We are very excited to offer you Part 2 of the interview with a woman who, after receiving a mind-bending diagnosis, refused to give up, and found relief, that she says saved her life.

Meet our friend, whom we will call “Paula” in order to protect her privacy.  We do encourage you to catch up with Part 1, found here

We also extend a heartfelt thank you to Paula for stepping up and providing this priceless interview, so that other women in her situation might find relief for the heartbreaking, lifelong sentence that comes with the diagnosis of LICHEN SCLEROSUS.

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Silhouette of six young women, walking hand in hand

Q:

So tell me about the day of the procedure. Your thoughts, how you felt going in, and what the procedure was like, as much as you can remember.

PAULA:

I remember thinking, if this gives me at least 50% relief… I’m going to be impressed. I will be happy, and maybe I can live with that.

The day of the surgery, [Dr Newman] was very confident that he was going to give me [near] complete relief, because I’d only had the disease for two years… so I didn’t have the ripping or the scarring or any of that to deal with. So he was very confident that he was going to give me at least 95% to 100% relief… and he was right.

There are still days that I am still a little irritated, but I would have to say that he kept his promise… He knew what he was talking about. And the day of the procedure… everybody was just so professional and so relaxed about it and so confident, that they knew what they were doing, and they just treated you very special… and knew that they were going to provide you relief.

Q:

What did you think of his staff?

PAULA:

I loved the girls. The girls were all very professional. They did whatever they could to accommodate you. They drove me back to my hotel after the treatment. They called after a couple of hours… to make sure I was ok. The last call of the evening was from Dr Newman himself to make sure I was ok, if I had any concerns. The girls were just great. They were just awesome.

Q:

Did you go out there by yourself?

PAULA:

It just so happened that my husband had a trade show in Los Vegas. So I made the trip out myself, but my husband did fly up from Vegas to be with me the day of the procedure.

Q:

How long did the procedure take, start to finish?

PAULA:

I think from beginning to end, it was between 4-5 hours… from the time that they harvested the fat, and *** or whatever it is they do to it, and re-injected it, and I was up on my feet, walking out… it was between 4-5 hours.

Q:

Did you have any kind of anesthesia?

PAULA:

They just give you a pill to relax you, to make you not care… and it worked. I as awake through the whole procedure, so there was no grogginess to get over with the anesthesia, or upset stomach, or fuzziness, or anything like that?

Q:

Were you able to ask questions; were you fairly lucid during the procedure?

PAULA:

No. I was very much awake, and I remember talking to Dr Newman, although I tried not to. I didn’t want to disrupt them. I thought these people know what they’re doing… let them concentrate and do it.

Q:

So, immediately after the procedure, you were driven back to your hotel. What did you do the rest of the day?

PAULA:

I pretty much slept for the rest of that day. I had a pretty rough week, getting things caught up before this trip, and being miserable with the LS and everything, I didn’t have much sleep. After the procedure… got relief, and I was just a little bit relaxed from the medication, it was a good opportunity to catch up on some sleep, and I did. I do remember that. I slept, pretty much the rest of that day. But the next day, I went in and I had a check up with Dr Newman. My daughter drove up from [her town], and picked my husband and me up to take us down to her place for the day, and we went to the San Diego Zoo.

Q:

Whooooa! You went to the zoo the next day???? Wow!

PAULA:

It was 2 days later.

Q:

Well, tell me how your body felt? What were the symptoms that you had immediately following? Those two days, how did your body feel? Did you have swelling? Did you have pain?

PAULA:

My stomach was swollen a little bit; because that’s where they harvested the fat from. And before they harvest the fat from you, they blow you up with water, so your system is still draining the water off a little bit. So I had a little bit of swelling on the tummy from that, and then I did have a little bit of swelling on the injection site, but nothing that was uncomfortable. I mean, you knew that you were a little bit swollen, but it was nothing that bothered you. But I had immediate relief from the itch. I mean, it wasn’t 100% relief, but it was immediate relief from the itch, to the point where I actually got some sleep and could think about other things, other than the itching.

Q:

Let me ask you… with the LS, did you have constant itching with worse flare-ups sometimes, or just flare ups from time to time?

PAULA:

In the beginning, it was just a flare up from time to time, but it didn’t take it long to progress to a constant itch, and then I would have a bad flare up where I would have, on occasion, break out in blisters all over my genital area and going down my thighs.

Q:

Were you having a flare up when you went in for your treatment?

PAULA:

No.

Q:

So you immediately felt relief. Did you need to take any kind of pain relief after the treatment, or was it just not painful?

PAULA:

It wasn’t painful. I did not take any…

Q:

You went to the zoo 2 days later… Wow.  What was your last check up in CA…? I mean, post surgical, immediately following, before you went home? How many times did you see Dr Newman?

PAULA:

I just went back one more time. My last procedure was March 20.

Q:

The first procedure was in September? So you went, and 2 days later you went to the zoo, and then, did you go back to see him again, or did you leave and go home?

PAULA:

I went back Monday for just a last minute check up, because I traveled so far, he just wanted to make sure that the harvest site looked ok. He was more concerned with infection setting in at the harvest site, rather than any of the injection sites for the LS. They wanted to check that since I traveled so far. So I went back Monday morning for my last check up, and then I flew out of L.A. Monday evening.

Q:

So what was it like, going home?

PAULA:

It was an all-night flight, and I didn’t land… did not get home ‘til about 10:30 Tuesday morning. I flew, literally, all night. To be honest with you when I got home, things were a little irritated or swollen when I got home, so I spent the rest of my first day home icing  things down and just stayed off my feet and took it easy. Like: Ok… let’s let everything settle down and let the body heal and do its thing. And then pretty much after that day I was back on schedule with things.

Q:

So were you kind of constantly taking mental inventory to see if you were feeling any discomfort, expecting to feel discomfort…

PAULA:

Yeah, yeah, yeah… every day it seemed like: oh my gosh, I’m not itching! I was totally taking inventory of how I felt and how I was doing. I was like: I’m going to eat this and see if it affects anything… or I’m going to eat that, or I’m going to have a cup of coffee and see if it affects anything. I was pretty much taking total inventory for a couple of months. And actually, I still do.

Q:

That was in September. Why did you go up for a follow up in March?

PAULA:

It wasn’t so much a follow up. Once they harvest fat from you, they can store it for [up to] 12 months, and you can go back to get two more treatments if you needed to. I had a couple of spots that were still bothering me, so I went back in March to get those taken care of.

Q:

Since March, when Dr Newman addressed those areas, how have you felt?

PAULA:

Those areas don’t give me any problems at all anymore. It seems strange to me that my first treatment, I got home and things seemed like they started just getting better gradually, every day, every day, every day, I would feel that I itched less and less and less. Even though Dr Newman warned me that I could have a flare up, but I never really did, after the first treatment. But my second treatment, I did have a flare up. My second treatment, it seemed like it took a good week, maybe even 2 weeks, for things to settle back down. I knew I was more irritated and itching, when I came home from my 2nd treatment. After those 2 weeks then things just started getting better and better and better. I have one little spot that still bothers me. But I’m hoping that maybe within a year it will take care of itself. Dr Newman said that it takes the body one year to heal anything… so I’m hopeful that within a year, I won’t have this little spot irritating me either.

Q:

Isolating the way you felt in your mental and emotional state before the treatments, and looking at your life now, when you wake up get dressed and go about your day. How would you compare your life now, to the way you felt before the treatments?

PAULA:

Number one, I am very, very thankful every day. Every morning when I wake up, it’s like… oh my gosh, I got another full night’s sleep. Nothing itched. Nothing woke me up. I am like, thank you God, for doctors like Dr Newman. It’s been a big change, getting back to the normal daily routine of life again without having to worry about, “Oh my gosh, I’m itching so bad I’ve got to go do a sitz bath, and I’ve got to do a cream… [then] that didn’t work, so I’ve got to take time to put some ice on things.”

Before the treatment I was spending about 75% of my time in the bathroom, on a sitz bath to get relief. I read more books in that length of time than I think I read in my whole life.

Q:

Because I didn’t understand clearly what you said, and I want to make sure I get this answer… what percentage of your time were you spending tending to your discomfort?

PAULA:

About 75% of my time

Q:

That’s what I thought you said. That’s amazing. I said “That’s not possible,” but I did understand it.

PAULA:

It was very frustrating because we are a working family here. We are a small working family, and I don’t have somebody else to take over getting the bills paid for me or taking care of taxes. If I don’t do it, it’s going to sit there until I do do it.

Q:

You don’t get sick days.

PAULA:… Everything was backing up and I didn’t care.

Q:

How about your husband? How has your relationship, emotionally, mentally, stress wise, physically… how has this treatment impacted all those things with your husband? How has your emotional state, sense of confidence, your ability to spend time with him intimately… has any of that changed after the treatment with your husband?

PAULA:

It has changed. We can be intimate again. It’s not like it used to be, but we can be intimate. I blame some of that just on being 55 yrs old and some of the things that post menopausal women go through. At least we can be intimate again. I am more confident with him. I’m just more confident in day to day life again, that I can focus again, and get through my day without thinking about L.S. all the time and how much it’s going to distract me today.

Q:

Do you know any other women who have had symptoms of L.S.?

PAULA:

I do know one other woman, personally; although she’s never gone and gotten a diagnosis of L.S. But it sure sounds to me like that’s what she has. She did go and have a biopsy done, but she told me that they never really came back to her and said that it was definitely L.S. After my experience, I’m not so sure that any doctors around here would know if it was L.S.

Q:

What would you say to women who are having consistent problems with itching; who are not responding to treatments for yeast infection, or for whom steroid creams are not working… what would you say to them?

PAULA:

As soon as you can schedule an appointment, go. Go get relief. Go get your life back. Go get your sanity back. Go. If you have to beg, borrow or steal the money, do it.

Q:

Now you were very clear, and obviously Dr Newman was very clear that this is still experimental, it’s not covered by insurance, and sure, cases are different, depending on the amount of treatment needed. Leaving the quoting of the procedure to Dr Newman, as far as the specific price, what would you say was the value of going and having this done, and paying for it out of your own pocket?

PAULA:

To me the treatment was priceless. It gave me my life back… It gave me my life back. It gave me my life back with my husband.

Probably, totally between the trip to see Dr Newman and the plane ticket, I spent over 10 thousand dollars. You can’t compare that to getting your life back. You’re going to work some way to make up 10 thousand dollars in your life… if you need to. To some people ten thousand dollars is nothing. I wouldn’t hesitate to do it again. If this gives me relief for the next 2, 3, 4 years, and if I have to go through it again, I’d go through it again.

Q:

That was going to be my next question. What if it turns out to be the kind of thing that is going to be a recurring, long-term treatment for comfort? How do you feel about that?

PAULA:

I would do it again.

Q:

I have only spoken with one other person with L.S., and I have heard a testimonial [from] a person with L.S. I cannot imagine that sentence, when you hear that diagnosis, and they say, “I’m sorry. You’re stuck with it.”

PAULA:

I cried the whole way home. I was like, “I can’t do this. There is no way I can do this.”

Q:

I can’t imagine getting a diagnosis like that. Let me ask you… I admire you and I am grateful that you came forward to talk about this, because without people like you, another woman like you [might] be stuck with a misdiagnosis, and possible years of misery. Why did you decide to talk so openly about this?

PAULA:

So that other women do know that there is a [treatment] out there. Even though there’s no history on how long it will last, there is a [treatment], and there is relief. Why on earth would you not go do that for yourself? For yourself and your family? Other women have to know about it. They have to know there is hope and help.

I talked to a girl the other day who is 22 years old. I can’t imagine her looking forward to the rest of her life, dealing with this… Not being married; not having any kids yet, and just dealing with this every day of her life until she dies.

You know, I thought on the way home, when I was told about this, that I was going to have this for the rest of my life… I remember thinking… I rather they told me “You have terminal cancer. Live it up for the next 6-8 weeks, because that’s all you got.” I think I could have, would have dealt with that better, knowing, “Good, I don’t have to deal with this much longer…” and it probably would have just gotten worse.

Q:

Listen, you are an amazing person for stepping up and talking about this. God bless you for your struggles and your strength, and your unwillingness to give up. Thank you so much.

 

NOTE: This content does not constitute health advice or establish a doctor-patient relationship.