Anonymous’ story

I was twenty five when I was diagnosed with lichen sclerosis (LS), shortly after giving birth to my daughter. My obstetrician was the first to notice anything unusual about my vulva.

It has not been proven, but general consensus is that LS is an autoimmune condition. LS can run in families and is much more common in females than males. It usually affects the vulva and often also the anus. Only rarely does it affect other parts of the body. Onset is most common in postmenopausal women but can occur at any age, and it is a lifelong condition. Childhood onset often begins around age five. LS can be asymptomatic but usually causes intense itching. It presents as white patches of skin, sometimes with small purple spots. Over time, if left untreated, LS can change the structure of the vulva and increase the risk of vulvar cancer, which is why it has to be monitored regularly, with at least six monthly appointments, and treated thoroughly with steroid ointment.

You can find more information about LS on a clear and reliable website called CareDownThere, founded by Dr Gayle Fischer and Dr Jennifer Bradford, members of the Australasian College of Dermatologists and the Royal Australian and New Zealand College of Obstetricians and Gynaecologists.

When I received my diagnosis, the gynaecologist drew a diagram for me and explained that I had no labia minora. A lot of people with LS notice a reduction in the size of their inner labia; mine had disappeared altogether by the time I was diagnosed. As a teenager I checked my breasts for lumps but, (as I have largely asymptomatic LS, without itching), I never knew that I should check “down there”. I wish I had known, before I lost a private and pleasurable part of my body. Not even my GP noticed anything during my pap smear and didn’t ask me any questions when I found the procedure highly uncomfortable and was barely able to relax enough to get through it – at the time I felt guilty for being an inconvenience.

Initially, I was treated at the hospital where I gave birth, but in doing my own research I found a dermatologist specialising in vulvovaginal disorders and requested a referral. She examined me and knew immediately that my current treatment was not sufficient to keep the condition under control. She could see where I had been experiencing splitting during sex and recommended surgery to divide a fusion of skin that had left the opening to my vagina about half the size it should have been. Despite having been seen by numerous gynaecologists before this, no one suggested surgery. I was told to use dilators to stretch so that sex might become less painful.

My surgery went well, though it was confronting to see my vulva looking so “sliced open”. It has made a significant difference – for a period of over a year I was barely able to have sex at all, due to the reduction in size of my vaginal opening and involuntary muscle spasms. I am currently seeing a physiotherapist to help me relax my muscles that have grown tight in response to the years of skin inflammation and uncomfortable/painful penetration.

I think the fact that LS is a predominantly female disease, often affecting older women, in the part of her body that relates to sexual pleasure – an area so taboo I don’t think I even knew the word for vulva prior to my diagnosis – has contributed to a real lack of understanding, awareness, and knowledge in both the medical and general communities. It is an unseen and not-talked-about disease.

For a long time I felt ugly, incomplete, and abnormal. I was a new mother and, with my beautiful, healthy baby, I felt guilty for being so desperately sad. I wasn’t sure if my vulva was a valid thing to grieve over but I did feel grief. It felt so lonely and isolating to be dealing with something I could not speak of, except to my closest friends.

I still sometimes struggle with feeling less attractive and womanly because of what I know is missing. However I am also empowered. I know the names for the parts of my body that were before just “down there”. I know my clitoris is fine and I intend to follow my treatment plan. I believe that a woman should know and understand her body, without shame, and that no part of it should be a secret from herself. Every woman should own a mirror.

I know one other person with LS who was diagnosed shortly after me. She had reason for concern, asked her GP to examine her, and the GP declined, saying that it was so very unlikely and they should wait until summer to do a full body check then. I think this was unacceptable. She felt the need to see a different GP who immediately referred her to the dermatologist.

I hope that in the future GPs will more readily identify the signs of LS.

I hope that more doctors will realise the significant psychological and emotional distress that is often associated with vulvar conditions, and that patients won’t have to experience additional distress from incorrect information, or insufficient support.

I hope that women will feel empowered to know their own vulva, what is normal for them, and if something changes. And if women experience any kind of discomfort I hope they feel confident asking questions and asserting their right to be heard – and even seen.

If you would like to be better educated about the vulva, as well as
check out – a colourful website by Women’s Health Victoria with diagrams and a photo gallery, so you can learn what’s what and see how much variation is normal.

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