Living With Lichen Sclerosus- My Story.

Warning - contains graphic content about my lady garden region.

I held the clothing in one hand and wielded the scissors in the other. I took a deep breath and hacked a hole. Nope. I was not getting revenge on an unfaithful lover. I was adapting items in my wardrobe for life with Lichen Sclerosus.

scissors Photo by Matt Artz on Unsplash

I wasn't sure I was ever going to share here the fact that I have been diagnosed with Lichen Sclerosus (sometimes spelled sclerosis but either way, LS for short). I am embarrassed but in the hope that it might prevent someone else having to go through the years of misdiagnosis and agony I have suffered I am going to publish and then maybe run away. Anyone have any long distance movers info to share?

Some of you who either know me in real life or have been following my blog for a while will know that generally I don't shy away from discussing intimate issues. I've happily written about condoms, urinary incontinence and piles, childbirth, breastfeeding, depression and more. I'm a fan of (over) sharing.

But this, this is a little different. Here's my story so far *Takes a deep breath.*

words lichen sclerosus in frame

OK so a couple of years ago I started to feel things didn't feel quite right "down there." I went to the doctor when it started to impact my love life. For a few months, depending which doctor I saw, my issues were diagnosed as a prolapse, not a prolapse, maybe a prolapse, possibly something menopause related and, most ridiculously from one locum, a sudden fear of sex. With my husband of 25+ years. After having had seven children.

Thrush, shingles, an STD - all these have been thought of and treatments attempted. After a difficult few months at the end of 2018, the stress of which which seemed to make everything even worse in my undercarriage area, I decided to trudge reluctantly once more to the GP surgery, paint on an embarrassed smile and beg once more for another attempt at finding relief from my symptoms which were by then pretty much occupying every waking moment and waking me up in the night.

Ah yes, the symptoms. Imagine something like epic bad itchy thrush on broken skin with peeling and pain. Imagine your intimate areas tightening and closing up so even going to the toilet, no 1 or 2, becomes difficult and often painful. Imagine the horror of realising your "architecture" (the official term for your sticky-out bits and pieces in that region) is changing, melting away, disappearing. You might see white patches, wrinkled and/or split skin.

LS is on a spectrum and some people never know they have it. Some (more unlucky people) end up having surgery. Those with symptoms generally endure an endless regime of cream, ointments, potent strength steroids long term and more. LS is not contagious or a sexually transmitted disease. It is thought to be an autoimmune condition although some dispute this. Whatever, there is no cure.

I haven't been able to wear jeans for about a year. Even coloured or lacy underwear causes irritation and makes my skin in that area slough off. I end up with skin splitting, red raw, unable to sit or stand for long.

I did wear loose trousers for a while and occasionally manage them with my sensitive skin protected by plain white bloomers but to be honest to have any hope of keeping the split and raw skin at bay mostly it's long skirts and going commando. Which sounds sexy but with the symptoms I have sexiness doesn't come into it. At this time of year it's chilly too! Hence why I was hacking holes in my woolly tights and leggings in an attempt to make them crotchless.

Talking about the lack of sexiness I must say my husband has been a star. He is endlessly patient and loving and supportive and I am very lucky that he believes in his wedding vows which stated "in sickness and in health."

I was very worried once my undercarriage architecture started disappearing that he would not feel the same way about me. I was worried he might look elsewhere where (careful) intimate relationships don't have to be timed between flare ups.

We mourned together my changing anatomy ( I especially miss my clitoris!) but even when he realised that my future might involve a Barbie style genital area and surgery to prevent fusing and to maintain the ability to go to the toilet he promised me he would always love me regardless.

I have been very lucky to have the support of friends and family alongside my husband.  I haven't told many people, only my closest friends but they as always have been fabulous, even when I talk graphically about whats happening "down there."

I'm also a member of of a Facebook-based UK support group for women which has proved more than useful for my mental health. By the way, men can get LS too, but for the purpose of this post I am talking about LS in women.

Members of the group compare notes on symptoms, treatments and top tips for coping with LS. There are humorous threads because if you are living with LS you need to keep your sense of humour.  For instance my husband has just walked in and jokingly asked if the tubing in the kitchen sink is something to do with my LS treatment - it's actually the poo pump for my tropical fish tank!

People in the group share their worries about upcoming surgeries, biopsies and more and receive verbal support, encouragement and advice from other members. It's generally upbeat even when members are bemoaning their lot. When one member posted "I miss my jeans!" we all identified with her. It seems a silly thing but it's one more sacrifice to make in the war against LS. If you have LS I strongly recommend you find and join a group like this.

The main reason we are obsessive about successfully managing LS, apart from trying to make daily life bearable, is the fact that LS can (very occasionally) lead to cancer so keeping the area clean and the condition as managed as possible is vital. It has been proved that sticking to the care regime can limit the risk of vulval cancer so tedious as it is, it's worth it.

Perhaps the worst aspect of this condition is how it has affected my personality and mental health. I find it hard to think about or care about much else outside my immediate family, and while I still feel sympathy and empathy for others I'm finding it hard to put my own issues aside for them as I have in the past.  It's even hit my faith. After my husband's heart attack, stroke and knee injury and my diabetes, fibromyalgia and now this I'm starting to feel a little picked on.

I'm sure I'll regain my equilibrium eventually but at the moment I am somewhat wallowing in self pity. Bear with me.

As my main aim of this post was to raise awareness and help others who are suffering with the condition I'd be very grateful if anyone reading it could share it via social media or email it to anyone you know is affected. Many thanks in advance.
 Afra x


If you'd like to read more about LS I found this website useful. This link takes you to even more great resources including the support group I mention.