Bladder problems in hEDS and Tips how to manage them

Bladder Dysfunction can affect anyone at any age but those with hEDS seem to be more susceptible, possibly due to differences in the anatomy of the urinary tract and pelvis and the tissues being more stretchy and if you have bowel problems too, this can put more strain on the bladder.
Everyone is different when it comes to symptoms experienced but may include any or all of the following.

Symptoms you may experience:

  • Urgency -desperate need to pass urine
  • Frequency -needing to pass urine on a number of occasions throughout the day 
  • Nocturia -needing to pass urine at night
  • Pelvic discomfort/pain
  • Over-active bladder -related to neuromuscular instability of the bladder wall and controlling sphincter muscles
  • Stress or urgency incontinence of urine
If you do suffer from these symptoms there are simple tips that may help manage them better. Don't be embarrassed about seeking help for these problems, as there are treatments that can help. 

Tips for Management:

  • Keep your Bladder and Bowels healthy
A common mistake made is to reduce your fluid intake as this only makes things worse with too little fluid causing more concentrated urine, irritating the bladder, leading to frequency and urgency problems. 

  • Aim for urine to be a pale straw colour.  
  • Certain foods and drinks can irritate the bladder, if you suffer with frequency and urgency then it may be worth looking at what you are consuming.
  • Consume about 2 litres of fluids daily, more than this can irritate the bladder, try to have small amounts through the day rather than a big drink all at once.
  • Retrain your bladder - When you have an Over-Active bladder, you go to the toilet too frequently, even with the slightest urge to avoid being 'caught-short. This allows the bladder to develop bad habits by sending messages to your brain, telling it that it is full when it isn't. Bladder retraining helps the bladder to hold more urine by slowly stretching it. You will need to persevere as it does take time. 
  • Keep a record of what you drink, how often and how much you pass urine. 
  • When you have the urge remember to:
  1. Keep calm - don't panic
  2. Distract yourself
  3. Try not to focus on the need to empty your bladder
  4. Sit on a hard surface
  5. stand still with legs crossed or squeeze buttocks
  6. Squeeze pelvic floor  
  • Drug therapies -if you suffer with Over-Active Bladder
  • Botox injections -for those with intractable over muscle activity 
This information came from the HMSA website.

I first became aware that something may be wrong in 2014 when I was on a Pain Management Programme, this was also just after being diagnosed with hEDS. I didn't really think much of it at first so didn't tell anyone, as it is embarrassing as an adult to be soaking wet because you didn't get to the toilet on time. I just carried on as normal so no-one knew.

In the last year things have become much worse with many more urgent episodes and more leaks, it is very embarrassing especially as friends and family members have had to help change me at times. I don't always know when I need to go until last minute, which is not good and have had to buy a bedpan as I am not always able to make it on the commode in time. I only really leave the house for medical appointments so it is not too much of a problem about being caught short while out and about as I use Incontinence pads, they are like big nappies which you pull up. I don't find them very comfortable but they do what they are meant to. I only wear them if absolutely necessary on long journey's where accessing toilets would be difficult.

 I decided last year I would get some help for this problem as it was not only embarrassing but was getting me down too. I watched a fantastic video on the Ehlers Danlos Website about the bladder by Professor Khullar and I asked my lovely G.P to refer me to him. I expected to wait months for an appointment but it was only 3 months as I was referred as urgent. I had to go to St Mary's Hospital for the appointment but it was really worth it as he was so kind and empathic with a lovely bedside manner, which put you at ease straight away, especially as it is an embarrassing issue. He asked me lots of questions and wanted to see my bladder diary, which I had been keeping for 1 month, he could see I wasn't peeing much during the day but I wasn't consuming lots of fluids either. He seemed a bit concerned about this. Due to my Bowel problems as well he said he would like me to go on a 12 week course of Symprove, a probiotic that can be given via my PEG-J, to help balance the gut bacteria as he thinks I have inflammation in my body, it is not available on the NHS unfortunately, so I need to fund it and also to take 2 different medications to reduce Mast Cells, which cause inflammation. He arranged for me to have a Bladder Cystoscopy to see how the bladder looks and check for any infections that can be treated and Urodynamic tests, to see how my bladder empties. I came away feeling very positive and that he genuinely wants to help me but he stressed it would take a while to sort everything out. He described it as it is like your body has had a car crash and now it needs to be sorted from different angles, this made a lot of sense.
If you are suffering from similar problems, Don't Suffer, get a referral as there are things that can help.

toilet, loo

I will let you know how the scan and tests go in another post.       
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  1. Great article - encouraging to know you can retrain it in time!

  2. very very well done for talking about bladder problems.I, HAVE BOTH BLADDER AND BOWEL PROBLEMS long list health issues m.e .migraines i take part in a lot lot
    research .Most People are very Snotty Nosed about these issues .people never see
    the every day efffects.i do a blog.http;//mark-kent.webs.com

    1. Thank you Mark for commenting. I suffer with bowels too. I think more people should talk about these problems as you shouldn't feel embarrassed.

  3. Thanks and keep sharing such valuable updates through your side.
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  4. very very Shitty and Soaking wet .i have too wear ADULT Nappies .i am not afraid too say or talk about it .PEOPLE MAKE IT EMBARRASING .how would People cope/deal with this 7 days a week
    i am on twitter,supersnopper


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  6. Great post. To cure bladder infection drinking lots of water can helps a lot and taking urinary infection supplements also effective to cure it.