Hidradenitis Suppurativa

lockman · 10-03-2015 9:05pm

Pumpkinseeds wrote: »

I've been really self-concious of the massive scarring from the surgery under my left armpit. So much so that I usually end up hiding it under long sleeves in the Summer. I stumbled across some images online of tattoos people had done over scars to cover the scarring and I'm thinking of having it done. I had a chat with a chap this morning and we worked out a design that I like and that is workable. He's going to do a test next week with the tattoo gun thingy with no ink in it to check that it won't be too painful for me.

Due to the size of the area it'll take 3 to 4 hours to do, if there's no problem with the trial run next week. I'm gonna have to scrape and save to afford it but I really like the idea of having it covered with a Cheshire cat tattoo instead of all the scar tissue. I'd be happy to wear sleeveless or short sleeved tops if the scars were covered.

Did you do the trial run? If so, how did it work out?

lockman · 10-03-2015 9:08pm

I've been reading a lot of people say that they apply Vicks to their HS lesions with many reporting positive experiences.

Just wondering if anybody here has tried it and if so, what were their experiences like?

I'm probably wrong but I assume that it would sting?

Pumpkinseeds · 10-03-2015 11:42pm

lockman wrote: »

Did you do the trial run? If so, how did it work out?

I chickened out until I run it past my Dermatologist at next months appointment.:o

Pumpkinseeds · 10-03-2015 11:43pm

lockman wrote: »

I've been reading a lot of people say that they apply Vicks to their HS lesions with many reporting positive experiences.

Just wondering if anybody here has tried it and if so, what were their experiences like?

I'm probably wrong but I assume that it would sting?

The pain is negligible compared to the pain of the cyst and only lasts a minute before it numbs the skin. I also use it for bad headaches by rubbing a little bit on each temple.

Pumpkinseeds · 11-03-2015 12:19pm

My mum is going through menopause and had been having a really rough time with heavy sweating through hot flushes and night sweats so bad that they were keeping her awake at night. She started taking Sage pills 3 times a day, 2 in the morning and 1 at night and she says it's brilliant. The sweating has stopped and she's able to sleep now. It might be worth a try for HS, especially during the Summer months. I'm thinking of trying it myself but I've got Epilepsy and I want to run it by my neurologist next time I see him as I don't want to risk exacerbating it.

lockman · 11-03-2015 6:17pm

Pumpkinseeds wrote: »

The pain is negligible compared to the pain of the cyst and only lasts a minute before it numbs the skin. I also use it for bad headaches by rubbing a little bit on each temple.

Well, you learn something new everyday. Probably worth a try so. I am willing to try just about anything that might help with this..

lockman · 11-03-2015 7:45pm

See link for the latest interesting paper from New York clinician Dr Noah Scheinfeld. He publishes regularly on HS and has vast experience in treating the condition:

http://www.ncbi.nlm.nih.gov/pubmed/25756493

lockman · 12-03-2015 6:22pm

See link for a paper just published by an Israeli group that examined 3000+ HS patients and draws a link between HS and metabolic syndrome, and other related conditions.

http://www.ncbi.nlm.nih.gov/pubmed/25760289

Increasingly of late, I am reading about HS and this metabolic syndrome. For more on metabolic syndrome, see:

http://www.mayoclinic.org/diseases-conditions/metabolic-syndrome/basics/definition/con-20027243

Pumpkinseeds · 14-03-2015 1:45pm

My HS affects the armpits, groin and bottom, with the odd one on my inner thighs. Sometimes I'll come across an online article that describes them on peoples heads, back of neck and abdomen. I'm just curious to know if anyone on this forum has had them in those areas.

lockman · 14-03-2015 5:14pm

Pumpkinseeds wrote: »

My HS affects the armpits, groin and bottom, with the odd one on my inner thighs. Sometimes I'll come across an online article that describes them on peoples heads, back of neck and abdomen. I'm just curious to know if anyone on this forum has had them in those areas.

When at my worst a few years back, I used to get lesions behind the ears.

Pumpkinseeds · 14-03-2015 5:35pm

lockman wrote: »

When at my worst a few years back, I used to get lesions behind the ears.

It's frustrating that the information about HS is often so inaccurate. For so many years the info was that it only affected the armpits, groin, perineum, but now it's obvious that it affects so many other areas too. I remember when they said it only kicked in in adolescence and yet I find articles where it affects very young children. Likewise they said it got a lot better after menopause, yet I'm in early menopause and mine is more active than ever.

lockman · 14-03-2015 8:34pm

Pumpkinseeds wrote: »

It's frustrating that the information about HS is often so inaccurate. For so many years the info was that it only affected the armpits, groin, perineum, but now it's obvious that it affects so many other areas too. I remember when they said it only kicked in in adolescence and yet I find articles where it affects very young children. Likewise they said it got a lot better after menopause, yet I'm in early menopause and mine is more active than ever.

I too find that a very frustrating aspect of living with HS. What works in some doesn't work in others and so on. It really does test your patience. I find the not knowing what is going to happen very frustrating. I used to let the condition dominate my life (didn't have much of a choice) but now I am trying to regain some control by for e.g. planning holidays and so on, and saying to hell with the HS.

lockman · 19-03-2015 7:25pm

Pumpkinseeds wrote: »

It's frustrating that the information about HS is often so inaccurate. For so many years the info was that it only affected the armpits, groin, perineum, but now it's obvious that it affects so many other areas too. I remember when they said it only kicked in in adolescence and yet I find articles where it affects very young children. .....

See link for a paper describing a case you alluded to i.e. a case of HS in a young girl. There is no abstract available unfortunately.

http://www.ncbi.nlm.nih.gov/pubmed/25784224

Pumpkinseeds · 23-03-2015 1:04pm

Well, another week and a new HS site. I haven't had it come up anywhere other than armpits, groin and perineal areas in decades, but it's sprung up elsewhere. It could just be coincidence but I think that in my case while the Infliximab infusions didn't improve the condition, stopping it made things a lot more active.

Coming off it I had really bad pains in the bones of both hands and areas that had been active but relatively calm, became very active again. I'd be curious to know if anyone had the same experience with the Infliximab.

lockman · 23-03-2015 4:21pm

Pumpkinseeds wrote: »

Well, another week and a new HS site. I haven't had it come up anywhere other than armpits, groin and perineal areas in decades, but it's sprung up elsewhere. It could just be coincidence but I think that in my case while the Infliximab infusions didn't improve the condition, stopping it made things a lot more active.

Sorry to hear that- it is always a disapointment when a new one rears its ugly head, and especially so in a new area.

Pumpkinseeds wrote: »

Coming off it I had really bad pains in the bones of both hands and areas that had been active but relatively calm, became very active again. I'd be curious to know if anyone had the same experience with the Infliximab.

The stopped my infliximab for a bit a few months back to see how I'd get on.. Almost immediately some old dormant lesions reawakened, and a nasty new one appeared. I didn't experience any pains though.

lockman · 23-03-2015 9:46pm

lockman wrote: »

See link for a paper describing a case you alluded to i.e. a case of HS in a young girl. There is no abstract available unfortunately.

http://www.ncbi.nlm.nih.gov/pubmed/25784224

Just to add that this paper is now freely accessible to all.

It is particularly upsetting reading about HS in someone so young (an 8 year old) and they look at ~ 8 other previous reports of HS in children.

Trisha_H · 30-03-2015 12:08pm

I've got a question! Did anyone here struggle to find or hold down a job because of HS?

Trisha_H · 30-03-2015 12:09pm

I've got a question. Did anyone here struggle to find or hold down a job because of HS?

lockman · 30-03-2015 5:44pm

Trisha_H wrote: »

I've got a question. Did anyone here struggle to find or hold down a job because of HS?

Hi Trisha,

Yes to your question.

I believe my HS was the cause of me losing a good job I had before.

It has stopped me from being able to work in the past: I was on illness benefit for ~2 years due to the HS (and it was my GP who suggested this).

It also restricts the types of work I can do.

Pumpkinseeds · 30-03-2015 6:35pm

Hi Trisha. I lost a job because of HS. I just missed so much work because I was having a lot of time off for surgeries. I haven't worked for quite some time now, but I haven't been looking because I know that with my HS being so severe, I wouldn't be able to work full-time and if I lost my benefits I would probably never get them back. A lot of it comes down to how supportive an employer is and how severely your HS restricts you. I've had Epilepsy for almost 30 years and I never mentioned it to employers as I knew I'd never get a job if I did.

What I'm saying is that if I were looking for work now and the HS wasn't too severe, I wouldn't mention it to potential employers.

Trisha_H · 30-03-2015 6:41pm

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 · 30-03-2015 6:58pm

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 · 30-03-2015 7:06pm

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 · 30-03-2015 10:40pm

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 · 13-04-2015 4:34pm

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 · 13-04-2015 6:52pm

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 · 13-04-2015 7:46pm

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 · 13-04-2015 8:13pm

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 · 13-04-2015 10:32pm

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 · 14-04-2015 4:14am

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 · 14-04-2015 1:39pm

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 · 14-04-2015 6:21pm

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 · 14-04-2015 10:00pm

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 · 14-04-2015 11:04pm

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 · 15-04-2015 9:19pm

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 · 15-04-2015 9:42pm

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 · 16-04-2015 1:36pm

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 · 17-04-2015 11:10am

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 ðŸ˜‰. 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 · 17-04-2015 3:08pm

stupidskin wrote: »

I find wheat products and definitely beer. Not so much wine though, after extensive testing ðŸ˜‰. 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 · 17-04-2015 9:15pm

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 · 17-04-2015 9:20pm

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 · 24-04-2015 6:41pm

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 · 24-04-2015 7:58pm

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 · 29-04-2015 6:34pm

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 · 29-04-2015 6:35pm

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 · 30-04-2015 6:57pm

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 · 02-05-2015 3:37pm

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 · 02-05-2015 8:44pm

stupidskin wrote: »

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

Will do.

lockman · 05-05-2015 8:01pm

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 · 06-05-2015 5:17pm

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.

Hidradenitis Suppurativa

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