First of all, I would like to say how lucky I am to be able to write this. I cannot believe how my life has changed.
I had my first UTI aged eight. I am now 70. In those days, I was told to drink barley water but the UTIs continued throughout my school life. I had a letter for school from my GP excusing me for loo trips during the school day and I was sometimes sent home. Friends’ parties and organised school trips were not part of my life. On top of all of this, when I was 16, I contracted rheumatic fever and was then put on a four year course of antibiotics to treat this. I had no UTIs in that time. I realise now that was due to the low dose antibiotics.
Childhood cystitis carries into my adult years
In my late teens I met my husband and we got married at when I was 20. I then experienced 18 months of continual UTIs, the classic honeymoon cystitis. Each attack was every 3-4 weeks treated with short dose antibiotics. The same year I got married, I had a cystoscopy and a urethral stretch. I remember that one infection went into my kidneys which caused pyelonephritis and I really was very ill. My doctor said that he had tried every antibiotic available at that time and was stumped to know how to deal with it.
I suffered with urgency, frequency, bladder pain and spasms, burning, feeling that I had thrush in the vulval area and vagina as well as a swollen genital area. I felt very sore and heavy, almost like everything was falling out and there were horrible sharp shooting pains. It often felt like my bladder was holding a gallon but only a dribble came out. There was pain at the beginning and/or at the end or urination. I could go on but put simply I was a mess. I was unable to make and keep plans, I could not make any commitments.
However, I was a working lady and shortly after getting married we had 2 children. Sometimes I had to have time off work but I always managed to soldier on. As I always got thrush with antibiotics (no one mentioned probiotics in those days), I avoided doctors and urologists and treated myself with cystitis sachets from chemists. After all, I had tried all the antibiotics and already had investigations which didn’t find any anatomical problems so what else could they offer? I will be honest and say my husband and family cared not a jot about what I was going through. I suffered in silence and embarrassment. In those days, you did. They were “women’s problems” and you put up with them.
These UTIs stayed with me all my life. On average, I suffered an attack three or four times a year and yes, sex was sometimes the trigger. My system of using sachets worked fine until the sachets stopped working. I was 60 at the time.
At 60, life stopped and the tests and IC treatments began
My doctor put me on a year’s course of low dose, prophylactic antibiotics, nitrofurantoin. This worked great but once I had stopped the antibiotics, the UTIs returned with a vengeance.
Lawn green bowling was a hobby that I loved and I bowled three or four times a week. But suddenly I could not bowl as I never knew when I would be ill and things could change from one hour to the next. My social life became zero.
My GP put me on Oxybutynin which is a medication for overactive bladder but that gave me serious retention. Finally, after five years of this, he referred to a urologist. The urologist diagnosed a prolapsed bowel, a prolapsed bladder, vaginal atrophy and Painful Bladder Syndrome/Interstitial Cystitis. I was referred to a colorectal surgeon who also diagnosed a dysfunctional pelvic floor and slow transit digestive system. I was then referred on to a pelvic floor therapist and a dietician. It seems everything south of my waist was in a sorry state. One highlight was a gynaecologist who tried to insert a pessary, OMG she hurt me so much I could not sit down for a week!!
My urologist prescribed 25 mg of Amitriptyline to help with the pain and sleep, 10,000 mg cranberry tablets (which proved to be useless), an acid free diet and lots of water (6/8 glasses a day). The dietician simply gave me a list of vegetables not to eat. But the pelvic floor therapist worked hard (and so did I, and still do!) to re-engage my pelvic floor. I was also given Vagifem for my vaginal atrophy, I used this daily for six weeks and now 2-3 times a week, it has made a difference. The amitriptyline worked for a while, but then I had to up it to 35 mg and then 50 mg. My GP also put me on Gabapentin. At first a dosage of 300 mg, then 400mg, 500mg and finally 600 mg. These never got rid of the pain completely but made it more bearable.
To help my gut and slow transit, I also decided to make and drink kefir, which is a probiotic drink to repopulate the gut with healthy bacteria. I found I got a lot of relief with bicarb, Azo tablets, Buscopan for the bladder spasms, paracetamol, ibuprofen, ice packs and hot water bottles.
But my life was unbearable. I was unable to leave the house some days, tied to the bathroom. I sometimes went to the loo 40 or 50 times a day, day and night!! And it was nearly always painful each time I did! By this time, I had remarried and my second husband was extremely upset to see me in so much pain and unable to help. At one point, I said to my hubby “If this is life I don’t want it!!” and I meant it.
A connection with fellow sufferers and seeking a new opinion
I joined a lovely Facebook group for those suffering with chronic infections and met lots of lovely people all suffering the same infections as me. I felt less lonely but so sad that we all suffered so much and there seemed to be the same story repeatedly, continuous infections and the same testing and diagnosis of IC or PBS, treatment of which didn’t seem to resolve anything.
There was a lot of talk in this group about Professor Malone-Lee, a specialist based in London who was treating patients diagnosing them with an embedded infection and using long course high dosage antibiotics to resolve symptoms and give people their lives back.
When I spoke to my urologist about the Professor, he assured me I did not have an embedded infection. But I decided to go and see him to rule out the embedded infection idea and then I would try something else. At the time, I would have considered bladder removal, I was so desperate but I was aware that I would have to go through a lot of procedures before the NHS would consider it.
I saw the Professor in June 2017 as a private patient. His clinic is not close to where I live, so the journey to see him had to be planned very carefully to have plenty of access to a toilet. He checked a sample of my urine under a microscope and told me I had a chronic embedded infection. He was so kind and considerate at that first appointment but I was so stunned at the diagnosis that I genuinely can’t remember much more of that first appointment. Luckily my hubby asked the Professor “can you cure her?” to which he replied “of course”. I left in tears of happiness at finally someone giving me a concrete diagnosis and a way to resolve everything.
He put me on an ongoing course of antibiotics (Cephalexin 1000 mg x 2 daily) and Hiprex, an antibacterial (1000 mg x 2 daily). Within one month I had no pain or symptoms. I continued to take prebiotics and make my own kefir (a fermented probiotic) and was lucky to only have one tiny bout of thrush which responded to treatment with Canesten cream despite the high antibiotic dose.
All IC meds stopped and I’m now off antibiotics
By September of the same year, I had stopped the Amitriptyline and Gabapentin. I now only have the occasional niggle and that is when I am shedding epithelial and white blood cells into the urine, a sign that my body’s immune system is responding to any pathogenic bacteria. I am also on no painkillers at all.
In finishing my story, I have been off antibiotics for 10 weeks now. I now see Professor Malone-Lee every three or four months. I didn’t go back to the urologist who had diagnosed IC/PBS when I was 65 but my GP is delighted with my improvement and avidly reads all the paperwork he receives from Prof after each of my appointments. I’ve also been lucky in that all the medications prescribed by the professor privately my GP was happy to provide on the NHS.
Over the years I had had many urine tests – most coming back negative of course. I have since seen those test results when I requested copies from my GP and I often had white blood cell counts of 50/60 yet was told ‘no infection’. Those tests which did come back positive for infection also showed that I was resistant to cefalexin yet that is the antibiotic I took when I started treatment with the Professor. Obviously low doses were insufficient to kill off the bacteria and it needed a long term, high dosage to do the trick. Alexander Fleming said in 1945 that persistent low doses of antibiotics would only make the bacteria resistant. He knew what he was talking about. Thank goodness that dear Prof Malone Lee does too!!
For me, I feel that in addition to the antibiotics, working with a pelvic floor therapist, managing my gut issues, diet changes and continuing to use the topical oestrogen to help with the vaginal atrophy have all contributed to my improvement over the last year or so. If something doesn’t feel right in your pelvic floor, go see your GP or gynaecologist. I had no idea of the problems I had until I was seen by a specialist. Treating my vaginal atrophy has helped make things so much more comfortable and on top of this, no surgery for either prolapse. I decided as part of my healing journey to turn vegan so no more slow transit and my gut feels very happy on the homemade probiotics. Even Prof is now advocating Kefir for his patients.
Enjoying life again
One joy for me is that I have now been able to return to my bowling life, which is very social. I played throughout this last winter in an indoor league, which we won. I am also playing outdoor bowls again, indeed even playing for the county. It is so lovely to be able to commit to games again and know that I will be well enough to play. I am also able to eat and drink anything I want.
I would strongly advise anyone to consult Professor James Malone-Lee, either through his private clinic or in his NHS clinic, whatever is appropriate for you. He truly knows his stuff, he is always available to us, his patients, at the end of an email. How many other consultants do that? I was very sceptical when I went to see him but am so, so glad I did.