Hidradenitis Suppurativa

Trisha_H

Thank you so much for answering! To be honest, the number of times it flares up, I couldn't go without mentioning it. Even the doctor in the hospital told me it would be very hard for me to find a job. But I applied for the disability allowance and was turned down. So I was just wondering if anyone had much success with finding and keeping a job.

lockman

Trisha_H wrote: »

Thank you so much for answering! To be honest, the number of times it flares up, I couldn't go without mentioning it. Even the doctor in the hospital told me it would be very hard for me to find a job. But I applied for the disability allowance and was turned down. So I was just wondering if anyone had much success with finding and keeping a job.

Trisha,

I'd suggest reapplying/appealing that disability allowance decision: I know of someone with HS who was successful recently (past six months) in their application, and they cited HS as their disability.

In the job I lost, like Pumpkinseeds, I had to miss a lot of time with surgeries and specifically with the recovery afterwards and also loits of time off to get dressings done and so on

I currently work part-time with my family's business: if it wasn't for them being so understanding about my HS, I'd be rightly screwed.

Trisha_H

lockman wrote: »

Trisha,

I'd suggest reapplying/appealing that disability allowance decision: I know of someone with HS who was successful recently (past six months) in their application, and they cited HS as their disability.

In the job I lost, like Pumpkinseeds, I had to miss a lot of time with surgeries and specifically with the recovery afterwards and also loits of time off to get dressings done and so on

I currently work part-time with my family's business: if it wasn't for them being so understanding about my HS, I'd be rightly screwed.

I'll definitely be appealing. It sucks that I have to do that, but it's the only option.

It's good to know that someone got it for this reason so recently. It'll definitely help me keep my spirits up.

Pumpkinseeds

As Lockman says, reapply. I've had to appeal everything I've ever applied for benefits wise. I suspect it's standard practice to refuse people's applications. You've nothing to lose. Even my GP told me at one point all of his Medical Card patients cards weren't being renewed and people were having to appeal the decisions. If you could get your consultant to put something in writing it would probably help. Sorry you're having such a rough time.

stupidskin

Hi,

Looking for last minute advice . have a flare up in the groin'ish area and have a charity cycle that I really want to do this weekend coming. I do a lot of cycling so that is not an issue but I would love to do it pain free. Any advice on what to put on it to get it to go before the weekend, I'll try the regular hot baths and stuff but does anyone have any other tips/advice for a short term fix ?

I'll get this one removed in the summer, just have has too many removals in the one area and they keep coming back, even alon the old scar lines.

Cheers

Dave

lockman

stupidskin wrote: »

Hi,

Looking for last minute advice . have a flare up in the groin'ish area and have a charity cycle that I really want to do this weekend coming. I do a lot of cycling so that is not an issue but I would love to do it pain free. Any advice on what to put on it to get it to go before the weekend, I'll try the regular hot baths and stuff but does anyone have any other tips/advice for a short term fix ?

I'll get this one removed in the summer, just have has too many removals in the one area and they keep coming back, even alon the old scar lines.

Cheers

Dave

Hi Dave,

I've had some success in the past with a bread poultice in bringing one to a head and causing them to burst/pop.

Hibiscrub, available in most pharmacies, has helped also in taking the sting or edge off of a lesion.

Regards,

stupidskin

lockman wrote:

Hibiscrub, available in most pharmacies, has helped also in taking the sting or edge off of a lesion.

lockman wrote:

Hi Dave,

lockman wrote:

I've had some success in the past with a bread poultice in bringing one to a head and causing them to burst/pop.

Thanks. Just looked up how to make one and will give it a go. Is it just me or do you ever suffer from aching legs and abdominal muscles when you get one in the groin area?

lockman

stupidskin wrote: »

Thanks. Just looked up how to make one and will give it a go. Is it just me or do you ever suffer from aching legs and abdominal muscles when you get one in the groin area?

I haven't tried this myself as I haven't had the need to of late, but many HS patients report that applying Vicks Vaporub can help with flares.

Arthralgia (arthritis-like symptoms) is a common complaint in HS and I used to suffer from it in the legs, joints and hips when flaring in/around the groin. Cant say I've experienced the abdominal muscle complaint though.

Pumpkinseeds

This might sound a bit extreme, but bear with me. Have you considered covering it with a sanitary towel? Just tucking it into the side of your underwear between boxer shorts and abcess. Before you laugh at me, they're very slimline and absorbent and might provide a bit of cushioning, also has the added bonus of absorbing any junk if there's discharge. Just a suggestion, needs must and all that.:)

stupidskin

Pumpkinseeds wrote:

This might sound a bit extreme, but bear with me. Have you considered covering it with a sanitary towel? Just tucking it into the side of your underwear between boxer shorts and abcess. Before you laugh at me, they're very slimline and absorbent and might provide a bit of cushioning, also has the added bonus of absorbing any junk if there's discharge. Just a suggestion, needs must and all that.

Thanks pumpkinseeds, As you say, when needs must! I'll keep that idea in reserve if there is no change :-S. I suppose on a serious note, with hs we have ask developed that attitude over the years to do whatever is needed without worrying about self image etc.

Thanks again lockman, I remember the vicks idea from a few years ago now that you mention it. I'll give it a go later in the week if the poultice isn't working. Hope I don't end up crashing and in an ambulance this Saturday or I'll have some explaining, with my menthol smell and sanitary towel stuffed in my cycling shorts ;-)

Pumpkinseeds

stupidskin wrote: »

Thanks pumpkinseeds, As you say, when needs must! I'll keep that idea in reserve if there is no change :-S. I suppose on a serious note, with hs we have ask developed that attitude over the years to do whatever is needed without worrying about self image etc.

Thanks again lockman, I remember the vicks idea from a few years ago now that you mention it. I'll give it a go later in the week if the poultice isn't working. Hope I don't end up crashing and in an ambulance this Saturday or I'll have some explaining, with my menthol smell and sanitary towel stuffed in my cycling shorts ;-)

Good luck with it, hope all goes well.

lockman

Pumpkinseeds wrote: »

This might sound a bit extreme, but bear with me. Have you considered covering it with a sanitary towel? Just tucking it into the side of your underwear between boxer shorts and abcess. Before you laugh at me, they're very slimline and absorbent and might provide a bit of cushioning, also has the added bonus of absorbing any junk if there's discharge. Just a suggestion, needs must and all that.:)

I've used towels quite a lot and find them very good for the purposes you have described.

Pumpkinseeds

I had to reschedule my dermatology appointment for another month, I've got bronchitis and just can't face 4 buses to get there. Given that I received a text the other day telling me a referal had been made for me to the plastic surgeon, I'm assuming that they've done what they can for me, treatment wise anyway.

stupidskin

Pumpkinseeds wrote:

I had to reschedule my dermatology appointment for another month, I've got bronchitis and just can't face 4 buses to get there. Given that I received a text the other day telling me a referal had been made for me to the plastic surgeon, I'm assuming that they've done what they can for me, treatment wise anyway.

It does sound like it. For me tbh the best results I had were from surgery, long recuperation but job done.. For a while anyway!

lockman

stupidskin wrote: »

... For me tbh the best results I had were from surgery, long recuperation but job done.. For a while anyway!

Same for me: best results were obtained from surgery.

The main surgeon I am with has been great in that every time he has operated on me, I haven't had any problems in those areas since. My main problem is that the HS tends to pop up elsewhere in time.

Pumpkinseeds

I've had everything removed from the left armpit and a graft done on that, since then I never had any issues in that area and it was an absolute mess prior to being done. My plastic surgeon considered doing both arms at the same time, but for whatever reason, he decided against it. The right one is very minor, it's just a couple of areas that discharge for long periods, then stop for years then start again.

I've got some weight to lose before the next surgery and it's popped up on my rib cage a month or so ago, so new fun.:rolleyes:

Pumpkinseeds

Has anyone noticed any foods that aggravate their HS? I've noticed that if I have a bit of a binge at weekends on stuff like crisps or peanuts, that I tend to have a flare up.

stupidskin

Pumpkinseeds wrote:

Has anyone noticed any foods that aggravate their HS? I've noticed that if I have a bit of a binge at weekends on stuff like crisps or peanuts, that I tend to have a flare up.

I find wheat products and definitely beer. Not so much wine though, after extensive testing 😉. Also I was a smoker for 20 years and can say I had the same amount of trouble when smoking as not smoking as I know some Dr do think this is related.

Pumpkinseeds

stupidskin wrote: »

I find wheat products and definitely beer. Not so much wine though, after extensive testing 😉. Also I was a smoker for 20 years and can say I had the same amount of trouble when smoking as not smoking as I know some Dr do think this is related.

I smoked for years as well and for the last year before the surgery I was smoking a ridiculous amount because of the stress and pain. Looking back I don't know how I could afford to smoke as much as I did. I haven't smoked for 7 years or so and I honestly can't say that it's made a difference. My surgeon did say that smoking would make it more difficult to get the skin grafts to take.

lockman

Pumpkinseeds wrote: »

Has anyone noticed any foods that aggravate their HS? I've noticed that if I have a bit of a binge at weekends on stuff like crisps or peanuts, that I tend to have a flare up.

Can't say I've noticed any food triggers for me. Many others (here and elsewhere) say they have noticed food triggers.

lockman

Pumpkinseeds wrote: »

I smoked for years as well and for the last year before the surgery I was smoking a ridiculous amount because of the stress and pain. Looking back I don't know how I could afford to smoke as much as I did. I haven't smoked for 7 years or so and I honestly can't say that it's made a difference. My surgeon did say that smoking would make it more difficult to get the skin grafts to take.

I smoked for years and quit in 2011. I smoked very heavily during the last few years, partly in an attempt to cope with the pain and stress of HS. I did notice an improvement in the HS post smoking, but this didn't happen for 12+ months after quitting and I believe that other factors contributed to the improvement (drugs and lifestyle changes mainly).

Trisha_H

Pumpkinseeds wrote: »

As Lockman says, reapply. I've had to appeal everything I've ever applied for benefits wise. I suspect it's standard practice to refuse people's applications. You've nothing to lose. Even my GP told me at one point all of his Medical Card patients cards weren't being renewed and people were having to appeal the decisions. If you could get your consultant to put something in writing it would probably help. Sorry you're having such a rough time.

My appeal has been sent and now I'm just waiting to see what happens. The letter I got said it could take a while, which is frustrating. But I'm keeping my fingers crossed.

lockman

Trisha_H wrote: »

My appeal has been sent and now I'm just waiting to see what happens. The letter I got said it could take a while, which is frustrating. But I'm keeping my fingers crossed.

The very best of luck with the appeal Trisha. We will all be keeping a few fingers crossed for you.

Please let us know how it works out, whether it be good/bad news.

lockman

See link for an abstract of a review paper entitled "Atypical Hidradenitis Suppurativa", just published by a Scottish group.

The sites affected, in order of frequency, are the axillae, groins, perianal and perineal region, mammary and submammary skin, buttocks, and pubic region.

I think most of us can identify with some or all of the above.

What struck me from this was the list of atypical sites where HS can strike, as mentioned a few times in this thread. From the paper:
Other sites that may be affected more rarely include the chest, eyelids, scalp, retroauricular and preauricular skin, thighs, and abdomen

Trisha_H

lockman wrote: »

The very best of luck with the appeal Trisha. We will all be keeping a few fingers crossed for you.

Please let us know how it works out, whether it be good/bad news.

Thank you! I will.

lockman

Hi all,

A leading pharmaceutical company, with operations in Ireland, has commissioned a HS research project and wants to speak with HS patients.

This will involve two small groups (of 2-3 per group) with one group being all male and the other all female. A facilitator will ask questions as part of the study in a confidential and secure setting.

The study groups are due to take place in a central Dublin city centre location on Tuesday May 12, 2015 in the afternoon and early evening.

If you have a few hours free on that date, and are willing to participate, please PM me and I will supply further details on the study groups and the contact info for the study facilitator.

PS: A gratuity will be paid to all study participants.

stupidskin

lockman wrote:

This will involve two small groups (of 2-3 per group) with one group being all male and the other all female. A facilitator will ask questions as part of the study in a confidential and secure setting.

Let me know if they ever plan a visit to cork, thanks

lockman

stupidskin wrote: »

Let me know if they ever plan a visit to cork, thanks

Will do.

lockman

lockman wrote: »

Hi all,

A leading pharmaceutical company, with operations in Ireland, has commissioned a HS research project and wants to speak with HS patients.

This will involve two small groups (of 2-3 per group) with one group being all male and the other all female. A facilitator will ask questions as part of the study in a confidential and secure setting.

The study groups are due to take place in a central Dublin city centre location on Tuesday May 12, 2015 in the afternoon and early evening.

If you have a few hours free on that date, and are willing to participate, please PM me and I will supply further details on the study groups and the contact info for the study facilitator.

PS: A gratuity will be paid to all study participants.

Bumping this as volunteers/participants still needed. If willing and able to participate, please send me a PM asap. Btw, I won't ask or request your details - I will merely pass on the details of the facilitator to you and its up to you to do what you like.

If not enough volunteers come forward this time round, the facilitator has suggested rearranging to a later date and exploring the option of one-to-one meetings i.e. just you and the facilitator, if you are not comfortable in a small group. Please PM if this option is more desirable to you.

Thanks

Pumpkinseeds

It's a shame they didn't leave the questionnaires with Dermatologists who have HS patients. Most of us don't live near Dublin and I think that regardless of the topic, people will be more honest/open when they have anonymity.