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Help, this HS?

(36 Posts)
inarmsofanangel Wed 14-Sep-16 11:15:13

Sorry in advance for TMI but those of you who have the same I'm sure will understand.
I've had one boil for over a year maybe more, which keeps coming back every few weeks/months. This is in my groin area (bikini line) It itches, get painful and red, usually drains and goes down. However the red scar is always there.
Last month I got a small boil on my bottom the other side which came and went and now....I have one inside my bottom sad (I think, painful lump but can't see it!)
I'm not sexually active at all (haven't been 1-2 years as separated)
I've never been to Dr about it but I read up on HS recently.
The first didn't really bother me but now getting a bit worried I am getting more in a short space of time.

Also I had a small mildly painful lump behind ear last month - I'm not sure if they are pimples/boils or whatever but they keep cropping up.

Does this sound like HS and what should (if anything) I do?

inarmsofanangel Wed 14-Sep-16 16:24:26

any one? ;;;;

CurlsLDN Wed 14-Sep-16 16:26:59

What is hs?

Sounds like normal ingrown hairs/bad spots to me. Irritated by the hot weather and tight clothes

donajimena Wed 14-Sep-16 16:28:47

My friend has been diagnosed with this and it meant a trip to the GUM clinic.
Its probably a good idea as although you are not sexually active they are the most knowledgeable about these things.
She is ok and its under control but FFS do not Google until you have it confirmed.

P1nkP0ppy Wed 14-Sep-16 16:33:47

I think they are caused by staph aureus, no idea what 'hs' is!
Try using Savlon cream/lotion/in the bath or hibiscrub- that usually clears them up.
It would be worth getting tested for diabetes too so go and see your GP.

timeforabrewnow Wed 14-Sep-16 16:37:04

Herpes simplex?

Go to the GP to get it checked out properly.

CadburysTastesVileNow Wed 14-Sep-16 16:37:30


CadburysTastesVileNow Wed 14-Sep-16 16:43:45

Sorry, Hibiscrub should help if you are just getting little boils.

Suppurativa hidradenitisis is much more serious though and can progress through various stages. It is important that that progression is stopped. Your lesions are occurring in traditional HS sites, though of course they are also the sort of sweaty areas that would be more vulnerable to infection anyway

I would see your GP just in case.

inarmsofanangel Wed 14-Sep-16 16:48:04

Suppurativa hidradenitisis - this is what I mean

gillybeanz Wed 14-Sep-16 16:53:32

As Cadbury's says

my ds has HS and is stage two. He has had it for 30 years now and several scars/ open wounds.
you need to get it diagnosed but don't be fobbed off with ab's they don't work. If treated and with diet it can get better, my dh has improved since following a Paleo/ AIP diets, eliminating nightshades, dairy and gluten.
Shower regularly or soak in the bath and stop deodorant and perfumed soaps for a while.
There is a support group he belongs to, will ask him for the address and post back.

It may not be HS you may just be tired, worn out or have something missing like a basic nutrient. The inside bottom one is making me think it could be HS as dh has had several of these over the years.
Please don't pop them yourself and seek medical attention.

inarmsofanangel Wed 14-Sep-16 16:56:20

gilly I have scarring where the boils have been also and it reoccurs, like mentioned every few weeks in the same cycle (often before my period?). Yep, please a support group to ask a few questions would help.

gillybeanz Wed 14-Sep-16 16:56:30

This may help, but I'll ask dh for the group details.

inarmsofanangel Wed 14-Sep-16 17:02:36

Thanks gilly. Would most GPs know what it was?

gillybeanz Wed 14-Sep-16 17:03:04

Aw it's apparentely a closed fb group that you just ask to join.
My dh says it's amazing and everybody is so nice and supportive.

It's called The HS connection.
he says if you have any trouble get back to me and he'll send his email address if he can help in any way.
When he first started nobody knew about it, he googled his symptoms and got info from America. He had to take print outs to the gp as he didn't know about it.
Some gps are still in the dark, not their fault though as I always point out they are general practitioners and can't be expected to know about all illnesses and diseases.
Good luck my love, I know it is awful, just living it with dh.

Imnotaslimjim Wed 14-Sep-16 17:04:00

It does sound like it could be HS. I've suffered for 12 years, thankfully never gone beyond stage 2 and never had a lesion on my face.

Do go to the Dr and ask for a derm referral. You might get lucky and find one that knows about HS and be able to help you. I don't have any input from derm now as mine isn't progressing but Dr has said I'll get a quick referral if I ever need it.

I've found reducing my gluten intake really helps it. I do this anyway as I also get gastro symptoms when I eat it. TBH though it's just a process of elimination to find what works for you.

If you haven't google imaged it yet, don't! Some of the results are horrifying.

inarmsofanangel Wed 14-Sep-16 17:07:52

Aw thanks gilly (and to your dh) I'm hoping it's not but I have never had boils before and pretty sure nothing sexually transmitted. I read somewhere it's not the usual staph infection when they swab these types of boils.
Can I pm you when I've been to gp about it?

inarmsofanangel Wed 14-Sep-16 17:09:56

Thank you Imno, I'm beginning to feel more normal now grin
I did read (not images) how debilitating it can become.

inarmsofanangel Wed 14-Sep-16 17:20:29

I'd also be interested to know if Epidermoid cysts are related?
I have a huge 3 x 3 inches (sticks out like a breast sad )for some years on my back.
As it had become so big I had it biopsied but it came back as a cyst. NHS won't remove it (cosmetic) but I wondered if the sweat/sebaceous glands were similar or if they were related?

gillybeanz Wed 14-Sep-16 17:40:37

My dh googled images as 30 years ago we didn't have internet, so after managing it for so long on very little info, when it was available he started to research.
Yes, the images can be quite bad and not representative of the population of HS as a whole.
He read about it being smelly and how his wife would leave him etc. All horrible stuff.
He doesn't smell at all and sometimes he's been really infected with several flares at once. Of course, I'm still here too. grin
I'm not sure about the cyst, but dh has said he has tunnels under his skin.
Whether this means the infection spreads through these or not I don't know.

There are sometimes when it has been bad and he been operated on a few times now, once on boxing day as he had one the size of a grapefruit.
Everybody is different though and much more is known about it now. Some sources even reckon there are far more sufferers that are scared to go to gp, or self manage.

Do please do what a pp said though, get a diagnosis and referral.
You may find that heat makes it worse which for some reason people recommend. In HS cases it can spread the infection though, and far better to draw with magnesium sulphate and gauze or even kaolin microwaved to go soft and applied to gauze.

gillybeanz Wed 14-Sep-16 17:44:30

Of course you can pm me, anytime.
Obviously if it's anything personal I only have dh to ask, but he has no idea who you are so hopefully won't be too embarrassing for you.

Get the next appointment available with your gp.
Even 5 min appointment can get a referral. thanks

inarmsofanangel Wed 14-Sep-16 17:46:25

Oh gosh, sounds awful! Has it been progressive for your dh? I wonder if it started as one boil and went on from there?
I shall go armed with information for GP!

gillybeanz Wed 14-Sep-16 18:09:37

I remember the boil, OP it was before we got married, they called it something else though, a goitre? I believe.
It has been horrific at times, but don't forget very little was known back then and no internet.
If he knew then what he does now he reckons his treatment would have been better and also he wouldn't have had so many flare ups.
I certainly agree with a diet elimination, he has lost about 4 stone on this diet but was only 2 stone over his range iyswim. He used to be skinny though so nothing to do with weight really, except I have the added bonus of a slim man now and of course his health has really improved.
They still come back, for what seems like no reason sometimes, but far easier to manage and they drain pretty much straight away.

inarmsofanangel Wed 14-Sep-16 18:20:15

Fair play to you too gilly, supporting him. It must be quite an embarrassing condition to live with. Guess everyone assumes it a sexually transmitted thing when I don't think it is at all?
I did get overweight with the children but am back down to normal now and trying very hard not to out any on.

IamtheZombie Wed 14-Sep-16 18:37:01

Zombie has had HS for about 40 years. The worst flare ups used to seem to be associated to a degree with her menstrual cycle and stopped completely once she went through menopause. Then it started again mildly a couple of years ago. She reckons that her nearly 5 years of cancer treatment have just knackered her body so much that it can no longer hold it at bay.

About 25 years ago one GP prescribed a year long course of Minocin which did clear it up for a couple of years. More recently she was advised to wash the area with Hibiscrub to keep the skin clean.

Both of her GPs knew immediately what it was but virtually none of her cancer team had ever heard of it.

The scarring along the bikini line is really unsightly and she now wears men's swimming shorts and a bikini top if she wants to go swimming.

inarmsofanangel Wed 14-Sep-16 18:48:37

Interesting Iamthezombie. I can well imagine the cancer treatment had something to do with it. Is it an autoimmune thing does she think?
I wonder if some the the younger GPs are better at diagnosing if it's a relatively new found condition?
I hope Zomie is recovering from her cancer treatment - sorry to hear that.

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