I think the hardest part about having LS is the emotional tole that comes with it. I’ve been dealing with LS for 15 years now and I really have had enough.
Last week I had yet another infection under my clitoral hood. This time I caught it and got on antibiotics in time to clear it up before it developed into another abscess. Even though no one other than my husband and mother knew about the infection, it’s humiliating. I’m ashamed of my mutated lady parts. I feel dirty and nasty to keep getting these infections and to have a vulva that’s shrinking away is demoralizing.
While I am eternally grateful that I can at least have intercourse now (because in the past it was completely impossible due to tearing and intense pain), I am also extremely depressed to know that I will never, ever have a normal sex life. I’m young, in my thirties, and just so not ready to have to deal with this for the rest of my life. But, even more so than mourning the loss of my own healthy sex life, I’m really sad for my husband. This has been really unfair to him and he has been a champ. He’s never complained once. He’s never gotten to the point where he stops caring about whether he’s hurting me or not…and I find that amazing after a decade and a half of this.
Right now I’m dealing with a lot of negative feelings. I’m tired of itching, hurting, having my vulva shrinking away (which is also uncomfortable). But most of all, I’m tired of how Lichen Scelrosus has robbed me of a normal, healthy sex life. It makes me feel like less of a woman. It’s impossible to feel sexy with a disfigured vulva.
Right now I’m just struggling with a lot emotionally and desperately want to feel normal, but know that I never will be. I wish there was a cure.
Well, things only got worse over the weekend. By Saturday morning, it was very clear that I had an abscess. My clitoral hood swelled up and was definitely fluid filled. It looked like I had two large oblong grapes stuffed end to end inside my clitoral hood. The mass was so large that walking was miserable. Wearing underwear was miserable. Actually, just being alive was miserable.
I told my husband just enough about my situation for him to understand why the housework was piling up and I was laying around with a heating pad on my privates most of the time. But, having a huge, disgusting, infected abscess on my genitals was mortifying. The shame and embarrassment far outweighed the pain and discomfort and that’s saying a heck of a lot. I feared he’d find the idea of ever being intimate with me again revolting.
The abscess got larger over the weekend. If I had anything looking that serious any where on my body I would have gone to the ER. But I didn’t want to go to the hospital and get an ER doctor that isn’t familiar with LS to man handle my very delicate vulva and treat me like a promiscuous tramp that had an STD. So, I suffered through the weekend and waited for my doctor appointment which was Monday morning.
My doctor was booked, so I had to see her nurse practitioner. She took one look at me and gasped in horror. It was an immediate reaction to how disturbing my vulva looked. She gathered herself quickly, realizing how unprofessional her response had been and how humiliated I was at just having to be examined with an abscess on the most sensitive, private part of my entire body.
She said it needed to be lanced and drained, but due to my LS she was fearful to do it herself and rescheduled me to have my OB/Gyn, who is also a talented surgeon, perform the procedure on Wednesday. Great, two more days of this!
The rest of Monday and Tuesday was a nightmare. If I had been the more emotionally fragile woman that I was eight years ago and without children who depend on me, I would have killed myself. Men are comfortable with their genitalia. They have no problems adjusting themselves in public or letting the world know how proud they are of their privates and how much they identify being a man with that part of their anatomy. But, we women too identify ourselves with our womanly features. We don’t walk around discussing our clitorises, but I truly felt less of a woman, even less human, to have a mutated clitoral hood. I was worried that my LS had progressed to a point that my clitoral hood would never recover. That sex would never be pleasurable again. That I was only 35 and would have to live the rest of my life with this pain and discomfort.
Tuesday night I went to bed and suddenly felt wet, just like when my water broke with my first baby. The abscess had burst all on its own and was draining. This turned out to be a huge blessing according to my doctor. Wednesday morning when she examined me, there was no longer a need to lance the abscess. She said lancing would have been extremely painful because the clitoris is very difficult to numb. She told me to take lots of hot baths, stay on my antibiotic, and just let it drain.
So, that’s where I am now. I have a terrible case of LS. My vulva is shrinking away. My clitoral hood is fused closed. I have a mass the size of a grape on my clitoris. And as if that wasn’t all enough, I now have an open, jagged wound were my abscess burst.
I hope to be healed soon.
Well, I followed my doctor’s advice and used my Clob two times a day, but things have not gotten better. My clitoral hood is still pretty darn tight and now it’s starting to swell up. It’s also very, and I mean very, itchy. The itch in fact is maddening!
I think I have a yeast infection in my clitoral hood. I’m using Monistat cream externally and finding a tiny bit of relief. I’ve called my doctor, who is about to call me in some Diflucan to control the yeast until I can get in to be examined. The earliest they can squeeze me in is Monday, so I’ll have to suffer through the weekend.
I’m also taking grapefruit seed extract capsules and probiotics to help keep the yeast in check.
My own case of lichen sclerosus has recently gotten very bad. I am having a lot of itching, which in itself is miserable. But my main complaint right now is the fact that my clitoral hood has fused closed. In the past, it has fused closed and I have gotten it partially unfused by applying Clobetasol two times daily for three months while also trying to gently tug the skin apart where it has fused. When my clitoral hood fuses closed it causes a lot of discomfort because the hood is intended to retract. When it can’t retract, it causes pain when I walk because the skin pulls and sometimes even tears. Words really can’t describe how awful this can be since the clitoral hood and clitoris are the most delicate and sensitive parts of the entire female body.
This time my hood fused closed and the skin has pulled so tight that it’s putting pressure on my clitoris. My clitoris is actually hard. The clitoris becomes erect when aroused, just like the male’s penis. My clitoral hood is constantly rubbing my clitoris, making it erect without any relief. It’s very unpleasant.
I went to my doctor yesterday. The good news is the hardness I’m feeling under my clitoral hood is in fact just my clitoris, meaning there is no growth or cyst in there. The bad news is there is no immediate relief. My doctor believes surgically releasing the hood to retract will only make things worse. So, I’m to do as I’ve done in the past: Clobetasol two times a day while trying to tug the hood loose. I’ve been using the Clob two times a day for just four days now, and the hood is already not as tight and not hurting quite so bad when I walk, so I’m beginning to feel quite positive that with diligent treatment, I will get better.
I share my experience not to frighten or discourage you. If you’re own case isn’t this bad, please do not worry. Every case is different and my own LS has been left practically unattended since November of 2005 because I’ve been pregnant three times and breastfeeding them all since then. Instead, I share this to give hope to those who do experience an extremely bad flare up such as this. I also share this as a warning of how bad LS can get when you don’t stick to your maintenance dose of Clobetasol.
Lichen sclerosus is always on my mind. That is why I finally started this blog. To someone without this disease, it may seem like you simply put a cream on until things get better and then forget about it. But that is not the nature of this disease.
I was diagnosed with LS about 12 years ago. Since that time, I have never had an entire day pass by without my being aware at least once of my LS. I have discomfort when I urinate. It stings a bit. I spent 2 years going to the doctor with what I thought were bladder infections or UTI’s and now I know it is just how my LS feels. It hurts worse later in the day from the irritation caused by multiple trips to the toilet throughout the day. Night time seems to offer my skin a chance to rest and by morning the tenderness is mostly gone, only to return again throughout the day. I also have LS on my rectum, so I tear and bleed with each bowel movement. Fiber supplements help, but I have LS so bad around my rectum that no amount of fiber supplements seem to stop the tearing.
When I’m not having a flare up, I tend to only be aware of my LS when I use the toilet or when I’m contemplating being intimate with my husband. But during a flare up, like now, I have pain off and on throughout the day. I may take a step that causes a tear or a sharp pain. I may sit or stand up in such a way that it hurts the delicate skin. I also get odd sensations during a flare up like pulling, tugging, and pinching. I mention the pain and discomfort first because the pain is always hard to block out or forget. But I also have the incredible itch. The itch, for the most part, I learned to block out years ago. I do catch myself scratching subcontiously sometimes. But unless something draws my attention to my vulva, for instance a sharp pain or a tear, then I forget about the itch.
Even when I’m not in the middle of a flare up, I still think about my LS because it is like the huge white elephant in my marriage. My husband has been a true champion through all of this. I was diagnosed shortly after we married. Our entire marriage has been affected by this disease. We had a very brief period of care free, enjoyable sex before my LS got bad. I haven’t experienced pain free sex in 12 years, which means my husband hasn’t experienced worry free sex in 12 years. I think about all the women who don’t have this disease and can have fun, playful sexual encounters with their husbands. I grow tired of friends that complain to me because their husbands want the occasional quicky because sex is so laborious for me and my husband that being able to have a fun quicky would be so exciting.
As I age, my LS gets worse. My skin is dryer all over my body and I already notice a loss in elasticity as compared to when I was in my 20′s. This has made my LS symptoms become more severe. I’m not looking forward to what my LS will be like in my 40′s, 50′s, and so on. I knew getting this disease at such a young age would mean somewhere down the road things would get ugly. But, for now I’m going to be like Scarlet O’Hara in Gone with the Wind and just think about that tomorrow.
Testosterone was the old treatment that was routinely prescribed by gynecologists for vulvar lichen sclerosus. I was given testosterone when I was first diagnosed. I thought it helped me a lot, but the itch worsened. That’s when my Ob/Gyn prescribed a compounded ointment of testosterone (increase from 2% to 5%) and added 5% hydrocortisone. My itch, which was severe…I scratched until I bled, went away in a week and my over all LS symptoms seemed to improve. My skin was less delicate. I was able to again have intercourse with little to no tearing. I could wear jeans again. I could walk without pain.
I was convinced that the testosterone was the cause for my improvement and now I’m not so sure. This is very important because testosterone treatment has side effects. We ladies have small levels of testosterone naturally. But to add an increase of this hormone to our bodies does have draw backs. When I first began using testosterone I noticed a markedly increase in libido. I also noticed that when I exercised it was much easier to put on muscle and lose weight. While those side effects may sound desirable, the other effects were not. I began to grow hair on my face. I developed a mustache that was noticeable enough that I would go to the salon once a month to have it waxed. I also began to grow hair on my chin and in between my eyebrows. After being on testosterone for 6 months, my voice began to deepen, which frightened me so I quit using it completely. My voice returned to normal within a week, but now years later the excessive facial hair remains. It’s really difficult to emotionally deal with feeling less womanly due to my mutated vulva from LS, but it’s quite devistating to add to that the masculine traits caused by the use of testosterone.
A woman who has dealth with LS far longer than I have mentioned that testosterone is now thought to not help LS at all. She suggested that my improvement may have been a result of the ointment itself instead of the testosterone in the ointment. I also failed to mention to her that my ointment had hydrocortison in it as well. Since I improved quickly after using the combination testosterone and hydrocortisone ointment, I now believe my improvement was due more to the steroid than the hormone.
Today I came across a study in which two groups of women with diagnosed LS via biopsy got their LS under control with the use of Clobatesol, which is the most accepted treatment for LS. After the symptoms were under control, one group was put on testosterone to maintain the results and the other group was put on a placebo ointment. The group that used testosterone got much worse and the group that was on the placebo maintained much of the positive results received from using the Clobatesol.
My lichen sclerosus is really bad right now. I had 3 babies back to back. With the pregnancies and breastfeeding, I’ve been doing very little to treat my LS for four years now. I had planned to get back on testosterone after I weaned my baby, but am now rethinking that. Instead, I will get back on the Clobatesol 2 times daily until I get well enough to get on a maintenance dose.
It may sound silly to someone who doesn’t have LS, but the symptoms can wreak havoc on your entire life.
The itch can become too intense to live a normal life. It’s embarrassing to admit, but I’ve had flare ups that were so bad that I didn’t leave the house unless absolutely necessary. I itched so bad that I wasn’t able to refrain from scratching.
LS can also cause a terrible burning sting. While uncomfortable any where, this symptom is particularly uncomfortable on the urethra. If you develop LS on your urethra, the burning can make you fee like you need to urinate all of the time. This terrible sensation also kept me confined to my home for some time. The only relief I found when LS attacked my urethra was sitting in a lukewarm bath with baking soda. Some days I took up to 5 baths because I was so miserable when I was out of the tub.
Many women with LS are post menopausal. But for those of us who aren’t, our menstrual cycles pose yet another challenge. Blood is an irritant; therefore, any blood touching the LS afflicted skin only aggravates the condition and can even lead to terrible flare ups. Some women find relief by wearing tampons instead of pads, but some women with LS find it difficult to use tampons.
LS can also cause fusing and scarring. In some women, LS causes their inner labia (labia minora) to fuse with the outer labia (labia majora). This results in scarring that can cause the inner labia to disappear completely. LS can also cause the clitoral hood to fuse completely closed, making intercourse less enjoyable. The scarring and fusing can also cause intercourse to be very difficult. Sometimes the skin thins to the point that severe tearing occurs every time intercourse is attempted. Not only is the tearing painful, but it leads to more scarring. All of this scarring and fusing often makes a woman with LS feel less feminine and can even lead to depression.
Perhaps the biggest complaint among LS sufferers is how this disease can be devastating to a romantic relationship. Since LS can scar, fuse, and narrow the vulva, it can make intercourse not only painful but sometimes impossible. This can pose serious challenges for even the most committed of relationships.
I have certainly been through my share of ups and down with this disease. As a newly wed, in my early 20′s, I was suicidal for a good two years after my diagnosis. Had my husband complained just once about the affect LS had on our sex life I have no doubt that I would not be here today. If you find yourself feeling extremely down or depressed about your diagnosis then please seek help.