I have just been diagnosed with this illness, it's very rare and very debilitating in some cases.. I am 21 years old and 5 months ago I randomly had an allergic reaction to my period coming-the exact minute it came. My lips swelled, i had ulcers in the mouth, I developed hives across my face, my elbows were covered in red dermatitis, strange rash all over, and excruciating nerve pain of my girly area.. the pain is so bad I have to keep an ice pack over my underwear or sit in an ice bath to numb it for the entire week. This lasts the week and then comes back the minute I get my period next. I have been on multiple medications to target nerve pain, allergic reactions, immune hypersensitivity disorders, the lot. Nothing has helped in the slightest. If anything the side effects of them have made things harder. I've seen an allergist, dermatologist, immunologist and endocrinologist. My endocrinologist is about to induce early menopause to stop my period all together which I am really worried about as I'm 21 years old.. I'm hoping somebody on here can relate or at least give some advice even if they know someone managing similar symptoms. Any help is helpful at this point as I have also just lost my job due to the time I've had off for the sickness..
Autoimmune Progesterone Dermatitis : I have just... - LUPUS UK
Autoimmune Progesterone Dermatitis
Hi and welcome. I was shocked to read about all that you're going through. I have no knowledge or experience of this condition but hopefully someone else will be along soon who can be more helpful. I assume the doctors have already tried steroids? Have they attempted to suppress ovulation - temporarily with medication rather than via an artificial menopause? I'm sure the past 5 months have been hellish for you but it seems a relatively short time for your endocrinologist to be proposing something so irreversible and permanent to someone so young.
Have you researched the top specialists in this field and pushed for referral to them? If you can bear it, I think you should be exhausting all possibilities.
Have you tried acupuncture for when the pain is really ghastly? I wish I could be more use but I seriously think you should be demanding second opinions. What does your GP think?
Big hug to you. Clare xx