Anita
Anita struggled with cystitis (inflammation of the bladder, usually caused by a bladder infection) from her early twenties into her early thirties. She found that the condition was “debilitating” and kept her from enjoying life. After undergoing urethral dilation twice, her bladder issues have nearly resolved.
Anita is a retired IT manager who lives with her husband and has a grown up child. Anita describes herself as White British.
Condition: cystitis/UTI
More about me...
Anita started experiencing cystitis (inflammation of the bladder, usually caused by a bladder infection) in her early twenties while attending university. At the time, she did was unaware of what cystitis was and wondered “what on earth was going on”. Over the coming years, she repeatedly saw GPs and provided urine samples, but was not offered any long-term solutions. Anita stopped receiving antibiotics after repeatedly testing negative for infection.
At one GP appointment, Anita was told that urinary infections were often associated with sexual intercourse, which she found “very off-putting”. Based on the timeline of her cystitis onset, Anita thinks the condition “definitely coincided” with becoming sexually active. Up until her early thirties, she dealt with bouts of infection, which she felt she had to “put up” with. She managed her condition through drinking water, taking potassium citrate, and abstaining from sex, but continued to have regular flare ups.
In her early thirties, Anita met with a female GP who was “very helpful” and recommended she see a urologist. The urology consultant conducted tests and concluded that Anita had a sensitive urethra. She underwent a urethral dilation, using forceps, to resolve this. Anita was left “in agony” directly after the procedure and didn’t feel that it helped her cystitis.
Anita was later referred to a different consultant, who seemed taken aback by the method used by the previous urologist. This time, she underwent a gradual dilation with cones, which successfully resolved Anita’s cystitis. Since the dilation, she has rarely had bladder issues and she suspects that these have been bacterial. Looking back, Anita feels “horrified that it took 12 or more years to resolve that”.
During her time managing cystitis, Anita felt that the threat of a flare up was like a “Sword of Damocles hanging over me”. Anita found that cystitis limited her “general enjoyment” of life and “destroyed” planned activities. Cystitis also caused issues at work, as she felt co-workers might think she was making excuses to call in sick. Anita has found sympathy and comfort in discussing urinary issues with her friends, many of whom have had similar experiences.
In her married life, anxiety around cystitis made Anita tense up and meant that she “stopped enjoying sex”. At the time, she felt that it was unfair to both her and her husband, as sex became more “just something that was part of the marriage deal”. Anita believes that her cystitis was a “significant factor” in her first marriage ending.
Anita wants healthcare professionals to be aware of how “debilitating” cystitis can be and to not dismiss it as a mild syndrome. She found that the onset of cystitis “fills your brain up” and made doing anything “extremely painful”. In some meetings with doctors, she felt the condition wasn’t taken seriously, and that it was treated as a condition that women just had to live with. She feels that doctors should receive more education on women’s health issues. To women in similar situations, Anita emphasises that they should be persistent in seeking out the care they need.
A GP told Anita that her cystitis was “one of those problems with women’s plumbing”, which she felt was not very helpful.
A GP told Anita that her cystitis was “one of those problems with women’s plumbing”, which she felt was not very helpful.
Okay I started experiencing cystitis very regularly when I was about oh twenty, twenty or so and I went to see my GP, I was at university at the time and. I I can’t remember exactly but I I think they gave me some antibiotics or something. I I also, as the years went by, it, I got it more, you know, very regularly and then at some point somebody said to me, a GP said to me that it was often associated with intercourse. Then I sort of had a think about it and realised that that’s when I started being sexually active and that what’s when around about 20 and they definitely coincided and I found that very off-putting once I realised and also I knew that there was always the risk that I would have a period of cystitis which is very debilitating in the sense that your, you become unable to leave home or go far from a loo and it’s very uncomfortable and worrying and at some point I was asked to do mid-stream sterile urine samples and there was never really any indication of any bacterial infection.
So it was all a bit of a, bit of a problem really and nobody really suggested any, any solution that I would have just have to put up with it and in fact one GP I remember it clearly said to me, “Oh, you know, it’s one of those problems with women’s plumbing, it’s, it’s not a very good system” and I thought, ‘Oh that’s a [laughs] that’s a rather, a really helpful thing to say.’ And so from about the age of 20 until my mid-thirties or perhaps early thirties actually, I just had this recurrent problem and it didn’t, didn’t do anything very good for my married life because I got married when I was 25 and it made at times, made my life un unpleasant.
Anita had two rounds of urethral dilatation: the first with forceps was unsuccessful and the second with cones was. She was delighted that it resolved her cystitis symptoms but felt “horrified” it had taken so long to get treatment.
Anita had two rounds of urethral dilatation: the first with forceps was unsuccessful and the second with cones was. She was delighted that it resolved her cystitis symptoms but felt “horrified” it had taken so long to get treatment.
Finally, in my early thirties, at some point, 32, 33, something like that I saw a female GP who and talked about it and she was very helpful actually and then I saw her a lot after that but she said, ‘Oh you need to go and see a urologist,” and so she booked me into see a consultant and I was tested and discovered to have a a sensitive urethra I think the word, words were and that they could resolve that with a dilatation and so I said, ‘Oh yeah, fine, let’s go ahead with that.”
And so just booked in for a day case and had the, had the procedure under general anaesthetic and was in agony afterwards and it didn’t really solve the problem. So my, I was referred once again and saw a different consultant or group of people anyway and they re-, they said they would do the procedure again but this, but it transpired that the first procedure was done with it was a single stretch with a pair of forceps but they would use in the second time a sort of gradual dilation with cones under general anaesthetic again and actually that that that sorted it actually. That completely resolved the issue I hardly ever, I hardly ever had cystitis since and if I have it’s often been, it’s been well bacterial infection I’m pretty sure and I’m just so horrified that it took 12 or more years to resolve that.