[about the image – no it’s not me, but I am pissed off no one told me what I needed to know about Lichen Sclerosis and let it get this bad. There aren’t a lot of triggers in this post, except one brief mention of a sexual injury having occurred. ]
So a few years ago I finally found a specialist to talk to about my chronic multi-decade vulvar pain and itching, right at the site of where I’d been injured in a sexual assault. I was diagnosed with ‘a chronic inflammatory skin condition’ and prescribed a strong steroid ointment to put on it (but not too much!) and that was it.
Eventually I found a good doctor who helped a bit more. She named it as Lichen Sclerosis and told me I didn’t have to be quite so sparing with the ointment. She told me to use it twice daily until my symptoms were under control (what would that even mean if I’d literally never had a vulva that wasn’t sore and itchy?) and then once or twice a week ‘as needed’. [Here’s the story of all the hurdles I went through to get help for my injured vulva]
It’s hard to talk about your vulva with doctors, y’all. Especially when you might end up crying because you know in your heart that it is all related to the violent sexual assault that hurt the exact same place before the symptoms first started.
Well, I’ve found proof of that. Apparently it is also a known thing (despite the denial of the gynecologist I asked this exact question) that sexual injury / sexual trauma survivors get Lichen Sclerosis. Here are some good sources below.
There was a high rate of coexisting sexual abuse with LSA, possibly due to genital trauma.Lichen sclerosus et atrophicus and sexual abuse.
Some authors have speculated that the trauma and increased infection related to sexual abuse may even act as a trigger to developing lichen sclerosusJenny Powell, specialist registrar in dermatology, The Churchill, Oxford, UKChild sexual abuse enquiries and unrecognised vulval lichen sclerosus et atrophicus
case reports of LS coexisting with child abuse or resulting from trauma associated with repeated sexual maltreatment have been documented.Vivian Wong MD, PhD, Kudakwashe K. Maloney MD, MPhil, Belinda Tan MD, PhD, Susan Burgin MD, Mary Spencer MD, Ann Lenane MD, Sireesha Reddy MD, Amy Swerdlin MD, Manasi Kadam Ladrigan MD, Carol Berkowitz MD
Who is at risk for lichen sclerosus?
You may have a greater risk for lichen sclerosus if you have an autoimmune disease such as: Autoimmune-related thyroid disease
Type 1 diabetes|
Other factors that can increase your risk include:Cedars Sinai – Lichen Sclerosis
A history of sexual abuse
A history of the condition in your family
This was a particularly good source for info about Lichen Sclerosis (see link below)
People who are genetically predisposed to LS may develop symptoms after experiencing trauma, injury, or sexual abuse.People who are genetically predisposed to LS may develop symptoms after experiencing trauma, injury, or sexual abuse.
I was horrified to learn that unmanaged Lichen Sclerosis causes ‘fusing’ which is where your vulva – labia, clitoral hood, and even the vaginal opening grow together. Women with lichen schlerosis if not adequately managed get smaller and smaller labia minora (or could lose them entirely), get fissures on their vulva and vaginal opening and can lose access to their clitoris which gets ‘burried’. This has happened to me. I’m trying to reverse it. There are women on the online support group for LS that I’m on who have reversed fusing, but the medical writing often says it’s irreversible. The method most women use is to use clobetasol ointment (about a finger-tips worth spread everywhere that is sore and itchy) twice a day till nothing is sore or itchy and then once or twice a week forever to keep it that way. We also use bidets or a water bottle to rinse after peeing (urine irritates it and may even make it worse) and put a greasy barrier ointment (like vaseline, cocounut oil, emu oil etc… ) on it twice daily. Some women swear by regular sitz (or normal) baths with baking soda or borax (a mineral) in it to help with the unfusing, followed by massaging the ointment into place.
I’m doing all of it. I’m not giving up. I’m not losing my body or my sex life to my abuser any more.
It makes sense, aside from the vaginal trauma, that survivors would get LS, because it’s an autoimmune inflammatory condition. Autoimmune conditions are more common in people with high ACE (Adverse Childhood Experiences – for example we get set up to have higher inflammation in adulthood, and a lot of other physical (and of course mental) health problems.
More specifically, childhood trauma has been suggested to increase vulnerability to several psychiatric disorders, including depression,3 anxiety,4 psychosis5 and post-traumatic stress disorder,4 as well as several chronic physical health problems, including rheumatoid arthritis, cardiovascular disease, lung disease, metabolic syndrome and cancer.Childhood trauma and adulthood inflammation: a meta-analysis of peripheral C-reactive protein, interleukin-6 and tumour necrosis factor-α
Oh, and by the way LS puts you at slightly higher risk for vulvar cancer – so it should be examined by a doctor every 6 months. I have never had a doctor offer to do that.
We need to do better helping survivors of childhood sexual assault. And we need to do better for women with Lichen Sclerosis – the doctors at least need to tell us about the risk of fusing and cancer, and how and why to keep it completely under control at all times. There was even a study that said that women who stayed on top of the ointment and kept our symptoms well managed with steroid ointment (clobetasol) were at lower risk for vulvar cancer than those who partially managed it. This would have been a good thing to know.
PS: men get LS too – it’s often treated by cirumcision.
Photo by engin akyurt on Unsplash