MNHQ here: proposed new NICE guidance on treating urinary incontinence and POP in women - looking for your views

[RowanMumsnet]

Hello

The National Institute for Health and Clinical Excellence (NICE) has published new draft guidelines on treating urinary incontinence and pelvic organ prolapse (POP) in women, as well as complications associated with vaginal mesh surgery - and they're looking for your views.

MNHQ is a registered stakeholder in this guideline so if you'd like to share your thoughts on the proposed guidance on this thread, we'll collate the themes and use your comments to compose our organisational response. You can also submit responses as an individual, but NICE encourages people to do it via registered stakeholders wherever possible

You can see more about the proposed guidance here and you can read the draft guideline itself here, but here's our short summing up of the recommendations:

*That there should be a 'national registry of surgery involving mesh insertion to treat urinary incontinence or pelvic organ prolapse in women', and this registry will report annually on the outcomes of these surgeries, including adverse reactions;
*An annual review for women who are using absorbent products as a way of dealing with urinary incontinence, to assess their continence, talk about symptoms and risk factors, discuss alternative treatment strategies and talk about long-term management plans;
*Offer an annual review to every woman using long-term medication to treat urinary incontinence or over-active bladder;
*The use of botulinum toxin to treat some types of OAB;
*A recommendation that women are given more information about the possible risks of sling/mesh surgery, and are told that there is uncertainty about how many women are affected by long-term complications;
*Advise women considering a retropubic mid-urethral mesh sling that these implants are permanent and may not be easily removed;
*Give these women written information on the implant including name, manufacturer, date of insertion, and implanting surgeon’s name and contact details;
*Referral of women with a suspected mesh-related complication to a
urogynaecologist, urologist or colorectal surgeon for specialist assessment;
*Guidelines on assessing women presenting with pelvic organ prolapse;
*Recommendation to consider a 16-week programme of pelvic muscle training and vaginal pessaries for women with symptomatic POP.

Those of you who have some personal or professional expertise/experience in incontinence, POP or mesh surgery might want to read the draft guideline in full; there are detailed recommendations in there regarding how to treat various kinds of prolapse and different kinds of incontinence and which medicines should be prescribed; a detailed protocol for treating women who have complications associated with mesh surgery; and comments on how healthcare teams should be organised. There are also some recommendations for further research.

If you think we've missed anything major from this summary (which is quite possible as we're not experts in this at all) then do please let us know.

Thanks
MNHQ

So sorry to hear about your mum SinkGirl And you're right, men would not be expected to put up with this.

Thank you. She was an incredibly brave woman who had to put up with a lot. The mesh destroyed the last 15 years of her life even before the cancer. The ovarian cancer was secondary to stomach cancer but they didn’t realise that as secondary ovarian cancer is so rare - can’t help wondering if it was related to the mesh but no one seems interested in looking into these things.

I haven't got much to add to the document - I have Botox treatment for Urinary Incontinence cause by urgency and over active bladder. I've had a number of cycles. At my last consultation I had to go through a lot of hoops to get put onto the list and it took over 9 months to get back in the list - the reason ? It's super expensive and is being actively phased out because
Of the cost in many places. I can self refer once it starts to wear off but obviously it's something that needs
Repeating. I've not met any other person who has had it done and I think it isn't widely 'marketed' however I have found it supremely effective with few significant side effects. And there I no longer have to carry spare clothes around with me at work and the car which is a plus!

Hernia repairs with mesh will be the next scandal - I think it probably affects many more men than women.

www.bbc.co.uk/news/health-45604199

I have an inguinal hernia mesh repair too. I'd say I have no problems with it, but I do sometimes get pain very close to where the scar is. Dr says it's unrelated though... (now I'm wary of whether that is the truth!)

My dad has a mesh repair for inguinal hernia and loves it - when we were talking about hernia vs prolapse repair we reckoned maybe it’s different using mesh to replace fascia/muscle wall inside the abdominal cavity and using mesh near/in mucous membrane-ish vaginal walls, but neither of us are medics so just guessing really.

I could write the book on this. An important factor in urinary incontinence is type. Stress or urge. I had stress incontinence and endured a year of physio. At the end the physio said my pelvic floor was 1 mark away from perfect and only surgery could help. I had bulking agents which didn't work then a colposuspension operation a good 5 years later. Totally cured using the original gold standard solution.

One element which I can't see mentioned so far is the link between OAB, bladder irritation and menopause. It seems that when oestrogen levels fall this can result in bladder irritation, but this is rarely mentioned, perhaps not even know by GPs?

The solution for me was not about treating the OAB, but treating the underlying symptoms i.e. the menopausal ones. HRT stopped my OAB within a couple of days!

Not sure if this has been covered as haven't had time to RTFT (I know, I know).
an important point: what timescale reports use when classing surgery as a "success".
A lot of research classes 6 months or a relatively short timeframe as successful. After such major surgery, more thought needs to go into reporting success/failure rates of any POP/urinary surgery and more follow up reporting e.g annual checks and reporting if surgery is still successful one year on.
I highly doubt women who have had surgery and are back to square one in 8 months (or in worse condition than prior to surgery) would feel their operation was a success!!

I have some thoughts. I’m a physio but this isn’t my speciality. I saw an NHS woman’s health physio who was nice but pretty useless. It’s not listed in the areas for further research but with all the emphasis on avoiding surgery I think there needs to be more research into non- surgical outcomes, not just pessaries. I think that treating the pelvic floor in isolation, especially in post natal woman is unlikely to be comprehensive enough, and those muscle all work closely with lower abdominal and core muscles. So I’d like to see research into pelvic floor exercises alone compared to pelvic floor and general stomach, thigh & pelvis exercises. Then I’d like to see how kegals alone compare to kegals with a feedback device.

Looking through the guidelines I can’t seem to access the specific research quotes so these points might be covered in the research.

1.6.1. Examination should also take place standing up as a prolapse is gravity dependant.

1.6.6. Or different time of the month as the position of the cervix is affected by the menstrual cycle, which may exacerbate proplapse symptoms.

1.7.2 Aviod heavy lifting. WTF does that actually mean? Useless when told to a post natal lady who is going to be carrying an increasingly heavy baby over the next year. It also scares people into not using a sling and if it’s a good supportive sling with weight evenly distributed over shoulders and hips it may be easier than carrying in arms of lifting pushchairs up and down steps and in and out of the car. BUT the woman needs to be taught how to evaluate the effects of different activities on her proplapse.

1.7.5 ‘Supervised’ is not good enough. A rubbish piece of paper with the old fashioned inctructions of kegals. Woman need to consider using an app (NHS squeezy is good) or a video/you tube/NHS alternative that talks a woman through pelvic floor exercises (which should be performed in a range of functional positions, not just lying down), or even better a device with feedback like Kegal8.

1.7.14. This really needs to spell out what the uncertainty is around. It reads like the surgery might not be successful in manageing symptoms of proplapse. It needs to say something like ‘long term effects are uncertain and may include severe pain, bowel, bladder and sexual dysfunction.’

And I agree with pp about sexual function being about pleasure, not just ability to have sexual intercourse.

josie both my nhs physio and urogynaecologist recommended Pilates, which I was doing anyway from 8 weeks post partum and I do think it helps (I notice worsening symptoms if I get lazy and stop doing it). I’m aware I’m a sample of one, but it does back up your thoughts about working pelvic floor muscles in the context of the whole core as well as in isolation.

Verbena87 I totally agree. I feel like Pilates (although personally I happen to have found a wonderful yoga teacher) has done more good for my pelvic floor than countless isolated kegals but unlike you that wasn’t the official advice. There’s nothing in the guidelines about Pilates/yoga/core stability and that might be because there’s not been much research into it- there should be!

Personally I’m finding that my prolapse isn’t a specific problem that was be fixed, but more of a learning to live with a long term condition that has improved dramatically since it occurred but worsens from time to time (less exercise, put on weight, constipation), and needs regular management.

I agree Josie.

Firstly I was told I didn’t have a prolapse but I was only examined lying down. I then was advised no longer to lift weights. No running. Life felt miserable and endless kegels made no difference. So effing dull and pointless.

Then I decided that I would live and exercise normally and started kettlebells, yoga with a focus on strength and restarted running. I also tried to use MuTu to fix the gap in my stomach muscles. It wasn’t immediate but in the end everything improved hugely. My prolapse is now minor although I still wet myself when running if my bladder is full. But so much better.

If I had followed official advice I would be unfit and depressed and kissing myself. We just need more research here into what works.

Callingyou - yes that’s so similar to my experience. Although now I’ve read your post I’m wondering if I’m limiting myself too much. I got the DVD called Hab-it and the women who made it went back to doing triathlons which was really inspiring but I feel like I’ve got stuck at a stage where I can do gentle non-impact exercise but i’m So scared of it getting worse again that my fear is stopping me too much. I remember the physio saying ‘I don’t understand why everyone is so bothered about running- do a different exercise’ but I really miss running (it’s free!)

There was a fairly woo website I found which talked a lot about posture but what I did take away from it was that there can be significant improvement with prolapses without surgery and the outcome of managing it yourself can be better than surgery.

I’m quite aware here that my experience was not interfering with my bowels and only stress incintinence so I do realise there are many cases where proplapse should be treated surgically, but I do wonder if our non-surgical treatment was better researched and delivered if more women could avoid surgery.

Thanks for covering this MNHQ.

I’d like to see a few extras.

1. A basic overarching data recording of post birth injuries and complications in women, followed for life. This is missing right now. At the moment, we have ‘successful’ defined basically as a live baby. What we need to do is move from that to ‘mum and baby in as good a condition as possible with as few short and long term issues as possible, and short/mid/lifetime treatment of any issues that did arise.’

I would create data monitoring for each birth - starting in pregnancy and continuing through birth to end of life. A lot of POP and similar issues are ones which arise around or after menopause but their primary cause is pregnancy and birth. Lifetime data recording also would help stop the ‘kicking the can’ from obs and gynae to general surgery. It would also allow us to to generate true lifetime risks and cost/benefit analysis of different birth modes (natural, VBAC, c section.) right now we often see the stat trotted out of how much cheaper a natural birth is. It is - IF it goes well. If it doesn’t, the costs are often higher by far that an elective c section.

1. On the background of this data monitoring, I’d like to see far more awareness, and money for pelvic rehab for ALL women after ALL births. France for example does this - compare their long term prolapse rate with that of the UK. Post birth physio would head off a significant proportion of these later surgical repairs. Again, without lifetime follow up and costing, the NHS can argue it’s too expensive when in fact it would save money (and more importantly improve lives) long term.

1. Why are the UK still using forceps? Many countries ban them. The hospital where I had my first in Sweden does not use forceps and has a lower birth injury and birth complication rate and a lower c section rate than the UK average. What are other countries doing to reduce injury rates?

1. A move away from metrics like c section rate as a marker of success. A c in itself is not negative if it avoids damaging the mothers mental or physical health.

1. Much better investment in midwife led care, with the aim being midwife led births backed up by instant access to medical facilities if needed as happens in most Scandinavian countries

1. The mesh scandal was allowed to happen on a background of, to be blunt, no one giving a toss about women’s health. This needs to change. Hospitals need to be measured on metrics like how many low risk patients end up with interventions and injuries, not primarily on cost, section rate etc. There needs to be a fundamental change in culture to care for women from conception through pregnancy and birth and to end of life if there are complications. There needs to be better education about pelvic rehab and better funding.

Agree totally with the posters above talking about the metric for a successful mesh repair being ‘can a man fuck it.’ Sorry to be blunt, but that’s got to change. Holistic care and respect for women’s bodies and minds has to be the foundation in which all this is built.

No one should be referred to any knife wielding medic before being referred to a specialist physiotherapist/physical therapist in pelivic/obstetric/gynaecology- which addresses incontice in 80% of cases. Massive fail on MN if this isn’t mentioned because medics don’t understand and therefore don’t refer.

Following because I need to know the results.
My son’s GP referred us to a orthopedic doc and a pediatric urologist after I asked him a few questions and threatened to involve PALS immediately. Financially I don’t understand why they are reluctant to refer people to the appropriate specialist for treatment and good quality advice.
I’ve lost count of the number of times I’ve sat down at the kitchen table to fill out paperwork for my son and daughter. It feels like a tick box exercise. The schools face the same issue.
I’ve actually been asked to discuss the funding problem at the school tomorrow morning in a meeting. I believe that this is a question of allocation of resources and funding. It’s worth petitioning and campaigning.
Who do I contact?

josie I run. My gynae agrees that the prolapse risk is outweighed by the physical and mental-health benefits and fitted me with a ring pessary which I only use for running. I’ve also got a pair of evb support shorts, so run with internal (pessary) and external (support shorts) support. Ideally I’d like to have a pelvic floor that means I don’t need either, but I can’t see it’s that much different to using a sports bra for support because the ligaments holding my boobs up are similarly fucked, and whilst toning nearby muscles will help w bit, without a bra there’s always going to be some lolloping about with impact. I’m continent but if I run without pessary/shorts I get uncomfy bouncing-innards feeling when running and heavy/draggy sensation after. With them, I can run symptom free and so far, my prolapse is no worse for running 3 times a week and seems to generally still be improving (Pilates, kegels, electrical stimulation, estrogen pessaries twice a week).

I live in France and after giving birth every woman is entitled to six weeks of pelvic floor reeducation (physio). It seems daft that British women are putting up with not having access to this type of physio when it is offered as standard in so many countries. I know it's not strictly what the consultation is asking about but I think it's worth mentioning in feedback.

Josie - was that the whole woman website? I found it too and it gave me the confidence to just go for it. When I started running I had to use sanitary towels. I did the MuTu method. Kettles. I don’t like Pilates for a number of reasons not least it’s in contraction to the Whole Woman idea. I decided to use my body again and it healed itself. It was an up and down journey. Go for it!

I’d like to add that consideration should be given to women like me who have prolapse and continence issues despite never having been pregnant. It’s an issue of female anatomy - the pelvic void - as much as pregnancy and child birth. I’m fit, healthy, slim etc. but started to get issues in my 40s.

I agree with others who say;

• educate GPs
• educate women on how to build a strong pelvic floor
• Strictly review existing & new mesh cases
• Enforce a register of only those surgeons capable of carrying out this type of surgery properly (so no generalists)

I’m sure I’ll think of more.

Some awful experiences on here. Mine is fairly ordinary I think. From being a teenager I've suffered from stress incontinance (30 years approx). Finally, post birth, I was referred to a women's physio who deals with this, and she was amazing. The most surprising thing was that I had been doing pelvic floor exercises, but not correctly, so it wasn't helping. She said that if you google the exercises, they're all wrong as things have moved on so much. I ended up with an improvement but not enough, so had a TVT operation? Unsure exactly what it is, but for the first time in 30 years I can run/cough/lift something without leaking.

I agree with many of the comments already made here, but I also wanted to speak up in defence of mesh. I have recently had surgery to repair a prolapsed uterus by hoiking it up with mesh (hysteropexy). If mesh was banned the only alternative for me would be hysterectomy, and I would then risk having a vaginal vault prolapse. The surgery has been life changing. Among other things, I have regained feeling in the whole vulva area. I know there are risks but I weighed them up and decided that in my particular circs it was worth it. I agree with all the proposals about properly registering implants, ensuring women are informed etc. But let's not take this option away.

The other thing I wanted to raise was the unrealistic lifestyle advice I was given - no lifting and no exercise apart from swimming. My nearest pool is an hour's round trip away, and what am I meant to do with my kids? Telling a woman in her 30s basically not to exercise for the rest of her life is ridiculous and is only going to lead to more health problems. There is also a big psychological impact when you feel like you can't look after your kids properly due to not being allowed to lift, run etc and I think that needs to be recognised.

I feel loads of compassion for any women who are reporting problems

However, my tvt dramatically improved my quality of life and no one is asking me about my experience (except here), I had terrible incontinence unresponsive to physio and I think the impact of that on a busy mum can be underestimated.

they should try to follow everyone up at least once after 5y not just those with problems if they want a true picture of the outcomes. I hate to think someone in my position would find it harder to access surgery if needed

Here in France, all women are sent for pelvic floor physio sessions ("rééducation du périnée") after birth. You get a prescription for the head of the probe, which you buy from the pharmacy and the physio connects to the machine to use for you.

As a result, UI is just not a topic of conversation between women here. We run, jump on trampolines with the kids etc.

I was sent to pelvic floor physio even after the elCS. Dr said "pregnancy affects pelvic floor, too". That time around, technology had advanced and exercises were like a video game - squeeze and a little plane moves over a hill

This is what you should be campaigning for - physio for all new mothers. If France can afford it, UK can, too.