By Allie on Thursday, January 18, 2001 - 02:40 pm:

There are so many symptoms associated with HMS/EDS that I thought I would throw another conundrum into the pot! I increasingly need to pass urine more often as I find it hard to control the urge to pee - it's like I don't have good pelvic floor tone. I wonder if this is related to my HMS, especially as it becomes most problematic premenstrually when my joints go into orbit!

By Ros on Friday, January 19, 2001 - 10:17 am:

Hi Allie I have the same problem. I don't know if it is caused by HMS but I do know that it is really anoying especialy when your friends take piss out of you going to the toilet all the time. if you find out that it is let me know

By Bianca on Sunday, January 21, 2001 - 01:55 am:

I have this problem, too, but was never connecting it to HMS. I solve it in drinking only samll amounts or milk, because milk finds its way not so quickly through my body. I know that it is unhealthy, but...
Premenstrually it may be a problem not of HMS but of the hormones, because premenstrually Oestrogen level drops down very quickly and so all the water in your tissue is mobilized into your circulation and comes out of your body. Often you can see this also on weight scales. During the first three days of menstruation I always loose a kilogram of weight and I often drink nothing on the first day of menstruatiopa but have a lot of urine.
What concerns my friends we often take it by humour, because everybody knows, when you are looking for the toilet, ask Bianca, because she always knows where it is.

By Patty on Tuesday, January 23, 2001 - 07:17 pm:

I, too, have this problem, but I focus on drinking a lot of water because it really does help my pain control. My daughter teases me about having the smallest bladder of anyone she knows. I asked the doc about it and he gave me a med that helps a lot when I have to be out and around. It allows me to at least find the toilets without a trickle down the leg! Mine started when I was 32, so even tho I am now 49 and had a hysterectomy (because of the very heavy flow for up to 15 days a month), I don't think either of those has anything to do with it.

By Gwen on Saturday, January 27, 2001 - 11:08 pm:

There are different reasons why people (O.K, women, as it's mostly our problem) need to go to the toilet frequently. It can be simply a habit. Many of us have been trained from childhood to "go just in case". The bladder is a muscular bag (detrusor muscle) and like any other muscle contracts. This is how you pee. The sphincter muscle around your urethra relaxes and the detrusor contracts, forcing out the urine. A healthy bladder is able to comfortably hold around 400mls or 2 and a half cups of urine and the person should not be aware of a need to go to the toilet until the bladder is half full but can hang on until longer if need be. Normally the detrusor doesn't contract until you are ready to go to the toilet but due to various reasons may start to contract as filling commences making you feel you need to go but only passing small amounts when you get there. It is possible to retrain your bladder by holding on and lengthening the period between toilet visits. Many women do find that the pre-menstrual period is a time when they need to pass urine more often but some women experience fluid retention at that time so this is a natural result. As a rule two swollen ankles equal one full bladder.
Patty, you say you have been having problems since you were 32. It could possibly be a result of poor pelvic floor muscle strength as a result of childbirth. Also, if you have had a hysterectomy it is possible you may also have pelvic nerve damage secondary to that also. If you'd like to contact me privately I may be able to help you. I am a registered nurse and last year qualified as a continence therapist.
I have discussed urinary incontinence with several of my women friends with HMS. We all seem to have it to some degree and/ or pelvic organ prolapse which may be a result of lax ligaments which fail to hold uterus, bladder etc in place. Consequently we need to build up our muscle strength in that area to compensate. Come to that all women should do their pelvic floor exercises daily from their teens onwards.

By Phyllis on Sunday, January 28, 2001 - 08:21 am:

Gwen,
Thanks for the advice. However, I too am a registered nurse and, having had urodynamic studies, know my problem is not one of bladder instability. In spite of antispasmodics and bladder drill my incontinence remains; indeed it is more a sense of not having enough pelvic strength although I do pelvic floors (I have never had children and my diagnosis is EDS) - any other suggestions would be greatly appreciated!
Phyllis

By Gwen on Sunday, January 28, 2001 - 11:51 am:

Hi Phyllis, Great that you do pelvic floor exercises but one of the things I've become aware of is that it is possible to think you are doing them but in fact tightening buttocks, thighs, abs and facial muscles -anything except the pelvic floor itself. A good way of checking that you are using the right muscles is to either stop your urine flow midstream (not a thing to keep doing as continued stopping can lead to another set of problems) or to insert a tampon part way and see if you can pull it up and push it down with your pelvic floor. Or you could insert a finger into your vagina and tighten the muscles around it. It should feel like a ring. Have you tried using vaginal weights or Geisha Balls. You'll know soon enough with them whether you are using the correct muscles!
If you've had urodynamic studies I assume you don't have a descending bladder neck or a cystocele or other abnormalities. You might try wearing a tampon if you are doing anything active. Sometimes that is enough to provide urethral support. Have you had urethral plugs suggested? Basically a cork for your urethra to stop leakage. Oestrogen cream around the area sometimes helps and for some women taking oral pseudo-ephedrine helps if it is stress incontinence.
Another alternative to consider is neuro-muscular stimulation using electrodes,which needs to be done by a continence therapist, either nurse specialist or trained physiotherapist
How long since your urodynamics? Maybe a trip to a continence clinic if you haven't been to one (rather than a urologist) as there are many gadgets available that may help you.
Good luck

By Tyra on Saturday, February 03, 2001 - 02:02 pm:

I have been diagnosed with EDS and I also have problems with my bladder, couldnīt the problem have to do with the fact that most people with EDS have weak musclestrengh? I just thought that it might be that the abdomen put too much pressure on the bladder and the muscles in the stomach are too weak to give enough support...

By Gwen on Monday, February 05, 2001 - 08:21 pm:

This is certainly a contributing factor. Weak muscles in the pelvic area mean that the bladder, uterus etc aren't well supported and any pressure in the abdomen such as generated by coughing, sneezes, exercise or constipation puts pressure on them and they bulge downwards If the outlet pressure is less than the internal pressure in the bladder then-whoops! This is why it is important to do pelvic floor exercises and make sure they are done correctly, especially if, as we HMSers do, you have sloppy ligaments holding the pelvic organs in place. By keeping your pelvic floor in good working order you are less likely to have incontinence, prolapse or any of the other conditions we girls are prone to.

By C.Stewart on Monday, March 19, 2001 - 11:18 am:

I am a 21yr old female and today my rheumatologist told me I have hypermobility. I was a dancer for 13 yrs and just thought I was more supple than my peers, now it all makes sense.
What I would like to say is that for 3yrs now I have had severe bladder problems, for example, if I drink after 8pm I will be sure to go to the toilet at least 3 times overnight. I recently had a cystoscopy which showed acute inflammation due to persistant urine infections. Could they both be related in any way?

By Gwen on Monday, March 19, 2001 - 06:11 pm:

The most common bladder problems related to HMS are stress incontinence where you leak with exercise, sneezing etc. and cystocele (prolapse) The relationship between your polynocturia (getting up at night) and inflammation is most likely that persistent infections have made the lining of your bladder hypersensitive and cause the bladder to contract when it is filling rather than when it is full. How large an amount do you pass at night? If it is only a small amount each time try and ignore the urge to go or at least put it off for a while. If you get up each time you will only be encouraging your bladder in what has become a bad habit. Someone of your age should be able to sleep through the night without being woken by your bladder. It is only when people get into their 60s and 70s that waking at night becomes the norm.
You could try drinking cranberry juice (Ocean Spray is the best because it doesn't have added sugar) which is proven to help fight urinary infections. If you don't like the juice, capsules are available. What is important is not to cut down on the amount you drink as many people do in the mistaken belief that less in means less out. All that happens is that your urine becomes more concentrated and irritates your bladder more. You should aim for between 1 and 1.5l of fluid a day.
It is also important to make sure that you aren't being reinfected. Such things as making sure you only wipe from front to back and pass urine before and after sex are ways to lessen the chance.
If the symptoms persist keep going back to your urologist. Also run a search for interstitial cystitis which is a chronic pelvic inflammatory condition and check that out.
No fun feeling as if you are peeing barbed wire is it?

By MichelleT on Monday, March 19, 2001 - 08:55 pm:

I take 2 cranberry pills every night with water, because I am prone to bladder infections. These pills really help. I also make sure that after a workout, I shower and change into dry clothing as soon as possible-- and I always wear cotton underwear. Some people are just more susceptible to bladder infections. They may have a shorter urethra or just a different ph environment in their bladder which allows bacteria to grow more.

By Patty on Monday, March 26, 2001 - 06:19 am:

Gwen, I haven't been ignoring your offer, I just can't get my private notes to you to send along with being extrememly busy, in and out of town. I would be interested in communicating with you about my bladder problems.

By angie on Wednesday, August 22, 2001 - 09:53 am:

I was wondering if any one has heard of this problem in boys? my son is 4 years old and was diagnosed with BJHS and hypotonicity when he was 18 months old, it seems that he doesn't have the ablility to "hold it" also it seems that he doesn't realize when he is urinating, only after when he feels wet does he realize. Any suggestions or advice?

By gilly on Thursday, January 31, 2002 - 04:38 pm:

I saw a urologist a year before being diagnosed with HMS.I put my incontinence down to the menopause but now i am not so sure, he said my pelvic floor had brilliant control and I had all the urodynamics etc with nothing found. I do not get frequency, quite the opposite I rarely go but I get problems with urine trickling out in quite large amounts with no notice, even when I have just been, it seems worse when I go out dancing etc but can just happen when I am standing or sitting.The strange thing is it might not happen for weeks then will happen constantly. I feel like I am a fraud going to see the Consultant or GP so just get on with it now.
Gill

By Lori G on Wednesday, February 05, 2003 - 05:43 pm:

I took my son to a genetic counselor for possible Marfan's syndrome(jury is still out.....though leaning more towards "no"). We have a family history, male and female, of bladder infections and problems. We were told that it is a sign of a faulty connective tissue gene. We also tend to have hypermobile joints, though that is something I am still just learning about. Hope this helps in some small way. Aloha, Lori