Lichen Sclerosus: Not a Terrorist by Catherine Iveson

Hello all, my name is Catherine and I am 63 years old.
Three weeks I received a diagnosis of Lichen Sclerosus ( L.S.)
If I go back 6/7 years earlier however to noticing hair loss (scalp) and a receding hairline , this can be a part of auto-immune disease to which LS can be linked along with thyroid changes and vitiligo, I had noticed darker patches on my arms after being in strong sunlight recently whilst on holiday. Much of this information I have learnt more recently and its interesting to learn how many of us have similar experiences. Along with the sun these patches went away. My GP did a blood test and my thyroid function was normal, and the hair loss was put down to hormonal and age related changes.
Three years later I noticed that I was experiencing intense vulval itching. I searched for a cause and thought of a reaction to cleansing with fragranced baby wipes , and then to scented bathing products . I changed what I was doing re washing /cleaning but the itching persisted. I was about to remarry about 6 years after being suddenly widowed (stress), I had retired at 55 from a very stressful career. I visited my GP, was examined and prescribed an oestrogen cream to apply to the vulval skin, and told that this sort of problem is common in post menopausal ladies. The oestrogen cream helped somewhat but the itching persisted, bedsheets would be spotted with blood as well as underwear. I began to think that the oestrogen cream might be making the itch worse. So I used sudocream instead, I have found that ointments stick around longer than creams, sudocream being more like the consistency of an ointment. I know about the “itch/scratch cycle, the more you scratch the more you will itch, “ scratching increases inflammation and causes excitation of nerve fibres” (www.medscape.com ) and” the brain releases serotonin which gives temporary relief” (www.bbc.co.uk-health-29819754) I was wary of hotel and overnight stays with family and friends and would wear knickers at night so as not to mark the sheets.
I was still looking for reasons for the itching, was I allergic to chlorine? I do aquafit and am scrupulous about getting chlorine off, I wondered if I was allergic to toilet paper as the itch was intense when I blotted after urination, I wondered if I was diabetic and had glucose in my urine, but urine tested negative. I began to have an itchy anus , I had some surgery there after the birth of my large son 32 year ago. Haemorrhoid cream stopped that itch . I had a mesh sling inserted for urinary incontinence about 28 years ago and wondered if my body was rejecting it , that may still be a factor!
Luckily my new husband and I for a variety of reasons decided that penetrative sex didn’t matter after we tried it and I was in agony. That was such a shock I really didn’t put two and two together at all. I examined myself and saw no architectural changes just the appearance of sore and broken skin.
I revisited a GP, she examined me, took a swab and prescribed aqueous cream to shower with avoiding any shampoo run off to vulval area, I had already stopped using fabric conditioner, but noticed that I had irritation if I wore underwear that my husband had washed at his house , long story. I said to GP do you think I may have LS. She didn’t say yay or nay. She gave me a weeks course of Betamethasone (a steroid) ointment and Zerobase as a moisturiser. I also began to use the oestrogen cream internally twice weekly . I thought I was cured at the end of that week!
I had to return for more supplies as the itching returned. I went out to Australia to look after daughter in law and new grandson and had an experience I shall not forget. At the airport on my return I had to put the Zerobase into my suitcase and walloped plenty on in the airport loos, thinking long flight sitting down . I was going through security and a scanner when I was called forward to look at the image and perhaps offer an explanation as to what the opaque area was around my groin! Bloody hell, said I , its an ointment I am using . I am 63 , with replacement knees and scoliosis , e.g. not likely to fit the terrorist profile so I went on my way .
This year on returning from the USA had same experience in security, only this time my hands were swabbed for traces of explosives! I overheard another member of security say that the same issue had ocurred with the guys and jockstrap itch ointment. Apparently it all depends on the settings on the scanners. I still haven’t found out what ingredient in the Zerobase showed up on the scanner image.
I had another GP visit and was reissued with more Betamethasone, told her about my airport experience, she was surprised and mentioned aluminium as being the culprit? I asked for a moisturiser that stayed around for longer and was prescribed Zeroderm, an ointment .She said that the time had come on my next visit if things did not improve to refer me to gynae for a biopsy. The Zeroderm was more effective but I still experienced the pain of trouser seams, with prolonged sitting down, and the itching /scratching/bleeding persisted . The GP had surgery herself after that time so I made an appointment with a colleague who is male but has dermatological experience! As I expected he didn’t examine me but read his colleague`s notes and told me that it appeared that I did indeed probably have Lichen Schlerosus!
And so I began the Lichen Sclerosus protocol Clobetasol once daily for first month, then every other night and then twice weekly . I have published my local area guidelines on the site. My symptoms are improving!
I am going back soon to a female GP who also has dermatological experience.I am returning because I have questions , bladder issues- frequency-urgency on many days I am incontinent because the sensation of needing to pee comes on suddenly , I have noticed that if I cut down on caffeine the problem is not quite as bad. I tested my own urine – no bugs in it .. and what progress has been made following the protocol.
I worry about my descendants and their chances of getting LS at some point in their lives. I get teary reading the posts on the site especially where children and young women have the symptoms and when it affects reproduction and new relationships. I am saddened to hear that so many women (and men) around the world have LS and get angry that they have to suffer for so long before diagnosis .
Talking helps, sharing helps us all, and we together increase our knowledge and therefore power to bring about change .
I am so glad to Facebook and to Emma and friend for this site.