NLSSG introduces the first Letter of the Month. The letter is from a woman in the UK who has lichen sclerosus. Her letter has not been edited and she invites comments and replies which will be publised for you to read.

Hello,
I have suffered from Lichen Sclerosis now for approximately 5 years.

Initially I was treated for Thrush, but as the necessary treatment for Thrush did not abate the symptoms it was suggested by my GP that I visit a dermatologist at the local hospital.

During this visit a biopsy was perfomed, I was then diagnosed with Lichen Sclerosis. I was given a prescription for Dermovate which I used for almost
3 years. As my symptoms did not improve with this treatment I was referred to a surgeon. It was suggested that I should have 'reconstructive vulva'
surgery because the disease had worsened.
For many months after this first surgery all was fine, but then the symptoms returned, so once again I was referred back to the hospital,and once again I was told that second surgery was necessary.

One year after the second surgery the symptoms returned with a vengeance. It does not seem to make any difference which treatment I receive, the painful symptoms still persist.
However, I have found out that drinking plenty of water and fruit juice does relieve the constipation which accompanies the LS. Can I also add that it is advisable to use Aqueous cream instead of any soaps, for washing the genital area. Soaps and bath salts/oils contain perfume which can aggravate the disease.

I am a woman aged 62 years so sexual intercourse is no longer on my list of priorities, although it has damaged the relationship between my husband and myself, unfortunately he doesn't really understand about the condition and of course my fear is that he will look for 'comfort' elsewhere.

Coupled with the LS I suffer from anxiety and depression, add to this panic attacks. My life now seems pretty dire. I wish that there was an easy answer to this problem, but there does not seem to be one.

The itching and pain does affect my sleep pattern, so in turn I am very tired during the day.

Maybe there are other women out there who are suffering in the same way, with whom I can speak to?

I apologise for sounding so negative, I find that it is worse not knowing the cause of LS and an easy remedy. Am I right in thinking that 'live yoghurt' will help to relieve the pain and itching?

I would appreciate some feedback.
I live in the United Kingdom.

REPLIES

I am a 34 year old female and I just went last week to my doctors to find out if I had some kind of infection to then be told I might have LS and should proceed with a biopsy.The pain, itching and cracking have been going on for one year. I am afraid to be told the results.When I read your letter it was just nice to know there is someone else out there dealing with the same or something similair.

In response to the November letter my following information may be of help to others.

I am now 46 years old, married with 3 teens and have been suffering LS officially after biopsy for 12 years. As many LS people may have found that their symptoms have met with missed or poor diagnosis prior being officially confirmed.

At the age of 23 I had an autoimmune illness following surgical removal of my wisdom teeth. It took 2 years to recover from such viruses as, viral meningitis, toxoplasmosis, Herpes simplex 1, HPV, and other secondary bacterial infections.

I was also genetically predisposed to Poly cystic ovaries on the gyneacological front taking us down the IVF pathway. From 1990 to 1992 I undertook 6 cycles of IVF medications resulting in 2 successful pregnancies.

The vaginal delivery of high forceps resulted in a traumatic birth and vaginal/ perineal disaster, and an extremely strong load of IVI antibiotics. Three back wall vaginal repairs followed to minimal results.

The following delivery was twins under cesarean procedure due to vaginal narrowing and double footling presentations of babies.

1994 saw introital narrowing so bad, that I could not get a tampon in place, so a full vaginoplasty was performed. Biopsies were taken with nonspecific results as to the reasons for this problem in Australia.

The surgery was a good result for my self and husband.

Things proceeded well for the next 3-4 years. I had minimal episodes of thrush or labial irritation and I was leading a health but busy life with 3 small children now living in the USA Chicago. This must have been a remission stage as there was less stress in my life.

In 1998 there was a flare up of acute symptoms that I could not manage with the basic crèmes and diet. A biopsy finally diagnosed Lichen Sclerosis and this doctor was reasonably aware of this condition.

I followed varying treatments over the years from testosterone to corticosteroids and the best treatment I found was oral Cipramil. This is an antidepressant medication which helped reduce the stress factor which played a major contributing factor in flare ups of my condition. This was a common treatment he placed all his ladies on to help with LS.

Today in 2006 I have realized that this condition does have a mind of it’s own. I do have perineal and anal skin layers involved. I am now looking to the other systemic regions of my body, those being the oral cavity, throat and oesphagus.

I have been experiencing narrowing and dysphagia of the throat and some skin changes at the back of my mouth.

I work with my dermatologist who is the brother to my Gynaecologist who are both very current with any research work on LS. I see the dentist and gastroenterologist 6 monthly, to be PROACTIVE with this condition.

I have my own daily management plans and encourage personal hygiene to be a priority. On the sex front there are times of swelling, grazing and tearing and times with no trauma. Sex is important to me and we have a good understanding of how to make it work well with minimal problems. I have more management plans that have worked over the decade and will continue to alter and redesign them to keep me on top of this condition as it moves through out my system.

I do not want to be one of the possible 4% that may develop a cancer from this condition and will act positively in finding an answer for myself and others in dealing with LS.

Though I am in Australia and there is no known active research or study programs happening here I will rely on groups and medical researchers internationally to help find answers for me.

I have a nursing background and this has been very important in managing LS. For those ladies who are not medically educated daily management of this condition can be a nightmare and extremely frustrating, depressing and isolating if in sexual relationship. I wish them all the best.