Thirty-seven year old Jane (not her real name) who lives in the west of Ireland, developed interstitial cystitis (IC) 'out of the blue' almost a year ago.
IC differs from 'normal' cystitis or a kidney infection in that it is an inflammation of the bladder, causing very severe symptoms, and it is a chronic condition which is very difficult to live with.
The effects of IC include serious pelvic pain, frequently having to urinate, muscle spasms, and pain during intercourse
Regular cystitis, Jane explains, while a very troublesome condition, is a bacterial infection and is treatable by antibiotics or by other means such as drinking cranberry juice.
"With IC, the symptoms are with you much more regularly, you are effectively living with them most of the time, and it is much more difficult to find an effective treatment. IC has often been called a 'headache in the pelvis' which gives you some idea of the discomfort involved."
When Jane went to her GP the first time she experienced IC symptoms, she was given antibiotics for regular cystitis/kidney infection, but the urine test had shown she was clear of bacteria. "I was told to go home and drink cranberry juice. I think there may be a problem with some GPs misdiagnosing IC as regular cystitis."
The symptoms, unsurprisingly, did not go away.
"Three months later I was fed up and so debilitated with the frequent pain and the almost constant urinary frequency that I went to the emergency department in Galway."
"I was referred to a urologist. The urologist, after performing a cystoscopy, confirmed a diagnosis of IC."
While Jane was relieved to find out exactly what was wrong with her, she has so far had no luck in finding a treatment to ease her IC symptoms.
"My experience of the medical profession so far has largely been that they are not really too sure at this stage of how to actually treat the condition."
After diagnosis, I got treated with Cystistat, which acts as a temporary replacement for the bladder lining, providing a protective coating against irritants in the urine. Unfortunately, it did nothing for me."
Jane then went to another consultant and was prescribed Elmiron, which is used to treat the bladder discomfort and pain associated with IC.
"I ended up not taking it. I did some research on it and was doubtful if it would have really helped. Also, I was worried about the potential side effects listed."
Jane, has also been prescribed amitriptyline, which is an antidepressant but can also be used as pain medication "I have only just started taking it. So far it has not done any good but I will give it a chance."
"I think with IC, some treatments may work on some sufferers and not on others. I have not been lucky so far."
"Also, I've just started pelvic floor physiotherapy, and this has improved things a little."
IC can have a devastating effect on your everyday life.
Says Jane: "It can be really horrendous. I have a desk job, so I am relatively lucky that I have easy access to the bathroom for the urinary frequency. Other people with IC might not be so lucky in their work. However, during a flare-up, when all the symptoms such as pelvic pain and frequency get worse, sitting down all day can be difficult."
"During flare-ups, I can't travel in the car as the seatbelt is too uncomfortable to wear, and I can't plan long trips anywhere. It's just too much trouble."
Jane, who is married with one child, tries to keep abreast of new therapies and treatments being developed for IC, in the hope that eventually some sort of cure can be found.
In the US, a new therapy involving lidocaine, an anaesthetic, is being tested. "This involves implants into your bladder which are released over time but this is at an early stage and it is not known if it can be effective for IC sufferers."
Jane has tried homoeopathic treatments for her IC but has found that they did not work for her.
She says there are a lot of different theories about as to what causes IC. These include that it affects people who have high levels of acid in their system, that it is caused by some sort of allergic reaction or by a dysfunctional pelvic floor muscle, but really, very little seems to be known about it.
A big problem for IC sufferers is that there is no support group in Ireland at present.
Jane would be interested in hearing from other IC sufferers who might be interested informing a support group.
"IC sufferers would certainly benefit from having a formal support group. The condition is very debilitating and you can get quite depressed, so knowing there are others out there going through the same thing and who can support you and give you the benefit of their experiences would be very welcome.
"Also, such a support group would help raise awareness about the condition among the medical profession and the general public."
Meanwhile, there is a very active IC discussion forum on irishhealth.com
Discussions on this topic are now closed.