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.

QuentinSummers Fri 19-Jan-18 22:15:16
Hi Sherrie, I have read a lot of conflicting advice about prolapse and the efficacy of different treatments (surgery, kegels etc). In your opinion, what is the best treatment for prolapse?

Hi Quentin,
There is no “best treatment”, every woman’s needs are unique, just as our bodies are unique. Some women never want surgery, some want surgery yesterday, some women have 3 types of POP grade 3, some have grade 2 with 2 types of POP. It is so important women educate themselves about their options, and go to their clinicians with a list of questions in hand to capture info, as well as review the resources on APOPS website, to help them decide what treatment is best for them. I’ll place several links in my closing statement to help locate some valuable tools.

Shakey15000 Fri 19-Jan-18 22:15:43
Thought of another one-

Is there screening in the US? Definitely isn't in the UK but I think I'm right in saying that France are shit hot on pelvic floor care after giving birth.

What needs to be done regarding this?

Hi Shakey,

There currently is no POP screening included with routine pelvic exams in the US. France is absolutely winning the race with their PT evaluations. APOPS stance is all women should be screened for POP during every routine pelvic exam, and is in the process of connecting the dots at the legislative level to address government medical criteria related to this concern. The docs are right down there when doing a pelvic exam, why aren’t they screening for POP considering how common it is?

Childbirth is the leading POP cause, menopause is the 2nd leading cause, and heavy lifting (hello, picking babies up all day every day), downward pounding fitness activities like running and jogging (I know you runners don’t want to hear that, I’m a fitness junkie too but do not run), chronic constipation, chronic coughing, DRA (diastatis rectus abdominus, the long abdominal muscle splits down the middle during pregnancy), genetics, hysterectomy, and neuromuscular diseases such as EDS (Ehlers Danlos, double jointed and stretchy skin) and Marfan all stack the risk factor for women. I had 7 causal factors-no shock I ended up with POP.

Countries around the world need to address this-it bears repeating, 50% of women experience POP! We need to get louder, demanding the powers that be to address what is likely the most common condition women as a whole experience. The women in APOPS following are from mid-teens through end of life, likely the largest demographic ever in woman’s health conditions

Will having another baby make a prolapse worse please?

Dabitdontrubit Fri 19-Jan-18 22:16:51
Hi! Please could you talk me through what surgical operations are available & possibly the pros & cons of those options? A kind of minimum to maximum? Thank you!

Hi Dabit,
There are far to many to list individually, but to categorize them beyond what I mentioned above, there are native tissue repairs (using your own tissues), bio mesh repairs (mesh made from pig or cow tissues), cadaver tissue repair (comes from yep, dead bodies), and transvaginal mesh repairs, which of course is under great scrutiny in the UK area at the moment. In full disclosure, I am a transvaginal mesh success story (my surgery was in 2008 for grade 3 rectocele, cystocele, and enterocele, mesh was used for bladder and rectum repair, entero was native tissue). We navigated the mesh mess in 2011-2013 here in the states, I spoke at the FDA in 2011 on these concerns. Zero doubt women with complications suffer horribly, but 89% of women who have mesh are considered success stories. I’m inserting a chunk of mesh info in the closing statement for those who have an interest in this area.

In general, the most important concern for women facing surgery is to find the most qualified POP specialist surgeon, rather than focus on the type of procedure. One you have comfort with a female pelvic medicine reconstructive surgeon, let them help you decide what procedure type is most appropriate for you

Toadling Fri 19-Jan-18 22:44:37
Good evening, I would like to know if physio can reverse a prolapse? Thanks in advance.

Hi Toadling,
POP cannot be completely reversed. However, if you are in grade 2, and the physio you are working with is good at women’s pelvic health, you may be able reduce the severity of symptoms considerably. It is important to realize however, that you must continue with maintenance for life-once you stop doing the right stuff, POP symptoms will be right back to where they were b/4 you started.

sillyoldowl Sat 20-Jan-18 07:42:15
Hi Sherrie
This happened to me recently. I won't lie I was completely and utterly shocked. I️t seems to have sorted itself but I am terrified I️t will happen again. Is this likely? What are the long term effect? I would like to have more children but would this damage my chances?
Thank you

Hi Silly,
While symptoms in the beginning stages of POP may come and go, typically as we go about our normal lives, POP will appear again, and because of the multitude of causes, many of which are related to how we live our daily lives, it typically gets worse over time if we don’t take measures to keep it under control (pelvic floor and core exercises, no heavy lifting, etc). I mentioned the symptoms earlier in our chat, so read all the responses to get that info. Having POP does not typically prevent pregnancy or childbirth, the impact is more related to physical, emotional, social, sexual, fitness, and employment quality of life. Most POP surgeons recommend holding off on surgery until you have completed birthing children.

BeyondWW Sat 20-Jan-18 13:16:31
I'm post-repair for my rectocele (though they left my cystocele for now) so cant think of a question, just marking my place for now as I'd love to read this

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

Hi Beyond,
Frustratingly, GLOBALLY POP is dismissed by clinicians as “not that big of a deal”. APOPS is fighting hard to change the global mindset. It has gotten a tad better in the US since I published the 1st Edition of my book in 2009, but we have a long way to go. Every Voice Matters ladies!

Gotofriggingsleep Sat 20-Jan-18 17:54:28
I'm having TVT surgery next month which will hopefully resolve my stress incontinence issues. However my Uro-gynaecologist says that I have a prolapsed bowel, bladder and womb that don't need surgery 'yet'. As a mid 30's mum of two very young children I am keen to avoid any major surgery for as long as possible. Any tips on how to prevent the prolapses worsening? I asked for example if I should avoid running and was shrugged at! Many thanks.

Hi Goto,
Please NO RUNNING! So few clinicians recognize how detrimental this is to the pelvic floor (I’ve actually gotten into arguments with a couple of them, but as I continued to explain why, they finally understand). There are so many other fitness activities you can engage in. Speed walking and swimming are both very valuable. Nothing where your feet hit the ground hard, it jerks the organs down.
(Have to add, your tag name totally cracks me up!)

MOMwithPOP Sat 20-Jan-18 19:57:12
I don't know if my exercise routine will be ok after surgery. My Urogyn says i will be fixed and should just do what i always do. But my physio says i should be more conservative. Can you talk about exercise after surgery. And thank you for taking the time to addres this. I am 44 and very active.

Hi MOM,
Absolutely be more conservative. No exercise for 12 weeks after surgery, then ease yourself back in. No downward foot pounding fitness activities such as running or jogging, and be sure to include core and floor fitness as well as long muscle fitness. I mix up yoga for warm up and cool down, floor exercises, and lift baby weights, doing upper body 3 times a week, lower body 2 times a week.

Now I'll start answering more that I don't have typed up already, so may be pauses in next posts coming in. Hang in there ladies, I'll keep plugging away.

@Horace57

The webchat is visible on this thread. All the best for your surgery

Lizzie60 Sat 20-Jan-18 20:05:02
Why do you think there is so little public awareness of POP issues when so many women will be affected by it at some point in their life and what can we all do to increase awareness? Thank you so much for championing this cause

Dear Lizzie,

I LOVE this question Lizzie, I’d stand on the street corner with my face painted orange with purple feather sticking out of my ears if I thought it would raise attention to pelvic organ prolapse. The stigmatizing symptoms of POP are the leading reason there is silence about this topic, but I also feel that in general women’s pelvic health concerns do not get the respect they deserve. When I started this journey back in 2007 2 weeks after I was diagnosed (that is the point I knew this was my destiny), there was NO conversation our loud about POP. We have absolutely moved forward, and now see a tiny bit in articles or on TV, but it’s far from what it needs to be. However, I have had my fingers on the pulse of women’s energy throughout this journey, and I can assure you, women are getting stronger and louder. There is zero doubt in my mind that there will soon be an explosion of women talking out loud about this, media coverage to draw attention to it, and clinician attention to our demands. Change is coming! Every Voice Matters Ladies!

Hi Sherrie,

No running... does that include the bounces and little jumps we do in my dance class at the gym? Yes, both feet do leave the floor... so I think I know what your answer will be.

MonChoufleur123 Sun 21-Jan-18 09:07:28
Hi Sherrie, to what degree do you think use of forceps are linked to postnatal prolapse? Of all the mums I know (myself included) it's those of us who had an episiotomy followed by forceps birth who are suffering problems. Doctors always say C section carries greater risk but friends who had those seem to have recovered so much quicker. Is a rethink on clinical outcomes and risk needed? Thank you x

Hi MonChou,

There is absolutely a link between forceps delivery and POP. It is validated in research that forceps delivery causes damage, and the tearing that occurs absolutely causes and compounds POP issues. Episiotomy is also an issues, if done properly it is fine, but often women are cut the wrong way, and stitched up on the surface only rather than by layers of tissue. Significant risk for damage, which can impact not only perineal tissues, but also function of elimination and pelvic floor support. C sections come with their own risk, as does any surgery. Additionally, cutting into the core of the body may cause a weakness in core support, which is also detrimental to pelvic health. It’s always a coin toss which way to go, natural or C, and even the surgeons argue about it, as well as continue to research it.

AuntyElle Sun 21-Jan-18 12:38:30
I’d like to ask how we can make this a mainstream issue, widely talked about? Including by HCPs? So that women are less likely to suffer in silence or without adequate help.
I was shocked by the suffering of MNers on this thread:
www.mumsnet.com/Talk/womens_rights/3125584-Impact-of-birth-injuries-prolapse-etc

I had no idea until I read that.
Thank you for your work on this.

Hi Aunty,

I don’t want to take time our of posting by reading this thread so can’t comment, but will absolutely read it and try to bounce back in with thoughts at a later date.

Gizzymum Sun 21-Jan-18 14:32:19
I'd like to ask if there's anything we can do during labour to decrease the risk of prolapse eg is pushing when told to the best approach, or are certain positions more likely to create prolapses?

Also, what are the risks of having a natural birth if you already have a mild cystocele (asking for a friend ?

Hi Gizzy,

The most natural position for childbirth is supposed to be squatting, but that seldom occurs in developed countries. Pushing is generally directed by the clinician on deck, and I’m not an expert on childbirth, so best not comment on that. Childbirth in general is the most common cause of POP, no matter if natural childbirth or not, and every additional childbirth increases your risk of having POP. The flow of each individual childbirth impacts the turnout related to POP, so if birthing with a cystocele and you need to push long and hard, it’s going to impact the degree of POP most likely. But there is no point is making yourself stressed out prior to what is one of the most beautiful experiences a mom can have, bringing a live person into the world. It’s so important to discuss this with your clinicians, but to not make yourself crazy with what-ifs. Tell your friend to try to embrace every aspect of pregnancy and birthing, a navigate the after-effects once she knows what they will be.

TheWelshDragon Mon 22-Jan-18 06:21:12
Hi, I have problems with being unable to hold urine in when I need to go. I've tried physiotherapy but they wanted me to use a machine because I wasn't really exercising effectively without one, barely squeezing the muscles. I disliked the machine (it sent a sort of current through) so gave up . Is there anything I can do to improve my pelvic floor exercises? Thanks.

Dear TheWelsh,
This would be electrical stimulation. Perhaps the physio had the juice turned up a bit too high if it was uncomfortable. A good physio can use biofeedback to better understand what is working and what is not with your pelvic floor, and guide you accordingly. Pelvic floor and core exercises are so beneficial, but some women have damage to levator muscles, which can disable them from being able to contract. It is so important to stick with it regarding pelvic floor exercises, it’s maintenance for life, much like continuing to brush your teeth after you have a cavity fixed. The only way a muscle gets stronger is to keep exercising it. It would be helpful if your physio did biofeedback to help you understand if you are doing kegel contractions the right way and then once you know the proper technique, it’s best to do them once a day at least 5 days a week. You can also contract your pelvic floor muscles repetitively while doing any activity that reminds you to do so, such as when you grocery shop, every time you put something in the cart, contract, or every time you get the mail, contract.

In UK current advice is to do 3x 10x10 seconds a day and 3x 10x3 seconds and not any more than this, but you are suggesting 'extra ones'....confused!

Enirroc Mon 22-Jan-18 19:31:33
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.

Hi Enni,
This is a topic near and dear to my heart, few women know about POP, few women know about EDS (double-jointed and/or really stretchy tissue). This combination typically causes significant issues for women when they give birth. I congratulate you on being so pro-active, and thanks for sharing how beneficial using the vibrator was to strengthening your pelvic floor muscles! Since organs are suspended by their own structural tissues from above or alongside, organs can still prolapse with a tight or strong pelvic floor. It would certainly be worth trying a pessary (not sure what you mean by a coil beyond those used for birth control). It may also be worth a try to scope out support garments (all women with POP can try this too, not just those with EDS-its of particular value for women who work on their feet all day such as waitresses). Pick up a support garment (like the old time girdles) that has a V type band in the front, with the point of the V being at the crotch, the wide end up toward the waist. Wash your hands. Lay on the bed so organs settle down into their normal positions, gently push them back inside, and then pull the garment up. Some women can't stand the pressure on their stomachs (that would be me, I have IBS), some it doesn't bother at all, and can really help keep things up where they belong. Good luck, I hope this helps!

Mudwrestler Tue 23-Jan-18 02:11:50
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 Mud,
As hormones fluctuate, so does water retention and bloating. Organs and organ systems are so tightly packed in the pelvic cavity, and some women only notice POP in that 1 week monthly slot. Check yourself visually (with a hand held mirror) when not in this 5 day slot to see if any tissues are bulging then. do the check at the end of the day and while standing. If there are tissues bulging, please tell your surgeon.

tiddlyipom Tue 23-Jan-18 08:23:44
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,

Hi Tiddly,
It's important women know that there is considerable success with mesh surgery, but the media generally focuses on yikes failure stories (better ratings). I'm including mesh info at the end of this chat with some links. If you are confident in your clinician, I would not worry at all about mesh.

Whether a woman chooses surgery or not, it is imperative she have a pelvic floor and core exercise routine and stick with it for life. As mentioned earlier, non exercising your pelvic floor after surgery (wait 12 weeks to heal up properly) is like not brushing your teeth after you have a cavity fixed. :)

Closing Statement
I can’t thank you enough for taking the time to chat with me today ladies! It makes me smile big time when I see women being proactive about pelvic organ prolapse! Please continue to educate yourselves. There’s a ton of info on APOPS website (simply Google APOPS and start looking around), there is POP info on many pages (check the drop down menus), POP Info, Sherrie Palm Articles, Library pages. Check out the home page, there are quite a few links to specific website sections of value. Here’s a few links for you too! I’m also including a link to the page with info on the 3rd edition of my book, there is a page you can print off that you can take to your library and ask to have it brought in so you can read it for free, as well as a link to view the view the Endorsements, Table of Contents, Foreword, and Introduction. Lots of valuable info.
APOPS home page:
www.pelvicorganprolapsesupport.org/

Book: Pelvic Organ Prolapse, The Silent Epidemic 3rd Edition
www.pelvicorganprolapsesupport.org/pelvic-organ-prolapse-the-silent-epidemic-3/

POP Questions to Ask Your Physician
www.pelvicorganprolapsesupport.org/pop-questions-to-ask-your-physician/

Suspect you have POP but aren’t sure? Take a hand held mirror late in the day, close and lock the bathroom door, and while standing, take a look to see if any tissue is bulging outside of your vagina. Here’s a link to APOPS POP Risk Factor Questionnaire.
www.pelvicorganprolapsesupport.org/pop-risk-factor-questionnaire/

Mesh info:
Women who experience mesh complications suffer horribly. Mesh complications were addressed in the US between 2011 and 2013, sadly the rest of the world did not recognize issues until years later. I spoke at the FDA (the Food and Drug Administration is the medical device governing body in the US), and here is the statement I provided at that meeting. Mesh in and of itself is not typically not the reason for the majority of complications that have occurred. Complications for the most part are the result of inadequate appropriate training or experience within specialist sector or non-specialists utilizing tools and providing procedures the do not have appropriate training to provide.
www.pelvicorganprolapsesupport.org/pop-presentation-to-the-fda-obgyn-committee
I posted a statement to the APOPS website mesh page that was released by International Urogynecological Association (IUGA) on January 19, 2018, clarifying the status quo for mesh in the UK. There are currently 3 countries that have instated a ban on mesh, but it is important to recognize that these bans are not complete bans. According to the IUGA statement, within the UK “this does not cover abdominal mesh surgery for pelvic organ prolapse, and mesh can be used to treat stress urinary incontinence.” Here is a link to the complete statement. It is imperative patients be fully informed at all times, and it is the physician’s job to provide as much information as possible, especially regarding mesh.
static1.squarespace.com/static/52a626cfe4b0e076e263cf7c/t/5a66207608522991e0716303/1516642424430/IUGA+mesh+ban+statement.pdf
More information about mesh use in general can be found on the APOPS mesh page, including a couple of pro/con articles with input from urogynecologic specialists on both sides of the fence. It is imperative women have access to information on all types of POP treatment, both surgical and non-surgical. It is imperative do their homework and find out as much information about POP, it’s causes, it’s treatments, to understand what the best course is to address their very individual needs. There are 5 types of POP, 4 degrees of severity, and a multitude of causal factors (including lifestyle, behavior, and co-existing medical conditions such as EDS double-jointed or stretchy tissue). Every woman’s needs are unique.
www.pelvicorganprolapsesupport.org/mesh-updates/
Mesh Questions to Ask Your Physician
www.pelvicorganprolapsesupport.org/mesh/

Time is up, so thank you to everyone who contributed to this evening's webchat. A huge thank you to Sherrie for your thoughtful and informative answers. We really appreciate you giving your us your time and hope you'll join us on Mumsnet again another time. Thanks also for overcoming the tech issues so masterfully think everyone was able to follow easily.

Goodnight all, MNHQ x

Thank you all so very much for joining in today ladies! I sure wish we had time to get through all questions!
Sher

Thanks Sherrie, what a lot of information in just an hour!