Lichen sclerosus~ my journey so far by Karen Rowe

Age: 56
Living in Taiwan
1978 Reynaud’s syndrome
1992 Hashimoto’s thyroidism
and Coeliac disease
2014 Bilateral mastectomy (Invasive Lobular and Invasive Ductal carcinomas)
2016 Oophorectomy
2019 LS


Mid February, 2019
I felt a soreness and itch around my clitoris and labia. A discomfort that, after a couple of nights, became a burn in the whole vulval area, making sleep elusive.


After a week I suspected that a recent change in washing powder was the issue and switched to hypoallergenic, fragrance-free products.


Late February
The burn, itch and pain was becoming worse. In fact, I was feeling the symptoms all the time.
To make matters worse, every time I had a bowel movement, the pain was intense (like passing glass) and I would bleed badly.


I was meticulous about keeping clean (having a wonderful Japanese toilet that sprinkles and spurts water wherever and at whatever temperature and force desired) but nothing seemed to work. I used Sudocream hoping it would relieve the anal pain but each toilet visit had the same, bloody outcome.


Early March
Visits to two colorectal specialists for the pain and bleeding provided no answers (even after a colonoscopy) and I was sent away with haemorrhoid cream and the suggestion I look into IBS.


I’ve been coeliac for 27 years, lactose intolerant for 9 years and am extremely careful about my diet. However, I did research and started a low FODMAP diet.
Surprisingly, this did help a little. I bloated less, was able to do a number two more frequently (now every day or two) and, being softer, I did not feel cut as badly.


Mid-March
My vulva, labia and clitoris were more painful than ever and felt bumpy.
Examining with a mirror,I could see that my labia were shiny white, with hard patches, and so, the very next day, I visited a familiar gynaecologist.
“Old woman’s issues” I was told - he recommended using Vaseline and said goodbye.


Late March
I used Vaseline for the week I waited to see my specialist gynaecologist (he had performed my keyhole surgery) and, having used Google to research my symptoms, I was convinced that my issue was more than becoming “old”.


The specialist looked, booked a biopsy for the following week and gave me Bestasol cream and Hyalofemme lubricant.
The former cream did help (it was a mentholated Clobetasol), whilst the latter made me itch more and so I abandoned it after a couple of tries.


Early April
Results were in and I was told...
“Leukoplakia. Hormone treatment can help but not in your case (my cancers are hormone receptor positive). Keep using the cream.”
... and that was it.
Happily, the cream began to lessen the patches and the whiteness on my labia.
(While he called my issue “leukoplakia”, my medical records show the biopsy result as “Consistent with LS”)


Early April
One of only 2 doctors in Taipei whose medical specialism details mentioned LS, was seen.
She, whilst remarking that I was in a severe flare, recommended a different hyaluronic acid product to moisturise and talked about PRP therapy and laser therapy. The gel was expensive (£125 for 4 individual use tubes) but the therapy was prohibitive at £3,000 per treatment and 2-3 treatments needed per year!
I tried the gel but did not see any noticeable improvement. I returned to using Bestasol.


Unfortunately this is when the fusing became very noticeable.


End April
Surgery was discussed with the other specialist who had LS experience, and she scheduled a small procedure to release my half-fused clitoral hood.
However, I ended up with the labia being separated and internal incisions at 12 o’clock and 6 o’clock to counteract the shrinking of my vaginal opening.
5 weeks later the stitches were removed.


July
I obtained a tube of Dermovate cream and tried it, hoping it would reduce the redness that had replaced the whiteness and patches. Unfortunately it made the redness worse and started me itching again.


At this time though I discovered, for me, that ‘washing’ with coconut oil seemed effective in managing the itch/burn. I also discovered local water wet wipes that I used after every toilet visit, with comfortable results.
I felt that I was in remission.


October
The stress of how I felt, the realisation that I was losing all that was anatomically female about my body, really hit me hard: No boobs and disappearing lady parts was unbearable. Consequently, I suffered from mood swings, with frequent outbursts of anger and/or tears.


Early November
I started counselling to help me deal with the emotional aspect of the issue.
I also joined your Facebook group and reading about others in similar (awful) positions helped more than I can express.


31st December 2019
My 56th birthday!
Life is not easy: 11 months ago LS did not exist for me.
Now, in addition to always needing to be conscious about where and what I eat/drink, I also need to be prepared for using toilets outside of my home and for activities that may trigger flares (swimming/hot springs/long journeys, etc).


Fortunately, I have the most amazingly supportive and loving partner who continues to make me feel beautiful and helps me to be brave and organised.


I’m also very grateful that your group has given me more clarity than any doctor and more tips on what to try. The goalposts constantly move but you help me to respond.


In spite of using Epsom Salt or Dead Sea Salt baths to try separating small sections of re-fused labia (occasionally the skin did split) the fusing continues.


I have an appointment scheduled with a doctor famous in Taiwan for his holistic approach to palliative care. Recognising that none of my conditions are life threatening, he has, nevertheless, expressed interest in exploring using similar treatments and strategies for me.


This fight will go on, and my life will be lived to the full