Bladder Prolapse

[LoopyLou72]

After the issues of the last few weeks an impacted bowel caused a bladder infection, which has been treated, but new weird pains got me having to self examine my areas due to difficulties in both areas. I contacted a lovely friend for advice, who struggles with the same issues, and explained what it felt like. I'm at the GP's tomorrow but it's likely my bladder has prolapsed. It's definitely not helping my bladder retention or difficulty passing from the bladder and bowel. I'm due four bladder surgeries already so this is going to give my urologist a headache. Xx

[Barnclown]

Am sending you pos vibes for your GP appt today...am going through something v similar...a NHS a Pelvic Multidiscipline Team including urology + gyn + colorectal + women's health services physio are all helping me with multiple prolapses down there.

Hope you'll let us know how you get on

🍀🍀 coco

PS By the way: I just replied to your prolapse post...have you seen what the Mayo clinc website has about

cystoceles (bladder prolapse)

mayoclinic.org/diseases-con...

rectoceles (posterior prolapse)

mayoclinic.org/diseases-con...

I think the info & diagrams etc there are really helpful!

[Whatnext1]

Sorry to hear your problems LoopyLou. I had a bladder prolapse and also mild bowel prolapse into the vagina but had the bladder one repaired when I had a hysterectomy, but eight months later it failed, and the vaginal vault was also on it's way down, so I elected to have a prolapse pessary fitted. I'd had a prolapse ring pessary for years before the surgery and that worked pretty well - I only had the repair done because I was having the hysterectomy so thought it worth having the two together, but I now have a shelf pessary holding everything in place and that's working well for me, but hopefully you'll be able to get the prolapse sorted too. Let us know, will you? Hope all goes well for you.

[Barnclown in reply to Whatnext1]

hello whatnext...glad you're here!

hope loopylou won't mind if i jump in with some news + a question on this subject...

i've been talking to my consultants about these prolapse pessaries...so far, we 'think' my prolapses are relatively 'mild', which is good because the consultants are not keen to fit me with a pessary due to my vaginal DES daughter birthdefects + vaginal adenosis + vaginal scar tissue & stenosis etc making me extra predisposed to rare vaginal cancers + due to my version of sjogrens/SLE making my connective tissues extra susceptible to metaplasias....i've already had a malignant tumour of the connective tissue amputated elsewhere...all this history means i have to avoid any kind of fitted orthotic which could in any way cause irritation or inflammation by coming into contact with my highly reactive mucous membranes (eg even dental fittings, not just vaginal).

when i learned all this i felt really dejected: surgeons don't like operating on me due to my POTS etc etc. now conservative methods like pessaries seem to incur too much risk. well, it's early days yet: we'll see what the Pelvic Mixed Disciplinary Team gyn & my vulva clinic/DES monitoring gyn say when they've discussed all this

but meanwhile: have you had any trouble with your pessaries irritating?

[Whatnext1]

Hi Barnclown. So sorry to hear of the problems you've had! Pessaries are made of various different materials. My stupid GP, when she was fitting the ring pessaries, didn't take notice of the instructions to rinse off the abrasive powder that is left on them after manufacturing and I DID get a problem with the cervix bleeding that was caused by abrasion, after about 4 or 5 years of use. BUT, she'd also decided that because she was fitting these ring pessaries I needed to be on a triple dose rather than the recommended dose of Vagifem (a local estrogen product). I later found out by looking on the Vagifem site that this raises the risk of endometrial cancer and also causes irritation. When the cervix started bleeding she sent me for a scan and to cut a long story short I had endometrial cancer. It was, however, found that it had been the prolapse pessary ring (unwashed each time of changing, every 4 months) had caused the abrasion. I was lucky, because my cervix was completely closed due to previous fibroid surgery and a miscarriage D & C, so I wouldn't have had the warning signs of bleeding coming from the uterus. I used to get some discharge with the ring pessary but it was never mentioned to me that a pessary of a different material could have a different effect - all I got was the dose of estrogen put up more, with no mention of any alternatives! Because of the vaginal repair and the hysterectomy and the vaginal vault coming down, a ring pessary wouldn't work this time, but a shelf pessary DOES! It works beautifully and I've had it since last November, with no problems at all. I do use organic coconut as a moisturiser now and that works beautifully too. No estrogen products for me! I'm not getting the discharge from the shelf pessary either. It's not a bundle of fun having it taken out and replaced, but worth it as far as I'm concerned. Also, the studies show that a prolapse pessary can stop prolapses getting worse. I've been lucky to catch mine before they affected bowel and bladder, so the chances are the prolapses won't develop. I should add that with some prolapse pessaries you can have a normal sex life but you can't with a shelf pessary.

Sorry if I've rambled somewhat and I can understand your reluctance to use any foreign 'object'. My gynie was reluctant to do another repair because of the EDS and the first repair failing eight months after it had been done, and also because the vaginal vault and the bowel prolapse all indicated weak connective tissue. With 'normal' people without connective tissue problems, one third of prolapse repairs will fail (but I don't know the time period for those failures), but she said with the connective tissue problem I had that possibly doubled the chance of failure, or at least reduced the chance of success hugely and since the pessary works well for me, I'm happy to go with it. I'm still glad they attempted the repair. I wouldn't have had it done if I hadn't been having the hysterectomy because each time it's three months healing time where you have to be so careful not to lift anything etc. and also I had read that some people, after a prolapse repair, can't be fitted with a prolapse pessary if it's failed, and that really worried me, but I took the risk, and thankfully they did find a prolapse pessary that worked well for me, but to some extent it's fumbling through and hoping for the best But my bladder prolapse was feeling as though there was a lemon stuck half way in the vagina, so I'm well pleased to get rid of that feeling:-))))

[Barnclown in reply to Whatnext1]

My gosh: you are courage itself, whatnext! Am VVV grateful for ALL these details...they do fit with my understanding of the factors in my case and you are helping me ENORMOUSLY (again) to get my head around all this

interestingly, because I was so severely affected inutero for many months from an early stage by the notorious artificial oestrogen DES (stilboestrerol) my mother was taking daily on prescription supposedly to prevent miscarriage, I'm greatly at risk with any exposure to oestrogens (one poor GP tried me on vagifem which gave me rashes all over my bod), so no chance of me getting together with that stuff over this prolapse thing. Since 2007, have been doing well on a gyn treatment plan of prescription ReplensMD + Emulsiderm bathing + YES lubricants + dermovate for Lichen Sclerosus & the usual conventional lifestyle management techniques (inc pelvic floor fitness & relaxation)...it's only in the past 5 months that these internal problems have needed investigation...and I am 62, so I guess this is all inevitable

Am so glad you, loopylou and co are here on forum. I bear this much better in your company

🍀XO

[Whatnext1 in reply to Barnclown]

Oh now I'm not courageous, just coped with it as best I could and fumbled through LOL! Women do seem to have hormone treatments thrust at them too often. I was really worried about using Vagifem at all because my mother died from breast cancer but my GP just kept telling me it was completely safe! I think you are so right about lubricants and Replens. There are lots of good alternatives to hormones. There have been lots of studies about the benefits of products with hyalaronic acid in them showing that they can not just deal with the symptoms of atrophy but actually improve it, as hormones do. Balance Activ Menopause Plus do pessaries and gel and there are also Gynomunal which can be got on the NHS now that contains hyalaronic acid BUT one of the products in it does have estrogenic action, so personally I'd avoid it, even though it's not an estrogen. The jury seems to be out as to whether it's safe if you've had a cancer linked to estrogen. But so far the coconut seems to suit me well:-))) My gynie told me that because of the EDS and the severity of my prolapses pelvic floor exercises wouldn't help me at all. I'm 66. My biggest issue is osteoarthritis though and the ligament problems associated with it, as well as flare ups of fibromyalgia, but all in all, after seeing what some people go through with EDS I feel I'm lucky!

[Barnclown in reply to Whatnext1]

I like your attitude.

And what your gyn said about pelvic floor fitness is v interesting + fits with what's happened to me: my PF is v fit but I still have the global ligament laxity messing me up.

My EDH could be else....my biggest issues are infant onset lupus, sjogrens & primary immunodeficiency + the history of malignancy...and I know that even all those could be a lot more severe than they are.

🍀👍

[Whatnext1 in reply to Barnclown]

I think we do have to count our blessings. I know when cancer comes into it then it does shake you up, but I told myself once I'd had the op that I was probably no more likely to get a recurrence than anyone else was to get cancer, so pretty much put it behind me. My hysterectomy was at the end of 2014 and every year that passes means I'm less likely to get a recurrence so I don't really think about it now. We just have to make the best of every day.

I've been told that knee replacements are less likely to be successful because of the EDS, yet I know lots of EDS people have had them successfully. But I'm putting it off until there's nothing to lose.

[Barnclown in reply to Whatnext1]

🌟👍👌🍀😘

[LoopyLou72]

Only on a short break so will read your replies once home. Doctor has confirmed a bladder prolapse and it'll be discussed with a gynaecologist on the 10th May as I've already been referred for a hysterectomy. Xx

[Barnclown in reply to LoopyLou72]

Oh loopylou...am v much feeling for you...you've got a lot happening..I think you're being very brave. Please stay in touch with us 🍀🍀🍀🍀😘

[Whatnext1 in reply to LoopyLou72]

That sounds good that you know where you are with it, anyway. Keep us updated

[LoopyLou72]

Of course I will. I just feel that a lot could have been avoided if diagnosis wasn't so late and there was some aftercare after diagnosis. I've waited 10 months so far for a rheumatology appointment and waited 7 months for Gastro. Gynae has been the quickest. Urology has been ongoing for the last two years and the first surgery is due in July.

I would Just like to say thank you to you all for sharing your experiences and for all your advice. Collectively we could give the professionals a run for their money I'm sure.

Have a peaceful evening and try to rest up as much as you can. Xx

[Hidden]

Loophole, thank you for making the post and I hope you do well. I've learnt so much from other people's replies today. Take care. 'M'

[LoopyLou72 in reply to Hidden]

It's surprising how much we pick up and if it helps then all for the better. It's not the easiest thing to talk about but I feel safe here and with such a diverse condition it's great that we can all help each other. Lou. X

[Hidden in reply to Hidden]

Oh my goodness this darned machine typed loophole instead of loopyloo. I can't apologise enough to you!!!! 😡💐💐💐💐💐

[LoopyLou72]

Straining due to the ongoing bowel issues seems to be making the prolapse worse. It's now sitting right at the opening. If I don't strain to pass from the bowel then nothing at all comes out. I am in a lot of discomfort and getting up so much in the night means I'm wide awake by 5 so only having about 3-4hours broken sleep. I'm really struggling and need to strong and awake for wortvtomorrow. Xx

[LoopyLou72]

Just a little update. I contacted the bladder and bowel foundation as I thought they would be able to assist with advice as the doctors appear quite limited. This is there response:

Hello Louise

I think that the Ehlers-Danlos that you suffer from means that you are

probably quite a complicated case and I do think that this disorder probably

has some bearing on the fact that you now have a prolapse. I don't think

given the complexity of your different symptoms, I would be able to offer

any further advice on the prolapse. We can offer advice on recurrent UTIs

and this is available to our members in the form of factsheets and a

handbook on cystitis - you can join us to obtain this information.

I honestly give up!!!!!

Xxxx

[Hidden in reply to LoopyLou72]

My mother also suffered this for many years. Eventually she had a full hysterectomy plus her bladder and bowel put back in place. She said afterwards she wished she'd had it done earlier.

Hope you get sorted Lou. X🌺