Support items for prolapse

Yep, Matron:-)  The prolapses (anterior, posterior and vaginal vault) were picked up on a cancer check up and they referred me to a prolapse specialist.  Because the repair done at the same time as the hysterectomy last November failed (probably due to having Ehlers Danlos which was diagnosed after the op) they consider I'm not really suitable for surgery now, so a pessary support is my best option (I had one for years, very successfully before the op) and the specialist tried a Gellhorn first but that had dropped down and was half way out within a few hours when I went to wee, and there was some difficulty weeing with it.  I didn't realise at the time and thought it was just soreness from it being fitted, but then the next fitting was a Gellhorn two sizes bigger, which she wondered if was too big, but thought we'd give it a go.  I couldn't wee at all.  Nothing.  So she took that out (and that was BAD - not a nice experience!  I came out bleeding from abrasion and quivering.) so I've now got an appointment for Tuesday this coming week for her to try something different.  I know it can take three or four attempts to find the right pessary, but I know my anatomy has changed from the repair that was done and the hysterectomy, and I am wondering if the fact that two Gellhorns blocked the urethra (at least, I assume that's what happened when I couldn't wee) MIGHT mean nothing is suitable, but I've been told there still might be a chance there is a suitable one.  A shelf pessary has been mentioned but I know they're difficult to get in and out too, so I'm a bit anxious about her attempting one of those and have asked her to try a filled in ring first.  But this time I'm taking Ibuprofen and a valium before I go!  She did tell me that pelvic floor exercises wouldn't help me at all, because the problem is Ehlers Danlos.  I've also got the very beginning of a rectal prolapse as well (just the mucosa layer).  It's a bundle of fun!  Any advice you can offer will be gratefully received!  I don't want to put anyone else off trying a pessary because mine worked SO well for so many years!

Chris you have had such an awful time and obviously being diagnosed with Ehlers Danlos has put a spanner in the works. I don't know whether you're in the UK but a lot of Urogynaecologists have a team behind them consisting of specialist nurses (I'm one) and specialist physiotherapists who help with pelvic floor exercises although they won't help you. I think you need to take the Valium and ibuprofen and let your doctor try another pessary. I've also been thinking about the garments you mentioned to give you support in the future. That's where the specialist staff could help. Have you discussed this idea with your consultant? The specialist nurse and physio could help. It's something I'll think more about and get back to you if that's ok with you.

Thanks Matron.  As always, you've given wonderful advice:-)  I am thinking without a pessary the prolapses are likely to get worse, purely because of the Ehlers Danlos, but it's a good idea to discuss with them what happens then if they can't fit a pessary.  I rather got the impression that there weren't any options they could give me then other than something really radical - stitching up the vagina or something but they don't do that until women are about 90!  Yes, certainly any advice you can give is appreciated.  It was my idea about the valium and Ibuprofen (I suddenly remembered that was recommended when I went for a colposcopy and they gave me six valium tablets, so I only used one and have the rest left) but I feel much happier having decided to use those. 

I loved your idea about the Valium and if I was in your shoes I would do the same. I do remember the days when patients were offered something to help them relax with most procedures but with all the cut backs in the NHS this doesn't happen anymore. I will be in touch.

Thanks Matron.  It was only an online group where I found the recommendation for valium and Ibuprofen before the colposcopy - I was SO lucky to find that, and my GP was happy to prescribe it, but other women turned up with no pain relief or anything simply because they didn't know about it.   But truly, I don't want to worry people about pessaries being fitted normally because I've not had a problem like this before and think it's because of the surgery causing difficulties, so while it's slightly uncomfortable normally (more getting it out than putting it in), it's something you get used to and as I said, I had mine for years, being changed every four months, quite happily:-)

I love your positive attitude chris. I sincerely hope you find an answer to all of this.

Oh thank you.  But I'm not always positive.  I had a bad day yesterday and was in tears at one point, but picked up again today.  I think it's going to be a case of change what I can, and what I can't, learn to live with, but do that in the best possible way with as much information as possible:-))))

Thank you Dorry - yes, this is definitely reassuring LOL!  I had no fear of pessaries being fitted until the last time!  I'm going to ask them to try the shelf, which is something that was mentioned initially but she thought she'd try the Gellhorns first and then I went off the idea of the shelf because that's more difficult to get out still, but Matron has said that could be the best one for me, so if she feels, having learned about my anatomy now, that it might work, we'll give it a go, otherwise I've asked about the filled in ring but to be honest that was purely based on ease of getting it in and out!  I will certainly mention the cube as well.  I've also wondered about the doughnut, which although it can be difficult to get in and out, apparently some air can be drawn out with a needle and then injected back in, in situ, and the same for it coming out, so maybe even that would work.  My wonderful husband piped up while we were there that we can manage without penetration so to find the best pessary to give me most comfort- bless him!  But this time I'm taking a valium and Ibuprofen before I got, so I shall lie back and think of England more happily:-)

Yes, it's good to know the options that will be there if a pessary can't be fitted and it gets worse.  My feeling is that a prolapse has to drop a certain amount  below the rest of the vagina to benefit from physical support and mine hasn't got that far yet, but it's nice to know there are options if it turns out a pessary isn't possible.  There's also a site that does something for pregnant women with prolapses with a strong band of elastic around the lower hips and abdomen and a pretty 'hammock' bit from front to back, so I think they would also be knickers as well and you wouldn't need knickers on top.  They are very expensive for what they are though and I THINK, if I get to that point, I'd try making my own!  You don't need to be THAT handy with a needle and thread to try something basic like this, to at least see if it will work for you and then you can pretty anything up with lace etc.  Some of the items looked pretty bad - massive knickers with some sort of tape stuff - they looked as though you could parachute from a plane in them:-)  But there are lots of options around,  including the low cut bike shorts, low cut shapers,  and various elastic band supported 'hammock' types including Lynn's:-) so that makes you feel you have some control.  I saw somewhere where someone had got some shapers or bike shorts and just rolled them down so they weren't giving pressure on the upper abdomen too.  But I'm still hoping the pessary will be the answer for me.  If she's not found something suitable after four or five attempts, I might well give up at that point (and so might she!), but we'll see.

I saw in another thread that you have another pessary and it seems to be working.  Update please

Hi Dorry, I took the plunge and made the appointment for a third attempt this morning.  I took a valium and two ibuprofen before I went, but really I needn't have bothered!  It wasn't even uncomfortable!  Because the previous two Gellhorn's (type of pessary) had given me problems weeing she first tried a typical type ring pessary and said she wasn't happy with it and then tried a shelf pessary.  Matron had already suggested the shelf might work well for me (she knows what she's talking about!), and the specialist had also mentioned it on my first visit but then decided on the Gellhorn instead but the shelf was obviously the right thing because I was sent off to wee, and ..... EUREKA - I could wee fine.  I was just SO SO happy!  In fact husband stopped to get some petrol and as he was in the queue to pay he said he could see me smiling in the car LOL!  The specialist did say that going to the loo in the morning will tell me if it's going to be fine, but I'll be quite surprised now if it's not because it feels right, it's doing it's job, and I can wee fine.  This is going to stop the prolapse getting worse and unless there are unforseen circumstances, I'm hoping I will have it for years now, with no need to give it further thought or concern.  It will be taken out and everything checked around every 4 months, but I've really no worries about that at all.  I feel I can get on with life now!  I was even comfortable enough to go on the exercise bike and treadmill when we got home, so not even sore!

Thank you SO much for asking, and thank everyone for the support, and I hope this might help someone else too:-))))  It's so good to have choices, and even if someone wants surgery at some time, if they are really uncomfortable this might be an option they want to choose.  The pessary I've got in does mean no penetration sexually, but my lovely husband, when the specialist was asking what we wanted, said that he was more concerned about my general comfort than worrying about that aspect and we'd be fine without being able to have penetration.  Can husbands get any better?

Thanks Dorry:-)))))  Yes, I'd decided I was going to give it another two tries after today in the hopes that SOMETHING would work:-))))  I think probably if I hadn't had a ring so successfully for so long before the surgery I might not have felt it was worth persevering.  Yes, I am so lucky with my husband - he's a gem:-)))) 

Alison, I'm going to try messaging you privately about the Ehlers Danlos.  Sorry for the delay - I missed your post!