Hello 👋🏻
I’ve been lurking in the background for a little while, reading posts and gleaning valuable wisdom but decided it was time to come out from the shadows and ask for some advice.
I’ve just turned 47 and have suffered on and off since puberty with vulval itching with or without infection. I had irregular periods until I started having children (I have 4) and was diagnosed with PCOS in my early 20s. That little bit of history is to highlight the fact I probably had a hormonal imbalance for a long time.
After having the 2 younger children, I was diagnosed with lichen sclerosis and put on the regimen for that (steroids and emollients). I also experienced pain during sex for the 1st time which for me was internal burning. Looking back now I think it may have all been down to low hormone levels as I breastfed the younger 2 and was breastfeeding for around 5 years.
Once I stopped breastfeeding, things improved and I no longer felt the need to use the steroid ointments and everything was more or less manageable until about 2 years ago when I noticed that my vulval architecture was shrinking and part of my labia were disappearing. There was no pain or broken skin, just chronic low grade itching. I was referred back to the vulval clinic, put back on the steroid regimen, given new emollients and referred for patch testing. They also took swabs and discovered I had thrush so was given treatment for that which resolved the itching for a month or so.
Since then I’ve been told to do something different almost every follow up appointment. “Use clobestasol when it’s itchy” to “don’t use clobestasol, use trimovate when it’s itchy”. Then “use clobestasol every day for a month, every other day for a month then twice weekly long term” and after a month and a half, “don’t use any steroids in case you need a biopsy at your next appointment.”
The diagnosis of lichen sclerosis was from observation. I’ve never had a biopsy. Every person who has examined me in the last 2 years has said there is evidence of past active LS but no active disease now but the chronic itch persists. The patch testing revealed 5 contact allergens. Nickel, which had been suspected since I was in my late teens/early 20s, 2 fragrance ingredients (also a suspected fragrance allergen from a long time ago), a preservative (which happens to be in the trimovate I don’t react to) and some resin.
At my last appointment last month, the consultant changed the steroid cream from clobetasol to elocon. I had asked last year about oestrogen as my auntie, who is postmenopausal and has Lupus, was also diagnosed with lichen sclerosis and told me that the vaginal ring (estring) resolved her issues but the GP/consultant had said I was too young to be given it. When I asked whether my issues could be hormonal at this last vulval clinic appointment, the consultant suggested I try estriol 1mg/g cream… “every night for 4 weeks then twice a week for 3 months, longer if needed.”
I am now 3 weeks into this new treatment plan. The itch is still there most of the time though yesterday it was mostly absent. I’m not sure how much the oestrogen cream is helping with that but… it’s definitely helping with other GSM that I’d just thought I would have to put up with… urinary leaking and frequency. It’s still up and down but things have definitely improved. Also I think I might’ve had low grade bacterial vaginosis before starting it because it was smelling unpleasant down there, especially overnight, and now it smells fine again.
The vulval clinic has signed me off, which I think in hindsight is a bit premature. I’m now to be reviewed by my GP and ask for another referral if it continues to be an issue.
Any advice or direction you could offer would be much appreciated. I’ll be dropping down to twice weekly with the estriol cream next week and I’m worried that this won’t be enough. I also would like to apply the cream to the outside but am worried I’ll use it up too quickly and not be allowed anymore.
