The agony when things go wrong down there

Extended agony ... it took Vanessa Watson years to discover the cause of her pain.
Extended agony ... it took Vanessa Watson years to discover the cause of her pain.

Seven years ago Vanessa Watson, a Perth mother of twins, found herself spending almost six months lying on her back with no knickers and legs in the air. That was the only way she could avoid the broken-glass sensation she felt when anything touched her external genitals.

She'd had years of not even being able to sit down due to overwhelming, burning pain in the genitals, bowel and bladder and was bedridden for a year.

''I couldn't sit, couldn't have sex,'' she says. ''I had rectal spasms which felt like hot pokers and needed icepacks to cope with my constant pain in the vulva. My kids and my husband were the only thing that kept me going.''

Watson is a gynaecological nurse and for years did the rounds of the Perth medical establishment trying to find out what was going on. Googling her symptoms, she stumbled on the answer herself - pudendal nerve entrapment - but it took a year before she managed to convince her doctors to give her the test proving this was the case. She ended up coming to Sydney for surgery at one of the new clinics now dealing with such conditions.

There are huge numbers of women like Watson, searching the country for help with ''things that go wrong down there''. That's the phrase women sometimes use to refer to problems in the vagina and vulva (the external genitals) which cause so many women extreme pain and embarrassment. Now, finally, the medical profession is waking up to their plight. Vulvar clinics are gradually opening up across the country, staffed by specialists - gynaecologists, dermatologists, physiotherapists - newly branded ''vulvovaginal'' experts trying to solve the mysteries causing so many women such private misery.

One such expert is Deborah Coady, a New York gynaecology professor, who estimates up to one in five women struggle with painful sex at some point in their lives. Boston gynaecologists Bernard Harlow and Elizabeth Steward surveyed nearly 5000 women and found 16 per cent had experienced chronic burning or pain in the vulva that lasted at least three months. In the past five to 10 years, there's been an explosion in knowledge about vulval and vaginal pain, both causes and treatment, but most doctors aren't up to speed with these new developments. It turns out many problems are mighty complex, requiring the co-operation of various medical specialists to sort them out.

For example: Most women will have experience with thrush, the irritating yeast infection that causes itching and vaginal discharge. But if that isn't properly treated or the woman has recurrent infections, this sometimes leads to inflamed nerve endings and pain at the opening of the vagina. This, in turn, can cause spasms of pelvic floor muscles, and even compression of the pudendal nerve, the main pathway linking the vulva, the pelvic muscles and organs. The result can be severe, chronic pain.

''Chronic pain in the vulva or vagina can be the driver that leads to physical and chemical changes in the nervous pathways making the pain even worse,'' Adelaide pelvic pain specialist Susan Evans says. ''This can mean the pain continues even when the original cause of the pain has been treated. Pain persists because the nerves have 'learnt' to transmit pain signals.''

Evans is one of only two gynaecologists in Australia who is also a pain specialist. The other is University of NSW gynaecology professor Thierry Vancaillie, who runs the Women's Health and Research Institute, which deals with many of these complex vulvovaginal issues. Their clinic sees more than 300 women a year with undiagnosed pelvic pain, some of whom, like Watson, travel across the country for the unique treatments on offer - such as surgery on pelvic nerves or Botox injections for painful spasms or tension in pelvic floor muscles, the muscles that support all the structures in the pelvis.

A whole host of factors can cause pain in these pelvic muscles, including congenital high muscle tension, orthopaedic issues such as hip dysplasia, childbirth-induced injuries to the pelvic floor, repetitive strain from sports such as biking or skiing, painful bladder problems and tensing in response to sexual pain. Deborah Coady's excellent new book, Healing Painful Sex (co- authored by Nancy Fish) points out research on many of these areas is very recent, which is why it is such a struggle for women to find proper help.

Vancaillie's team includes a physiotherapist, to teach women to relax these muscles, and an acupuncturist. ''This works well for women recovering from birth injuries,'' he says.

Many women with sexual pain spend years trying to find out what's wrong with them - the women attending Vancaillie's clinic average four to eight years before being properly diagnosed.

Jenny Towell's story is typical. The 67 year-old Lakes Entrance woman visited her GP over two years complaining about her painful vulva, which ''never felt quite right'' following her hysterectomy. ''It was constantly itchy, dry and sensitive.'' In response, her doctor did not examine her but simply suggested she use treatments for thrush and soothing ointments. It was a female locum who finally conducted a proper examination and immediately picked that Jenny had lichen sclerosus, a serious skin condition that left untreated can cause painful scarring that totally covers the clitoris, and other organs.

''I was horrified when I realised where this could end up if left unattended,'' says Towell, who is recovering using steroid ointments.

Vancaillie says very few gynaecologists, let alone GPs, have a good knowledge of sexual anatomy. ''If you asked a gynaecologist about which nerves stimulate the various structures in the pelvis, most would have great difficulty telling you,'' he says, adding it presents a real handicap to diagnosis and treatment.

Take the clitoris. It's only in recent years the true complexity of problems associated with this most sensitive of genital organs have been revealed. We now know that a chemical imbalance in the brain marked by high dopamine levels accounts for the distressing problem known as Persistent Genital Arousal Disorder where a woman feels perpetually aroused - a real nightmare for the women concerned.

There are other issues causing trouble with the clitoris, as Sydney woman ''Jane'' (who doesn't want her identity revealed) discovered when she was a 29-year-old newlywed. Out of the blue she started feeling exquisite, unrelenting pain around the clitoris. ''It felt as if someone was slicing the tip of the clitoris with a razor blade. It never stopped, I couldn't wear underwear, couldn't wash or wipe myself, just couldn't function.''

Jane sought help from doctors, acupuncture and Chinese herbs before she finally turned up at her parents' home announcing that she'd kill herself unless someone helped her. She ended up in the hands of a bevy of experts at one of Sydney's major hospitals who tried various remedies, some of which made the problem worse, until finally it was discovered she had a collapsing disc putting pressure on the base of the pudendal nerve connecting to the clitoris.

She used Pilates to realign her back, and by following a strict diet, reducing stress and using meditation she managed to control the chronic pain syndrome resulting from this condition.

Such obscure problems are fortunately rare in comparison to the more common causes of pelvic pain such as endometriosis, chronic thrush infection, bladder pain syndrome, damage through labour, pelvic-muscle spasm, and cancer.

Evans also deals with a steady stream of young women whose pelvic pain stems back to early problems with painful periods leading to a sensitised pelvic nervous system. Here too, proper treatment may require experts from different specialties to work together. ''The vulva is the frontier where the specialties meet,'' said Ross Pagano, a Melbourne gynaecologist speaking at the Australian and New Zealand Vulvovaginal Society, the new professional body bringing together the experts interested in this vital area of women's bodies.

Sadly it's taken many years of strenuous effort to get professionals together and persuade them to take seriously the problems suffered by women in their nether regions.

Tanja Bohl, a Victorian dermatologist and vulva specialist, suggests this is now happening because women, often educated through the internet, are demanding answers. ''They are no longer prepared to be fobbed off and so we have had to raise our game,'' she says, mentioning the role of women's support groups in galvanising the professions to take action.

In many countries, including Australia, there are now support groups with excellent websites covering many vulvovaginal problems (you can find them on my website - The main push has come from the indefatigable Kath Mazzella, who runs the Gynaecological Awareness Information Network in Perth. It was at a GAIN meeting that Vanessa Watson first heard her problem being discussed. ''I heard women describing my symptoms and my life!'' At the meeting she also met Vancaillie who carried out her surgery.

Mazzella is planning awareness days across the country this year under the stirring banner - Viva la Vulva!

Bettina Arndt is a sex therapist, writer and social commentator.

This story The agony when things go wrong down there first appeared on The Sydney Morning Herald.