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A sensitive subject
I have already spoken about one topic where some people might have thought - Oh – I don't want to know about that. The complaints that I describe in my post Bowel movement - hard and soft facts are partly due to the following illness: Lichen sclerosus.
Not a rare disease
You've probably never heard of it. Another rare disease? Not at all. Lichen sclerosus is the most common noncontagious genital disease. You might think it's an STD- no, it's not. Lichen sclerosus is not due to infection - the disease is not contagious, has nothing to do with poor hygiene, and cannot be transmitted by contact, including sexual intercourse.
Not only women
It affects women, men and children, is gradual and very often, too often, is not recognized. Probably every 50th woman is affected.
The Lichen Sclerosus Association CH, based in Switzerland and active throughout Europe, is leading the way in education about this disease. The association was awarded the Red Cross Prize of the canton of Aargau in 2019 for its pioneering work. The association has already provided me, as an affected person, with a great deal of valuable information.
How about me?
I went to my gynecologist for a routine checkup. A young substitute doctor examined me. She told me to make an appointment at the hospital to rule out a VIN = vulvar intraepithelial neoplasia (a certain skin change that indicates a precancerous stage) and/or Lichen sclerosus.
Until then I had never heard of it. I must admit, the news was a little frightening. I had noticed changes: weeing was different - like a calcified tap, and I noticed that my labia and clitoris had changed. But I had neither really looked at it nor thought that I had to do anything about it.
Problems after bathing
I always have problems when I have been in the water e.g in a thermal bath and with tight clothes. Riding a bike is also not possible because of my decreasing strength, but I can't sit on the saddle either.
Somehow, I didn´t realize that everything could be connected. Until that day at the gynecologist's office. I am sure there are a lot of people who feel the same way. My usual doctor wasn't there to reassure me. That suspicious diagnosis was made just before Christmas. It was not an easy time until January 11th and the realization that I had no VIN but definitely Lichen sclerosus and quite advanced, too.
Not always fibromyalgia
If you live with pain permanently due to fibromyalgia or another chronic pain condition, you do not always pay enough attention to change. You blame a lot on fibromyalgia. But anything that's treatable we should be treating.
It is worth investigating the complaints
Many fibromyalgia sufferers have told me that they have problems with itching fungal diseases related to the bladder and genital area. Maybe there is something else behind this. Please read on.
It's about time we talked about this!
What's it about exactly?
What does Lichen sclerosus mean?
The term comes from the Greek "leichén" = lichen and "scleros" = dry, hard. Lichen sclerosus is a chronic inflammatory skin disease. Although it can affect any part of the skin, it usually targets the genital skin. In women it affects the vulva, in men it primarily affects the foreskin, the glans and/or the urethra.
Shame - ambiguously meant!
And already you start to feel ashamed because hardly anyone talks about the vulva. Anyone can imagine a penis and probably draw it somehow, but with the vulva, it is much more difficult. Do you know what you look like down there, when was the last time you looked there with a mirror? Oops! Guilty as charged, "What you look like down there." That's how we talk. It's a mistake to treat the vulva this way, it deserves more attention.
Apparently, even the vulva has fallen victim to the optimization mania. Here, too, it seems we must not grow older and look it.
Sometimes no surgery is needed to change the vulva, sometimes unwanted changes are the effect of Lichen sclerosus disease.
Not only women
Lichen sclerosus can also affect the skin around the anus. It can begin in childhood or adulthood (usually after menopause) and can affect children or women and men of any age.
Lichen sclerosus - from where?
The cause of Lichen sclerosus has not yet been conclusively clarified. It can be linked to other diseases in which the body's immune system attacks normal tissues such as the thyroid (which causes an overactive - or underactive - thyroid gland) or the insulin-producing cells in the pancreas (which cause diabetes). It is not yet proven to be an autoimmune disease.
Friction or damage to the skin can trigger lichen sclerosus or make it worse. This reaction of the body has a name: "Koebner response". Irritation from involuntary urination or wearing incontinence pads or panty liners can also make the problem worse.
Lichen sclerosus - how is it recognized?
The disease usually progresses in relapses over a long period of time. There may be symptom-free periods. The most common symptom of vulval lichen sclerosus is itching and burning in the genital area, pain, and symptoms similar to fungal and bladder infections. The itching can be very bad and painful if the skin is no longer completely intact or even shows cracks. In the genital area, the hardening of the skin can lead to tightening. Then it is uncomfortable when we want to wee or sleep or have sexual intercourse.
I 'm not in the mood because I know it will hurt
Yes, sex can hurt for that reason too. There is a remedy - more about that later. A similar tightening of the skin around the anus can make bowel movements very painful. Constipation is often the result, especially with children.
The patches on the non-genital skin rarely cause any symptoms.
Lichen sclerosus - what changes?
The affected skin has a shiny white appearance, which is usually thinned but can sometimes be increased and thickened. When the anus is affected, there is an "pattern of eight". Skin fragility can cause some small blood vessels in the skin to burst, which appear as tiny blood bubbles. Occasionally, blisters and small cracks can be seen, which are called fissures. If these conditions are not identified and treated, the normal appearance of the vulva may change. There is a low risk (less than 5%) of developing skin cancer in the affected areas of the vulva. This can look like lumps, ulcers, or encrusted areas.
How is Lichen sclerosus diagnosed?
The diagnosis can usually be made on the basis of the typical appearance of the disease. If in doubt, a small skin sample can be taken and examined under a microscope to confirm the diagnosis, especially if there is an open wound or thickened skin area. This is known as skin biopsy and requires a local anaesthetic injection and possibly stitches to close the wound, resulting in a small scar.
Is Lichen sclerosus curable?
There is no permanent cure for Lichen sclerosus, but the symptoms and signs of the disease can be kept well under control by applying specifically prescribed cream to the affected skin. Sometimes the disease starts in childhood. In the past, it was thought to disappear by the onset of puberty. This is now being investigated more closely. The Lichen Sclerosus CH Association is currently writing a book for teenagers with LS. Soon the Association will offer advice for younger girls and teenagers on the basis of medical research and consultation with doctors.
How can Lichen sclerosus be treated?
Various treatments are available for Lichen sclerosus: You can read about them in detail on the websites below.
Self care (What can I do?)
- Actually we have known this for a long time, but we should avoid washing with soap and use a soft soap substitute instead.
- After weeing, dry off carefully - do not rub in order to reduce the contact of urine with the skin.
- In an acute phase, treatment is carried out with highly potent cortisone ointments. (in very small doses)
- The use of a moisturizer or yellow soft paraffin (like Vaseline) as a protective cream can protect our skin from contact with urine.
- If sexual intercourse is painful due to tightening of the skin at the entrance to the vagina, the use of lubricants and occasionally vaginal dilators helps.
- Keep an eye on your skin. There is a low risk of developing vulvar cancer in lichen sclerosus, but with good control of symptoms and signs, this risk is further reduced.
- A lifelong regular self-examination is very important for all women with genital Lichen sclerosus. If skin changes develope that do not respond to steroid creams, especially thickening of the skin, pain or ulcers lasting longer than two weeks, you should inform your doctor immediately. You may need a biopsy to test for skin cancer.
- If you smoke, it's best to quit to reduce the risk of cancer.
There are guidelines in German and English language, which can be viewed or downloaded on the homepage of the Lichen Sclerosus Association CH.
For more detailed information about the treatment please also visit the site.
The above steps are taken from the recommendations of the British Association of Dermatologists Guidelines but are not complete.
Here´s what the Lichen Sclerosus Association CH says
"Lichen sclerosus was first described in medical textbooks in 1886. Nevertheless, this autoimmune disease is largely unknown throughout German-speaking Europe in the 21st century. Among gynaecologists and general practitioners as well as pharmacists, druggists, nursing staff and midwives*. Lichen sclerosus as a clinical picture was quite simply not part of the training."
Remark: This seems familiar to us. Pain has also not been an independent subject in medical education for long.
You can find further information partly in Swiss German with this link: Lichen Sclerosus - Videos and more info
*In 2022, at least every second midwife with whom a conversation was held knew about the disease. Our article in the midwifery magazine Obstetrica in 2018: When the vulva itches and burns , contributed to this.
Delicate parts of our body - too delicate a topic to be talked about?
"The "shame of one's own shame" often makes those affected suffer in silence for years, they are ashamed to keep going to the doctor because of the recurring complaints, who often does not know what to do either. This has serious consequences for the undiagnosed: In the relapsing course of the disease, the skin in the external genital area degenerates, it scars, becomes sticky, thin and tears. Sexuality becomes difficult, partnerships break up.
The risk of vulva cancer increases in untreated women. Of the 200 new cases of vulvar cancer diagnosed each year in Switzerland, 100 cases are based on untreated lichen sclerosus.
And forensic experts confirm: Girls not infrequently come under unjustified suspicion of abuse due to the unrecognised LS because of the symptoms and pain - this plunges whole families into drama."
education is needed
Education is necessary - so that Lichen sclerosus is not concealed for another 100 years and the disease is detected better and earlier. Lichen sclerosus is widespread and clearly underdiagnosed. Lichen sclerosus is not curable, but treatable. Early diagnosis is extremely important for successful treatment.