I’ve lived with this condition since my early twenties. I’m now 66.
I don’t know how much use my experience will be on this forum as my condition has not resulted from childbirth(!) but it is so useful to share with others who live with it daily.
Mine seemed to start as an anxiety thing in my final year of Uni. I began to find that I couldn’t sit through lectures without needing to rush to the loo and it became a sort of vicious circle. I had difficulty convincing my GP that I was suffering from some form of anxiety but he did prescribe tranquillisers, which didn’t really help. At the same time he got all the most likely causes checked out (diabetes, prostate enlargement for example) and all came back negative. I tried hypnosis, which concentrated on teaching me not to think about needing the loo whenever I was in a situation where it would be awkward, impossible or embarrassing to have to go. That didn’t work, although one thing the guy said that has always stuck with me was “Who is in charge of your life - you or your bladder? Decide that it’s you and you’re in the right mindset”.
A few years later I moved to a new area and registered with a new GP and I thought it would be worth seeing if he could help. As I thought it was an anxiety issue at that stage he referred me to a psychologist who taught me relaxation techniques and I did gain a little confidence from that therapy. However, nagging away at my mind was the thought that it must have some physical cause. So the GP referred me to St Peter and St Paul’s hospital in Covent Garden, which was London’s main Urological hospital, although it no longer exists. I had urodynamics tests, a cystoscopy and countless other tests that I can no longer remember and the conclusion was that I had an irritable bladder and small capacity. They offered me Helmstein’s procedure (which involves inserting a balloon into the bladder and inflating it so as to stretch the bladder), a small operation to disconnect the nerve endings of the bladder or a cystoplasty, whereby the capacity is physically increased by grafting on part of the bowel. I underwent the Helmstein’s procedure but it lasted for a few days only and things reverted to how they had been previously. I was then newly married and my wife was worried that surgery might affect my ability to have children so she and the rest of my family persuaded me not to have either of the other two options, but believe me I was ready to do anything to beat the nuisance of constantly needing to know where the nearest loo was. This was in 1977.
In the mid-1980s we moved to new area and another new GP. St Peter and St Paul’s had said that if I changed my mind I could always go back and reconsider surgery. I’d had 8 or so years of living with the condition and I also had two small children but it was getting me down again so my new GP referred me to St Peter and St Paul’s again. They said that nothing had really changed, except that they had found the operation to de-nervate the bladder wasn’t really successful (glad I didn’t have that then!) and that my only real option was the cystoplasty. This time I decided for myself that I couldn’t really go through with it so I resigned myself to living with the condition once again.
In 1999 I had the opportunity of touring Italy with the brass band my sons played in. The only drawback was that it would be by coach and one of my biggest no-no’s was coach journeys. I heard or read somewhere that drugs had been developed to deal with overactive bladder and similar conditions so I got myself referred to a Urologist at my local hospital. He carried out all the tests I’d had back in the 1970’s and couldn’t find anything untoward and prescribed a drug called Detrusitol. I can’t say that it did any good, but fortunately the coach had a loo so I did the tour of Italy and knowing that I could use the loo in an emergency helped reduce the number of times I did actually have to use it. After returning from the tour I continued to see the Urologist but he could only offer me the cystoplasty. He also said something that has stuck with me since. He said that without surgery we can’t cure your condition, you can only learn to manage it. And that it is what I have had to do. As mentioned by other posters, I limit my liquid intake as that is the only way I can reduce the need to pee but my GP doen’t like that approach as she advocates drinking a litre and a half of water daily. If I did that I might as well plumb myself into the loo permanently! As another poster said above, traffic jams are a nightmare and if I want to use the M25 I have to time it for when the traffic is likely to be at its lowest.
The condition has certainly dominated my life. Although I did gain a certain amount of confidence in certain situations, there are still others that fill me with fear or misgivings and there are some things I simply won’t do for fear of being taken short. I don’t know if my story has helped anybody, but it has been really good to write it down.