About
“Why?”
This was one of the first questions I asked when I was diagnosed with an incurable disease of the vulva called lichen sclerosis. Why had I not heard of this disease before?
Sitting at the side of the specialist doctor’s desk there was a diagram of the vulva, laminated and stuck on top just near where I was sitting. What an intricate, delicate design this part of our anatomy is, expanding out from the mons pubis to incorporate the pelvic floor and hips. Anything that is not working together in this part of the body affects our movement, restricting the body to move freely and with ease
Looking closely at this diagram my doctor said in most cases when diagnosing and treating vulva conditions like mine she had to give the client a vulva anatomy lesson. Commonly referred to as the vagina, the internal canal leading to the cervix, uterus and ovaries, the vulva is often an ignored part of the body. But why?
As we sat there and I asked questions, my doctor turned to me, stopping the conversation to ask, what is your background? I immediately shrugged and said, “just admin”. She prompted me by her tone and words to consider the depth of questioning in which I was conversing with her and could hardly help but refer me to a book written for clinicians to support them in understanding how to diagnose the varying diseases that may be presenting to them called ‘The Vulva’.
Within the medical professions the vulva has been a largely unknown area of the body also with many misdiagnoses or not taking what is presented as being more serious and requiring intervention as early as possible. Such is the case with lichen sclerosis, often left undiagnosed for years.
Over the past 10 years of having received my own diagnosis I have been on many website forums and seen a growing number of women diagnosed with this disease. There are more doctors out there aware, and this awareness is growing. There are also some great support groups educating women how to look after this very delicate part of the body, particularly after receiving a diagnosis, in this case lichen sclerosis.
The Pelvic Floor
My questioning however has gone way deeper and broader, not only looking at my own diagnosis, to include the surrounding pelvic floor area. Pelvic floor health has also grown in the last 7 or so years and is becoming a commonly prescribed method to support an array of issues in this area of the body. Again, all great supports to assist the functioning of this part of the body.
But there is more …
Being of menopausal age I have also had women in my surrounding circle of influence have laser treatment to support vagina atrophy. In my case this therapy was also used to help treat vulva lichen sclerosis, bringing more elasticity to the skin to support pelvic floor health and release tightness around the vulva. Again, all super supportive for functional pelvic floor health.
As I began my own exploration into discovering more about lichen sclerosis, connecting with women on lichen sclerosis website forums for example, and gradually becoming more comfortable with sharing about having lichen sclerosis without any shame, I was finding I was hearing about other issues people were having in the vulva and vagina area, not just lichen sclerosis.
And thus, VV Health has been born.
Here you will find a collective of experiences from not only my own journey from being diagnosed with lichen sclerosis but from what I have observed and discovered through connecting and conversing with others. I have realised, in the process of bringing this website together just how much sensitivity we have around our pelvic floor region.
Not everyone wants to write a personal experience and share it publicly however I have discovered there are so many common themes that are global by nature and not specific to country, culture, gender or race, and therefore there is a lot that can be shared here without identification. And so, I too will write anonymously, not by choice but in order to reveal what is likely more commonplace and not as rare as one might think.
Originally, when I first started to investigate into what lichen sclerosis is, for example, it was mostly considered something that affected women of menopausal age and young girls before reaching puberty. As the years have ticked along more and more voices were coming on the web forums from women of all ages, debunking the myth completely.
Whilst there is much more information available about the condition and treatments, there is much more to share and express from how we are feeling within ourselves. My experience of working with the medical profession has been fantastic in most cases, with a willingness from them to support and refer on for emotional support when needed however the personal and intimate aspects of our day to day living with our vulval/vaginal health was for me what has been missing.
Warmest,
A Lichen Sclerosis Awareness Advocate