A Newbie with Pelvic Organ Prolapse

Hi, This is my first post... I was diagnosed in Nov 2019 with a 'moderate,' anterior and posterior prolapse. The Gynaecologist was uncommunicative and detached.

His first words to me after "Hello," were to ask me if I want to be fitted for 'pessary' during the appointment. My response was, "Fitted for a WHAT?" I was clueless. I have since read and learned a lot, but I am still pretty naive and clueless.

I declined the pessary and opted to have physio therapy; and dedicated myself to doing the daily Kegel exercises. I have done them pretty regularly for 8 months.

Things have unfortunately, gotten worse... the actual "prolapse' is now more physically obvious and I experience extreme pain, cramping, daily diarrhoea, flatulence and lower back pain. (By the way, nobody EVER mentioned any of these as possible symptoms of pelvic organ prolapse! Thanks Doc!)

My May appointment was cancelled because of Covid and I am now just sitting here (in pain) waiting, waiting, waiting.

I'm hoping to get fitted for a pessary as soon as possible, and also looking into possible corrective surgery, down the line.

My plan is to be here (on this site) regularly and I'm hoping to read about some of your experiences and treatments you've tried. What's worked, what hasn't.

By the way, I am a 66 year old woman; I've had two vaginal births and I'm in pretty good physical condition.

I'm not very "idyllic" these days, but I am hopeful.

Cheers

[young-at-heart48]

Hello Idyllic. I am a relatively fit and active 72 year old, and have had a prolapse for the last 6 years. I have an anterior, posterior and uterine stages 3 and 4 prolapse. I originally had flexible ring pessaries fitted, they helped a bit, but not fully. Last November I went to see a specialist to find out about having a repair, which I must admit I was not keen on. She suggested that as I wasn't keen on surgery, I try a different type of pessary. It is still a ring pessary made of sillicone, but unlike the flexible ones it doesnt need to be changed every 4 - 6 months, it is removed cleaned and replaced, and lasts for about 9 years. It has totally changed my life, I can now walk for hours without feeling as though everything is falling out, in fact I feel 99% normal.

[Hidden in reply to young-at-heart48]

WOW! Thanks... what a great story! To be able to walk and move in comfort would be amazing! If I can ever get to see the Gyno again, I will enquire! Thank you!

[Donnay in reply to young-at-heart48]

This sounds great a my flexible ring pessary tends to come down on a walk but can you continue a sex life with your type of pessary ?

[young-at-heart48 in reply to Donnay]

Yes, it is still a ring. I don’t know why it works better, but as you say I also found that the flexible Ones dropped and by the end of the day I felt as though everything was falling out. This ring stays in place and does the job.

[Kitoravska in reply to young-at-heart48]

Thank you for you storry .I am 35 years old before 2 monhs I have delivery

[livingwithprolapse in reply to young-at-heart48]

Hello there. Thank you kindly for sharing your story. What is the name of the pessary you are using? I had a baby 6 months ago. Long labour with forceps used twice. As a result, I have suffered a mid grade prolapse. What were the side effects (if any) with the 9 year pesssary? Thank you for your help.

[Keys2theworld in reply to young-at-heart48]

Can you tell me the name of the 'ring' pessary please. I'd like to discuss it with my GP next week.Thank you.

[HighlandMo]

Hi. There isn’t much advice out there is there! I’m not sure if this will help as your prolapse seems to have developed into something worse than mine but here’s my story. I’m 70 now and a few years ago discovered a prolapse. I was referred by my Gp for physio and I’ve done the exercises for several years now. I have never had a pessary as I didn’t like the sound of them. Instead I researched a bit and I have been using sea sponges as well as the exercises. They work in the same way as a pessary -by plugging the gap so things can’t fall any further! But I take mine out every evening so things can “breathe” and they’re soft and squishy so very comfortable. It’s worked for me. If you’d like to give it a go whilst waiting for your appointment I can give you more detailed info.

[Donnay in reply to HighlandMo]

I have heard about these sponges before. I was originally interested but having heard that tampons etc should be changed every 2/3 hours even with a very light flow I'm concerned about leaving a sponge in all day?

[HighlandMo in reply to Donnay]

Yes I was too and at first took it out mid day and cleaned it and put it back. With time I’ve found that all day doesn’t seem to cause any problems. Probably because at my age there is no flow!

[Purplegwynt in reply to HighlandMo]

Hi, I just read your post about sea sponges and wondered if you would please give me some more info. Where do you buy them, are they like the natural sponge you use in the shower?

[HighlandMo in reply to Purplegwynt]

You can get sponges as menstrual tampons or specially for prolapse. The prolapse ones look far too big to me. Mine are only about 5cm in all directions but the main advantage is that no matter what size you buy they can be trimmed to size. You can get them with or without strings attached (like a tampon). Here is a link to some with string already attached.

puresponges.co.uk/img8996-l...

I have bought natural silk fina sponges and attached dental floss using a darning needle. You can replace the "string" when it looks a bit past it. If you do it this way (much cheaper so you an have lots of them) soak the sponge and feel them all over to make very sure the sponges are free from any little bits of grit from the ocean!!

The same website also tells you how to look after the sponges.

puresponges.co.uk/looking-a...

Every evening(I don’t use one over night as I feel this lets things breathe and gravity is not against you at night) I clean that day's sponge with unscented soap. Then every 4 days use baking soda (1 heaped teaspoon to a mug of warm water) to soak the last 4 sponges whilst getting washed and dressed then rinse and squeeze them out and hang them in a mesh laundry bag to air dry. You soon get into a routine for cleaning them and it only takes a few minutes.

When using a sponge remember to squeeze it out in water first to make it soft then I put a little bit of coconut oil on it and also a little around the entrance of the vagina to help get the sponge in. It's a bit strange to start with but you get to know the angle and where it needs to sit. My first try was a disaster and it felt really scratchy but I tried again a few weeks later and took a bit more care and it was fine. Some days it's so comfortable I forget it's there and some days the sponge slips a bit and feels uncomfortable - maybe the sponge is too small or too big or maybe it's not in right. Whatever, it gives me confidence that my insides can't escape and gives me time to work on the exercises that might work long term.

[Purplegwynt in reply to HighlandMo]

Thank you for replying and for the info I will give the sponges a try.

[HighlandMo in reply to Purplegwynt]

You’re welcome. I hope they work for you.

[newhorizons]

There is a very good programme of exercises called Pelvic Health and Aweareness by Deborah Bowes. Look up Feldenkrais Resources website. It is in America, they will post it to you. Or try Googling Pelvic floor Physios. They are also very good.

[Lizpov]

Hello Idyllic, I am off to see my go tomorrow to be examined and diagnosed. When ringing to make an appointment the receptionist said the gp was trained to fit ring pessaries, so she would book me in to see her. I will say I have seen a physio specialising in pelvic floor exercises in the past, I have been doing pelvic floor exercises religiously for almost 2 years, and 2 months ago purchased a Kegel toner, as I had noticed a lump when I had been out walking (covid related exercise), which has become more permanent over the last couple of weeks, I also experience occasional urge and stress incontinence. Like many of the other women in this site, I have felt this problem is starting to get me down, and make me feel old...I'm not, I'm only 62. I will keep you posted, and would love to hear how you're getting on.

[livingwithprolapse in reply to Lizpov]

Hi there Lizpov. Please do let me know what your GP said. It is always good to hear other people's experiences. I have just turned 34 with a small baby and have mid grade prolapse. How had your physio been? Did you go through the NHS or privately?

[Lizpov in reply to livingwithprolapse]

Hi Livingwithprolapse, my gp diagnosed a cystocoele (prolapsed bladder). I'm going to be fitted with a ring pessary, and she's referring me to see a gynaecologist with a view to surgery as I'm still relatively young and fit (I'm 62)! I am undecided about surgery, but not sure I want a pessary for the rest of my life either.I saw a physio through the NHS, referred by my gp, but sadly it didn't do the trick, despite me working hard at it. About 16 years ago I had to have a prolapsed rectum repair, so maybe I was always going to be prone to this, whatever I did.

[livingwithprolapse in reply to Lizpov]

Thank you. I have been looking at the statistics regarding surgery and reoccurrence rates appear quite common amongst the board for all surgeries. It is quite early on for me so I am still looking into all possible routes too. May I ask why you do not want a pessary for the rest of your life? I am saddened by the thought of having to possibly have a pessary for the rest of my life too. Did you or do you experience any lower back pain? I find that it tends to come up when I change my baby's nappy so having to readjust the height at which I do this. Please let me know how you get on with the ring pessary. My GP has ordered a PVC ring for me and I will be fitted with it soon. Still waiting to see the gyno. Despite how upsetting this (having also been fit and healthy), I am prepared to live with this as best as I can. Having this forum is incredibly helpful as it is important as women we are honest and open about these issues.

[Lizpov in reply to livingwithprolapse]

It is certainly a subject that is not discussed and I'm sure many women suffer in silence.Regarding the pessary, I asked whether it would be a problem during sex, and my gp said you can work around it, so I guess we will have to see how it goes. Also you have to go back to the gp and have it replaced every 3 (?) months. I just have an idea it could get smelly. I used a diaphragm for contraception for many years so I'm not bothered about it being inserted/removed. I do know that the surgeries have a risk of failing, but I had a rectal prolapse repaired in 2004 with no further problems, although it was repaired abdominally.

Btw I don't get any pain with it at all, thankfully, but do occasionally get urine leaks.

Let me know how you get on with the ring, I am being measured this Thurs.

[livingwithprolapse in reply to Lizpov]

Thank you. I will let you know. I’m hoping to have my appointment next Tuesday. Glad to hear you’ve have no further issues following your surgery!