Pelvic Organ Prolapse Can You Advise, Please? Monday Hospital Visit (and would prefer to avoid surgery)

[Rostom]

Hello

I have had a problem with 'everything' coming south for a while!

A little background: I have had intermittent waves of pelvic pain (which come centrally to just below my navel) for 20+ years and have had investigations, scans, a D and C but nothing found except a large fibroid which should have shrunk by now but hasn't.

In 2009 I was told that I had a problem and required a cystocele operation, which I had. Unfortunately, two years later I felt a 'pop' and the operation failed.

I began pelvic floor exercises which I did religiously for several months but then only half-heartedly as I felt there was no improvement.

Two months ago I undertook urodynamic investigations which showed that I retain urine and was asked to self-catheterise twice a day, which I have been doing. I was also fitted with a ring pessary by a very competent nurse in hospital (my lovely GP had tried the year before but after trying eight or ten sizes/attempts, she gave up as they did not stay where they should).

Over the past two months I have had much pain - the old pain, centrally coming up etc., but also burning when weeing and was running to the loo. I assumed I had a UTI. In fact, I was given four lots of antibiotics (as my GP was unable to see me so there was no examination). I probably gave all the symptoms of a UTI to my GP during our telephone consultation, so not all her fault. The symptoms seemed like a UTI.

Up to date now: a week ago I saw that there was 'tissue' coming out on either side of the ring pessary and had a visit to the hospital nurse who confirmed that all my pelvic organs were prolapsing. It did look rather like a competition as to which bit would escape first... The nurse removed the ring pessary and told me to return next Monday when it would be necessary to see a doctor and she hinted of surgery, which I would rather not have.

I now have no pain, so it must have been the pessary that caused so much trouble. Is this usual? I understood that pessaries did not cause pain.

Would anyone know what my likely options are? Hysterectomy was suggested last year but I would rather not go down the surgical route. Is there anything else that I could think of having? Checking Dr. Google, I can only see the Gelhorn pessary which makes me nervous as if I had problems with the simple ring pessary........

If I have multi-organ prolapse, are they all going to continue their unrelenting march south? They are just inside at the moment but look like three pink balls squabbling over who will jump out first! Do they ever just stay put and not worsen?

I am in absolutely no pain now but would like to know options before I see the doctor on Monday. Any help or suggestions would be extremely welcome.

Many thanks in advance if you can suggest options, 'have been there, done that', or know anything about this problem.

Regards

Rostom

[HighlandMo]

That all sounds really scary for you. I have a prolapse of some sort (the GP said cervix - I can only assume my uterus is attached to it!). I saw a specialist physio a few times and do the exercises though I’m not sure if they help. My solution (via many internet searches) has been to use a natural sponge “tampon” to keep everything in. I feel it is a better solution than a pessary which I just didn’t like the sound of.

[Rostom in reply to HighlandMo]

Hi Highland Mo

Many thanks for your kind reply.

I would much rather avoid any surgery and am very interested in your natural sponge.

Could I please ask if it stays in, as wouldn't the downward pressure of the organs jostling for space push it out? Do you need to adjust it during the day?

Could you please recommend a website of the brand that you use?

If I am not 'too far gone' this sounds an excellent idea, so many thanks.

Regards

[HighlandMo in reply to Rostom]

Hi Rostom

Here is a reply I gave someone a while ago:

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 angd 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.

[HighlandMo in reply to HighlandMo]

I forgot the link to where I bought mine - silk Fina size 3 is what I bought but I cut them down.

naturalspasupplies.co.uk/sh...

[Rostom in reply to HighlandMo]

Hello Highland Mo

Just a huge thank you for your comprehensive mail and advice. I, as mentioned, have a hospital appointment on Monday and if I can have a conversation with doesn't end in the word surgery, I shall ask if these sponges will be suitable for me. I really like the idea of them and will try if I possibly can.

Once again, many thanks for your time and trouble.

Regards

Rostom

[HighlandMo in reply to Rostom]

Hello again. I don’t want to burst your bubble of hope but my physio had never heard of using sponges in this way and showed no sign of rushing off to research them! It’s clearly not standard practice so the people you see tomorrow may well be the same. I have thyroid problems too so am well used to going it alone. I’d suggest you try the sponges whilst waiting for the NHS treatment - nothing to lose by giving it a try! Good luck.

[Rostom in reply to HighlandMo]

Hi Highland Mo

I thought I owed you a quick response to your kind messages after my hospital consultation: essentially I need surgery, although the consultant did say I could postpone, so it can't be earth-shatteringly urgent.

I was given information relating to my prolapses and asked to choose between four treatments (surgical procedures)! I think matters have gone too far if the patient is as involved as this!

My pelvic organs won't apparently fall out (I am stage 2) and be dragged along the floor of Marks and Spencers, as I had originally feared!

The first is Vaginal hysterectomy, the second Vaginal sacrospinous hysteropexy with sutures, the third a Manchester repair (although that is rarely undertaken) and the fourth Sacro-hysteropexy with mesh. I shall have much fun weighing all of these up - or not...

I am to be referred to a physiotherapist for a better grip(!) on Kegel exercises. I thought I was too far gone for these to be of any use but the consultant suggested trying whilst I decide what to do/wait for my next appointment with him (three months away).

I shall still investigate the use of your sponges as they are intriguing and thank you for all your help.

I hope you keep well.

Regards

Rostom

[HighlandMo in reply to Rostom]

Hi Rostom

Stage 2 doesn’t sound too bad! No-one has told me what exactly is prolapsing or by how much. You can look up pictures of the different stages. I think mine’s about 1.5

I think it’s definitely worth trying the sponges. They give me great peace of mind - as you say I was convinced everything was going to fall out - whilst I was on holiday! Two and a half years later I’ve pretty much forgotten about it except for the daily routines of exercises and the sponges and the occasional time the sponge slips.

Good luck.

[Rostom in reply to HighlandMo]

Me again

Just to say thanks for suggesting sites showing POP - who knew! They were informative, although I would class myself as verging on a three.

I have also just received a letter from the consultant suggesting that I might not need surgery after all, which is confusing considering he asked me to go away and choose my preferred surgical option. If this is indeed the case i.e. no surgery, I am delighted. I think that he is happy either way and I can have surgery if I wish - very odd state of affairs!

The consultant is arranging for some physiotherapy/Kegel exercises for me and writes as if it is possible that matters won't progress. I am slightly more confused than before but I think... in a good way!

At least I know that I have options and that sponges are available if I should need a little help.

I hope you don't progress too much and that we both stay well.

Thank you again.

Regards

Rostom

[pudpain]

Hi Rostom, I have only just ready this thread and had some info for you if you may still be able to read this? Or if yout wanted to send me a direct message. I hope you are well.

[Ukulelelady1 in reply to pudpain]

Hi, I’ve been looking at this thread with interest, having recently being diagnosed with prolapse. (I had a hysterectomy quite a few years ago now). I was interested in what you were saying about sponges - can’t these give you toxic shock syndrome? It doesn’t sound a great way to keep your organs in place.

[Rostom in reply to Ukulelelady1]

Hello Ukulelelady1

Apologies, I have just only caught up with this thread.

I have just replied to pudpain and thought that my reply to her may be helpful for you, too.

HighlandMo recommends sponges and I guess that she has been fine regarding toxic shock syndrome. I can't really comment as I don't know much about them.

As in my reply to pudpain, the pelvic toners can help with a mild to moderate prolapse. I was impressed enough to recommend the Elvie although if you are verging on a three, I wonder if the Kegal toner may be better.

I reiterate, I have no medical training or knowledge; I write the above from my own experience.

Whichever you choose, I hope that you are helped. It's so annoying to have this type of problem, isn't it?!

Regards

Rostom

[Ukulelelady1 in reply to Rostom]

Hi, thank you for your reply. I realise that the post was made months ago, but I couldn’t ignore it, as I know how serious toxic shock is, and it’s not just caused by tampons.

With regard to the toners. I recently invested in a Kegel8 trainer, but feel it’s too early to give a full review to how it’s working. I have noticed though, that the probe often turns round and is not where it’s supposed to be for the programmes to be affective, but I’ve just discovered they do other probes, and am thinking of purchasing a different type of probe, which may be more suitable, as an add on purchase. They do many types of probes and they are worth taking a look at. It definitely ‘works’ the muscles, but I need to be using it for a longer time, before I can report back and give a proper review.

[Rostom in reply to pudpain]

Hello pudpain

Apologies, I have only just caught up with this thread.

I did not try t he sponges but from what HighlandMo wrote, it may be worth finding out more about them for you.

Since my posts, my Consultant has swerved surgery (also my preference) and suggested I buy an 'Elvie' pelvic toner.

I did so and thought I had a good response, as everything 'retreated'.

If you type in 'pelvic toner' on Mr Google, you will see a variety of items on offer. Actually, if your prolapse is at least a two, I would consider trying a different product. I saw a toner named 'Kegel8 Tight & Tone Electronic Pelvic Toner, Electronic Pelvic Toner Strengthens Weak Pelvic Floor Muscles'

I have nothing to do with this product but if I were to buy another toner, I would probably purchase this one. I am not sure that the Elvie does enough for my prolapse or, perhaps, that this Kegal toner could do more.

I have stopped using the Elvie at the moment because of a combination of infections (I don't think anything to do with the Elvie) and it seems to have gone a little wrong - the instructions cannot be followed but I must speak to Elvie about it. I mentioned this problem to my consultant who says I need the machine to be reset. I just haven't got around to it: not their fault.

I hope you find something that will be of benefit to you. The bottom line is that personally (obviously!), I feel that as long as one's prolapse is not too severe, these toners can help.

Wishing you good luck.

Rostom