cope with the bowel problems but last few times we've tried to have sex it hurt so much I had to say 'stop' - v. distressing for both of us - and the gynae said any smaller repair job done via a vaj incision would probably make that much worse.
I also have a history of endometriosis and have had both laparoscopy and laparotomy - def prefer the former from a recovery pov!
Still don't know what to do but thanks everyone for the chance to talk about this.

bubbles1231 Fri 07-Sep-12 01:17:39

Several things to consider
1. do thorough research of surgery and ALL risks , then weigh up against your quality of life now. there are some serious issues with mesh (google it). Hysterectomy can result in vault prolapse at a later date and you really don't want that.
2. the surgery is unlikely to be permanent. Surgeons tend to follow up cases for 6months max and call that a success.I got 6 years out of mine (without mesh)
3. Ask for a referral to gynae physio- really important before considering surgery.
4. Can really recommend the Hab-it DVD
5. Consider a Kegel8 machine But you may want to do 3. first
6. If you're post menopause then Oestrogen cream is recommended as it helps keep the tone without the side effects of HRT pill, and it could really help with the painful sex.

MissBoPeep Fri 07-Sep-12 06:44:24

I had a classic repair 20 years ago after DD2 left me with a grade 1 cystocele, slight rectocele, and slight uterine prolapse.

I was told by the gynae that who does the op can make a big difference- I went privately and he did it and his words were "I hope this lasts you".

I think the procedure I had is now a little outdated.

I felt a bit "saggy" again after starting running a little a few years back and saw another dr who told me to stop running, or doing any high impact exercise, and that further surgery would be hard due to the tissue that had already been removed.

I try to do my PF exercises when I remember, never lift anything heavy etc, and am on HRT including vaginal as and when needed, which I think helps.

I had a friend who had much worse problems than I did and she had the same op- it didn't really work- then she had a Burch suspension (??) which was better, but eventually she had a hysterectomy due to fibroids and other probs.

I think you need to choose your surgeon very carefully if you have an op- look for a uro-gynae who does lots of these ops, and who has a good track record. I think surgery can be successful as long as they know what they are doing .

YvesSaintLaurent Wed 12-Sep-12 02:21:42

I had a sacrohysteropexy procedure 7 years ago for a prolapsed womb. When I first went to my GP she put a ring pessary in but I got fed up of having to go back every six months to have it changed, I had a constant discharge and sex was impossible. I asked to be referred to see a gynaecologist and was sent to Mr Jonathan Broome at Royal Bolton Hospital. He recommended surgery and I had the procedure done by keyhole. I was only in hospital overnight and I was back playing golf after 3 weeks! Mr Broome advised me to continue with pelvic floor exercises and I use an oestrogen pessary once a week and I've had no problems. A couple of my friends have had similar issues and have also seen Mr Broome (at my suggestion) and they've undergone the same procedure. I can't thank him enough, I was really fortunate because I think I would have ended up with a hysterectomy if I'd seen anyone else, my GP hadn't heard of the procedure at the time and it was pure luck that I was referred to the right surgeon.

zoemason Sun 26-Jul-15 23:30:01

I had it done 3 weeks ago. Already feels loads better although recovery is slow. Everything feels much more up inside and that 'sitting on a grapefruit' feeling is gone.

Monty123 Mon 03-Aug-15 09:38:47

I've just had this done, and now into my 3rd week of recovery and feel so much more comfortable.

It started with a bowl prolapse and had that repaired on the NHS by Alex Slack, after 6 months I thought that had failed and went straight back to him and he told me everything was fine, but it was in fact a uterus prolapse. I then went back to my GP and asked for a 2nd opinion, privately and saw Mrs Bashire who said it was bladder and I should be fine, just physio - my physio was rubbish to say the least, and as a result have told my insurance company so, and the to consultants who recommended her.

I carried on for a year, getting steadily more uncomfortable with this squash ball i could feel. so I decided to go back to Alex Slack privately, and he put me in a scary chair and called in 2 nurses so that I could be in no doubt that it was my womb coming through.

we discussed procedures and he said because of my age - 32, a Sacrohysterplexy was the best option as I was/am not ready for a hysterectomy, the only downside he said is that future babies will have to be c-section as its too new an op to know how it will cope under the stresses of labour.

I'm now 3 weeks post op and today is my first day on my own with the kids, 2.5 and 3.5 and I feel so happy, its more comfortable, yes i'm tired, but thats my body recovering and if we have a few tv days it really doesn't matter.

compared to the first operation I had, i've recovered from this so much faster and feel ready to take on the world- oh and move house!!

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