Introduction
In today's post, we are doing something a little different – we have a guest post! I was sipping coffee one morning at work when I got an email from someone with the subject heading being, “lichen sclerosus and trauma”. This email was inquiring whether I knew of any studies that explicitly investigated the relationship between trauma and lichen sclerosus. I responded that to the best of my knowledge, there wasn't much. At best, some papers briefly mention there could be a connection and leave it at that.
So when she expressed a desire to share her story and open up a dialogue for reflections on the connections between trauma and lichen sclerosus, I was all for it. As someone who also comes from a background of trauma, I definitely think this is an important topic. Today, Jen will be sharing her life story with trauma and lichen sclerosus.
Content/Trigger Warning: This blog post includes mentions of sexual abuse, emotional abuse, and religious abuse. Please do not continue reading if this doesn't feel supportive to your journey in this moment. Honor your body and where you are at.
Without further ado, here is Jen's story.
L.S. as a L.ife S.tory
The Onset of my Lichen Sclerosus
When I started noticing the first symptoms of LS in my early 30s, I was in the midst of a highly traumatic situation. I had recently moved to a new country, my husband was showing signs of serious mental health issues, and back home on the other side of the world my brother had just died suddenly, my mom was facing death and my sister was losing herself to addiction.
Becoming a Psychologist and Working Through my Childhood Trauma
In my late teens when I started studying psychology at university, I swore to myself I was going to heal from the traumas of my childhood – which included severe religious trauma, repeated sexual abuse, and ongoing emotional neglect and abuse at home, among other things. I promised I would make a better life for myself as an adult. I left religion, confronted my parents, started therapy, became a successful psychologist, and read everything I could on how to be a functional, happy adult.
A Curveball in my Healing Journey: New Trauma
Then I got coerced into an emotionally abusive marriage. It’s a long story, but suffice it to say that religious expectations (even though I was no longer religious) played a huge role. It’s hard to explain just how difficult it is to leave a fundamentalist religion. Intertwined with emotional abuse, sexual pressure and gaslighting were a big part of the marriage. I suffered a lot and finally got the courage (and enough support) to leave, and promised myself once again I would make a better life for myself.
You probably know where this is going, right? A few years later I remarried to a man who seemed the opposite of my parents and my first husband. And then the abusive behavior began. Fortunately, though I didn’t understand it then, my second (and current) husband was not a malignant abuser. He was suffering from serious and undiagnosed mental illness and trauma that caused him days, weeks, and sometimes months of dissociation. When he was dissociated, he was selfish, negligent, and controlling, and exhibited a form of intimacy anorexia that destroyed any chance of a healthy sexual relationship.
How My Husband's Trauma Impacted my Own Trauma and Lichen Sclerosus
As his mental health issues worsened, I felt like my whole life, sexuality and my female body were linked to abuse and neglect. I’ve only mentioned two of my partners, but there were others. And it wasn’t just my partners. It was my parents and the church, and the culture I grew up in. It was the men on the street, at the workplace, everywhere.
I had spent 30+ years trying to defend my basic body rights and trying to create a loving sexual relationship in contexts where I was being actively destroyed by someone else’s trauma. No matter how hard I had tried to protect myself and find safety, I kept ending up back where I started. I was exhausted and the female part of my body was refusing to continue to live in such conditions. As a psychologist, and as someone who knew about the mind-body connection to trauma, it was obvious my LS was literally my life story as told by my female body.
Why Are There Hardly Any Mentions of Trauma in the Literature on LS?
I was surprised to see that trauma was barely addressed in the genesis of and treatment considerations for LS. There’s usually a quick mention that it can be caused by sexual abuse in childhood, but the discussion goes no further. My own diagnosing doctor showed no interest in what I was going through emotionally, personally, or relationally, nor my history of sexual abuse. He gave me steroid cream and sent me on my way.
I searched online forums and found only discussions of treatments, oils, creams, and grief. No one was discussing trauma. Was I the only one?
A Call to Raise Awareness About Trauma and Lichen Sclerosus
That’s why I wanted to open up this discussion: to invite anyone else who feels their LS tells their body’s story of trauma to share their experience. I felt it might help someone to hear my story, and for others to be able to share theirs.
For completeness, I’ll mention here that not long before I started experiencing the first symptoms of LS, I also experienced a physical trauma to my vulva and vagina. It was a relatively minor injury, but in the context of everything else I’ve shared above, it was very emotionally upsetting. I include that because I have heard many women mention physical trauma to their labia or vagina, such as during childbirth, which seems to have preceded their first LS symptoms. I’m interested in all traumas, physical and emotional, which preceded and could be a factor in the genesis of LS symptoms.
How Healing Trauma Helped Calm My Lichen
Lastly, I want to add a note about what has happened since my diagnosis. My husband has finally found appropriate mental health support and as I have healed from the religious and sexual traumas (among other related traumas) I went through both as a child and as an adult, my LS has healed significantly. The only times it flares is when my husband has a phase of dissociation that creates stress between us. Fortunately, those episodes are resolving more quickly as he heals his own traumas.
Conclusion
I'm so humbled by Jen's vulnerability in sharing her story. We would love it if you left us a comment in the comment section below letting us know if anything resonated. What parts of Jen's story resonated? Have you suspected a connection between trauma and lichen sclerosus? Is this something you'd be curious to explore? Let us know! You can also message your comments to me personally.
*TLLC acknowledges that not folks with vulvar lichen sclerosus are women.
Reach Out to Me
If you want to chat with me about dilators or Lichen Sclerosus, I can be reached at:
Instagram: @thelostlabiachronicles
Facebook: @TheLostLabiaChronicles
Email: lostlabiachronicles@gmail.com
Virtual Meetups
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At the age of nearly 90 in October ! I suffered a bad flare up of my LS Really bad and I was looking at finding help as fast as I could.
I use Naturopathic healing for all my stresses Having moved away from medicine many years ago
I started training at a wonderful College of Naturopathic Nutrition in about 2015 but didn’t finish the whole course for many reasons -/ age related and my husband was being diagnosed with dementia and we were moving house to be closer to our family etc.
However as someone on a spiritual journey as well and who was making connections with soul knowledge
I continued to follow these links and my friend and naturopathic sister in sharing knowledge was obviously my first call to help me understand this painful flare up 📕
It was Judith who gave me this link and did some healing trauma with me!
Delighted to say it worked almost instantly ❤️
This link however is so helpful and I’ve passed it on to a friend of a friend in Newcastle area in GB
When I read this post today it immediately resonated with certain traumatic aspects of my life and I am definitely sure that there can be this connection ! We …and the Medicsl profession in particular … avoid looking at this Mind. Body…spirit connection in healing ! We know this so well !
I can trace my own traumas quite clearly and find the research link fascinating
Thank you from the Universal connections we make for some more research material upon which I can meditate and hopefully heal more and spread this appropriately
It’s honestly so wild how deeply impactful it can be to work on healing trauma for our physical and mental health. Trauma lives in the body, and if we do not work on it, it can create a host of chronic physical conditions. So glad to hear you found a resource to help you through it and you had so much (and quick) success. Would you be willing to share the link with us here?
Hi, my LS used to be centred solely around an episiotomy scar from giving birth on my 30s. Later in my 60s I had a traumatic operation to remove a vulvar lipoma ( left with a collapsed vulvar on one side and a thin ragged edge). The LS immediately colonised the new wound and has developed further into Lichens Planus as well. I was told by my gynaecologist afterwards that there was a connection between physical trauma ie. surgery, and increased LS. I have not been able to find any research into this though. Would greatly welcome any pointers to some.
Stella.
Oh Stella, I’m so sorry. That is a lot to go through. I definitely think the trauma is a trigger for you here. I haven’t yet seen research on this – only suggestions that maybe trauma plays a role with no follow-up. This just makes me want to talk about it more to maybe entice some researchers and healthcare providers to start thinking more deeply about it, conducting studies, and being mindful of trauma-informed care.
I have a similar situation, my LS initially was centred around my episiotomy scar from giving birth – discovered in my early 30’s. Then again in my early 40’s after a vaginal hysterectomy. I suffered greatly, it took me longer to heal from the surgery and it took me multiple doctors and almost 5 years to make the connection that a lot of my issues after surgery had to do with my LS. I was never educated at the time I was diagnosed and my family practise neglected to keep that information current in my file.
Too many people do not get the education and support they deserve. I’m so sorry that happened to you.
Hi there I can relate to the religious upbringing of trauma. And then getting into an unhealthy relationship because of that religion. Growing up in a traumatizing conservative fundamentalist religion, my dad being the minister, set me up for a lifetime of dealing with anxiety. All of that anxiety that built over years and years I do believe contributed greatly to the onset of my lichens symptoms. I have since removed myself out of that bad relationship and I’m now in a loving healthy relationship. I have been able to get my Lichens into remission through natural resources. To this day I am still struggling on and off with symptoms from stress. These days it’s really only stress that triggers my symptoms. I am learning as life goes on to deal better with stress and feeling a lot better about things.
Hello! Wow, yes, my dad was a minister too in a conservative, fundamentalist religion. I’d be very interested to connect and share stories if you would be. You could send your contact info to Jaclyn and she has permission from me to connect us. No pressure, but it would be really meaningful for me to connect with others with a similar background to me.
Best to you, Jen (the author of the blog post)
Thank you for bringing this to the attention of the LS community. I absolutely see a link between trauma in all forms and LS with the majority of my homeopathic clients. For many it’s post child birth like my own LS starting while others it’s abusive relationships in their life history, or a combination of both. In a couple of clients the LS started shortly after they discovered that their child had been assaulted. I’ve found that by addressing their feelings around what’s happened to them then their LS symptoms can resolve. Whilst I don’t think every LS patient has been abused (in all its forms), I suspect there are more that don’t discuss it as shame also seems to play a huge part. The studies into adverse childhood events (ACE’s) concur that trauma leads to an increase in autoimmune diseases in later life. Thank you again for sharing your story and raising this important aspect of LS.
Thank you, I know I have C-PTSD from childhood and when I read the question of can this be connected? I immediately went to a memory of what was happening to me at the time I was first diagnosed and biopsied at the age of 15.
As one of the others said, no education and no real support in a kind way was given. I can say a yes to trauma and dx of LS at that young age. Family history problems, tangled child abuse and emerging sexuality. I could identify strongly with the wording of my Vulva was speaking volumes about what was happening around me, to me and with me. Thank you for this blog.
So here’s my journey… diagnosed earlier this year at age 65. I married (knowing it probably wasn’t the right man but I wanted marriage/kids and everyone said “but he’s a great guy!”) in 1983 and had a rough time with constant STDs, finally rid of them with meds and 3 rounds of cryotherapy. I had my kids in 1985 and 1987.
Before my 2nd was born I asked my physician “if I need an epidural could you please leave out a couple of stitches?”. He was surprised and told me most women ask for an extra stitch. Nope, I was tearing every time we had sex (which wasn’t often) and it was very painful. Finally in 1988 I was referred to a GYN and he said “oh, I know what’s wrong and we can fix this with surgery.”
My entire life was controlled by my father, a man well respected in the community but my two siblings and I were very uncomfortable around him. More on that later. I never made a decision on my own so I went ahead with the surgery, not even asking what it entailed. To this day I have no idea what was done except that the vaginal opening was less tight and I felt like “damaged goods”. The marriage was a mess by then although there was no more tearing during (monthly) sex.
By 1997 I had a major depressive episode and have been on anti-depressants ever since. I’m “okay” but often wonder if there will ever be a day that I don’t feel like cortisol is coursing through my body. If I had a dollar for every hour of therapy I’ve done from age 25 to 65 I’d be rich.
Since my father’s passing in 2005, my older sister, younger brother and I have discussed “what the heck went on in that house?” many times and we’re not sure but agree we all have mild PTSD. I respect that it’s important to honour my feelings even though I can’t verify them with facts. That’s ok.
So is that what caused my LS? I have no idea! No one else in my famiy (that I’m aware of) has it. I’m not yet aware of having any other autoimmune disorders although I suspect I have hypothyroidism and intend to ask for full testing at my next annual exam.
Happily my VLS is currently in remission and I hope it stays that way. Much love to all who have endured trauma and have to put up with LS on top of it all… xo
Hello Colleen, thank you so much for sharing your story. You’ve been through a lot and I’m really glad to hear your LS is in remission!
Jackie… that was supposed to say “episiotomy” not epidural. Are you able to correct it and delete this comment? 🙂
Thanks
to everybody, the first 40 years was like hell, and yes i think my LS is related trauma. Thanks for your the post👏
One parent was religious, but the other brought his mistress to the college I attended. Later I went through a 30-year marriage with someone who didn’t understand that the hitting didn’t hurt, but the fact of his slaps hurt more. One time he said “I didn’t hit you that hard!”
I’m quite happy now, but this disease definitely causes trauma and isolation!
Thank you for sharing your experience Debbie. I’ve wondered a lot about domestic abuse (in all forms, physical, sexual, verbal, emotional, etc) and it’s contribution in the onset of LS. I hope that opening this discussion provides insight and comfort to any of us who have had this combination in our lives. I’m really glad to hear you got through it and you are happy now.
I completely understand how trauma can inform LS. I was raised in a home where I had a Catholic father and an Anglican mother. My sister and I had to become Catholic to please my father although he never went to church himself. In school, I found abuse at the hands of “some” of the nuns and found the priest who visited the school to be very abusive emotionally and mentally. We were made to go to confession, and he would tell the nuns what we confessed and then bring us to the office to let us know we were “sinners”.
As I became a teen, I engaged in behavior that rebelled against everything I was taught. My father was an alcoholic who tried to sexually abuse my sister and I while my mother was in the hospital. We were only 10 years old.
When I was 19 years, I was raped at a small house party where I thought I was safe. Because it was many years ago, 1965 in Canada, there was no birth control for those who were not married and abortions were not even thought of. I left my hometown to stay with a friend while I was pregnant and in dire poverty. No one but my friend knew about my pregnancy. When it was time to have the baby, I went to a Catholic hospital in a large city by myself. I was afraid, alone and in tremendous pain. I was put in a room by myself and spent about 12 hours screaming from the intense pain. A nurse came in once and told me to quit screaming. A doctor later came in and stood at the edge of my bed looking down on me. All I remember him saying is that if it was between me and the baby, they would save the baby. He then turned and went out the room to leave me exhausted and in pain and confusion They later rolled me into the delivery room. I remember them…doctor and a couple nurses…just standing there while I struggled to have the baby. They occasionally checked the baby’s heartbeat but never touch me. No episiotomy was done and I tore inside and out as I struggled to give birth. After it was all over, they took my baby away and the doctor sloppily sewed me up. Before I left the hospital, I snuck by the room where the babies were kept and saw one in a blue blanket facing away from the window. I knew he was my baby and I grieved greatly but also felt grateful that he would have a chance for a good home.
I was a virgin when I was raped and wouldn’t have sex again until a year and a half later. Only once, and again I got pregnant! This was my precious daughter and I made sure to keep this one. Single people were finally able to have access to birth control a few years later!
Another aspect of this whole thing is that I became very spiritual…not religious. I had many wonderful, amazing love filled experiences. Much healing had begun. However, I would spontaneously go into past lives, one of which I found myself and my young daughter were raped and killed by soldiers. Another past life many generations ago, I had a baby out of wedlock and we were tracked down and killed by the religious fervor of townspeople who had found us.
So, in this life again, I was somewhere in my late 30’s when the LS began. Sex became difficult with my husband at the time and I realized I had an unconscious anger towards men that had followed me through lifetimes. I wasn’t diagnosed for many years and just felt that I was becoming much smaller and painful because I didn’t like men. I am now 77 and finally got diagnosed in my early sixties. I can no longer have sex.
I have learned …for me…that every trauma I experienced, was energetically kept in my energy field. I brought those memories with me and had similar experiences in this life to heal the past and to know my own feminine power. Finally, no more trauma!!! The LS has slowed down a lot but still has remnants of it occasionally when under stress.
I understand that this is long but really, really do know that trauma stays with you until you can heal the emotional aspects of that trauma…through loving yourself completely. That is the gift in the trauma. Self healing and Self love…..
Amazing … I so appreciate this topic being brought up as I too have felt LS is very much associated with trauma and stress proceeding the symptoms and not just as a result of a flare when you already know you have the condition. This is only the very tip of the iceberg.