FabSwingers.com forum: Hidradenitis suppurativa

By (user no longer on site) OP
over a year ago

...is a condition I suffer from which is linked to my pcos.

I've never seen anyone speak publicly about it until yesterday, someone I follow on IG posted some pics and explained how it effects them.

Seems it's much more common than I thought!

Anyone else have this?

And if so, does it affect your confidence?

How do you deal with it?

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By (user no longer on site) OP
over a year ago

Guess it's not that common after all

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By (user no longer on site)
over a year ago

I don't have that but I do have APT which I've started to treat, it sounds so complicated I had to rewatch the instructional videos a couple of times

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By *iamondsmiles.Woman
over a year ago

little house on the praire

I experienced it pre having a child but never had it since. Apparently having a child clears up lots of pcos symptoms. Wish it would clear up all of them

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By (user no longer on site) OP
over a year ago

"I experienced it pre having a child but never had it since. Apparently having a child clears up lots of pcos symptoms. Wish it would clear up all of them"

I've heard that! What if you don't want/can't have kids? Bit unfair innit...

A cure would be good!

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By *naswingdressWoman
over a year ago

Manchester (she/her)

I don't have it, but

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By (user no longer on site) OP
over a year ago

"I don't have it, but

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By (user no longer on site) OP
over a year ago

"I don't have that but I do have APT which I've started to treat, it sounds so complicated I had to rewatch the instructional videos a couple of times

What's APT?

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By *iamondsmiles.Woman
over a year ago

little house on the praire

"I experienced it pre having a child but never had it since. Apparently having a child clears up lots of pcos symptoms. Wish it would clear up all of them

I've heard that! What if you don't want/can't have kids? Bit unfair innit...

A cure would be good!

"
it is unfair but none of the treatment i had cleared it up but this is 30 years ago

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By *elma and ShaggyCouple
over a year ago

Bedworth

My sister he had it since her teenage years. Sometimes she gets very bad flare ups which affect her in all aspects of her life.

The flare up she’s having now has been ongoing for 6+ weeks. She has multiple excruciatingly painful abscesses in her groin area. This is the worst flare up that she’s suffered during the last 30 years

I pity anyone who is having to go through what she’s going through at the moment

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By *elma and ShaggyCouple
over a year ago

Bedworth

Op I would have said contact my sister on here and chat with her about it , but due to the severity of her current flare up she has taken time out from using Fab and hasn’t even been coming in the forums

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By (user no longer on site)
over a year ago

I have PCOS and HS too.

It's very difficult

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By *ily WhiteWoman
over a year ago

I've had it since my late teens, but haven't had a bad flare-up for years. The best thing i've found is to cut out sugar...I only have a minor flare-up now if I eat too much sugar

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By *iamondsmiles.Woman
over a year ago

little house on the praire

"My sister he had it since her teenage years. Sometimes she gets very bad flare ups which affect her in all aspects of her life.

I pity anyone who is having to go through what she’s going through at the moment"
i was thinking of your sister when this thread was posted as shes mentioned it before. Hope her flare up goes down quickly

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By (user no longer on site)
over a year ago

"I don't have that but I do have APT which I've started to treat, it sounds so complicated I had to rewatch the instructional videos a couple of times

What's APT?

Anterior pelvic tilt, bad posture causing lower back pain.

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By *_Yeah19Couple
over a year ago

Lincoln

Yes I have/did, never more than stage 1 thankfully but haven’t had a flare in 5 years since I changed what I ate

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By (user no longer on site)
over a year ago

I've had this since my 20's. I'll go years without any occurences and then it starts again but in a different area. I've had the hair follicles removed from both armpits and yes, to some extent it does affect my self image but.......I still get dates etc

Smoking makes it worse, something I didn't realise for years, so no longer smoke.

Stress also brings mine out

I wasn't aware that diet played a part as I've recently been almost veggie (although not a vegitarian); but was told years ago to avoid supermarket beef etc as the husbandry is not good for the condition; pumped full of antibiotics!

I've had children and still get it, so that didn't work for me.

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By *yx_InannaWoman
over a year ago

Burslem

I may have it but I have several conditions one of which is called folliculomas and fordyce spots.

To go with the excema and psoriasis.

My dermatologist was meant to be removing some of the scarred tissue but that appointment hasn't happened yet due to mixups

I have the hair growth common with pcos also.

None of the treatments I was given for the folliculoma and fordyce spots ever worked.

This all started at puberty.

My pcos never eased I've had 2 children. After first period were a nightmare went on hormonal injections to stop them. That worked except for the cysts still had them.

2nd child I'd bleed 2 weeks on 1 week off. It was like someone had stabbed me at heaviest point 30 mins an ultra night pad was filled. I was on constant bed rest for most of the period each and every time. This all while on hormones. So 2nd time around was worse than 1st.

I spent year and a half off hormones lost 5 stone periods normalised near enough average 7 to 10 days on per month but I did have a decent break between them.

Back on hormones 21 days average bleed but 12 weeks between periods. Now reduced hormones to 10 weekly no sign of period since last one which was 11 days. That was months ago.

Physically feel the cycle of ovulation changes and period changes but no period and the cyst pains have lessened. Also less facial hair still have some but it has reduced can't tell about the other hair yet.

So if anyone thinks of trying to see difference in their pcos symptoms, sayana press

Medroxyprogesterone acetate. If you're trying for a baby though don't it is a contraceptive.

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By *elma and ShaggyCouple
over a year ago

Bedworth

"My sister he had it since her teenage years. Sometimes she gets very bad flare ups which affect her in all aspects of her life.

I pity anyone who is having to go through what she’s going through at the momenti was thinking of your sister when this thread was posted as shes mentioned it before. Hope her flare up goes down quickly"

She’s really suffering at the moment

the doctor has given her various different antibiotics to help deal with any secondary infections but it does nothing for the HS itself.

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By *aisyDDWoman
over a year ago

North West

I’ve got it. Just my armpits. Put on a few stone and stopped going ok. Hot flushes last year has made me decide this year there’s many people worse off and I’m back to wearing vests and not caring as much

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By *aisyDDWoman
over a year ago

North West

"Yes I have/did, never more than stage 1 thankfully but haven’t had a flare in 5 years since I changed what I ate

TB"

Interested what you changed. I now eat a lot of chocolate and have cans of pop. Can’t remember if I started to comfort eat because of my armpits or if my armpits started after the comfort eating

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By *adyJayneWoman
over a year ago

Burnleyish (She/They)

PCOS and HS here to!

Always get a flare-up when I'm planning a meet to... Typical

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By (user no longer on site)
over a year ago

"My sister he had it since her teenage years. Sometimes she gets very bad flare ups which affect her in all aspects of her life.

She’s really suffering at the moment

the doctor has given her various different antibiotics to help deal with any secondary infections but it does nothing for the HS itself."

Oh the poor love, I Tottaly sympathise.

Iv been suffering with this for years and the last year iv had more time in pain and infected than not, it's been horrific!

Iv had ones so bad they have needed surgical treatment. Please tell your sister she is not alone and this won't last forever even though it feels like it right now.

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By (user no longer on site) OP
over a year ago

Thanks for your replies!

Thankfully it's not something I have too much of an issue with anymore, it's more just the scarring. For me, cystic acne on my face comes hand in hand with it and the scarring is the bane of my life! I hate it and how it makes me feel

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By (user no longer on site) OP
over a year ago

"My sister he had it since her teenage years. Sometimes she gets very bad flare ups which affect her in all aspects of her life.

I pity anyone who is having to go through what she’s going through at the moment"

Oh bless her! I hope it eases for her soon!

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By *rwhowhatwherewhyMan
over a year ago

Aylesbury

My partner has it, shes been laid up in bed for a week because of it. I genuinely sympathise with you OP.

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By *_Yeah19Couple
over a year ago

Lincoln

Low carb/Keto sorted mine out, the lower carb I got the more it went away.

I’ve heard people say they tried it and it didn’t work but honestly I don’t think they went drastic enough.

It’s a pretty hefty condition that needs some pretty hefty changes and it seems some people would rather just eat how they’re used to regardless of how much better it might be if they changed

Unless you’ve gone full Keto including making some tweaks with certain vegetables and/or dairy for a good few months, personally I don’t think you can say you’ve tried it and it doesn’t work.

For me, being not ill is so much better than eating cake so I’m glad I stuck with it

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By *oddyWoman
over a year ago

between havant and chichester

My daughter has it really bad she's waiting to see the plastics team for sweat gland removal else she's being operated on every 3 weeks when they come up she suffers a lot of pain till there removed

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By *oddyWoman
over a year ago

between havant and chichester

They also tryed to blame her size but her best mate who is a size 10 also suffers with it

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By (user no longer on site)
over a year ago

Dont mean to be ignorant, but what is the condition? X

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By (user no longer on site)
over a year ago

"Dont mean to be ignorant, but what is the condition? X"

Ignore me polycystic ovaries, im on a go slow day. I was diagnosed in 2000,had my second baby in 2001, then sterilized. Its horrible, my hormones rule me x

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By *_Yeah19Couple
over a year ago

Lincoln

"Dont mean to be ignorant, but what is the condition? X"

A skin condition (likely autoimmune) which gives you big lumps/boils, mostly in areas like armpit and groin. I had some up to the size of a golf ball so it’s not pleasant. Then they moved to my eyelash follicles which was interesting too!

As mentioned though, I managed to beat it so the worst I have now is a few small scars

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By *nabelle21Woman
over a year ago

B38

"Dont mean to be ignorant, but what is the condition? X

As mentioned though, I managed to beat it so the worst I have now is a few small scars

TB"

It sounds really awful..I'm glad you've beaten it and long may that continue...for all who suffer from it I hope that you get relief if not cure x

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By (user no longer on site) OP
over a year ago

"Low carb/Keto sorted mine out, the lower carb I got the more it went away.

I’ve heard people say they tried it and it didn’t work but honestly I don’t think they went drastic enough.

It’s a pretty hefty condition that needs some pretty hefty changes and it seems some people would rather just eat how they’re used to regardless of how much better it might be if they changed

Unless you’ve gone full Keto including making some tweaks with certain vegetables and/or dairy for a good few months, personally I don’t think you can say you’ve tried it and it doesn’t work.

For me, being not ill is so much better than eating cake so I’m glad I stuck with it

TB"

I've been slowly transitioning to a keto diet and does seem to be helping

The scars I'll either have to learn to love or put up with it think.

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By *adyJayneWoman
over a year ago

Burnleyish (She/They)

Metformin helps with mine, and with my PCOS symptoms too... Does make me a little nauseous.

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By (user no longer on site)
over a year ago

"Metformin helps with mine, and with my PCOS symptoms too... Does make me a little nauseous."

That's helped with mine too, the slow release ones have helped the most. Iv still had flare ups but not as bad. Last summer was horrific I was in agony most of the time and need several of them treated surgically and was on antibiotics several times as they were that bad. I had one on my groin the size of a small plumb. I have scars but iv learned to live with them.

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By (user no longer on site)
over a year ago

This is a LOT more commom than I realised and I will definitely be looking into the Keto diet.

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By *_Yeah19Couple
over a year ago

Lincoln

"This is a LOT more commom than I realised and I will definitely be looking into the Keto diet.

I’d definitely recommend it

Not always easy, but always worth it.

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By (user no longer on site)
over a year ago

"This is a LOT more commom than I realised and I will definitely be looking into the Keto diet.

Yes this thread has been very helpful, iv always been very embarrassed by it and really thought I was alone in this. I guess it's just something we don't talk about.

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By (user no longer on site) OP
over a year ago

"This is a LOT more commom than I realised and I will definitely be looking into the Keto diet.

Yes this thread has been very helpful, iv always been very embarrassed by it and really thought I was alone in this. I guess it's just something we don't talk about. "

Me too! Glad I posted now

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By (user no longer on site)
over a year ago

"This is a LOT more commom than I realised and I will definitely be looking into the Keto diet.

Yes this thread has been very helpful, iv always been very embarrassed by it and really thought I was alone in this. I guess it's just something we don't talk about.

Me too! Glad I posted now

I'm very glad you did too, thank you. X

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By (user no longer on site) OP
over a year ago

"This is a LOT more commom than I realised and I will definitely be looking into the Keto diet.

Yes this thread has been very helpful, iv always been very embarrassed by it and really thought I was alone in this. I guess it's just something we don't talk about.

Me too! Glad I posted now

I'm very glad you did too, thank you. X"

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By (user no longer on site)
over a year ago

I thought I'd have a search on the forums to see if anyone else had this and still can have a life in the swinging world.

I have pcos and recently diagnosed with HS, I've stopped smoking (trying to get off vaping too) but I read further up about changing diets/cutting out certain foods?

I get very embarrassed about it as always in my groin area and really makes me feel down when it's flaring up badly but it's comforting to know there are others out there.

This is "Danish" btw x

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By (user no longer on site)
over a year ago

"I thought I'd have a search on the forums to see if anyone else had this and still can have a life in the swinging world.

I have pcos and recently diagnosed with HS, I've stopped smoking (trying to get off vaping too) but I read further up about changing diets/cutting out certain foods?

I get very embarrassed about it as always in my groin area and really makes me feel down when it's flaring up badly but it's comforting to know there are others out there.

This is "Danish" btw x"

This was one of the reasons I gave up smoking. It actually made the condition worse for me when I smoked!

I still get flare ups, even though I quit smoking over 10 years ago, but they are not as bad.

Stress is another factor with me but not sure if that affects others.

I wish you well as I know what you're going through

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By (user no longer on site)
over a year ago

"I thought I'd have a search on the forums to see if anyone else had this and still can have a life in the swinging world.

I have pcos and recently diagnosed with HS, I've stopped smoking (trying to get off vaping too) but I read further up about changing diets/cutting out certain foods?

I get very embarrassed about it as always in my groin area and really makes me feel down when it's flaring up badly but it's comforting to know there are others out there.

This is "Danish" btw x

This was one of the reasons I gave up smoking. It actually made the condition worse for me when I smoked!

I still get flare ups, even though I quit smoking over 10 years ago, but they are not as bad.

Stress is another factor with me but not sure if that affects others.

I wish you well as I know what you're going through"

I've joined some online support groups, my HS is nowhere near as bad as others but I've got some great advice to try and control it x

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