A move in the right direction

I decided to post this here because I thoght it might be useful to share my story with others who have for years been suffering the same thing as me but had no idea why. I'll start from the beginning because that's where it always starts.

Since I was a kid I've had troubles with my bladder function. I "always" had to go and when I did, I had to go immediately or there would be trouble. I guess it drove the rest of my family nuts. Long car drives made me nervous because I knew I'd have to stop frequently and that was always going to make the driver (usually my father) mad. I wet the bed until I was about 9 - that drive my mother mad. I think I heard the words "can't you just hold on" more times than I heard anything else.

I recall my mother taking me to the GP back when I was young. His solution back then was to restrict fluids after a certain time of day. That was the only answer they had and of course it didn't work.

As I entered adult hood it started to really drive me nuts. Going to the pub for a few drinks with friends was often embarrassing because I'd have to rush off to pee every few minutes. They noticed and would say "but didn't you just go?". Sometimes I'd make up excuses and say that I wanted to go wash my hands or something because I didn't want them to know I had to pee - again!

Many doctors just told me to do more pelvic floor exercises. That would be the answer.

After giving birth to Maya at about age 24 I decided that I had had enough. It was starting to affect my life in too many ways. At that time we lived 45 minutes from town and I couldn't make the trip without having to stop several times to pee. I moved to the city and it was then I decided to seek real help. I saw a lovely GP - an elderly man who was gentle and kind and the first one to really listen to what I had to say. He told me what I was experiencing was not normal, especially since it had been going on since childhood. He prescribed a mild anti-depressant type drug designed to stop the bladder muscle from over reacting all the time. It didn't work. He then referred me to a urologist who ordered a battery of uncomfortable urodymanic tests. They didn't really find any dysfunction but said it was overactive bladder anyway. I think it made them feel better. I was referred to a physiotherapist for treatment and a bladder retraining program. It didn't help.

A few more years went by and it progressively got worse so I on advice from a friend nurse who worked at a women's health network I sought a referral to another urologist who is a supposed "guru" in urogynaecology. She told me to beware though because a lot of women found him frightfully attractive. I found him frightfully arrogant, even at my first appointment. He sat across from me, yawned, placed his hands behind his head and said "so why do you go to the toilet so often?". I told him that I hoped he could tell me that as he was the specialist after all. He of course told me I was over-exaggerating my problems and referred me to another physiotherapist.


I tried it but it didn't help. I stopped going. I then gave birth to Henry, his birth was long and tiring. My bladder function didnt' really change but I was left with other issues so again asked my GP for a referral to a specialist for those. She referred me to the same urogaenacologist. I didn't hold out much hope but as he was supposedly the "guru" I decided to go along with it. His registrar, a young female, told me I should have surgery as soon as possible because it must be horrible for my husband to put up with. Of course I told her my husband and his sex life were the least of my concerns. It was my body we were talking about and I would have to think long and hard before having any surgery which had a lot of complications but was essentially cosmetic. I've never had the surgery but eventually she left and I continued to keep my appointments with the "guru" about my bladder issues. He wanted me to try more physio, more drugs designed to control overactive bladder but which had horrid side effects.

So after years of seeing him I was no closer to a solution. At my last visit, just over a month ago, he told me that my problems were basically my imagination and that normally someone with my issues would have a nuerological disorder and it was pretty obvious to him that I didn't have one of those. He asked me to trial another drug and stop all caffeine and alcohol for a month because that was his final miracle cure.

As the drugs he wanted me to try were $50 a month I decided to check them out thoroughly before trying them. After reading all about their side effects I decided against it.

Now it so happens that in my new job I work with a paediatrician. I happened to be bitching about the urogaenacologist I've been seeing to another work colleague and she overheard me. She asked me to tell her about my problems. When I had finished she asked me if I'd ever had a spinal MRI because children with my symptoms would normally have a defect. Of course I had not. She wrote me a referral, just to rule out any neurological defects.

I had that MRI last week and the results explain my lifetime of bladder function issues. It also explains the sciatic pain and tingling through my legs and feet.

I have a tethered spinal cord, a Tarlov cyst and a spinal lipoma. All of these things individually cause, among other things, bladder and bowel dysfunction. Together they cause many issues. This would also explain the pain in my lower back/tail bone area, the sciatic pain I've suffered with for years and the tingling/numbness I often feel in my legs and feet. I always believed these other symptoms to be merely an effect of ageing and childbirth and bending and just plain living.

Mor to come...but until then, don't ignore your child's toilet issues if you feel they'r serious.