Angry woman giving the finger

Lichen Sclerosis and Childhood Sexual Assault

[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 sclerosus

Jenny 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

Autoimmune-related anemia
Type 1 diabetes|
Alopecia areata

Other factors that can increase your risk include:
A history of sexual abuse
A history of the condition in your family

Cedars Sinai – Lichen Sclerosis

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

2 thoughts on “Lichen Sclerosis and Childhood Sexual Assault”

  1. Thank you ever so much for sharing your story. I am also a child sexual abuse survivor and it really saddens me that this has been done to us. I have not got the same physical sequalae as you but I resonate with the fact that it seems that no doctor is remotely trained to understand our health problems. For me it is unnerving but I am learning to keep my cool and comunicate my needs. I send you a huge virtual hug! (If you allow me)

    1. sworddancewarrior

      Thanks Monica,
      I totally get that. Yes, doctors get pretty hardened about this stuff, or just don’t want to deal. I don’t want or need to go into details, but I do sometimes need accommodations, and learning how to ask for that while maintaining my dignity can be difficult too. Sorry I didn’t see this comment right away, it got buried in a bunch of spam commenters. I’m happy to report that my LS (which is probably lichen planus, a related condition) is a lot better. I use a strong steroid ointment twice a week (which I will have to do for the rest of my life) and it’s kept manageable most of the time. It’s nice to have sensations other than pain down there now. Survivors often get a lot of autoimmune diseases – there’s been research done on it – if you’re interested you can look at the ACE study. ACT stands for Adverse Childhood Events, and the results were that the more serious harm incidents a child has, the worse their physical health in adulthood – cancer, autoimmune diseases, heart disease, diabetes etc… even after controlling for lifestyle factors like diet and substance use. SDW

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