This is a very special post.  Here is a first-person account of a relatively unknown disease called Lichen Sclerosus, or LS. It’s a disease of the skin that affects both men and women in the genital area. It can manifest in other areas of the body, but it most commonly, and most painfully affects the genital and anal areas.

In this blog post, we are sharing Part I of a 30-minute phone interview with our LS patient. We changed her name to Paula, to protect her identity and privacy.

We hope you never have to deal with this painful and disfiguring disease, but if you do, hopefully, Paula’s candor in speaking about her experience can help you find the answers and solutions you’ll need.

Silhouette of ten young women, walking hand in hand.

QUESTION:

When was the first time that you had any indication that something was wrong?
PAULA:

It was right after the birth of my first daughter, which was almost 8 years ago. I had had a C-section because she was breach; and there was no episiotomy; no vaginal birth involved. But a few weeks later, after I had healed from the C-section I tried to have sex and I tore. It just didn’t make sense because I had had a C-section. So it was really weird. The next time same thing happened, and the next time the same thing happened. Finally, I ended up going into my doctor and was just told, “Oh, it’s low estrogen… you just gave birth… you’re breastfeeding… we’ll just put you on some cream.”

That went on for two years, through two different doctors. And when I finally went to a new doctor that actually knew what she was doing, she knew immediately what it was before she even looked at me. Just by hearing my story on what had just happened, she knew immediately what it was.
Q:

So what were those two years like? They didn’t just float by. What were those two years of misdiagnosis like?
PAULA:

It was extremely frustrating. I mean, I breast fed for a year so they kept blaming it on the estrogen… And the creams that they give you… you have to insert it. I was told to use a larger amount than what I should have been using, so it was causing menopause symptoms like hot flashes, waking up with soaking wet pajamas… So I finally just quit using it because it wasn’t helping, and it was making things worse. I was getting other problems from it… from the side effects.

It was just extremely frustrating because none of it made sense. So after the first year they say, “Well, it can take up to a year for the body to recover from breastfeeding.” So then you wait another year, and you just keep waiting. And it’s just frustrating because you just feel like you’re not getting anywhere and nothing’s ever going to get better.
Q:

How many doctors did you see during that two year period?
PAULA:

I was going to the doctor that had delivered my daughter. She was the one that started telling me that it was estrogen. And I went back to an old gynecologist. He told me the same thing: “Oh they’re giving you too much… you only need a little.”  And then I finally went to a third doctor. We were wanting to try to get pregnant again and have one more child, so I had to find a new obstetrician, and a woman in the moms’ group I was attending really liked her ob/gyn. So I went to her, and started explaining to her, “This is what’s happening, we want to have another child, but it’s very difficult to even have sex at this point.”

She started asking me more questions about what’s happening, and she said, “Have you heard the term lichen sclerosus? Has anybody said that to you?” It just sounded like another language. I had never heard of it.

And she said, “Well let’s just take a look first and let me just see what’s going on, and then we’ll talk about it more.”  And as soon as she looked she said, “That’s exactly what it is.” And then she wrote it down for me and gave me a little bit of information on it. But at that point I was just kind of on my own just to research, but there wasn’t a whole lot of out there. What you read online has changed a little… there’s been a little more information made available in the last seven years, but at that time all you could find was, “This happens to women, usually when women go through menopause.” Well, I was 34 when I had my daughter so that didn’t make any sense, but all the symptoms matched. At least most of them matched what I was dealing with. [This doctor] had me on the estrogen cream as well, but it was a dab on the finger that you apply outside, topically, and that’s supposed to help make the tissue healthy again. And then she also put me on an ointment that was a steroid… Clobetasol  and that’s to fight the inflammation. So I did that for about four years.

Then I heard that there was a vulva specialist in [another city] from the same doctor. She said, “Well, I don’t know that she’ll be able to do anything more for you, but if you’d like I can refer you over.”

I had to submit my records before she’d even see me. Then she agreed after seeing my records. “Yep sounds like a patient I could help.” And I went to her. She didn’t tell me anything more… just changed how often I was using the dosages a little differently, but the same basic principal. And that was it. It was, “Ok, this is it. This is life. This is all we got. Take your creams and go.” And that was the end of it.
Q:

So what was your life and intimacy like with this disease? It’s autoimmune, correct?
PAULA:

Well they believe it is. There are theories that it’s autoimmune, there’s theories that it’s hormonal imbalance, which I believe. I mean, mine came on after pregnancy. There are a lot of women on the Yahoo site that have had the same experience I had. They’ve been in their 20s and 30s and had a baby and it came on. So, just from that, it sounds like it has something to do with hormones. It could also be autoimmune. I don’t know.

At the same time that this all started I also started getting little tiny patches of eczema on my hand. I had gone to a dermatologist and for six months I couldn’t get rid of this little dry patch that kept splitting open… and he said, “That’s eczema. It can come on with hormonal.” That all started at the same time. So for me, I feel like it definitely was a hormonal link.

Q:

So how did this affect your relationship with your husband?
PAULA: It didn’t have a huge impact at first, but over time, it certainly definitely has an impact on your intimacy; and it’s frustrating because he didn’t completely understand what was going on. I didn’t understand what was going on. I just knew that every time we had sex I would tear and it was painful. You get that too many times, you stop touching it. It just kind of diminished everything in that area, we just kind of moved on and did the parent role and the intimacy just kind of disappeared.
Q:

Now it was 2 years before you were correctly diagnosed and then you did another approach to the symptoms for four years, correct?
PAULA:

Yes; for about four or five years before I saw Dr. Newman.

Q:

How did you find Dr. Newman?
PAULA:

I had gotten to the point where the kids were getting a little older. I finally felt like I had a little more time, a little more sense of me, I guess you could say. I was just focusing a little bit more on me and what was going on with my life instead of just being mom. I was getting extremely frustrated that I wasn’t getting any difference from the medications that I was taking. I was getting more involved in eating organic foods and trying to take a more healthful approach to life in general. I really didn’t like the fact that I was pumping steroids and hormones into my body, and I didn’t feel like they were really helping. I felt like they were maybe keeping the disease from getting worse. ‘cause I had read horrifying stories online about people who had the disease who were way, way worse than I was. But I didn’t feel like it was really helping it. So it was kind of like a Band-Aid, in a sense. I thought, “Here I am, in my late 30’s early 40’s, and I’ve got a lifetime of using these creams and ointments of steroids and hormones, and I really don’t want to continue doing this.”

So I went online and thought, “I haven’t looked in a couple of years. I’m going to just do some more research and see if there’s anything new out there on the disease.” And I found the Yahoo site for lichen sclerosus, the group, and somebody had put a posting on there about a doctor in Italy, named Dr. Casabona, who was doing stem cell treatment for this disease, and it was just really showing some promising results. So I just jumped all over it. I started researching like crazy. I started calling any doctor I could find online that I thought would be interested. I talked to so many different people from so many different fields, and nobody had a clue about this. And so I contacted Dr. Casabona in Italy. I was able to find his email online. He then responded to me, and was very interested in having me come over and have the treatment. So we talked for a couple of months back and forth while I continued to try to do some research on it, and he would answer questions and respond back. I was using Google chrome to translate everything. It was kind of archaic as far as what you could understand back and forth, but it was good because I felt like I was making some progress and getting more comfortable with the idea.

I had found some other people who had the surgery over there, men and women, on the Italian forum that I began talking with. It was so new. There just wasn’t much information about it, but I just really felt like I had to at least try it. I talked to my husband and he agreed, so the whole family got their passports. We were ready to buy the tickets, and I was on the computer, going to purchase the tickets, and I thought, “You know, just one more time I’m going to do a search and just see if there’s anything here in the United States that I can find.”

Well, I almost immediately came across Dr. Newman, because he had on his site “vaginal rejuvenation with stem cells,” so when I typed in “stem cells vagina,” it popped up. And after reading the description of that treatment, it sounded exactly like what they were doing in Italy. So I contacted his office and then began dialogue with him. I knew after talking with him, I felt like he was a very compassionate, caring doctor, and he really was excited about this new treatment, and I just really felt like he was the one to help me out. So we bought tickets to California instead, and I flew out and had my first treatment.

Part 2 will be posted next week, stay tuned!