Ehlers-Danlos Support UK

Bladder prolapse and hypermobilty EDS

Hey everyone! I was just wondering if any of you suffer from bladder prolapse without having children as a result of EDS type 3? I was just wondering how common this is with other people. If you could just let me know if you have the same problem that would be great and thanks so much in advance!😊

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Hi, yes I too have Bladder Prolapse and do not have children. My problems started when I was 57. I was shocked when my Dr told me as that was the first thing I said about children but she said it was because of my EDS. I have to go for yearly checks and although it is progressively getting worse it is not yet bad enough for surgery -although with all the controversy over the Mesh which they have previously used, I am pleased it is not that advanced. l now suffer from urinary incontinence and have to wear pads - otherwise I get caught out by the usual laughing and sneezing. I think it's just another problem to add to the list of annoying co-morbidities that us EDS 'ers have to live with!

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Awww thanks so much for your reply! I wish you luck and I hope you can avoid having surgery.

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Thank you . Do you have this problem too?

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Yes I do. I’m 34 years old and have had bladder retention for over 10 years and my doctor acted like it was normal and never sent me to a specialist and then a year ago I was diagnosed with having eds and now I know that it wasn’t normal and just another commorbity. Mine isn’t to bad so hopefully I won’t need surgery as I just recently recovered from a spinal fusion I don’t want to have another surgery anytime soon 😔

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Oh right,it's amazing how Dr's sometimes 'ignore' symptoms or put them under an 'umbrella diagnosis'. It's hard enough to get Dr's to understand about EDS joint problems let alone all the co-morbidites that go with it. I'm sorry to hear you have had to have a Spinal Fusion, I hope you make a good recovery.

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Hi there,

I don't have a prolapsed bladder but I have a prolapsed womb which causes me multiple problems with my bladder. I have never had children so I guess it's due to my EDS.

It causes me to have multiple bladder issues where my womb is leaning on my bladder. I can experience terrible pain in my bladder if it gets too full and also bladder retention where I struggle to wee. Sometimes if my womb is very low, I can't wee at all.

The physio I saw about my prolapsed womb told me that it's because my womb puts pressure on my ureter and that this makes it difficult for me to release the wee. She explained that because my womb has dropped down, it has also made a kind of fold in my bladder and so there is now a kind of pocket in my bladder where wee gets trapped, kind of like having two bladders! She advised me to rock back and forth after I think I've finished weeing, as this would help to empty the wee from the trapped part of the bladder and she's right it works, although sometimes I have to rock several times!

My prolapsed womb can cause me terrible back and abdominal pain, where its pulling on everything, the lower it falls the worse the pain, so the longer I'm on my feet, or if I strain to do something, it will fall lower.

I try to do my pelvic floor exercises but with EDS I'm kind of flogging a dead horse as they say, my muscles are so weak and lax that I don't think my pelvic floor muscles have it in them to become any stronger!!

Oh the joys of living with EDS! 😬

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Thank you so much for the rocking back and forth top I will definitely use that! Sometime it may take me as long as 15 minutes to get my urine stream started but yet my bladder is so full it’s very frustrating and does not make any sense. And it won’t always empty and then I’ll have to go again a few minutes later then nothing barely even comes out. Agh lol

😏

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You're welcome!

Deep breathing also helps, you have to breathe deeply but from your diaphragm, so that the diaphragm itself is moving downwards into your lower abdomen, this also helps if you're constipated too, which I also suffer with, thanks to EDS.

I know exactly what you're going through re waiting ages to release your wee, it's so frustrating and can be very painful. I reckon it's either because you now have a mis-shapen bladder due to it being prolapsed, so it's now not in line with your urethra, or the bladder itself is pressing on your urethra, the tube from the bladder that we wee from! (I spelt it incorrectly above, ureter is the name of the two tubes from the kidneys to the bladder!)

My physio also said that if I can't release my wee then stand up off the toilet again because gravity will help to put things more in line, if that makes sense? When we're sitting down things inside are more cramped together.

I find myself trying to strain sometimes, in order to push the wee out but this only makes things worse because I then get a sore bladder, which just makes me feel like I need to wee even more!

Ahhhh😵

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I have to do this all the time for the last 6 months but I thought I just couldn’t wee because of the morphine I’m taking I to have to really push to get any out (sorry to much info) I hadn’t even thought that’s what could be causing it, I will have to look into this thank you.

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Morphine does cause urinary retention but it wasn't the cause of mine and I guess anyone with EDS should be checked for prolapse, if they are having bladder issues or abdominal and back pain that may be caused by a prolapse womb.

Its so difficult for those of us with EDS to know what to do to help with our prolapses. All surgery is risky because of our delicate tissue and I have read that even if you have your womb removed, you could then end up with everything else above the womb dropping down instead!

I would never have a foreign body put into me unless it was life and death and as Celio says the mesh they have used for bladder issues has caused so many women so much pain and suffering!

There is the cervical ring that can be inserted at the cervix but again it is a foreign body and can cause problems with infection etc, or there are the non permanent options available, that you can place inside yourself like pessaries, sponges and inflatable ball pessary etc.

I think I will try the non permanent pessary type devices first before I consider any type of surgery. If you Google vaginal pessaries you can find out about the different types available. "Stressnomore" also sell the battery powered pelvic floor exercisers. if you click on their menu button, then click on the 'pessary' link, they have a good selection of pessary type devices to look at and some of the pessaries have reviews you can read too.

When I looked into these pessaries, after reading a lot of information and reviews on the Web, I decided that I would try the "inflatoball" first, when I get to the point that I need more support down there! Can't wait for that!!! 😬

I have no idea why the size of the font changed half way through my post, hope you ladies have glasses or a magnifying glass at hand!! 😉

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Ok, when I posted the comment, the font is now the same size for the entire post, the second half was tiny when I was typing it, must have done something on my phone when typing I suppose?!! 🤔

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I’ve got a lot of problems with my womb and overies anyway lol it’s just joyful being a women isn’t it.

Yeah hun I would definitely explore all non permanent roads first and stay away from the mesh , it’s awful I feel for the people who have had to have that :(

Thank you for that information x

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Your welcome😀

Re the mesh and other foreign body implants, I am speaking from experience. Due to having multiple DVTs and pulmonary embolisms, I had an IVC Filter (Clot Catcher) implanted in my main abdominal vein in 2005.

I finally had it removed twelve years later last November, following the discovery of multiple complications. The filter was supposed to sit inside the vein however it had eroded through my vein at the bottom so that it was sitting outside the vein, the top apex was completely embedded into my vein. It was encased in scar tissue and full of blood clot and it was so covered by scar tissue that it had blocked the returning blood from my lower abdomen and legs getting back to my heart!

The surgeon who removed it told me that it was the worse case of filter erosion, embedding, scarring and clotting he had ever seen. What should have been a two hour operation took five hours and I have been left with varicose and incompetent veins in my legs, due to the returning blood flow being so blocked for so long.

I suffered for years with abdominal and leg pain and swelling and even though its now been removed, I am still suffering with abdominal and leg pain, due to the scar tissue in my abdomen and the now damaged veins in my legs.

In the USA there are millions of law suits due to the damage that the IVC Filters have caused but not so much in the UK. It's like the mesh they have used for bladder issues, when they used to put IVC Filters in, they did so without knowing what the long term complications would be.

Its appalling that we are used as guinea pigs for these implanted devices!

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Yep, that would be me too! Uterus sagging too! There are treatments to be had but problems with the mesh one has resulted in massive law suits so I’m trying other methods for now.

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