Cystitis: Love doesn't need to hurt

We don't have honeymoons anymore, only holidays with sex, and such changes in social behaviour have mostly consigned this earlier sexual tradition to history. Until the 1940s, when sulphonamide drugs and early penicillins appeared, the honeymoon could be and often was a precursor of death. Marriage vows – "Till death us do part" – were never meant to be an oath for 60 years or more but tuned instead to the dreadful rate of death in childbirth.

We don't have honeymoons anymore, only holidays with sex, and such changes in social behaviour have mostly consigned this earlier sexual tradition to history. Until the 1940s, when sulphonamide drugs and early penicillins appeared, the honeymoon could be and often was a precursor of death. Marriage vows – "Till death us do part" – were never meant to be an oath for 60 years or more but tuned instead to the dreadful rate of death in childbirth.

Perineal hygiene was utterly inadequate and the massive bacterial presence on unwashed bottoms and hands during sex and birth kept populations well under control. Kidney disease, as cystitis was formerly called, was known in every home.

I went on a honeymoon, but I didn't really have one. Every 8 August, two days after my wedding in 1966, comes the worst anniversary of my life, a life-changing date, when all aspirations sank and happiness turned to grief. Passing urine began to sting, then hurt and then bleed. At the end of 8 August, I was convulsing, semi-conscious, screaming and incontinent; the lavatory was full of blood. On the 9th, I was carried with a high fever to a doctor who pronounced in French that I had " la cystite": " Pas de sex, pas de nageant, pas du soleil, pas des alcool, madame. Beaucoup des antibiotiques." There were definitely plenty of antibiotics, administered by huge injections into sore buttocks twice daily, and an oral urinary antiseptic that caused blue urine.

Just bad luck? Not a bit. This was only the first of seven years of such attacks, every two or three weeks. Cystitis stopped my career as an opera singer, nearly ended the marriage, cost me and the nation thousands of pounds in drugs and brought me to suicide day in 1971 when the third "sure-fire cure" operation failed. The "jinxed" wedding dress got chucked into the dustbin and the pink lace negligee went a week later.

"You'll just have to learn to live with it," volunteered my neighbour at 7am over the fence as I clutched a bottle of codeine. At 5pm, still clutching the codeine, I sat in another Harley Street surgery hearing another doctor's verdict on my misfortunes. "You've had everything the medical profession knows, Mrs Kilmartin. Try passing urine after intercourse, it may work for you as it did for my next patient. She's had cystitis for 30 years but now her husband comes home for lunch and sex every day."

What intercourse? There now was no sex – I was too sore. But at least the suggestion was different from drug-taking, and a marital appointment was made to have technical sex. I passed urine after, and went on to manage three months without an attack, but it wasn't over, just less frequent. It occurred to me that I was doing this for myself, the doctor wasn't involved; perhaps other self-help ideas existed.

In May 1971, I founded the once famous but now extinct U&I Club for similar sufferers with a magazine aimed at pooling ideas for self-help. It was a runaway success. It went to 10,000 members; interviews for press and TV were part of daily life for years. Soon I was giving lectures up and down the country and took prevention and self-help into many hospitals. Two major breakthroughs in the prevention and management of cystitis happened by 1977.

First was the "three-hour management of an attack" procedure (see box), which quickly eases pain, protects kidneys from rising infections and costs nothing. Then bottle-washing, discovered in Nigeria because of polluted water supply, brought the discovery of efficient perineal cleaning. By 1976 my hated attacks of cystitis had all but disappeared. I can't remember the last one. I bottle-wash every day after a bowel movement and before sex so that bacterial presence is depleted, and cool down afterwards with cold water to decrease swelling. Millions of women follow this simple prevention plan now. Before self-help treatment, misdiagnosis and mismanagement led to lengthy suffering: tranquilisers, psychiatric treatment, and marital dysfunction were commonplace.

Now, the percentage of patients presenting at the GP surgery because of cystitis is down from a whopping 10 per cent of all weekly consultations to around 4 per cent. Self-help is the answer – unless there are transferred bacteria from a contaminated foreskin, hormone decline in older years, or other medical problems.

I abhor cranberry juice and think its link with cystitis to be a con. A few old ladies in a nursing home participating in a study isn't my idea of science; they may have been washed more often, given more to drink and received increased care whilst participating because they had become "important"! If you have dirty hands, you wash them with soap and water, as you should a contaminated perineum. But once bacteria have invaded the bladder wall, cranberry may help some people who have colostomy bags or are too old to wash properly.

Proper hygiene is essential to the management of cystitis. Female perineums are contaminated 24 hours a day with faecal residue. Haemorrhoids, or the failure to wash after a bowel movement, will harbour and increase bacterial presence.

Cystitis is largely a Western affliction, and there are good reasons why. Muslims are told in the Koran that both partners should wash genitalia before intercourse. They traditionally wear loose clothing, use fewer chemicals and men are circumcised. Muslims generally don't drink and the women are altogether sexually healthier.

The medical treatment of cystitis, urinary infection, has not changed since the 1940s: test urine, administer antibiotics, look at the kidneys, do a cystoscopy and dilate the urethra. My research and books now provide alternatives to the physical damage that follows scarring from every attack and from medical intrusion.

Thirty one years of campaigning have not softened my lost honeymoon memory, my hatred of cystitis nor my oath to take revenge on it. As long as women are born, millions will suffer at some time in their lives. But help is out there and no one needs to be tranquilised, traumatised or troubled in the 21st century by recurrent cystitis.

'The Patient's Encyclopaedia of Cystitis, Sexual Cystitis and Interstitial Cystitis' by Angela Kilmartin; www.dspace.dial.pipex.com/angela.kilmartin

How to avoid cystitis – and what to do if you have an attack

I could have had a honeymoon if I had known these holiday tips:

1) Wash using bottled water before sex and pass urine afterwards

2) Space your sex sessions to reduce natural soreness

3) Make sure he showers and cleans all his bits thoroughly

4) Avoid swimming in crowded pools

5) Limit or stop alcohol, coffee and sugars

6) Drink plenty of water

7) Don't get dehydrated

8) Don't use man-made chemicals in the shower or bath, only plain white soap

What to do if you suffer an attack of cystitis:

1) Take a urine sample to a reputable lab or GP

2) Drink half a pint of water every 20 mins for the next three hours

3) Take Cystopurin or a teaspoon of bicarb each hour to alkalanise the urine

4) Take 2-3 strong painkillers

5) Tuck a covered hot water bottle between the legs and one against the back