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I am thankful for a diagnosis, a label to my pain for once in my life. A validation, a recognition that my pain isn't just passed off as "just thrush". I cannot tell you the number of times that doctors, specialists, gynaecologists have told me that my symptoms were just thrush and I should simply use Canesten. Now don't get me wrong, I am not putting down thrush as I know that can be unbearable and a battle in itself. But I knew for a fact it wasn't thrush that I was facing, no matter how many people told me otherwise.
The excruciating pain first started when I was on my Erasmus year in Denmark, and I remember being hardly able to walk with the pain. One day that stuck out to me, in particular, was when I was walking back from the beach and I was in so much pain my boyfriend had to carry my bag for me, and I had to regularly stop to catch my breath. Another time I was on holiday in Krakow, and it was hurting me so much we had to go into a pharmacy and ask for thrush cream. It was quite a humorous moment as the pharmacist barely spoke any English, so we ended up having to act to her that I had an itchy and burning vagina. There I was with my two friends in a foreign country, acting out that my vagina was burning. I even smile at the recollection now. Finally, the pharmacist cried out, "aaahhhh mushroom!!" and handed me a pack of Canesten. But even this white and red thin tubed cream could not provide the relief I needed. I remember heaping on Canesten, hoping that it would relieve something, but still nothing. There I was trying to enjoy my Erasmus, trying to enjoy life and this excruciating pain seemed to follow me everywhere I went.
This pain continued into my final year at University, I used to sit curled up on the couch screaming from the pain. One time it got so bad that I had to go to A and E. It was also my mums birthday that day, and I remember feeling so guilty that I had tainted the celebrations. It seems that I always have one health problem or another, so much so that I feel people are no longer surprised when I am sick or when I have a hospital appointment. I feel people have sort of become desensitised to my pain, my sickness or my feeling of nausea. Maybe they think that I am a hypochondriac or, as my brother said, "if you go looking for something, you will probably find something." Anyway, I am getting side-tracked. So, I was rushed to A&E, and they did a quick vaginal examination and just concluded it was once again vaginal thrush. She then put me on a six-month treatment for thrush, which consisted of taking Fluconazole 150mg capsules once a week. As well as this, we tried to see as many specialists and doctors as possible to get a second opinion as I was so adamant it was not thrush. My mum took me to one specialist who even said that I had 'an angry vagina' but still provided no answers.
I was beginning to get more and more miffed off and feeling increasingly depressed. Whilst this was all going on, I was also dealing with my Uterine prolapse diagnosis and had been referred to a psychosexual therapist on the NHS for the pain I experienced during intercourse. The therapist I was originally referred to was finding it very hard to help me as I was actually refraining from having sex at the time because of the agony I was in. So she couldn't really help me with the pain I experience during sex if I wasn't actually having sex. She then referred me to her senior, who unbeknownst to me was also a gynaecologist. I remember walking to this appointment feeling somewhat hopeful, but I also had that gut feeling that it would just be passed off as thrush once again. In the appointment, she asked me to explain all my symptoms, how long they had been occurring for and then went on to do a vaginal examination. Straight away, she just turned to me and said, "you have lichen schlerosus". Now at the time, I had not a clue what that was, but those two words changed my life. On the train home, I googled this condition and every single one of the symptoms resonated with me. My pain felt validated; I felt understood and seen. She then prescribed me a steroid ointment called Dermovate which I was to apply twice a day straight away. After a few weeks, I noticed a massive difference, and my "angry vagina" became not so angry. My flare-ups greatly reduced, and now I can happily say I haven't had a flare-up in almost five months.
Recalling my journey actually fills me with red hot anger as although I went to multiple specialists, doctors, gynaecologists, I was consistently turned away either with a recurrent thrush diagnosis or a UTI diagnosis.
All in all, it took me over 1 year to receive the correct diagnosis. The most shocking thing is that my story is not unusual. Thrush is a very common misdiagnosis for those with lichen sclerosus, and the time it took me to receive the correct diagnosis is compared to average actually quite quick.
It takes roughly 5 to 15 years for lichen sclerosus to be correctly diagnosed.
Take a moment to let that statistic sink in.
No one should ever have to wait that long to receive a correct diagnosis.
I was in agony for a year, and I truly cannot phantom how some people go 5 to 15 years in this pain.
This statistic HAS to change it is simply not acceptable.
Early diagnosis is so crucial for managing LS but also for the patient's mental health.
I only received a diagnosis because I kept pushing, I would not take thrush for an answer, and I had to advocate myself with my doctors. But this shouldn't have to be the case; we should be taken seriously regardless. We deserve to be listened to.
So, let's make some noise and raise awareness of this condition. This can help people get an earlier diagnosis and stop being told they have thrush when in fact, they may not. It can also shorten the time people experience this excruciating, debilitating pain.
NOW is the time for a change. Around 12% of women with vulva LS have a daughter with the same condition; I do not want my daughter to experience the agony that I suffered for over a year. So let's break the stigma surrounding these conditions and enable open and non-judgmental spaces for people to discuss their symptoms devoid of stigma and embarrassment.