Megan
Megan is living with diagnoses of chronic urinary tract infections (UTIs) and painful bladder syndrome (interstitial cystitis). She has undergone many tests and procedures. She is considering bladder removal as a last resort but is currently looking into other treatment options.
Megan is a nurse, but is currently on sick leave to manage her urogynaecological conditions. She lives with her partner in England.
Conditions: chronic UTI, painful bladder syndrome
More about me...
Megan has been experiencing bladder issues for three years. Her issues originally started off as a “normal UTI”, but after taking a three-day course of antibiotics it “still didn’t feel right”. Later in the week Megan felt a sharp pain in her bladder, which led her to return to the walk-in centre. Although the additional antibiotics left her still not feeling quite right, she returned to living normally and thought that her bladder would be okay. On a birthday trip to the spa with her partner, her bladder began spasming and she had “horrendous” pain. After another failed course of antibiotics, Megan said, “It kind of just spiralled like from there”.
Later Megan met with her GP, who suggested her problems were gynaecological because she was a “bit young” to be having bladder issues. She continued to take rounds of antibiotics and painkillers. Even with these, Megan found herself in too much pain to be able to and carry on her duties as a nurse. Gynaecological causes were eventually ruled out, and Megan was referred to an urologist. The urologist put her on a medication to relax her bladder muscles and she underwent tests to check the state of her bladder. A cystoscopy did not reveal any issues, although it did confirm that she was struggling to empty her bladder. Megan got another infection from the cystoscopy, but after this things began to “settle down” and her discomfort felt a bit more manageable.
Eventually, the pain picked back up, leaving Megan bed bound and unable to work. In 2019 she was diagnosed with painful bladder syndrome, and began undertaking bladder installations (injections into the bladder of sodium hyaluronate solution) and self-catheterising. In some cases, Megan found that medications made her pain worse. Megan describes a process of “trial and error” of finding the treatment that worked for her. She has found some pain relief through acupuncture and avoiding tap water.
Megan was told by her NHS care provider that the next course of treatment would be bladder removal. She was initially shocked by this suggestion, but now considers this a “last option” if other treatments don’t work. Megan started paying for private care and seeking out other options. One option is bladder fulguration (an operation that uses heat to destroy abnormal tissue) surgery abroad. Megan has heard about this procedure helping other women but knows that this procedure is not recommended by her UK-based physicians.
Megan’s pain makes it difficult to do daily activities like sitting on hard chairs, being in a car, or walking. It has been difficult for Megan to not be able to go to work, as she loved her job as a nurse and wishes she could be in to help during the Covid-19 pandemic. She describes the mental toll that her condition has taken, with chronic pain keeping her from her previous active lifestyle and leading her to fear that she has “got to live like this forever”. She is cautious about going out with friends because she doesn’t know when her pain will be set off.
Megan tries to fill her time with seeing friends and family at home, and stresses how important it is to talk to people to feel less alone. She has received support from others with similar conditions, who she met through her physiotherapist’s referral and online support groups. She believes that this experience has made her relationship with her partner “stronger”, as they have been able to enjoy their time together without the usual routines of domestic life and intimacy.
In the past, Megan has had issues with healthcare professionals not understanding her condition, causing her and others to wonder if it’s “all in your head”. While she experienced some doubt, she feels that “you know deep down, you know your own body, you know there’s something not right”. Looking back, she feels that she should have been more assertive with healthcare professionals to demand that something be done. She feels lucky to have so much support, and hopes to be able to help others in similar situations, reflecting that “without that support I don’t know how people go through this”.
Bladder pain is Megan’s main ongoing symptom. She takes medication which helps with the urgency and frequency of needing to wee.
Bladder pain is Megan’s main ongoing symptom. She takes medication which helps with the urgency and frequency of needing to wee.
So the painful bladder syndrome and the interstitial cystitis that they diagnose you with, it’s like kind of like inflammation in your bladder they say, so it’s kind of like having a UTI all the time. Like obviously you like have the pain, the frequency, the urgency, but it’s a bit more extreme than it normally is when you have a UTI. And it’s constant, so it’s just like having to go to the toilet a lot, but my pain has been my main symptom, like I can’t seem to control it very well. That’s what the main problem’s been, and the frequency and urgency helps with medication, but it just seems to be the pain we can’t get like on top of.
Since having problems with UTIs, Megan finds planning ahead is difficult. She worries about being in pain and the impact on social events, explaining that “you just don’t want to spoil it for other people.”
Since having problems with UTIs, Megan finds planning ahead is difficult. She worries about being in pain and the impact on social events, explaining that “you just don’t want to spoil it for other people.”
So I just kind of, I never plan anything, so each day I just see how I am to see what I can do. But the furthest I do is probably go like around the shop, for food shopping or just for like a little shop. That’s all really. Or go ‘round to see like family and just sit in their house and stuff. But a lot of the time I just stay at home, but like I fill the week, my partner’s at work so I do try and go down to me parents’ house, so I’m not on me own all day, and they come and see me and stuff, so I’m not sitting around all day.
So I try and do that every day when I can, but sometimes when I’m there the pain gets so bad that I get stuck there. So sometimes I can’t get back home ‘cos I can’t get in the car. So I just like sometimes get stuck there for like five days to a week, and one time it was like two months I was there, ‘cos I just really couldn’t get out of the house at all, ‘cos it went into like to a horrendous flare up. So I just couldn’t do anything at all. I’m scared to go out for meals or anything, I don’t go out for meals or nothing like that now because I don’t know what the chair situation is like or anything like that, and I, it’s silly but when you go out with people, like if you went out for someone’s birthday or something like that, or, you just don’t want to spoil it for other people because you think like if it starts, like I’m going to be in pain and then like obviously someone’ll come with us when I leave and stuff, and I don’t want to like spoil their day and stuff, so I kind of just say “Oh I’ll like not really come today.”
Megan is a nurse currently on a “career break”, but she hopes to return to work soon. She appreciated that her manager changed her duties and encouraged her to take care of herself.
Megan is a nurse currently on a “career break”, but she hopes to return to work soon. She appreciated that her manager changed her duties and encouraged her to take care of herself.
Oh yeah like ever, ever since it really started, like she used to like make sure that I was having enough to drink. I could go and have breaks when I needed them, because obviously it’s very hard, like nursing, like finding time to go to the toilet and stuff, and your breaks, cos you’re always so busy, and on your feet all day. And obviously as time went on, it was starting to get harder for us to be on me feet, so she used to put us in different areas of the department which kind of made it a bit easier for us. So if I was like checking in patients or in recovery, cos you can sit down for a little bit while you’re looking after patients and things, so I kind of like alternated what I’d done and things. Some, some of the procedures I couldn’t do anymore cos it involved wearing a lead apron all day, and standing in a procedure room, so she’s kept us out of that room for about a couple of years now, cos I couldn’t stand with the apron on and stuff. But she’s always there if I need to talk to anyone, and it’s just been really helpful. Everyone has at work.
Megan felt “vulnerable” when she had urodynamics, but praised the healthcare professionals who were “very supportive” and put her “at ease”.
Megan felt “vulnerable” when she had urodynamics, but praised the healthcare professionals who were “very supportive” and put her “at ease”.
And it is like, I know it’s got to be done, but you, it is quite embarrassing, cos you think like sitting on the commode and you’re going to the toilet, and stuff, and you’ve got to get your ultrasound, and you just think like I feel really like a bit vulnerable, because like with being young and stuff, you don’t expect to have like bladder problems so young, and things. So but all of the healthcare professionals that I have like come into contact with have been very supportive and they’re very good and put you at ease and stuff, and make sure you’re like, you don’t feel like your dignity has gone, like they make sure that’s there and stuff. And make you comfortable during it and like answer all your questions and everything, so that does make a huge difference as well.
Megan saw interstitial cystitis as a diagnosis given when healthcare professionals “can’t find anything else that’s wrong”.
Megan saw interstitial cystitis as a diagnosis given when healthcare professionals “can’t find anything else that’s wrong”.
But when I was diagnosed with the painful bladder syndrome, and the interstitial cystitis, they didn’t know what caused that, cos they’re saying there’s no cause for that. You just get diagnosed with that when like they’ve checked all the other tests and they’ve come back negative, and that’s kind of just like, well that’s like your diagnosis because we can’t find anything else that’s wrong.
Megan has to watch what she eats and drinks because she has an ongoing urinary tract infection.
Megan has to watch what she eats and drinks because she has an ongoing urinary tract infection.
But cystitis is a hard one to kind of like explain and to deal with, because sometimes people think like cystitis you can help it with cranberry juice and stuff, and drink lots of water, but they tell you with the chronic UTI not to drink cranberry juice, cos that can make it worse. And when you’re on long-term antibiotics they tell you not to drink loads of water because it can flush the antibiotics out, so it’s like they’re not actually doing their job in the bladder. So it is quite different, like things that people tell you to do when you’ve got a UTI that you can’t do when you’ve got like a chronic UTI. So, and like certain foods I can’t eat, spicy foods and chocolate, I can’t have and carbonated drinks, alcohol, I don’t think I’ve had an alcoholic drink for nearly two years.
Or chocolate, that’s hard when it’s Christmas, and you can’t eat chocolate. But it’s good in a way because if I was able to eat chocolate and I’d been off work I probably would have put on loads of weight. So it’s worked out well in the end.