Chelsea

Age at interview: 44

Brief Outline:

Chelsea discussed her experiences with interstitial cystitis (also known as bladder pain syndrome, involving pelvic pain and problems peeing). She first developed urinary urgency with her first pregnancy and has been dealing with it ever since. She currently receives bladder instillations, which have made a "big difference".

Background:

Chelsea is married and has two teenage children. She keeps busy with parenting and volunteer work. Her ethnicity is White-British.

Condition: interstitial cystitis/bladder pain syndrome

More about me...

During her first pregnancy, Chelsea noticed that she needed the toilet much more often than before. She needed to use the toilet every 15 minutes and felt a continual ache in her bladder. She assumed this was part of pregnancy but found that it continued after having her baby. Chelsea went to see her GP, who "couldn't understand it", and prescribed her tablets. These were ineffective, and Chelsea's symptoms continued even after her second pregnancy. Chelsea did not seek medical advice as it had been unhelpful before.

Years later, Chelsea chose to pursue medical care again after not going to a destination wedding because of her urinary concerns. Her urogynaecologist performed an urodynamic analysis, and the test showed that Chelsea's bladder capacity wasn't the source of her symptoms. Following a cystoscopy, Chelsea was diagnosed with interstitial cystitis (also known as bladder pain syndrome, involving pelvic pain and problems peeing). Chelsea had previously never heard of the condition. Still, she found comfort in a diagnosis reflecting that "this is definitely what's wrong". She was a bit confused about the difference between her condition and standard cystitis but couldn't find much information about it online.

Doctors told Chelsea that bladder instillations were the only treatment for interstitial cystitis. While the instillations offer some relief, they cannot cure the condition. Chelsea says the instillations "make a big difference" in managing her discomfort. The medication is distilled into her bladder every few months, and after a few days, Chelsea's urinary urgency decreases.

Chelsea can contact the hospital directly by phone, which she finds "nice and straightforward". After six months, a new GP referral is required, which has at times been a "nightmare" to sort the paperwork for. Chelsea is concerned that her GP's office staff do not understand interstitial cystitis, as she gets "that feeling of having to describe your condition every time". The Covid-19 lockdown and understaffing of trained nurses have also made it difficult at times to receive treatment. Chelsea is currently able to receive her instillations routinely. While they are "not particularly pleasant", she considers them to be just "part of my life now".

Throughout her experience with interstitial cystitis, Chelsea has had to consider her bladder while going about her daily activities. Activities like working, going to the theatre, and singing in a choir became a source of anxiety as she found herself fixated on "looking for your exit route". Chelsea and her husband have delegated activities with their children based on her bladder needs. Her husband has been "very understanding", and her symptoms haven't caused significant problems to their relationship. Chelsea's children also understand her condition and keep an eye out for public toilets when they're in public.

Chelsea feels fortunate that she has been able to sleep through the night and that her symptoms fluctuate in severity. She has found that at times she can "work through" the ache and go for a few hours without needing the toilet. Chelsea is open to telling friends and acquaintances that she has a bladder condition. At the moment, Chelsea tries to find "balance" between living her life and dealing with her bladder issues. She does worry about how her interstitial cystitis will affect future events like her children's graduations but chooses not to dwell on this. Chelsea feels that there is "no point in just totally letting it control everything".

Chelsea would like to improve medical services through changes like having toilet facilities noted as an accessibility need. She has routinely had issues accessing toilets in public. She wants people to know those requesting toilet facilities may have health conditions. Chelsea discussed how "vital" nurses are to the overall system, and that understaffing can leave patients in avoidable discomfort. Chelsea encourages other people struggling with interstitial cystitis that "there are ways to find your way through it".

Chelsea explains how chronic UTIs became “part of our relationship” and never caused any problems between her and her husband who “accepts it and helps me through it”.

I mean he’s always been very understanding, I think it’s just that he is aware of it and that that, it’s one of these daft things, but it is part of our lives together I mean we’ve mean married for 21 and a half years and I’ve had this condition for 19 years, so ultimately, well obviously without knowing what it was half the time but ultimately it is, I think it’s hard to say but it’s part of our relationship it, it’s there and it’s, it’s everyday life. And so it’s never caused any problems between us, he just accepts it and helps me through it.
 
It doesn’t [affect my intimate relationship with my husband]. I mean occasionally if I’m having a really aching phase it means that we don’t have sex for a couple of days because I’m just not comfortable about it, but in general it doesn’t it’s, it’s great when it doesn’t actually affect that side of things most of the time.

 

Chelsea talks about difficulties with toilet access and waiting, for example, for a medical appointment or for a Covid-19 vaccine.

There’s been times when the kids were small when I’ve taken them for appointments and things and you’re left waiting and obviously if I’m turning up for an appointment for something I need the appointment to be on time because if I’ve sat there for a bit and then I need the toilet and I’m waiting to take the kids to a doctor’s appointment it’s, you know, what do I do, I can’t suddenly dash to the toilet while we’re waiting to be called.
 
The other challenge I’ve had with my bladder in the last year is, of course, during the Covid jab, I had real difficulty trying somewhere that I could guarantee there was a toilet to go to get my Covid jab. It wasn’t something that on any of the stuff where you were looking for, you know, tick a box for this, this and this and facilities you would like at the place, nothing which said I need to go where there’s a toilet because I have a medical condition.

 

Chelsea remembers her first bladder instillation vividly. She struggled to access the procedure during the Covid-19 pandemic.

I will always vividly remember the first time I went, the matron was lovely but she was one of those forceful people and she clearly imprinted in my mind her looking at me, kindly but fiercely going “Now, I want you to try to not go to the toilet for three hours after this, and the longer you leave it the better the effects will be afterwards” I think I managed two hours and I felt rather pleased with myself. But it’s funny, it’s funny what you remember of bits of the process, so I always see her in my mind’s eye whenever I’ve been back for treatment and I go out and try and achieve what she said and try to be the three hours if that just does the most good because the sooner you go to the toilet after receiving your flushing out from your bladder and so therefore it’s not in there as long and therefore can’t do as much good. So yes, so basically once they’ve put the stuff in they then just pull the catheter out and you’re left to get cleaned up on your own and then that’s the process done. The whole appointment generally is about 20, 25 minutes when I go.
 
Then since then I’ve been going for bladder instillation at the clinic at the local hospital and, and they originally did three treatments spaced at a sensible time frame and then after that it was a case of me phoning up when I wanted more. So initially that was every six months, I had got to the point where I was only really needing to go about once a year and then lockdown, my condition deteriorated a lot in 2020 because I didn’t know whether I was allowed to contact them to get more treatment in the midst of, you know, not wanting to bother the NHS or anything else like that.
 
I eventually managed to get hold of them in December 2020 and went back and started having treatment again. It’s taking a while for me to get back to my maintained levels of comfort and things which, I describe it as maintaining because I always have issues but when it’s well maintained its better. And they’ve actually changed the medication that they’re able to distil into my bladder as of four or five months ago to something stronger which actually really helped.