I try not to think about the future

C utting fizzy drinks and alcohol was tough in the first year of a degree in print and textile design at Winchester School of Art. You’re meeting new people, they’re saying ‘go on, have one’ and they find it strange if you say no.
But imagine a bladder covered in open sores. Now, pour alcohol on that. It’s going to hurt.
But fizzy drinks and alcohol were one of the first things I noticed as triggers for the fact that I was getting recurrent pelvic pain.
My symptoms began when I was 15, and we thought it was a urinary tract infection (UTI) but it wouldn’t go away even after antibiotics, scans, bladder function and kidney tests. It was permanent pain.
Mum is a gynaecology nurse, and she has IC and endometriosis too, so we knew there was something similar going on. My periods were always heavy, and for that reason I’d been on the pill since I was 14. A laparoscopy diagnosed endometriosis. They also looked at my bladder and said it was chronic cystitis. It’s never going to be cured, it’s a condition for life, so you have to learn to manage it.
And so I have learned that I just have to be more cautious and careful than my friends, and to maintain simple management such as drinking lots of water, being careful about hygiene and what I eat and drink.
I realised when I was about 19 how regularly after I’d had these that I would get a UTI, or there was such an urgency about needing to go to the loo that there was a real danger that I would wet myself.
It was tedious, everyone around me was eating and drinking what they wanted, and I couldn’t. I had to leave lectures to use the loo, 15-20 minutes into it, it was annoying and disruptive. It was more obvious in small groups though. After a while, I had to explain to my tutors, because I didn’t want them to think I was trying to get out of the work.
It was easier after first year. I am a naturally upbeat person, I could socialise without alcohol, and not eat greasy or spicy food. Tutors understood, friendships were settled so I had support and understanding.
Even so, at times I felt dispirited. In second and third year the workload was high, and I was exhausted. Pain is tiring, and I was often up through the night once an hour or more because cystitis makes you want to go to the loo all the time. At times I just wanted to stay in bed, I didn’t want to deal with uni too.
It was hard to tell whether the pain was cystitis or endometriosis. In third year, I had injections for endometriosis which made the bladder pain identifiable. I used to go swimming three or four times a week and I noticed that the movement aggravated the pain. But there was mental escape from the pain, it was a sort of meditation, it wasn’t uni work, it was just me going up and down the pool.
Mum could tell it was deeply difficult. She sees me and blames herself because she has it too, so sometimes I try to hide it from her because I don’t want her to feel that way.
When I’d been out of uni about nine months, I decided to try a bladder instillation for the IC after I chatted to a woman in an out patient clinic, she’d had two – one aggravated it and one helped. She said it might be worth having a go. My consultant is very happy for me to have a go at things that may help.
So Angie, the specialist nurse, showed me how to self-catheterise. I couldn’t do it, it was like putting a wire against a wall and it bending. It wasn’t a day off, I was worried about time. So we decided I’d try it at home, where I could be more relaxed, and that worked. I had plenty of time, no pressure. Mum says a lot of women don’t want to try at home, I can’t imagine it any other way. Delays in the clinic can be 30-40 minutes. I can have a nice bath after work to relax and make sure I’m clean, do the instillation then relax and watch TV, and keep the fluid in my bladder as long as I can. In hospital, my thoughts are always about I need to go, I need to go. But I find that keeping it in longer makes the effect last longer.
Typically one instillation keeps me pain-free for two weeks. When I went to Japan to visit my sister for three weeks, it was hard to manage symptoms towards the end. I realised with hindsight that stress is a factor. If I was stressed about needing to wee when I was out sightseeing, the pain was worse. After a bad day at work now, I notice pain. Mum says the same when she has a flare up.
I look forward to instillation nights…as soon as it goes into the bladder there’s a cooling and soothing sensation which helps me to relax, which is especially good because I’ve probably been feeling bad if I’ve got to the point where I want to instill. I sleep better, instead of getting up two, three or four times a night. The worst thing is when it wakes you and you think you need the biggest wee ever, and it’s just a drop. You get so annoyed, thinking ‘I was woken for that!’
When I instill Gepan, I know that next day I will feel great. The first night is the best, but usually I will have no symptoms for 5-7 days. Towards the end of the second week I am back to monitoring myself.
So many things impact on the IC, and on my life. It’s frustrating. For instance, asparagus really irritates my bladder, but for Mum it’s fine. It’s a personalised condition and it can be very isolating. It’s hard for friends to understand, but I am lucky because if it’s particularly bad I can talk to Mum.
My boyfriend is very understanding but even he will say, surely you can have a bit of this or that. I could, but then I might be in agony tomorrow, is it worth it? No.
I deal with it myself as much as I can until I want to have a little rant to Mum. She’s had to deal with it since she was 19 so she understands.
I try not to think about the future. That’s the one thing that gets me stressed, the unknown. It could get much worse, to the point where I couldn’t work. I look at Mum when she’s having a bad flare-up, she can be bed-bound, and wonder if I will get that bad. I stop myself thinking that way, if I start that I wouldn’t be able to enjoy any of this life, so the plus side is that it keeps me in the moment, making the most of now.
I’ve just started a six-month course of treatment for endometriosis which puts my ovaries into a temporary medical menopause. I get all the symptoms that go with it, hot flushes, mood swings, lethargy – and no one told me that it would affect my memory. I forgot my purse four days in a row! It’s not great but it’s better than pain and bleeding. It’s a major relief, I can be on all the contraceptives under the sun and still bleed heavily.
I had this treatment at uni, I felt like I was having a breakdown, it was difficult to explain to tutors the effect it was having on my work.
My consultant says the best thing for endometriosis is pregnancy and breastfeeding, but the problem is that it can affect fertility and the longer I leave it the more likely that is. It puts pressure on us as a couple. We’ve been together two years, he wants kids but is in no rush, he’s only 31, and I want a career, I want to get into marketing, I want to enjoy work and learn lots of things.
I was honest with him from the start, sex can be a trigger for a flare-up or, if symptoms are bad and I have sex, it can make them a lot worse. That’s a time when it’s almost too much to bear. But I know now if it’s happening, I can drink a lot of water, do an instillation, and minimise the problem.
I am with employers too so that if I need time off for a hospital appointment or need to go to the loo a lot, they don’t think I am skiving. People are generally understanding and curious. There may be an assumption that I will be off sick a lot but in fact I’ve only been off twice in the 18 months that I’ve been in this job, and that was for completely unrelated things. If I have an appointment, I try to make the time up – start early or work from home. My bosses are aware that I’m trying my best.
I do as much exercise as possible, swimming and running 3-4 times a week. It takes my mind off the problems and it does me good, it works like meditation. I think it actually improves the condition itself. If I’m not exercising, the symptoms get worse. Sometimes I come back from work and ask myself if I want to run, and the answer is no, I just want to curl up in a ball, but I’m going to do it. Yes, it’s cold and wet and I’ve got pain, but next day I will feel better than I would have done.
Urgency improves with the instillations, it becomes more of a gradual feeling like normal people get. When it’s bad, I need to go and it can’t wait.