Webchat with Sherrie Palm of Pelvic organ prolapse support organisation: Tuesday 23 January, 9-10pm

[RachelMumsnet]

We were asked last year on this thread whether we could look at organising a webchat with Sherrie Palm, founder of Pelvic Organ Prolapse Support Organisation (APOPS). We contacted Sherrie and she agreed to join us at 9pm UK time on Tuesday 23 January to answer your questions.

Join us between 9 and 10pm on Tuesday to put questions to Sherrie and talk to others about POP. If you're unable to join us at that time, post questions for Sherrie in advance on this thread and she'll aim to get through as many questions as possible during the hour.

Sherrie Palm is the Founder/CEO of Association for Pelvic Organ Prolapse Support (APOPS) and author of award winning book Pelvic Organ Prolapse:The Silent Epidemic. Sherrie's journey began in December 2007, with her diagnosis of pelvic organ prolapse. Upon returning home and researching POP, she discovered how common the condition is, and that stigma continued to shroud the condition in silence. In an effort to increase awareness of pelvic organ prolapse, Sherrie wrote the first edition of Pelvic Organ Prolapse:The Silent Epidemic,which was published in in April 2009.

Association for Pelvic Organ Prolapse Support(APOPS) is a USA based nonprofit advocacy agency with global arms, founded in September 2010 to generate awareness of pelvic organ prolapse (POP), to provide support and guidance to women navigating the physical, emotional, social, sexual, fitness, and employment impact of POP, and to bridge patients, healthcare, industry, research, and academia for the betterment of POP understanding and treatment evolution.

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Hi... My situation is slightly unusual, and may be triggering for some people.

I have a prolapsed womb, after three births, other pregnancies and also because of Elhers Danlos Syndrome. I was advised against surgery because of my condition but my consultant asked me how willing I was to think outside the box and try some more unorthodox methods.

To strengthen my pelvic floor, it was suggested that I should use a rabbit style vibrator as exercise. I initially thought this was the most ridiculous suggestion ever, but it has actually really helped with my pelvic floor. They gave me methods for how to use it and said that it could be more effective than the more usual tools because of how you grip in relation to your body shape and I'd struggled to identify the right muscles with previous methods. And at least it makes it more fun.

I now have incredibly strong pelvic floor muscles, but the prolapse was still happening. The next suggestion was that having a coil fitted may help things sit in the right position, but while it's not causing any problems, everything is still prolapsing.

I know I'm lucky not to have any bladder or bowel involvement, but short of surgery that they want to avoid, what else can I try? I know the laxity is largely due to my EDS.

Thanks for discussing this important topic. Watching with interest.

My question: can surgery actually be avoided through doing pelvic floor exercises?

It’s been a year since my sacropolplexy and partial hysterectomy (uterus and tubes taken). Overall, there has been much improvement, but every 4 weeks for about 5 days, my cervix makes an appearance again. Any idea why? Is this common?

Hi Sherri,

I am having surgery next week, rectocele repair, suburb urethral sling plus cystoscopy and hydrodilation,
I am relieved to be getting treatment but worried sick about the op, particularly the recovery period and also whether it will be successful.
One type of mesh, made by Johnson&Johnson has also just been banned from use in Australia, where I live, so I'm seeing my gnaecologist tomorrow to see what my options are , just wondering what you would recommend?
I'm also concerned about the prolapses returning and wondered if there is anything other than pelvic floor exercises that I should be doing after my surgery,
Thank you.

I suffer from a vaginal wall prolapse.

Improved but come.m back with a vengeance.

What’s your advice re exercise and prolapse? Namely running. Should it be limited or even avoided?

Oh actually I can think of one - is prolapse minimised by doctors in the US, as it is in the UK?

Not my experience in the UK at all.
Make GP took very seriously.
A few days later I was in front of a male gynaecologist, who also took very seriously.

I have learned so much about prolapse from the threads on MN and the APOPS FB page.

It concerns me that there is often very little knowledge of exercise habits which can make a big difference to pelvic floor health. I mention my prolapses to any exercise instructors that I work with, some totally get it and know what I should avoid, some clearly have only a vague idea, even if they are highly qualified in their fields. Does APOPS aim to reach out to sport and exercise training bodies?

Like the question above from ilovechocolatetoomuch - after one birth and suffering from a rectocele what are your thoughts on natural birth again, or c section?

I can tell you right now I would never go through vaginal birth again, recovery has been horrific, but so worried the NHS will minimise and will have to fund a private c section.

I have had posterior Colporrhaphy which has improved my perineum and stopped the tampons falling out but has not helped with the problems with the rectum - mainly difficulty with clearing all of the contents, even when using stool softeners. I was told it did not always help when I had my op

Is there anything else for me, or will I be condemned to digitating for the rest of my life?

I love the above question about safe exercise. I have mentioned it to many yoga teachers and their knowledge can be variable so it helps to be informed. It would be really helpful if there was a general advice sheet for high impact, low impact, strength (weights) training and yoga/pilates so that everyone can be on the same page regarding what's safe & what to avoid.

I already had TVT (which involves a small mesh repair) and was due to have mesh repair of rectocele last year. But I chickened out at the last moment based on a gut instinct and fear of the mesh controversy. I recently saw a different consultant and it seems that whilst I don't have EDS I do have some hypermobile signs and was advised that in that scenario mesh surgery could lead to severe complications. Whilst I initially felt very confident in my original surgeon I'm unsure how well understood hypermobility is and the effect it has on connective tissue?

Does APOPS have any specific advice for hypermobile patients irrespective of severity?

Hello Sherrie,

Would you advise a 39 year old, one month from childbirth for the second time, to go for a natural birth despite her cystocele and stress incontinence? I know my prolapse is "just" mild/moderate, but I would like to have other children in the near future. My first labour was normal, no forceps or vacuum, just gas and air and pethidine. Does any of these favour prolapse in any way? I eventually gave birth crouching down. I had 2 degree tears but no other immediate consequence- I just felt something dropping three weeks after.
I am not scared of having a c-section, just wondering if you think it's the way to go. I have to admit choosing is proving very stressful.

Thank you very much!
Arianna

Hi Sherrie and thank you for doing tjos live chat.

My question is, is it possible to get well again and live a normal life with or without surgery? Thank You

I'm going for my operation today posterior and anterior plus sacrospinous fixation

I am 6 months post-partum after a complicated second-degree tear (had to have it repaired again at 2 months post-partum). I now have a mild rectocele and, rather horrifyingly, seem to be unable to hold in a tampon. Obviously my pelvic floor is not in a good state!

I have been told by the GP to do pelvic floor exercises religiously for 3 months and come back for a physiotherapy referral. But I can’t really tell if I’m doing the exercises properly, and am very reluctant to see the physio, who is a young man. Is there anything more I can do by myself at home? I was wondering about the expensive electronic/pulse exercisers like Innovo etc. Would they help?

Hi ladies! I'm so glad to join you today for our webchat, and share some insights about pelvic organ prolapse.

A big welcome to Sherrie Palm who's joining us today from USA to answer as many of your questions as possible throughout the next hour.

Sherrie has had trouble logging on with the user name we sent over so for now is posting as sjpPOP. We'll see if we can highlight her posts so you can see her answers more clearly.

Rachel, please advise where to insert the passcode to get in to post responses to individual questions.
:)

@sjpPOP

Rachel, please advise where to insert the passcode to get in to post responses to individual questions. :)

Emailing you now!

Let me paste some preliminary responses in here by name ladies to get the info rolling while I figure out navigation.

Shakey15000 Fri 19-Jan-18 19:48:18
Welcome Sherrie!

And thanks for supporting/advocating such an important, silent topic!

My question is- what are the main symptoms we should look for and what should we be asking our GP's/Doctors? I know you're in the U.S but global issue right??

Hi Shakey,
The most pronounced symptoms of pelvic organ prolapse (POP) in no particular order are: tissues bulging from the vagina (might feel like you are sitting on a ball), urinary incontinence, urine retention (gotta go, can’t pee, more common in advanced stages of POP), chronic constipation, fecal incontinence, pain with intercourse, lack of sexual sensation, rectal, vaginal, back, or pelvic pain (or any combo of them), rectal or vaginal pressure, and your tampons will push out.

BowTiesAreCool1 Fri 19-Jan-18 19:53:29
Thank you for taking time to do This, my question is what treatments are available for prolapse? Thankyou

Hi BowTies,
There are multiple treatments for POP, both surgical and nonsurgical. Step 1 is having a physio assess you and show you how to properly do pelvic floor and core exercises to strengthen the muscles which support the organs. Being fitted for a pessary is also beneficial, it is an internal support device which you can either insert and remove daily, or have a physician insert and then return to every few months to have them remove, clean, and reinsert. There are multiple different kinds and sizes of pessaries; the type of POP you have and grade of severity will make the difference in which type is most appropriate for you. There is always benefit in trying a pessary prior to jumping to the surgical page. There are multiple additional types of nonsurgical treatment as well, biofeedback, pelvic floor strengthening devices, hormone replacement therapy, electrical stimulus, myofascial release therapy, support garments, and vaginal tissue rejuvenation therapy to name a few.

There are multiple types of surgeries, vaginal, abdominal, and robotic are 3 categories (some include laparoscopic as well) and within each category there are multiple types of procedures, because there are 5 types of POP (cystocele-bladder, rectocele-rectum, enterocele-intestines, uterine-uterus, and vaginal vault when vaginal walls cave in after a hysterectomy) as well as 4 grades of severity, and women can have any combination of types of POP.

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Sofabitch Fri 19-Jan-18 19:54:14
I'm pretty sure I have this. But I'm worried the Gp will just send me away for being overweight. Will loosing weight help with the prolapse?

Hi Sofa,
Nearly every health condition improves if we are at an appropriate weight. In the case of POP, extra fatty tissue can push organs out of their natural place on top of what POP is doing. In general losing weight may reduce your symptoms a bit, but won’t make a radical difference in them or the degree of severity of POP. The biggest issue with excess weight when it comes to POP is surgical concerns-fatty tissue makes it more difficult to see structures in the pelvic cavity during surgical procedures, which can lengthen or complicate surgery.

Hi I am heading off for my posterior /anterior and sacrospinious fixation shortly, where do we see the webchat?

bloodyhamabeads Fri 19-Jan-18 20:07:56
Thank you for all your hard work in this area Sherrie. I went to the doctor on Monday and was described as have a mild prolapse and told to do some pelvic floor squeezes and wait 6 months.

My question is what position is best to be in when being examined by a doctor? I was examined lying on my back however it seems worse when I stand up. How severe does a prolapse need to be before referral to a specialist. Does length of time after childbirth make a difference? Thank you

Hi Bloodyhama,

Gravity always makes POP look and feel worse when standing. We encourage women to request screening in a standing position since when we lay back with feet in the stirrups, our organs shift back into their normal positions. When standing, gravity makes POP more pronounced. Unfortunately few diagnostic clinicians screen women in a standing position, so we tell our following to request it. When clinicians then do so, they are often surprised at the difference in how pronounced the POP is. At grade 2, women should absolutely be referred to a specialist, sadly there aren’t nearly enough POP specialists to address women’s needs since 50% of women are estimated to have POP. A gynecologist well versed in POP or women’s health physio should be able to advise regarding nonsurgical treatments, which is beneficial to help contain the degree of severity until you can get in to see a specialist. Childbirth is the leading cause of POP, and it’s best to let angry swollen vaginal and pelvic tissues return to their normal size after childbirth before attempting to diagnose the degree of POP- at 6 months childbirth and hormone related swelling should be leveled off.

AriadneThread Fri 19-Jan-18 22:07:47
Thanks so much for the webchat Sherrie.
I recently had my first baby, very long labour and family history of POP. How can I try to minimise the risk of prolapse?

Hi Ariadne,
Being a mom to a new baby can be exhausting, it’s truly important to try and take care of yourself, but obviously hard to do so with a baby to care for. With a family history of POP, do what you can to minimize risks of making it worse. Addressing your lifestyle and behaviors is of value. Try to avoid heavy lifting (difficult when you have a baby at least 3 months old, they can be so heavy to lift, especially when sleeping). Do your best to be contract your pelvic floor and core muscles when you do need to lift if possible. Rather than pick you baby up to nurture once he/she is able to stand and walk, try crouching down to their level (crouch at the knees, do not bend over) to hold them/nurture them. If they are able to crawl up into your lap while you sit on the couch, all the better, make a game out of it-let them know if they can get up in your lap, you’ll smother them in kisses.  If there is someone at home who can place your baby in your lap after you are sitting down, that is helpful.

Also when you sneeze, bend at the waste and cross your legs, reduces pressure to the pelvic floor. Sit when you must cough as well to reduce pressure. Try to eliminate sugar from your diet to reduce constipation (constipation is both a cause and a symptom of POP).