02 Sep Angie’s Chronic UTI Story
At the age of 28, Angie has suffered post-coital urinary tract infections (UTIs) for her entire 20s. Following an investigative cystoscopy to find the cause, her situation took a dramatic turn for the worse. She went from suffering UTI symptoms only after sex, to suffering them constantly. Since dipsticks and cultures no longer showed the infection, she was petrified the diagnosis of an ‘incurable urinary syndrome’ was looming. Angie begged for a referral to a specialist UTI clinic in London for a second opinion where she was swiftly diagnosed with a chronic bladder infection. After five years of antibiotic treatment, Angie’s life has much improved from her desperate earlier years, but her embedded infection remains stubborn and difficult to fully shift. Find out more about Angie’s journey.
Justifying my illness and my treatment
I’ve taken a long time thinking about how to write about my illness and treatment experience. I realised that my first instinct was to paint as rosy a picture as possible of my life now that I’ve been in treatment for so many years, even though I do not always feel positive. I think that I felt inclined to give this impression because:
a) I want to give encouragement to other sufferers; but also
b) I realise that, when discussing my illness, I’m usually in a defensive position. It sometimes feels like I’m endlessly explaining my illness and justifying my continued treatment.
I have these conversations with friends, family, and doctors…and friends who are doctors (those are the most difficult)! All the above are caring and well-educated people, but the majority seem to fail to believe that I have “tried everything” before “resorting to” long-term antibiotics; which is my current treatment.
I understand that people ask me these questions because they care about me, and perhaps I sound unduly impatient or bitter (perhaps I am!). However, I do feel sick of explaining why I—a 20-something-year-old, otherwise-healthy female—am justified in taking 10 pills a day. I believe that the primary motive of these questions is genuine care for my health but, despite this, I am often faced with a condescending, incredulous, even accusatory attitude.
I think people find it difficult to believe that there is no apparent reason why I (as I say, an otherwise-healthy young person) have become so ill. I wonder if, as well as concern for me, it fills people with a kind of existential fear of the idea that “this could happen to anyone, at any time”. I think people try to find a gap in my knowledge, or attempts to find treatment, or indeed a reason why I may have brought this upon myself. I have frequently heard the following:
…“Surely you can’t be doing your very best to cure yourself. You’re so young!”
…“It’s been going on for so long! There must be some mistake.”
…“Have they tested for everything?”
…“Do you eat healthily?”
…“Do you practise unclean sex or masturbation?”
…“Have you tried naturopathic remedies? … Yoga? … Meditation?”
…“Have you cut out meat, dairy, wheat, gluten, sugar, preservatives, corn, fun?”
…“Have you spoken to a shaman?”
…“Have you considered fruitarianism?”
…“If only you would give the Norse God of War a chance to work on your case!”
(OK, I have exaggerated with the last two examples on that list…but only those!)
Oh, also…“Don’t you realise that antibiotics will decimate your ‘good’ gut bacteria, cause irreparable organ damage, and lead to antibiotic-resistant bacteria which will be a threat to you and others in the future…??”
Therefore, I generally want to reassure the listener/inquisitor that I’ve researched all my options thoroughly, that I am aware of the risks, and that I’m taking the best available course.
And I do believe that I’m in the best position that I could be! I have access to treatment from the LUTS clinic in London (previously run by the incredible, brave, patient and kind Professor Malone-Lee), and I do think that this is the best choice available for someone in my position. I am extremely lucky to now be under the care of consultant urogynaecologist Dr Rajvinder Khasriya (PhD MRCOG), and I’m genuinely eternally grateful to everyone at the LUTS clinic for allowing me to live my life as I can today!
However, although I am infinitely thankful to this clinic, I must confess that as each year goes by—and I’ve now been ill for the majority of my 20s—my positivity is increasingly forced.
I realise that, when discussing my illness, I'm usually in a defensive position. It sometimes feels like I'm endlessly explaining my illness and justifying my continued treatment.
How my illness began
I had one bout of ‘honeymoon cystitis’ the first time I had sex. Then nothing until I was about age 20 (year 2010). I’d got a new boyfriend, and I thought things were pretty great…apart from the fact that every time we had sex (Every. Single. Time.) I developed UTI/cystitis symptoms within about 24 hours. We’re talking the classic urgency/frequency, burning and pain when urinating…well, pain all the time. Nothing brought relief other than spending the following day on the toilet, literally hours of just sitting there, usually crying, cuddling a hot water bottle and popping ibuprofen like Smarties.
The first few times that I went to my GP in this state (I remember that it was difficult to leave the toilet for long enough to just sit in the doctor’s waiting room) they would give me the standard short course of antibiotics based on my symptoms alone. My symptoms would generally disappear after the antibiotics, but then return the next time I had sex. However, after probably the fourth or fifth episode, doctors refused to give me antibiotics as I couldn’t produce a positive urine dipstick test, telling me that it couldn’t be an infection.
I didn’t know why this was, but I was obviously desperate for relief, so I would go to various walk-in centres around my city and tell them it was the first time I’d had these symptoms in order to get another antibiotic prescription and feel better again.
I never got a clear explanation from a doctor about why I might have UTI symptoms without an infection, and nothing changed until the relationship ended later the same year. Without the relationship, without sex, my bladder went back to being a happy chappy!
A cystoscopy resulted in a turn for the worse
During my first year of university (age 21) I started another relationship… and my mortal bladder-based enemy returned! The same story as before, sex = cystitis! This time I had a more interested GP and, although my dipstick tests were consistently negative, he gave me a low-dose (prophylactic) antibiotic to take immediately after sex, but this did nothing for me. Following this, he referred me to a really lovely urologist.
Talking with Lovely Urologist (LU) was the first time that I felt really listened to. We talked about my bladder, Game of Thrones, yoga, and he gently suggested the possibility of interstitial cystitis (IC). I’d already read about IC online but put it to the back of my mind because I felt that I didn’t fit the profile because my symptoms appeared exclusively after intercourse. Also because, obviously, the idea of having an incurable pain disorder petrified me!
LU performed a cystoscopy and urethral dilation on me under general anaesthetic. He explained that the cystoscopy looked for physical abnormalities or Hunner’s ulcers within the bladder; whilst the dilation “’popped’ peri-urethral cells” (which he said sometimes relieves pain in sufferers).
It hurt to pee the first time following the procedure, but after that I had no problems! I even had sex I think two or three times with no issues! It was a very happy time, not least because I was on a work placement in sunny Spain! I was in a lovely climate, I wasn’t in pain, and I thought that the nightmare had actually been cured by this surgery! However, on the fourth or fifth time in bed with my partner, around three months after the procedure, the cystitis symptoms returned. And from this time on, at age 22, it never really left me.
After I had sex that time, I had the familiar acute flare—sobbing on the toilet, pissing razor blades, the usual—and the symptoms dissipated over the next few days, but they never fully disappeared as they used to. I was never prescribed antibiotics at this point because the dipsticks were ‘negative’.
Whereas previously I would have acute urethral burning, frequency, urgency, and bladder pain for a few days following sex; I now had these symptoms on a much lower level—but constantly. My daily frequency and urgency was much higher than what had been ‘normal’ for me pre-cystoscopy, and I now had/still have some lower level of bladder and urethral pain on a daily basis.
I returned to hospital to see LU and tell him what had happened. I felt sure this change in symptoms was a result of the cystoscopy and dilation, as it was so distinct and nothing else had changed in terms of my body/sexual behaviour. However, LU said this was impossible, and that this was unfortunately probably just the progression of IC. The cystoscopy showed no abnormalities or ulcers to confirm IC, but he said that my symptoms—in the absence of UTI—suggested an IC diagnosis should be given anyway as a “diagnosis of elimination”.
I was resistant to accepting an IC diagnosis because (apart from the fear of incurability!) it just didn’t make logical sense to me. My ‘honeymoon cystitis’ had only changed to this constant IC-like state following an invasive surgical procedure and—if I truly had never had a UTI—why did my body respond so clearly to antibiotics and D Mannose?
I was resistant to accepting an IC diagnosis because (apart from the fear of incurability!) it just didn't make logical sense to me.
The ‘Professor’s Fan Club’
It was during this time that I really started searching online for answers. I came across the term “chronic embedded UTI”, and read about the long-term antibiotic treatment offered by Professor Malone-Lee’s clinic in London for patients with symptoms and medical histories like mine. I presented my findings to LU, and told him that the Professor and his treatment seemed to have quite a fan club of previously “incurable” IC patients, who had seen great improvements with his regime.
LU seemed pretty amused by this, and actually sent a referral request to the Professor saying that “I have a young lady here in my clinic who says she’s joined your fan club! Will you accept a referral from out of area?”
At my appointment with the Professor I was diagnosed with a chronic UTI based on my epithelial and white blood cells counts. To be specific, he described my infection as a “humdinger!”. Although I was still in a lot of pain in that moment, I remember the feeling of palpable relief in my body, just at being believed and diagnosed. I remember him saying “I’m not surprised you’re in pain!”. It was honestly such a significant moment for me, I just broke down in tears. I’ve now been on long-term antibiotic treatment for about five years (since 16 January 2014)
It’s honestly difficult to say how my experience has been because there have been constant ups and downs, and it’s all a blur now. I do remember that I actually got quite a lot worse at the beginning (well, within the first year) of the treatment. I remember feeling despairing in the flat I lived in at university, not knowing if I could ‘make it’ on the 20-minute walk to the city centre, between going to pee at home and arriving at the nearest public toilet. In that flat I also kept a bucket in my room to wee in when my flatmate took a shower and I simply could not wait for the bathroom.
My urinary frequency was awful that first year. I would use the bathroom about 20 times a night, and I know that I wrote a significant portion of my dissertation (a study into ‘the lived experience of individuals with interstitial cystitis’) whilst sat on the loo! Quite appropriately.
For me, the psychological and social impact of the illness has always been worse than the physical effects. Most significantly, not being able to socialise or attend work/lectures due to the sleep deprivation from nocturia. Also, not being able to drink alcohol or caffeine socially and having to schedule (or decline) social interactions based on proximity to a bathroom. I used to love going hiking and camping, but the pain and frequency from my bladder made that simply unthinkable for many, many years. I always had, and still have, overwhelming thoughts of “why has this happened to me? “What should I be doing?” and— my least favourite—“if I’m like this in my 20s, what on earth does my future look like?”
Recovery road 🙂
THANKFULLY, I can say that I’ve regained a LOT of control and social freedom during the years of treatment. I now have many days in a week without any pain at all! Which is just wonderful. It’s amazing how different life looks when nothing is hurting you constantly! I still have high daytime frequency, but the nocturia has reduced significantly, so I’m able to sleep for enough hours to allow me to ‘function normally’…or at least appear to do so! 🙂
My symptoms are greatly reduced, but not gone by any means. Any time that I have sexual contact (which really isn’t often due to my conditioned fear-of-pain response!) I live in fear of horribly increased symptoms for the next few days. Sometimes they come, and sometimes they don’t, it’s 50/50 now.
I would say that I’ve never had a ‘normal’ sexual relationship since age 20. I have to explain to each new boyfriend that sex is a huge issue for me, and that anything of that nature is going to be pretty infrequent, due equally to the pain it can cause me, and the fear of that pain causing me to back away from sex to begin with. If ‘the act’ does occur, it needs to be followed by me running desperately for my D Mannose like an addict, and immediately heading for a shower. So you can forget cuddling or pillow talk! I can enjoy sex, but between the pain during and after, and fear thereof, it’s ultimately just not worth it most of the time. Perhaps I should just straight-up add this to my Tinder profile?? It might save me a lot of time!
However, despite dissatisfaction in that area of my life, Professor Malone-Lee’s chronic UTI treatment truly has allowed me to live my life! Without the antibiotics, I have no doubt I would be disabled by my illness to the point of not being able to work due to pain and sleep deprivation. So, I’m not cured yet, but I am eternally thankful every day for the life that I’m managing to live, as it previously looked impossible!
Will I ever be cured? I don’t know. The Professor told me, before retiring from the NHS, that I am part of “a difficult subset of patients, who respond particularly slowly to treatment”; however he maintains that I will be cured one day… I bloody hope so!!
I now have many days in a week without any pain at all! Which is just wonderful. It's amazing how different life looks when nothing is hurting you constantly!
My top tips!
I try to be positive and thankful for the life that I am living. Although this is difficult on the bad days, I must remember that there are fewer bad days than there used to be, and I just hope to continue in this direction!
Everyone is different, and some things that have worked for me may not work for others and vice versa. However, based on my personal experience, my “top tips” for anyone in a similar situation would be:
- Do your own research, online and by talking to others, about this illness. Most doctors are great but they are human and this is an emerging area of medicine; they do not know everything.
- Do not bother with millions of expensive supplements, restrictive diet changes, and alternative therapies, unless you really feel a difference. Apart from D Mannose, I have found all such things to be a waste of money, and I found the ‘IC diet’ to be so restrictive that it caused me anxiety and stress trying to follow it.
- Trust in Professor Malone-Lee’s work and have patience with the treatment. Trust equally in the wonderful team at the LUTS clinic in London.
- Above all, trust in yourself! This isn’t in your head, it’s in your bladder!!
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Valerie GPosted at 09:27h, 02 September
I can absolutely relate to Angies story of her UTI’S, but I’m nearly 81 yrs old & in that respect quite thankful to be in my twilight years! Have had years of suffering, no end of antibiotics, bowel cancer,,maybe because of damaged gut bacteria .She has my deepest sympathy.
Irene PPosted at 19:08h, 02 September
I totally sympathize with Agie’s frustrations and her reluctance to have sex . Not knowing whether you will be on the toilet in pain all night make you wonder whether it’s all worth it.
I find Hiprex works in-between antibiotics, but at age 62 also really feel for someone so young to have this problem.
Thanks for telling your story. Best wishes and I hope you keep improving!
AngiePosted at 22:19h, 08 September
Thank you both Valerie and Irene for your kind comments, and for reading my story 🙂
Yes… I am not at all a fan of having this at this age… or any age 🙁 Just try to be thankful that at least I have improved and have access to the LUTS clinic.
I’m sorry to hear that you’re both suffering, and I wish you the best of luck! Xx
Barbara BPosted at 22:10h, 02 November
This is exactly what happened to me. My cystitis ‘career’ started when I was twenty. After that, as with you, sex = cystitis until I found the magic formula of going for a pee immediately after sex. This helped for a while but over the years the cystitis got worse and I had one hell of a job convincing doctors that I had a problem. It was the same old ‘drink cranberry juice’, ‘are you wiping front to back?’ ‘drink loads of water’ etc etc. I did take D-Mannose and it did help for a couple of years, but then the old symptoms started to creep back. I saw Professor Malone-Lee in October 2014 and he immediately diagnosed an infection. I’m still on antibiotics and Hiprex but I live a normal life and currently have no symptoms. In April 2016 I was about to try doing without antibiotics when I was diagnosed with lung cancer. I am in remission now after surgery, chemotherapy and radiotherapy. I often horrify people by saying I would rather have cancer than cystitis. With cancer you can still go out with friends, meals out, trips to the theatre or cinema – with cystitis you can’t stray far from the loo! Well done you for persevering to find the appropriate treatment. It’s appalling that you have to fight so hard just to live a normal life.