I first became aware I had this terrible disease when for no apparent reason I couldn’t stop itching and burning out of the blue one week almost exactly a year ago! I remember the time because we were due to go on a celebratory cruise for joint 50th and 60th birthdays for my husband and I and also as a delayed honeymoon.
In recent years intercourse had been problematic for us for quite a while, my husband has prostrate cancer and after having biopsies, it had left him with erectile dysfunction. I would also need an antibiotics every time to stop the reoccurring urine infections that I would get every time we made love. I also have Fibromyalgia and am registered disabled so am used to unusual pains etc.
However this burning and itching was something else, I also noticed one side of my labia seemed longer and thicker than the other.
I booked in to the GP, she didn’t say anything but agreed to send me to see a consultant gynaecologist . As I have a private health care scheme and was going away in 7 days I told her I would see someone privately first of all.
My first appointment was at a BMI Hospital. I saw my consultant, who barely spoke to me. She asked me to pop up onto the couch, had a quick look. As I was getting dressed she told me I had Lichen Sclerosis , that I needed to apply this steroid she was going to give me very liberally, all over 3x a day that I should get through 3 tubes in about 1 month when she would review me for a biopsy to make sure there wasn’t any cancer, and off I go! My head was swimming!! I had just been given a diagnosis for what? What is it? What happens now? Will it go away? Why do I need a biopsy? What was this medication?
I came home and cried. Then I looked up the words Lichen Sclerosis and found the name Jane Lewis, I messaged Jane on messenger and explained what had happened, she gave me the details of the the Lichen Sclerosis UK support group on Facebook. This turned out to be my lifesaver. Thank goodness I listened to my wonderful friends/family on there who said” how much dermavate”!!!!!! You will be red raw!!!!! So I only put on the normal twice daily etc.and was guided by my wonderful experienced ladies and pharmacist.
After returning from our cruise I decided to see another consultant as my LS was still out of control and my Vulva was looking very strange. I researched and found a lovely consultant locally. When I saw her she was indeed excellent and it was such a different experience. She took the time to explain what LS is, where exactly I have it, she then gave me a whole leaflet on the best ways to look after it how to get into remission. Then she said that she didn’t think I needed to go through a biopsy as it was too stressful and that someone like her was experienced enough to see and judge it. I explained to my consultant that I couldn’t afford to see her any more privately and she said that’s not a problem as she would ensure I could see her on her NHS patients list. A fabulous, kind doctor who even took the time several time’s to follow up with emails sent home. I left with more knowledge on how to use the dermovate and on a strict regime of using it with moisturisers etc.
Finally my NHS appointment came through, at this point my LS was again out of control due to going through an incredibly stressful time. I went along to it, only to find I’m under a different doctor yet again. He takes one look, says “ hmm not sure what that is, but don’t think it’s LS ( even though I showed him the letters from both other consultants) then he calls in a more senior doctor who then agrees with him! They then decide I need a vulvoscopy and to be seen by a Vulva specialist. But this again can take time and if I could go privately I should.
Again I’m bleeding with an incredibly sore Vulva my shape is changing rapidly, so I ask my private Gynaecologist who she would recommend. Then I go and see this fantastic lady a Vulva specialist. . Again this lady takes one look, says it’s LS with moderate -severe vaginal atrophy, this is actually the first time anyone had said these word. I knew this, but no one had confirmed it!. I felt sick, now it had been confirmed, my worst nightmare. She says she doesn’t need to do a Vulvoscopy straight away but can do it later on, as I’m booked in on the NHS I may as well have it done there anyway. . I get the pricing for it privately anyway just in case, and I’m covered. But she also says I can see her in the NHS. She gives me loads of advice, everything from diet to what to wear. She has now also included 2x a week vagifem into my meds to help with the VA and said to use coconut oil in the morning and dermovate in the evenings only now.
My appointment for the NHS arrives, for my vulvoscopy and to see the consultant. I’m expecting to see my consultant but alas it’s to see another doctor but someone who I’ve heard is excellent. As before however they need to change the appointment. When they reschedule it, I make sure there are the two appointments together, vulvoscopy and consultation.
I go along and wait for over 90 minutes for a 09.10 appointment. I see this lady who asked a few questions, re what meds am I on how long have I had symptoms, I try to bring up my vaginal atrophy and my menopause symptoms to see if she can suggest extra Vagifem or HRT as has been pointed out in the groups. Her reply is simply “ I’m only here for your Lichen Sclerosis, you can ask your GP about those things”!! I honestly couldn’t believe this.
She then asked if she could “take a look” and that she had a student with her so would I mind? At that point I was so pissed off if the entire Welsh Guards came in I just didn’t care. She had a quick look, did an internal where she said my vagina was extremely tight as well as the pudental nerve suffering from being over stretched . She followed that with a “you can get yourself dressed now and we can talk over by my desk”.
She told me that she wasn’t entirely sure if I had lichen Sclerosis, but that I was extremely tight and that my pudendal nerve was overstretched! She also said if I wanted she could organise some physio for my tightness, but it was up to me at this moment in time? Then she showed me how to sit and loosen my pelvic floor muscles which are way way too tight! “ By now I am so fuming I can barely speak, not only has she refused to answer my questions on my vaginal atrophy but she also hasn’t done the vulvoscopy which I was booked in for… plus she is guessing about my diagnosis!
I couldn’t get out of there quickly enough! I mumbled something about not taking up the physio yet, then she simply gave me a piece of lined paper with dates on which she asked me to record what I used each day for the next six months, before handing me a sheet to book again in 6 months time.
I was in and out in about 10 minutes.
After this awful appointment I telephoned the secretary to ask to be moved from her clinic to one of the others clinics. Her secretary actually had the Gaul to argue with me! When she said why, I replied that I was supposed to have had a vulvoscopy and it wasn’t done. The secretary answered “ do you even know what that is? She had a look at you didn’t she”? To which I replied” A vulvoscopy is where they place an avid over the Vulva and look through a special microscope! She went very quiet, and simply agreed to remove me from her list and hand me over to the others.
Why is everything such a battle for us. I’m now waiting for my new appointment to come through and with any luck it will be with my lovely Vulva specialist, but then again in my experience. Who knows. Meanwhile I’ve been back to my wonderful GP who has put me on HRT so for now I’m just hanging in there.
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