First of all WOW!! I didnt know that this support network existed and even shocked to know there is a recognised charity too. Why have i never been told this??!!
I am Emma 28. I was diagonsed with HS 15 years ago and been back and forth to docs, nurses for dressings and hospitals when i have massive flare ups which swell up and irrate my whole upper arm.
My HS is mainly under arms have had groin ones in the past, but nearly constantly have problems under both arms.
It would be nice to talk to people who have HS and understand what i am going through. Ive NEVER met or spoken with anyone with it and would be lovely to get feed back on what people think.
The answer to my questions come from docs who just look it up and say unfortunatly there is no cure and we dont know enough about how to help it. I just get given really strong antibiotics which end up making me feel worse.
Ive been offered several times an operation which theyve said would be a 50/50 chance of working. From what i understand its removal of the sweat glands and it would require a skin graft from my bum or thighs and be left with a long wound to heal. Putting myself through all that for a 50/50 chance is not good enough!!
Is there anything at all that people have found that makes it worse or what would be nice if anyone has found anything that makes it better??
Why and how do we have this condition?
Im currently 5 months pregnant and having a really bad time of it and if anyone has any ideas which dont involve medicines that would be great!!
Sorry for the overload but so happy to find people who would understand all this!
Emma x
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Emz87
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Hi Emma. I was so excited to see this fantastic site too. My HSV started when I was 14. I'm now 49.
Mine started primarily in groin and underarms. At 19 i had a severe one on my face that had to be lanced in the ER. Thankfully it did not return. At 23 I had surgery to repair the fistulas in both groin and under arm areas that had occurred as a result of this. Those surgeries made a significant improvement for me but I did not need to have any skin grafts. During pregnancy they flared up in my groin/thigh area.
After pregnancy mine became worse due to hormonal influences and weight gain. I had injections of steroid and antibiotic that I self administered and also received in office. I had numerous chronic flare ups on my stomachs and breasts. They always worsened just with the onset of my menstrual periods. This lasted a. Long time. Then I was on an oral medication called Aldactone to reduce some of the hormonal effect. I stopped that and lost a significant amount of weight. For me the weight loss helped more than anything else.
Getting older...this also helps as my hormones are less of a concern for my skin so far,I am praying menopause will be kind to me.
I wanted you to know that it has gotten better for me. I hope for you that it will improve over time. Make your Heath a priority.😊
Thank you for your reply... ive been waiting for a reply back from someone but with only 40 followers its a tiny group of people!
Ive always been convinced that hormones make it worse. When i saw a specialist at 15 i mentioned then that in sure it gets worse when my periods are due and on. I got a patronising tap on the arm and got told "dear, thats mearly a coincidince, that is not how this condition works"
I hated her at the time and told my mum i didnt want to go back to her again. Its only when i got into adult life myself i realised i should have believed myself as i still believe hormones play a role. Im onto my 2nd pregnancy currently and immediatly after my 1st i had massive flare ups which after they burst left a gapping hole under my arm. I spent the first 8 weeks if my new daughters life unable to hold her properly and had to go to the doctors every 3 days to get my underarms packed and dressings dones.
Wow. I hope you have a new Dermatologist. Hormones are a big part of this I think. I wonder if a combination of the surgery and something like Aldactone in the future may help you???? After you're pregnancy and once your not breastfeeding of course. Not sure if you want that but my heart goes out to you. Yours definitely sounds like it can be severe. Mine has been severe at times as well with dressings and abscesses but the areas where i had the surgery have never been quite as bad since. Scars? yes but feels so much better not to have massive festering boils. I also feel that it is exhausting to have chronic inflammation and pain.
it is sooo good to hear from others with this condition. I always felt so alone in it.
you may need closer follow up during and after your pregnancy to try to keep things under control.
Hang in there. Start with finding a doc that understands what this is.
😊
Just officially diagnosed today with h.s by dermatologist after all these yrs it was so easy and they were all very nice,was told my sore legs probably have nothing to do with h.s though,does anyone else get bother?
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