Taking a leak, a jimmy riddle, a wee or a quick pee is something we take for granted. However, a rare condition called a urethral stricture means this call of nature will at some point require medical intervention. While this can make coping with the problem easier, it can also present new challenges in learning how to self-manage the condition, in choosing the right ongoing treatment, and not least in dealing with the NHS long-term.
I first experienced the extreme physical discomfort of complete urinary retention as a young woman. This happens when one is full to bursting and the mounting pressure intensifies the desire to pass water, but does nothing to relieve it. In addition, the emotional and psychological distress from the fear and denial that my body could not function in such a basic way was profound.
It turned out I had a large bladder stone - quite rare nowadays, about the size of a golf ball. The white calcified mass lodging in my bladder had been undiagnosed for nine years and in combination with the stricture eventually caused me to stop 'going' at all: a potentially life threatening situation, only relieved with the aid of an indwelling catheter which filled a bag strapped to my thigh. I could now choose when to visit the loo, but this private convenience turned into a nine year holiday for my urethra, which may have contributed to it having gone into a dormant and possibly irreversible state.
Millenia of bladder and kidney stones
Samuel Pepys (1633-1703) wrote about his bladder stone or "Ye stone" in his well-known diary, celebrating its removal in 1658 every year until his death. Pepys's stone was cut in an era when anaesthesia was a mixture of opiates and mandrake root . In the absence of a free hospital bed, Pepys' perineal lithotomy took place at the home of his cousin. He was trussed up and held down by four strong men as his surgeon, Thomas Hollyer of St Thomas' Hospital, made an incision between the scrotum and the perineum (known as the Marian) to remove a stone the size of a tennis ball. Pepys, then 25 years old, survived his surgery along with forty of Hollyers' lithotomy patients that year. The next four were not so lucky.
Ancient Greek and Hindu texts are the first record of perineal lithotomy . The description by Celsus (25 BC-40 AD) has become a landmark in Urology, the branch of medicine concerned with bladder and kidney function. Ammonius of Alexandria suggested crushing a bladder stone to remove it and Hippocrates (460-370 BC), the "Father of Modern Medicine" refrained from cutting the stone himself, leaving that to the lithotomists. Wandering lithotomist Frere Jacques De Beaulieu (1651-1719) was a Franciscan monk who learned the art of operating for bladder stones from an Italian surgeon, and was later recognised as a master of the practice.
Other well-known sufferers of kidney and bladder stones include Ava Gardner, Nat King Cole, Napoleon III, Caesar Augustus, Isaac Newton and Michaelangelo. In fact, stones have been a scourge among the world's population for Millenia. In 1901, the Archeologist E. Smith retrieved a bladder stone from a 4500-5000 year old mummy in El Amrah, Egypt. And still millions of people are suffering with kidney stones, including my boyfriend. He has undergone lithotripsy at University College Hospital, London (UCHL). This relatively modern procedure is administered with knees bent in a shallow pool of water where ultrasound electrical shockwaves are pulsed over the kidneys. Lithotripsy aims at breaking down the stones so the body can flush them out, and if this fails, the only remaining option is surgery.
Stones, strictures and supra-pubic catheters
The emergency surgical intervention for urinary retention caused by stone or stricture is traumatic, even today. In my case, a consultant rushed at me with a long silicone tube called a supra-pubic catheter that he forcibly inserted through the skin, muscle and subcutaneous fat of my lower abdomen, and on into the bladder to create a new conduit. A little balloon is inflated in vivo to stabilise it, which then deflates to remove it. The procedure is a shocking and messy one when performed without sedation, but is the quickest route for getting trapped urine out. Once in place, my indwelling catheter was changed every 5-6 weeks to prevent new skin and tissues from growing around it.
Following this routine as an outpatient for nine years, my anxiety about having "the pipe" pulled out and a new one pushed in again was invariably acute. My other concerns were the pipe becoming blocked by calculi or infection, getting it stuck in the channel, or someone accidentally sitting on it, or worse.
Pepys wrote, 'I remember not my life without the pain of the stone in the kidneys even to the making of bloody water upon extraordinary motion .' The bloody water Pepys is referring to is haematuria, or blood in the urine. I too experienced this extremely stressful symptom when the stone or the pipe chafed the blood vessels in my bladder, causing it to bleed: easily done when moving around leading as normal a life as possible. I discovered that one of the best remedy for bloody water is to drink pints of beer, often leading to a jolly solution to the problem.
Despite its' inherent problems, the pipe became my trusted personal convenience as no longer was I entirely reliant on public conveniences when my twitchy bladder called. In the early, disorientating days of urinary retention a leg bag is recommended. The bag attaches to the far end of a supra-pubic catheter where it collects several hundred millimetres of urine, especially useful during the night, on long flights and drives, and at the cinema or theatre. The pipe was a boon at festivals too, all I had to do was pull a little trigger attached to the pipe's proximal end, and job done. I gradually weened myself off this useful, albeit unsexy accessory, so that my movements were relatively free. But the pipe was a keeper, not least of all because it relieved me from the physical agony of a full bladder and its mood-altering effects on my psyche.
NHS approach to urological disease
Presently, urethral stricture affects about 1 in 100,000 men worldwide and 0.5% of that number in females. But numbers are rising due to stress, iatrogenic causes (illnesses exacerbated or caused by medical intervention) and cancer. Urology is the branch of medicine concerned with the urethra, a 4cm long tube in women, 8cm long in men, that emerges from the bladder into the sex organs. It covers the functions of the kidneys and ureters, which are the much longer tubes carrying urine into the bladder.
Self-managing a urethral stricture
After my stiletto-heeled consultant Tamsin Greenwell at UCH had crushed the stone and fished the fragments out through the supra-pubic channel, I experienced normal voiding for the first time in years. And, like Pepys, I kept the debris as a reminder that surgery had freed me from the bladder stone and life with an indwelling catheter. Now, I just had the stricture to deal with. Finally, I could begin to take responsibility for dilating my urethra, since self-catheterisation was impossible when the stone blocked the entrance to my bladder.
I had timed it well. Recent technological advancement has produced an adult female urethral catheter the size of a lipstick. And, much like women's clothing, it comes in sizes 6 to 14. The internal tube of a "SpeediCath Compact" is a slim, light green, semi-flexible, saline coated, silicone 'pen.' Its regular or intermittent use dilates the urethra and drains retained urine through small holes at its tip. Learning to self-catheterise necessitates a patient urology nurse, and I had two, Daphne and Kate, to teach me how.
Until recently, urethral catheters for both sexes were long, rigid plastic tubes in clear packages: tricky to transport and to use, either comfortably or discreetly. And before plastic, curved metal rods called bougies were used to stretch urethras and hook stones. An exhibition of these torturous looking urological instruments on the Outpatients Podium at UCHL demonstrates how far we have come and inspired me to write this article.
Presently, urethral stricture affects about 1 in 100,000 men worldwide and 0.5% of that number in females. But numbers are rising due to stress, iatrogenic illnesses (exacerbated or caused by medical intervention) and cancer. Strictures occur when there is narrowing on some point of the urethral tube. There may also be scarring and inflammation around the affected area that varies from 1cm to the entire urethra: 4cm in women 8cm in men. Symptoms of urethral stricture include hesitancy, straining, a weak or split stream and incomplete emptying of the bladder. (Box 1 describes the surgical options available).
My challenges of bladder stones, a urethral stricture and urinary retention have often been stressful and frightening. I have learned to overcome many of my fears by taking responsibility for my healthcare and by refining my approach to disease. It is a balancing act because every time a catheter is used there is a risk of introducing infection into the urinary tract and causing further trauma to the urethra. But, urine retained in the bladder quickly becomes a breeding ground for bacteria. So, I catheterise somewhere between twice a day and two to three times a week depending on the quality of the urine - either clear or cloudy - and the narrowness of my urethra.
Alternatives to antibiotics?
Yet another challenge of bladder stones and urethral stricture is the almost constant round of urine infections, as a result of which I am often caught in a cycle of antibiotics, taking a toll on my immune system. After many years use, it seems I am resistant to all but one antibiotic, Augmentin (Co-amoxicillin). And, I am not alone. On outpatient visits to my consultant at UCLH, women in the waiting room tell me that they are taking antibiotics every day to keep their urinary problems at bay.
Desperation about antibiotic resistance has led me to turn to specific traditional remedies from the Homeopathic Materia Medica, most recentlyunder the guidance of the Royal London Hospital For Integrated Medicine (RLHIM). A helpful remedy for keeping infection at bay is Argentum Nitricum 30 (silver) . Silver has been used for centuries to ward of disease. A recent 12 month study of uncoated and silver-coated urinary catheters at the University of Medicine, Baltimore, the University of Virginia Health System, Charlottesville and the University of Pittsburgh Hospital, revealed the risk of infection declined by 32% among patients using silver coated catheters . The silver subset of patients also had a decreased length of hospital stay and a decrease in morbidity with estimated savings in hospital costs of nearly $500,000.
Also indispensable is a daily pot of what I call my "wee tea." This delicious decoction is tailored for me by the University of Middlesex Herbal Medicine department and contains a blend of Uva-ursi (Arctostaphylos) Scullcap (Scutellaria barbata), Pulsatilla (Pulsatilla Nigricans), Sage (Salvia officinalis), Damiana (Turnera diffusa), Horsetail (Equisetum arvense), Cramp Bark (Viburnum opulus), Plantain (Plantago major) and Cornsilk (maize). And, I have recently made my own indigenous discoveries for flushing bacteria from the bladder growing abundantly in my back garden: Herb Robert (Geranium Robertianum) a hairy stemmed plant with tiny pink flowers makes a delicate brew and so does the common or garden nettle (Urtica dioica).
Other supportive adjuvants, including an apparently unconditionally loving and non-judgmental NHS, are practices that enable relaxation and serenity. A course in Autogenics (a form of self-hypnosis) at the RLHIM has helped me to be mindful and present. Being in nature, reflexology, massage, yoga and good nutrition all help. Although some of these medicinal treatments are decried by the hardline scientific community, I can only report on what works for me and state that I place value on and faith in both mainstream and holistic medicine systems. The opinion of those who marginalise fringe medicine is irrelevant here, because the perspective is mine.
Learning to trust and let go
My earlier experience at age 21 of uterine tumours that were misdiagnosed has left me understandably anxious about some NHS practices. My type of cancer is a rare, but highly treatable one, if proper procedure is followed. Unfortunately, repeated operations by an overzealous gynecological surgeon ruptured my womb causing the tumours to spread around my body. However, the life-saving surgery performed by a skilful and responsible consultant, who then followed protocol of referring me to Charing Cross Hospital for low-dose chemotherapy and weekly lumbar punctures led to my full recovery, and a debt of gratitude to the NHS.
Ultimately, I suppose that writing such a personal article has helped me to re-evaluate my health condition. But it is also intended to share the importance of asking for what you want from the medical profession. If it's a referral to a specialist hospital or department, a more in-depth test, an X ray, an MRI, or a second opinion then you must firmly ask your GP for it. Equally, if you feel that a particularly operation or medication is not appropriate for you, then say so. Asking for help does not come easily for many of us and learning about the available options can be a difficult process, but we all need to start practicing self-recovery now. When you learn to communicate your concerns effectively, it helps both you and your medical professional to take the right approach to treatment.
In truth, my experience with bladder stones, a urethral stricture and cancer has taken me down roads that I could never have anticipated. The surprising upside to my multiple health crises is that a whole new dimension to my problems has been revealed. It's literally been a lesson in letting go! On one hand, there are the human, practical aspects of managing any chronic condition that brings up a myriad of fears. On the other, there is a sort of surrender in knowing that you are taken care of whenever you hand over your concerns and allow calmness, trust and healing into your life. And what's more, the process of self-care and enjoying looking after one's body is a nurturing and restorative one.