Lichen Sclerosus...enough already...Lets Talk

DISCLAIMER: Once again, I deal with one of those issues that no one wants to talk about and sweep under the rug and is too embarrassed to acknowledge. Yes, this is sensitive adult material...so deal or leave...whatever.

About a year and a half ago, or so, I developed a number of troublesome symptoms and was simply too embarrassed to see my doctor or to talk about it with Anyone. Looking back, maybe a quicker diagnosis would have made my current life easier...who knows?
It also did not help that when I finally went to my provider I was misdiagnosed not by just one doc, but by 3 or 4 depending on how you count.
Granted lichen sclerosus is rare and uncommon, so I really can't fault them.
And it was me who hesitated going to a dermatologist. I am grateful that a friend of mine explained to me that yes, indeed, a dermatologist does deal with genital ailments.
Sure enough, I was diagnosed with lichen sclerosus, or, as I like to call it "leprosy of the genitals" or "I have lost my genitals in an unfortunate smelting accident" (Its an Austin Powers Goldmember thingy that is stuck in my head but is quite accurate)
Basically, there is no known cause, maybe autoimmune, maybe hormonal...no 100% treatment that cures it. Ointments and steroids can manage it, at times.
Its frustrating. Some things do make it worse, stress, coffee, chocolate that I am sure of in my case.
Few things help and address the core issue of WTF is wrong. Acupuncture seems to help and i have read about flax seed oil and red clover tea, both of which I take on a daily basis.
OOWWW, it involves the genitals...lets not talk about that.
I have two friends that I have been able to converse with about this. Yet, I find myself ashamed for Really, no reason. I have this disease, this disorder and yet am not free to talk about my concerns, fears and frustrations. That is pure bullshit. I know I have nothing to be ashamed of. I did not ask for this. And I will not pretend that it does not exist because people clasp hands over ears and walk away. Enough already.
Because I have...challenged genitalia does not make me less of a person and more of a freak.
And yes, I am pissed, angry, frustrated..call it what you will. First off, I waited waaayyyy tooolong to go to my doc for fear...fear of the unknown, fear that it was all my fault, fear that I deserved this...shit.
I fault not my docs as this is a rare, uncommon disease and I am the worlds poorest historian, at times, and have great difficulty relaying symptoms, how such and such feels, how long I have had this symptom or that one...I even went so far as to have a colonoscopy to try and diagnose this and That didn't even work. And then the idea of going to someone else...someone whom I had only seen a couple of times before...well, it was a challenge. I am forever, ever, ever grateful for my friend Amy, as she has enriched and helped my life in more ways than I can ever, ever explain. She helped me realize what exactly I needed. Thanks Amy
Whew...this shit has been festering for awhile now....enough already..
The following if some of the scant info that I have gleaned off the internet regarding lichen sclerosus. Its a very odd, extremely strange, bizarre disease...disfiguring and emotionally frustrating....this is how I roll..this is how I deal...

What Is Lichen Sclerosus?
Fast Facts: An Easy-to-Read Series of Publications for the Public
What Is Lichen Sclerosus?
Lichen sclerosus is a long-term problem of the skin. It mostly affects the genital and anal areas. Sometimes, lichen sclerosus appears on the upper body, breasts, and upper arms.

Who Gets Lichen Sclerosus?
Lichen sclerosus appears in:

Women (often after menopause)
Men (uncommon)
Children (rare).
What Are the Symptoms?
Early in the disease, small white spots appear on the skin. The spots are usually shiny and smooth. Later, the spots grow into bigger patches. The skin on the patches becomes thin and crinkled. Then the skin tears easily, and bright red or purple bruises are common. Sometimes, the skin becomes scarred. If the disease is a mild case, there may be no symptoms.

Other symptoms are:

Itching (very common)
Discomfort or pain
Bleeding
Blisters.
What Causes Lichen Sclerosus?
Doctors don't know the exact cause of lichen sclerosus. Some doctors think a too active immune system and hormone problems may play a role. It is also thought that people inherit the likelihood of getting the disease. Sometimes, lichen sclerosus appears on skin that has been damaged or scarred from some other previous injury.

Lichen sclerosus is not contagious (it can't be caught from another person).

How Is It Diagnosed?
Doctors can look at severe lichen sclerosus and know what it is. But usually, a doctor takes a small piece of the skin patch (biopsy) and looks at it under a microscope. This allows doctors to make sure that it is not a different disease.

How Is It Treated?
If you have patches on the arms or upper body, they usually don't need treatment. The patches go away over time.

Lichen sclerosus of the genital skin should be treated. Even if it isn't painful or itchy, the patches can scar. This can cause problems with urination or sex. There is also a very small chance that skin cancer may develop in the patches.

Surgery is normally a good option for men. Circumcision (removing the foreskin on the penis) is the most widely used therapy for men with lichen sclerosus. The disease usually does not come back. Surgery is normally not a good option for women. When the lichen sclerosus patches are removed from the genitals of women and girls, they usually come back.

Treatment also includes using very strong cortisone cream or ointment on the skin. You put these creams on the patches every day for several weeks. This stops the itching. Then you use the cream or ointment two times a week for a long time to keep the disease from coming back. Treatment does not fix the scarring that may have already occurred.

You need regular followup by a doctor because using these creams and ointments for a long time can cause:

Thinning and redness of the skin
Stretch marks where the cream is applied
Genital yeast infections.
Sometimes, you don't get better when using the cortisone creams. Some things that can keep symptoms from clearing up are:

Low estrogen levels
Infection
Allergy to the medication.
When creams and ointments don't work, your doctor may suggest:

Retinoids, or vitamin A-like drugs
Tacrolimus ointment
Ultraviolet light treatments (not used on skin of the genitals).
If you need medicine, ask your doctor:

How does the medicine work?
What are its side effects?
Why is it the best treatment for my lichen sclerosus?
If a young girl gets lichen sclerosus, she may not require lifelong treatment. Lichen sclerosus sometimes goes away at puberty. Scarring and changes in skin color may remain.

Can People With Lichen Sclerosus Have Sex?
Women with severe lichen sclerosus in the genitals may not be able to have sex. The disease can cause scars that narrow the vagina. Also, sex can hurt and cause the patches to bleed. However, treatment with creams or ointments can help. Women with severe scarring in the vagina may need surgery, but only after lichen sclerosus is controlled with medication.

Is Lichen Sclerosus Related to Cancer?
Lichen sclerosus does not cause skin cancer. However, skin that is scarred by lichen sclerosus is more likely to develop skin cancer. If you have the disease, see the doctor every 6 to 12 months. The doctor can look at and treat any changes in the skin.

What Kind of Doctor Treats Lichen Sclerosus?
Lichen sclerosus is treated by:

Dermatologists (doctors who treat the skin)
Gynecologists (doctors who treat the female reproductive system)
Urologists (doctors who treat the urinary or urogenital tract)
Primary health care providers.
Lichen Sclerosus is a chronic, non contagious inflammatory dermatosis (skin disease). It may also be called lichen sclerosus et atrophicus, or its name is often shortened to LS.

Very little is known about this skin disease. Once thought to be rare, lichen sclerosus is now thought to be uncommon. The two most accepted theories are that lichen sclerosus is an auto immune disease or that it is a hereditary condition. It could even possibly be both since auto immune diseases do run in families. Many patients with LS also have other auto immune diseases (Lupus, MS, Celiac disease, etc).

LS usually affects the genitals and anus, but like eczema and other skin diseases, it can occur any where on the body as well.

LS is a chronic disease. This means that it is ongoing. There is no cure for LS. However, since any scarring or fusing caused by LS is permanent, it is very important to manage your LS symptoms with topical creams.The intensity of symptoms associated with LS varies because individual cases may be mild or severe, or somewhere in between.

Common Lichen Sclerosus Symptoms:



Intense Itching

Discomfort and Tenderness

White Spots, Often Shiney

Bruising

Painful Intercourse

Ulcerated Lesions

Diagnosis
How LS is diagnosed
When talking about lichen sclerosus, it is important to first discuss which doctors are most qualified to diagnose and treat the disease. Most family physicians will not be familiar with LS. Since it is a skin disease, dermatologists can diagnose and treat LS. If you are female and have LS on your vulva or anus, you may be more comfortable going to your gynecologist. Whether you're male or female, if LS is affecting your urethra you may even find good care under a urologist. Which ever type of doctor you decide to see, be sure they are very familiar with LS and its variety of treatment options. If your doctor does not seem to be very informed about this rare disease, then find another doctor.

Some doctors diagnose LS with just a visual examination. If the patient complains of pain and intense itching and the doctor observes the telltale shiny white spots, then he may be very comfortable with diagnosing LS on the spot. Many doctors will recommend a biopsy to be sure. The biopsy is called a punch biopsy. A punch biopsy is performed (after the skin has been numbed) with an instrument that punches out small plugs of skin (the size of a matchstick head).