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Hidradenitis Suppurativa

lockman

Hi All,

Was diagnosed with hidradenitis suppurativa (HS) about 3 years ago. Have had 2 operations so far (armpits) and am currently awaiting a third op (groin region).

Just wondering if there are many other HS sufferers out there, how long you have had it, therapies tried, surgeries etc, alternative treatments, and the like.

Regards,

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lockman

lockman wrote: »

Please follow this link for details of the HS community meeting:
http://irishskinfoundation.ie/news/detail/first-hs-community-meeting-to-be-held-in-january-2016

Bumping this.

Less than 2 weeks to go to this event for anyone who may be interested in attending.

lockman

lockman wrote: »

Please follow this link for details of the HS community meeting:
http://irishskinfoundation.ie/news/detail/first-hs-community-meeting-to-be-held-in-january-2016

Bump.

Less than a week to go to the first HS community group meeting.

lockman

FYI,

There is also a HS clinic being run at Tallaght Hospital by consultant dermatologist Dr. Anne-Marie Tobin. She is actively involved in HS research.

Dr Tobin will see HS patients almost straight away! Also, you do not have to be from the Tallaght area to attend: Dr. Tobin will see HS patients from anywhere.

lockman wrote: »

Hope you are all well.

Some of you may already know about this and may be attending already, but for the benefit of those who don't.

In recent months, an HS clinic has been established in the dermatology department at St. Vincent's hospital in Dublin. It is run by a team of dermatologists with HS research interests, and crucially, experience in treating the condition.

The dermatologists running this clinic are also actively involved in HS research.

It is, to my knowledge, the only such HS clinic being run in the country. The good news is that it is open to anyone with the condition. All you will need is a letter of referral from your GP confirming that you have HS. If you require further information, please PM me.

Beffe.xx

lockman wrote: »

Bumping this.

Less than 2 weeks to go to this event for anyone who may be interested in attending.

Hi there.
I do not know how i missed this thread... i am always googling for answers and i have never come across this comversation.
I am 30 years old i have hs about 18 years now and it is very bad.. i have never had a full month without pain in my life.. i have been on roaccatane...i lost 6 stone... i do smoke but battling that tomorrow and have about 2 stone to lose still... i excercise regular and my diet is healthy enough... unfortuantely the docotr told me i am very rare and there is no cure and i happen to have it severely.
I am sad i missed the support meetings because i would love to meet people to discuss this.
I currently inject myself to keep my skin at bay but no joy. I went to A and E today being a sunday to be drained i am in that much pain with a poultice on my arm as i type this minute.
I have scars and lesions all over my pits and my groin... it is very painful and sadly depressing.. it has affected me my whole life. I was always told surgery was not an option as my hs was too active... but this week i will put my foot down and demand something as i cannot go without.
Because of various treatments i have developed lesions on my stomach my upper inner thighs...all down my pits and sides...all over my groin..open holes...old scars...you name it... i have been to every derma in Cork and i was a case study for the Irish bord of dermas along wit meeting students regularly who studied me and nothing ever came of this....
Was the meeting a success...will there be more? Is there anyone in Cork ? I thought i was the only one....

lockman

Beffe.xx wrote: »

Hi there.
I do not know how i missed this thread... i am always googling for answers and i have never come across this comversation.
I am 30 years old i have hs about 18 years now and it is very bad.. i have never had a full month without pain in my life.. i have been on roaccatane...i lost 6 stone... i do smoke but battling that tomorrow and have about 2 stone to lose still... i excercise regular and my diet is healthy enough... unfortuantely the docotr told me i am very rare and there is no cure and i happen to have it severely.
I am sad i missed the support meetings because i would love to meet people to discuss this.
I currently inject myself to keep my skin at bay but no joy. I went to A and E today being a sunday to be drained i am in that much pain with a poultice on my arm as i type this minute.
I have scars and lesions all over my pits and my groin... it is very painful and sadly depressing.. it has affected me my whole life. I was always told surgery was not an option as my hs was too active... but this week i will put my foot down and demand something as i cannot go without.
Because of various treatments i have developed lesions on my stomach my upper inner thighs...all down my pits and sides...all over my groin..open holes...old scars...you name it... i have been to every derma in Cork and i was a case study for the Irish bord of dermas along wit meeting students regularly who studied me and nothing ever came of this....
Was the meeting a success...will there be more? Is there anyone in Cork ? I thought i was the only one....

Hi,
Glad you found us and very sorry to hear you have this. You are certainly not alone in suffering with this. There are many in Ireland living with HS (and I know of a few living in/near Cork).

The meeting did go ahead in Dublin and more are planned for the future. In Sept./Oct. there will be regional meetings in Cork, and also possibly in Galway. Almost everything is in place and are just awaiting confirmation from some guest speakers. Will post more details here as soon as everything is confirmed.

Coffeeandtea

HI All,

I have a mild case of hidrentitis suppravita.. I just came on here to post about something that's been working for me--- showering with hibiscrub... hibiscrub is an antibacterial soap that surgeons use to wash with before surgery.

I shower between 1-3 times a day with it (quick 5 min showers are fine). it gets rid of bacteria and keeps your skin bacteria free for 6 hours. in the beginning after a while my skin got a bit dry but its fine now (took breaks sometimes for a few days)

So my situation is I used to get a bad 'spot' every couple months that would need antibitotics and sometimes it would turn into an abscess (despite taking antibiotics) and I would need surgery.

I would also have a few minor ones usually as well. I have some 'tracts' and some scaring. so I started using the hibiscrub 13 months ago and I have not needed antibiotics in that time. I have noticed the odd one starting to form but they go away. (touching wood now)

So I came on here because I remember last year when I had a particularly bad one I googled and found out there were support groups.. so I thought it would be my good deed to come one and post something that may be helpful for some people. But now I am both freaked out a bit (shelfishly) and also really saddened to hear some of your experiences . I afraid of 'noicebo' effect, I will somehow give myself a worse version. I really feel for those of you with a moderate or severe case.

Just to add, I always showered between 1-2 times, so its not the increase in showering. Although I do think in hot whether we do need more showers than a person without the condition. I shower even after 30 min walk now if I can.

I did also at around same time start eating healthier and excercising, so maybe that helped too. I've only lost a stone but do feel better. (another 3.5 stone to go, so still overweight).

I also have been taking vit D 3 for about two years, I didnt get my levels checked, but I noticed a big difference in mood and energy when I started taking it, so maybe it is a factor.

so my dermatologist thinks, like many of yours, that it is caused by inflammatory processes. He also says being overweight and smoking are contributory and aggravating factors . He said ten years ago it was rare and now hes sees a big increase in overweight smokers coming to him with it. He thinks both these factors contribute to the inflammatory processes.

so I am trying to loose weight (for other reasons too) and quit cigs.

Hope the hibiscrub helps some people at least.

lockman

Hello all,

An HS support group meeting is being held on the morning of Saturday, Oct. 1st, from 11:00-13:00, in a central Dublin location. It will be a good chance to meet others with the condition, and to exchange information and tips on living with HS. All are welcome to attend. Feel free to bring a friend, partner, loved one etc.

For further information on this event, details on location etc., please send me a PM.

DeLady

I have been prescribe a gel called treclinac, has anybody come across it and if so what's the verdict?

lockman

lockman wrote: »

Hello all,

An HS support group meeting is being held on the morning of Saturday, Oct. 1st, from 11:00-13:00, in a central Dublin location. It will be a good chance to meet others with the condition, and to exchange information and tips on living with HS. All are welcome to attend. Feel free to bring a friend, partner, loved one etc.

For further information on this event, details on location etc., please send me a PM.

Two weeks to this event.

TEuten

Hello all,

There's a support group meeting is on in Cork, also in October, run by the Irish Skin Foundation, there's also information on their site irishskin.ie and they run a free helpline with access to guidance from specialist dermatology nurses.

lockman

lockman wrote: »

Hello all,

An HS support group meeting is being held on the morning of Saturday, Oct. 1st, from 11:00-13:00, in a central Dublin location. It will be a good chance to meet others with the condition, and to exchange information and tips on living with HS. All are welcome to attend. Feel free to bring a friend, partner, loved one etc.

For further information on this event, details on location etc., please send me a PM.

One week to go.

lockman

Hi all,

An HS community meeting will be held in a central Cork hotel on Saturday, Oct 22nd.

It will be a great opportunity to meet and hear from others with HS.

We will also have a guest speaker at the event - a dermatologist who both treats people with HS and who is actively involved in HS research.

More details of the event can be found here:
http://bit.ly/2d40C7T

All are welcome to attend. Feel free to bring a friend, loved one etc.

lockman

lockman wrote: »

Hi all,

An HS community meeting will be held in a central Cork hotel on Saturday, Oct 22nd.

It will be a great opportunity to meet and hear from others with HS.

We will also have a guest speaker at the event - a dermatologist who both treats people with HS and who is actively involved in HS research.

More details of the event can be found here:
http://bit.ly/2d40C7T

All are welcome to attend. Feel free to bring a friend, loved one etc.

Two weeks to this.

bluemoon2010

lockman wrote: »

Two weeks to this.

Hi is there any support meetings in dublin? cheers

lockman

bluemoon2010 wrote: »

Hi is there any support meetings in dublin? cheers

Hi there,

We just had one in Dublin on Oct 1st. Next Dublin meeting is planned for Feb/Mar of 2017. Will post details well in advance.

We will also be having a Galway meeting early November if that is any good to you? Again, will post here in advance.

bluemoon2010

lockman wrote: »

Hi there,

We just had one in Dublin on Oct 1st. Next Dublin meeting is planned for Feb/Mar of 2017. Will post details well in advance.

We will also be having a Galway meeting early November if that is any good to you? Again, will post here in advance.

Hi I'll try and get an appointment with a dermatologist In the mean time..i have a referral letter from my gp but he said I could be waiting up2 - a year to get an appointment with a dermatologist at any hospital in Dublin, very frustrating as this is effecting my daily life.

lockman

bluemoon2010 wrote: »

Hi I'll try and get an appointment with a dermatologist In the mean time..i have a referral letter from my gp but he said I could be waiting up2 - a year to get an appointment with a dermatologist at any hospital in Dublin, very frustrating as this is effecting my daily life.

There is a HS clinic at St Vincent's in Dublin 4. They are a group of dermatologists and other health care professionals (surgeons, dieticians, smoking cessation nurses, wound care specialists etc). They will see you in 2-3 months - all you need is a letter of referral from your GP stating you have HS.

There is also a dermatologist at Tallaght hospital with clinical and academic interests in HS. She will see you straight away as she prioritises HS patients. Again, all you need is a letter of referral from your GP stating you have HS.

PM me if you want more details on either of the above.

lockman

lockman wrote: »

Hi all,

An HS community meeting will be held in a central Cork hotel on Saturday, Oct 22nd.

It will be a great opportunity to meet and hear from others with HS.

We will also have a guest speaker at the event - a dermatologist who both treats people with HS and who is actively involved in HS research.

More details of the event can be found here:
http://bit.ly/2d40C7T

All are welcome to attend. Feel free to bring a friend, loved one etc.

One week to this. Our guest speaker is an expert on HS- it's a great opportunity to ask questions about HS outside the formal setting of a doctor's surgery. If you are in/near Cork next Saturday (22nd), we would love to see you at this.

lockman

Update, this meeting has been cancelled.
Sorry about the short notice.

Will post an update as soon as I know more.

lockman wrote: »

Hi all,

An HS community meeting will be held in a central Cork hotel on Saturday, Oct 22nd.

It will be a great opportunity to meet and hear from others with HS.

We will also have a guest speaker at the event - a dermatologist who both treats people with HS and who is actively involved in HS research.

More details of the event can be found here:
http://bit.ly/2d40C7T

All are welcome to attend. Feel free to bring a friend, loved one etc.

lockman

Hello all,

An HS support group meeting is being held on the afternoon of Saturday, Nov. 12th, from 14:00-16:00, in a central Galway location. It will be a good chance to meet others with the condition, and to exchange information and tips on living with HS. All are welcome to attend. Feel free to bring a friend, partner, loved one etc.

For further information on this event, details on location etc., please send me a PM.

lockman

lockman wrote: »

Hello all,

An HS support group meeting is being held on the afternoon of Saturday, Nov. 12th, from 14:00-16:00, in a central Galway location. It will be a good chance to meet others with the condition, and to exchange information and tips on living with HS. All are welcome to attend. Feel free to bring a friend, partner, loved one etc.

For further information on this event, details on location etc., please send me a PM.

Two weeks to this.

lockman

lockman wrote: »

Hello all,

An HS support group meeting is being held on the afternoon of Saturday, Nov. 12th, from 14:00-16:00, in a central Galway location. It will be a good chance to meet others with the condition, and to exchange information and tips on living with HS. All are welcome to attend. Feel free to bring a friend, partner, loved one etc.

For further information on this event, details on location etc., please send me a PM.

One week to this.

lockman

HS featured on a recent episode of RTE's You Should Really See A Doctor. Here is a link to the show:

http://www.rte.ie/player/ie/show/you-should-really-see-a-doctor-30003663/10653666/

The first section is ~ 2 mins long and starts at 07:10.

The follow-up is ~ 1 min long and starts at ~17:15.

While it is good to see awareness of the condition being raised by featuring on shows such as this, I feel it was very much a missed opportunity. They neglected to mention how it impacts psychologically as well as physically; in addition, the physical discomfort barely got a mention.

lockman

Hello All,

For those who may be interested, a community meeting for those living with HS will take place in a central Dublin hotel this April. The meeting will feature a talk from a dermatologist active in treating and researching HS.

Further details:
http://bit.ly/2lSjoz1

lockman

There will be a community meeting for those with HS, their friends and families etc., in a city centre hotel in Cork this April 19th. If you are in/near Cork on that date, please feel free to come along.

A Cork-based dermatologist will be the guest speaker at the event.

Further details:
http://bit.ly/2lPsegm

lockman

lockman wrote: »

Hello All,

For those who may be interested, a community meeting for those living with HS will take place in a central Dublin hotel this April. The meeting will feature a talk from a dermatologist active in treating and researching HS.

Further details:
http://bit.ly/2lSjoz1

Just under 5 weeks to this. If interested, please click on the link and register so we know roughly how many will be attending. Thank you.

lockman

Today sees the launch of a new initiative by the Irish Skin Foundation charity,, highlighting that it takes the average HS patient:

- 5 different doctors
- seen over 17 visits
- and approx. 8 years, to receive their HS diagnosis.

This needs to change.

http://irishskin.ie/five17eight/

lockman

The Irish Skin Foundation have today published an HS information booklet. .

It exceeds the size limit for boards, but you can access it here:
https://irishskin.ie/five17eight/

Download it/print it off and give it to your friends/family/doctors to educate them about HS

pilly

So glad to have found this thread, I've suffered with this for at least 10 years now. Had initial surgery about 7 years ago but the pain afterwards was unbelievable. Then got it somewhat under control with medication and got good relief with small relapses for many years. Now flaring up again and very painful.

I wonder does the medicine lose its effectiveness after a certain amount of time?

lockman

pilly wrote: »

So glad to have found this thread, I've suffered with this for at least 10 years now. Had initial surgery about 7 years ago but the pain afterwards was unbelievable. Then got it somewhat under control with medication and got good relief with small relapses for many years. Now flaring up again and very painful.

I wonder does the medicine lose its effectiveness after a certain amount of time?

Glad you found us.

Very sorry to hear you have had a relapse. Are you seeing a GP or dermatologist at the moment? Various new medications have become available for HS in the past few years.