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@francesmharris123 - if it isn't too late to enter into this discussion, it sounds to me like Lichen sclerosus, which I have had for 40-some years.
If I may suggest you search for the Lichen sclerosus (LS) discussion topic, you will see some of my posts, along with others, and that the Clobetasol propionate 0.05% is the current treatment (NOT a cure - there still is none) for LS.
I won't go into my need for laser ablation this past Feb. to address it when it became pre-cancerous, but you can read more about it and others' experiences there. It IS an autoimmune condition with possible inherited aspects, but my gyne oncologist has patiently listened to my Qs and concerns with the procedure/s, and I now continue follow-ups, with biopsies if needed to check out areas of concern.
Do check out additional information on the nih.gov sites, and be informed.
Wishing you well, and even that it has been controlled by the time you read this.
People react differently to medication. I know what you mean about side effects and how they make you feel. Sometimes it’s scary. Everyone has to decide for themselves what is acceptable or not. In my case I really didn’t’t care about any side effects. I just wanted relief from the pain. It was worse than any side effects.
As it is now I am suffering from a bout of discomfort. I get them a couple of times a year. They last a week or two, this in spite of any of the medication. It seems that an abrupt change of temperature was the culprit. That is why I can’t go swimming. Well, there are worse things in life than not being able to swim with the family. That said, I have found that side effects wear off in my case, if I persist with the medication. Good luck to you, I hope you find a solution to your problem.