Lichen Sclerosus: When it all Changed

Hello, so this is my LS journey. It began early 1997 with my first symptom of perineum itch but I believe it had begun before that as I had not felt 100% for a few months.

The year of 1996 was one of the most stressful year of my life with events coming one after the other. My parents had died 5 years previous and I was renting their house out, at the time it was empty and my husband was helping me with repair work on the house. Unfortunately through the repair work a fire started and the house was gutted. It took many months to sort out the house and get it habitable again. Unknown to me my husband had gone to the house and put the water back on for the first time in months. The water tank was damaged and burst and the house was flooded from top to bottom bringing in the ceilings. I set out a second time to renovate the house which finally culminated in my decision to sell the house, which had been my family home. Loosing my parents, then my family home was a huge thing to try and deal with while having children and working. I carried on and shelved my trauma somewhere in my head.

In the same year my eldest daughter, who at the time was not street wise, went to university in Oxford where she ran up a lot of debt after meeting and moving in with what we later found out was a con man. This culminated in him raping her and she was hospitalized with a uterine bleed. At the time we were told unless they could stop the bleed she would have to have a hysterectomy. The bleed did stop and I brought her home, took on the debt and nursed her back to health. My youngest daughter was diagnosed as dyslexic and so began the battles at school for her.

I consider that my main cause of Lichen Sclerosis was stress and over the years the symptoms have exacerbated when I am stressed. My personal coping strategy with stress was to bottle it up and shoulder on.

As the itch got worse I thought I had thrush and went onto an exclusion diet cutting out sugar and yeast, I did this for months and can remember kneeling in front of the fridge crying because I was so hungry and hadn’t got the foods in I needed and my symptoms were no better. Having a young family and working full time there was little time to think about myself. Eventually I went to see the doctor who examined me and said it looked like thrush and gave me Canestan, I visited him again when it didn’t improve and was given the same diagnosis. My symptoms of itching and soreness continued for a number of years as I had believed my doctor and didn’t question his diagnosis. I also thought I may have leaky gut after reading a lot about it. This caused me to refine my diet and take some supplements, however the symptoms continued.

The ten years from 1996 to 2006 were a mixture of busy family life, work and continual management of my symptoms, I didn’t look after myself as I ignored the symptoms and continued to think it was leaky gut/thrush. I used Vagisil cream to numb the area. We had been to America for a holiday and I was able to buy a supply of double strength Vagisil cream which isn’t available in England. I managed until the symptoms got so bad it filled my mind and I had to take notice. At this point I had no idea what the problem could be but I realized it was not just thrush. I then hit on the unpalatable thought it may be a latent sexually transmitted disease of some kind so I made an appointment at the GUM clinic. I was so traumatized and ashamed doing this and being examined and swabbed but it was probably the best thing that I did. The nurse called in a doctor there to examine me and she said had I heard of Lichen Sclerosis? This is the first time I had heard this term and had no idea what it was. The doctor there referred me back to my own doctor with a referral letter asking for me to be referred onto a Gynaecologist. All the results from the GUM clinic had come back clear.

I read everything I could about LS and it fitted so well to my symptoms. I am a private person and having to go through this GUM process was itself embarrassing and upsetting and I felt even more traumatized. The LS had destroyed my sleep pattern as I was getting up at night to get in the bath and put on cream. It`s not something that is after dinner conversation so I felt isolated and totally alone trying to deal with this. My parents had been my support system and I had never been able to talk to my husband about emotions of any kind as he saw these as weakness. I still had a younger daughter and working full time I can remember thinking in the middle of one night about `the dark night of the soul` and going through in my mind if suicide was a better option. I had suicidal thoughts on and off over an extended period but knew I wouldn’t act on it because of my young daughter. I couldn’t leave her alone when I had known the agony of loosing my own parents and having to deal with life alone.

Eventually I was referred to a lady gynaecologist and had a series of biopsies under a general anesthetic. She told me I would have a `biopsy` but when I came round I had had numerous biopsies so my vulva was excruciatingly painful and I couldn’t pee. I was so upset to have had this done and not been told how it would be. I felt like I had my power taken away, I had been damaged in the most delicate area when I was unconscious. I felt so shocked yet again. I think this was the turning point where I decided to help myself I had lost trust in the medical profession and other than a diagnosis had not been helped in any way.

I went back to my GP for the results of the biopsies and it was Lichen Sclerosis. He prescribed Clob and I got the cream and tried it. It felt like I was on fire and I read about it and as advised I went back to the GP. He told me to carry on using it and the burning would wear off. If not he could change the cream but to try first. I couldn’t just `carry on`.

I was at all time low and felt the only person I could rely on was myself so this started my 8 year quest to find an answer for me. I will describe my way forward but this is in no way saying it is right for anyone else. I stopped the steroid cream and sourced creams that were moisturizers and for sensitive skin and natural as possible. Some of these I used were coconut oil, Aloe Vera gel , babies Sudocrem, Vaseline etc. For the itching I sometimes took paracetamol, particularly if I couldn’t sleep, I`m no expert but I understand the itch message to the brain goes via the same pathway as the pain message. Hence a pain killer can help the itch. I used olive oil soap to wash with and a non-bio wash powder for my clothes. I also had homeopathic treatment alongside.

This was my management plan to help me be as comfortable as possible while I did a lot of reading and research. I found out that there is a large school of thought that LS is an auto-immune disorder and this was another starting point for my rationale of self help.

In 2010 I decided to go back to adult learning and took a short course in counselling. This lead to a new career pathway as I have followed this for the last 7 years and I am now an accredited Psychotherapeutic Counsellor. Talk about healer heal thyself, it has been this life path that has helped me the most.

I learned that stress can have a hugely negative effect on the immune system and cause all sorts of problems. I believe that the events of 1996 caused so much stress in my body that it could not maintain health and the `complaints department` in my body became my vulva. I know that year was devastating and changed my health. I also realized that I was carrying a lot of emotional baggage from those events and I had never really dealt with the shock and trauma, just shelved it. So as part of my training I started having regular counselling and this began my psychological healing. It hasn’t been easy and there have been no pat answers or miracle cures but I felt empowered, I felt more in control of my life and my own ability to heal. I also continued having homeopathic treatment.

I found out that inflammation is part of Lichen Sclerosis and that this causes higher histamine levels so I started to take an anti-histamine, not regularly but when the symptoms seemed to be worse and this cut short the flares.

During my training I have completed a diploma in Cognitive Behavioral Treatment and one particular technique really `spoke to me`. This was conceptual reframing where you work towards changing the way you see a situation, you learn to think differently about a life situation. This has had a huge impact as I have been able to go back to 1996 in my mind and change my thinking and I have been able to reframe the anger, resentment, disappointment and blame. I have been able to change my thinking, it has taken many months to work with this but now I feel at peace in my mind. What I find most amazing is the more my mind has found peace the more my LS symptoms have decreased and on April 14th 2018 they stopped!

I still work with present time reframing so that I don’t store away mental negative baggage and I still occasionally take anti-histamine because I don’t know if the odd itch is what women feel who haven’t got LS or it is a small reminder of the LS. I have forgotten what normal feels like in that area of my body. So my story continues I don’t know what the future holds but I have a hope for the future and believe in my own body wisdom. I feel like I have some control back where before I felt I had very little and the symptoms controlled me.

Just to say that I would go to the doctors if I need to and recently went to a lecture on self-examination so I do examine myself and hold an awareness of that area of my physical body and staying healthy.