EDS and Bladder Failure

[EBashford]

Hi Everyone,

I had urodynamic tests today that showed that the nerves and muscles are doing nothing at all which explains why I haven't been able to pee without a catheter for the year. However, the consultant has said he doesn't know what to do about it because I have EDS. I was wondering if anyone has come across a consultant that specialises in EDS and bladder?

Best wishes

E

[Jay66]

No I am sorry. TBH I haven't yet met a specialist in EDS yet. Whereabouts are you?

[Hidden]

Are you in or near London? Mr Vik Khullar (St Mary's Hospital, Paddington) is the top man for EDS and urogynaecology. He also works privately.

[EBashford in reply to Hidden]

I live in the North East England but travel to London for specialists because my organs have began to fail, therefore it is time for major surgery and an EDS specialist is much more helpful than a "normal" specialist. Unfortunately, they just lack knowledge and therefore end up referring to EDS specialists in the end after a long time. I am trying to get knowledge of a uro specialist as my current urologist is now asking for details I can find because my bladder stopped working completely at the beginning of the year :).

Thank you so much for your help, will definitely be looking into this

[kschu58]

Hi EB, I'm sorry but I live in the US and do not even know of any specialists here. I am interested in this topic as I too experience "weak bladder" issues. (although not to the extent you are suffering). Lately much worse....lucky if I make it to the bathroom (loo) on time. Aging definitely is a factor, but I've had problems since age 10 and worked up multiple times etc.. I did have urodynamic tests about 4 years ago to test for tethered cord syndrome, but it was a waste because I had traveled over 500 miles for the appt only to find the doctor had to take the day off, and then I had a tech do the tests. But then, because the doctor did not do the tests himself would not write a report. I got some raw results in the mail but it was all inconclusive. I was not going to go back and in rethinking my symptoms, I decided I probably did not have tethered cord syndrome. But it would have been nice to get an idea on the functional status of my bladder......sorry for the diversion.

Anyway the real reason I am bothering you with all this information not related to your question, is I wonder why some EDSers have worse bladder functions than others? I know we all experience our own "special" illnesses in different ways. But I'm curious because I am always comparing my symptoms to my mother's. I'm 61 and my mother is 84, and she has had much worse symptoms than myself. (I just got off the phone with her and during a 20 minute call she had to excuse herself twice to "go".) She was never formally diagnosed with EDS, but I'm sure she is the affected parent. So, I am wondering how old you are, and if you had children? And if so, how many? Lastly, have you had any bladder prolapses? If you consider this too personal I understand. You can either decline or send me a friend request. The reason I am asking is for my own personal reasons. My mother had 3 bladder repair surgeries, starting from age 32. She had 2 healthy children, 2 miscarriages and 1 stillbirth. Doctors have always told her that her bladder prolapsed because of having children, but I suspect she has hEDS as I definitely have it. She lives in a rural area where health care is not great. She still has many problems, mostly unable to hold her urine, and recently a UTI which she has never had since I can remember. The UTI made her extremely ill, as they tend to when one gets older. She is still very active. I have never had my bladder prolapse and I have never had children. Which would make sense. I assume having children is a risk factor for bladder prolapses either w/ EDS or not, but would seem to be much worse with EDS, hence my mother needing 3 surgeries, when probably most without EDS, one would have sufficed. But just having EDS many people still end up with lax bladder muscles regardless of having children.

This probably sounds like a confused person wrote this as in re-reading it, I wonder if anyone will make any sense of it. I seem to have had an idea but did not express it very well.

Well, best to all, and hope you can find a uro-gyn specialist familiar w/ EDS. Although to be frank, I'm not sure what treatment would be recommended. I would be interested.

Thanks,

Karen

[Jk2833]

Hi I'm also in the north east UK and see a bladder/ bowel nurse for these issues, however I also see a professor at Durham for chronic constipation as my local hospital done some basic tests then just left me for 20 years with various laxatives and irrigation system. I have hypermobility and there seems to be a definite connection between the nerves that control our bladder and bowel. If you need anymore info message me and I will try to help you out

Take care

Jk

[EBashford]

Hi

I am 26, and because my bladder has no function and my gastric system means I can't eat food and have medical shakes and I don't poop for 7 weeks at a time, I have been told I will not be having children, as I couldn't carry a child. My immune system is shot, I have to use specialised crutches and a wheelchair. I was told I won't ever work again (I'm a phd student) because my health is too poorly effected as I have POTs as well and collapse every day. Me and my sister both have a diagnosis of EDS and we are completely different, her bladder is fine, where as mine is for a better word dead, it has zero function or nerve response. She doesn't have chronic constipation either.. it is strange as we are 23 and 26 but very different. We share many consultants and they find it fascinating how different we are!

I see a specialist in durham - Dr Yanakoo (I can't spell his name at all, I apologise!) He so far hasn't seen anything like my case so that's proving unhelpful for now, he's a neuro-gastro but doesn't specialise in EDS so again he's worried about doing something wrong, despite the fact I kind of live in hospital a lot of the time. I have been referred to Prof. Qaziz in London and we are in discussion to talk to Mr Vik (Thank you again for the advise from above). The issue I am having is that the issues are so extreme that I am a rare case of a rare condition and surgeons are worried about causing further damage because they don't understand EDS and in many cases surgery isn't a good idea. However, I don't have a life at all, and they just want to have a case like mine to follow guidelines from, however, we all know it doesn't quite work like that in EDS, because everyone is so different!

Thank you for all your continued advice and it is wonderful to talk to you all.

All the best,

Em