New to LS and need some help
Posted , 9 users are following.
Hello,
I'm a 24 year old female and I recently have had burning, swelling and irritation of my vulva and anogenital area for over a month now. I believe there was some paleness of the general region but I didn't notice it myself until it was pointed out to me by the second GP. At first my GP doctor thought it was a yeast infection (so did I) so I took fluconazole and as it didn't clear clear up the doctor prescribed a treatment of that every three days for three treatments. Before I had these treatments, I had some swab tests for STIs and a yeast infection which came back negative. After the treatments I was still experiencing all the same symptoms so I saw another GP. This GP immediately told me it was LS based on my symptoms and appearance of my vulva. I had also had another episode of this pain late last year (2019) and tried a thrush treatment which was unsuccessful. During that time last year I wore a skirt most of the time and had some stinging when I went to the bathroom from some splits around the entrance to my vagina. After about two or three weeks, this healed up and was all fine on its own.
At the present moment my GP has given me the topical cream betamethasone dipropionate which I have used for almost two weeks on a daily basis. I've had no reduction of symptoms at all. The colouring of my vulva is slightly better (I think). I don't have so much burning in the anus region but I have A LOT around my clitoral region and general tingling/discomfort. I don't have abnormal discharge as far as I can tell (there's no foul smell or strange colour). There is also no scarring in my genital or anal region. I also have polycystic ovarian syndrome.
I've booked an appointment for this Tuesday to see her again as I'm at my wits' end.
Is it normal to not have any reduction in symptoms like that after two weeks of steroid treatment? I think I might have to see a gynaecologist.
0 likes, 18 replies
susan18011 Sarah9048
Edited
Hello Sarah, When I started clobetasol cream it took a few weeks for the itch and burn to go away. As far as appearance, my labia and surroundings are still white. I used the cream for a couple months or so, and seen my gyno once a month for three months. in that time frame the white never went away. He said only use it when needed after that, any more I would start having skin thinning issues. Stay positive, stress makes it worse.
Sarah9048 susan18011
Posted
Hi Susan,
Thanks for your response. That's a helpful time frame and gives me some comfort. I have no itching but only burning for some reason. Sorry to hear about the whiteness but that's great that you have none of the pain and itching now.
beverly52803 Sarah9048
Edited
Some of us have never experienced the itching. I have a poking feeling at times and have had periods of the buzzing. We all experience our own versions of LS, it seems.
I would definitely try to see only gyns who have had experience with LS, not GPs.
christine97462 Sarah9048
Edited
Hi Sarah,
I am 60 years old, and was diagnosed 2 years ago. It took about 1 year to get under control. I see a dermatologist and a gynecologist. Mostly the dermatologist (every 3 months). Both were very clear NOT to use the clobetesol cream only the ointment (based on research). It took a while, but it did help and I was able to change to the ointment that begins with a T (can't remember the name right now. That burned at first, but I stayed with it and the burning went away. It's my understanding that this medication does not thin the skin, is safe to use and I am on a maintenance indefinitely. Sorry you are suffering; it is a painful disease but there is hope.
Sarah9048 christine97462
Posted
Hi Christine,
Thank you for your kind message. I'll be sure to ask for a referral and for a change over to the ointment. I have also read that the ointments are better at causing less irritation from various studies and literature on LS. I hope the maintenance goes smoothly for you now you're over the pain hurdle.
vickie00010 christine97462
Posted
could u please tell me the difference between the cream and the ointment? I have been using the cream for years...thanks...Vickie G.
pamela70431 vickie00010
Edited
the difference in the cream and the ointment is there are a lot less additives in the ointment compared to the cream. 15 yr veteran of LS. this condition i wouldn't even wish on my worst enemy !
good luck x
vickie00010 pamela70431
Posted
Pamela - I am "assuming" the cream is white and the ointment looks like vaseline (clear)???
pamela70431 vickie00010
Edited
yes. may i also suggest either sanitary towels or panty liners as the goop goes everywhere !
no matter what you do! the ointment goes on much thicker and more awkwardly than vaseline.
you need to be more careful when applying the ointment if your skin is more friable or rips easily.
take care x
vickie00010 pamela70431
Edited
thanks for reply...I have been using the ointment (it's clear and think) 2 times a week and Estrace (for hormone cream) 2 times a week with the plunger and every other day topically....what can I say - it is a mess and all my panties r a royal mess BUT they r keeping the LS under control...been trying to follow a better diet - seems all this goes together in 1 form or another...been eating one way for 68 years - not so easy to change...
beverly52803 christine97462
Posted
Triamcinolone? If so, that's the medium strength steroid. I was first prescribed that to use along with hormone cream 2 years ago. I graduated to Clobetasol after the buzzing started; it would not go away despite increased usage of the med strength. I have put myself back on the medium strength as the buzzing has stopped. I am just winging it.
Was hoping to see the gyn who was unavailable for a year, but now with COVID she is not seeing anyone for now. I am very interested in platelet rich plasma (PRP) injections but have yet to find a doctor with experience that I feel comfortable with. Am hoping someday!
Thunder_Thighs Sarah9048
Edited
hi Sarah, I have suffered with LS for years and 2 years ago had surgery and a BIOPSY to confirm! I still have regular checks and I have been prescribed terminate ointment (Not cream) which works! I also use coconut oil after I go for a pee, hope that helps and you get the treatment you need!
Thunder_Thighs
Posted
sorry, that should say Dermovate ointment
Sarah9048 Thunder_Thighs
Edited
Hello,
Thanks for your input. I will definitely be switching over to the ointment I think as you have all suggested. The coconut oil seems promising too, I've noticed a lot of people with LS use it. I will definitely seek out a referral to get the biopsy to confirm, although I know you have to be off steroids for a few weeks.
vickie00010 Sarah9048
Edited
from my personal experience IF u have burning while u urinate - if u take a cup of warm water and apply it to your "area" while u pee pee it will cut the acid from your urine (which can burn this area) it will help...the skin there is sometimes raw and the water does help me...good luck to u...
Sarah9048 vickie00010
Posted
Thanks, Vickie. I will keep that in mind if I have too much trouble going to the bathroom.
Good luck with your treatment too.