13 Years and Counting!

Skin, nail and hair health
1

Hi All

Just wanted to write how I'm feeling down and really to tell someone other than my Husband that I have HS. I haven't shared this with anyone other than him and that is only because I have had to (if you know what I mean). I initially only had HS on my buttocks which started when I was pregnant with my first daughter 13 years ago, I hid this quite well, even from my husband for some time. I now suffer not only on my buttocks but on my breasts, under my breasts, under my arms, and groin. I feel disgusting most of the time. Over the last four years I have had acne on my face too, I am 31 now and had never suffered with acne before! I was told it was HS a year ago! This only happened because my GP sent me to the hospital as I had a 'lump' about the size of a strawberry on my groin that was painful to say the least, I could hardly walk! I now have two children, my six year old loves to cuddle me and squeeze me tight which to be quite honest can be really painful at times, but what can I say? She once saw my buttocks as I was getting out of the bath and said 'oh mummy I think you've got chicken pox' I pretended not to hear her and cried in private. I hate it! My husband is quite good really and avoids the subject which suits me fine however the effectionate pat on the bum as he passes me can sometimes bring tears to my eyes. Does anyone else feel that this is their fault? What have I done to deserve this? I know it's not life threatening and I should be grateful for what I have and I am truly, but sometimes the pain is awful, as I have it in so many areas sometimes I can't sit (without discomfort/pain)) I can't lift my arms (without discomfort/pain). Well, thank you for reading this and listening to me rant I actually feel better for writing it and when I'm feeling a little better about myself I will write again.

Take Care

Rachel

2

Hi there Racheal and everyone else

I am so sorry to read that you are feeling down and you are feeling so ashamed about suffering with HS. I wish that wasn't the case for us all and our kids could understand things better, but unfortunately things that our kids say hurt although they never mean it to be so.

I have been personally suffering for HS for nearly 20 years, I found my first lump on the side of my breast; aged of 16, and thought I had developed breast cancer, which took me to my GP at the time who laughed at me and told me it was a boil and nothing to worry about while verbally patting me on the head while going out of his surgery. I would get a `boil' every few months and never ever went back to a GP surgery.

Well that was the case until about 5 years ago and I was admitted to hospital with a severe infection and as part of the work-up the started looking at my underarms, breasts and groin area. Which was worrying me a lot - I asked the doctors what he thought he was doing, which he replied \"Why didn't you tell us you suffered from Hidradenitis Suppurative when you were admitted?\" I replied \" I would have if I knew what it is and if I had it.\" The doctor got really antize at this point \"Well, those things that are on your underarms is Hidradenitis Suppurative and by the looks of it you haven't been using any of the treatments that doctors have given you.\" I looked at him like he was cuckoo and replied rather loudly \"Whatever you are selling I am not buying I was told that these were boils and that they were nothing to worry about.\" That poor doctor had to end up sitting with me for an hour and telling me excatly what HS is and how to treat it.

I was never given any antibiotics or told not use antiperspirant; which I had used all the time to get rid of the smell, or that I was meant to have them covered when they burst etc. I was so mad at the world for a long time.

Lets say that things have improved some what - I know what to do when I have a flare up, but when my flare has now lasted 3 years and with no rest in between and have been on antibiotics for at least a year of that time. I now had to make the difficult decision to go for surgery as the scar tissue on my underarms is now restricting my movement. I personally don't want to have the surgery - but even in last week I encounter doctors who are not open to trying new things and are not willing to learn from sites like this one and many which are similar which are run by sufferers who will tell you what works and what doesn't then I feel like I am running into a brick wall. I currently have 9 lesions on my underarms all the size of a grape, 3 under my breast which are all the size of a small apple and 2 in the groin area which are going down, but where the size of a small apple. I feel tired of the trips to the GP, the specialist nurses, dermatologists and now surgeons, which all in all makes this girl feel really dizzy and fed up.

My husband is understanding to a point - but even he is now getting annoyed with me being in pain, always on one type of pill or got numerous mepore pads bits of me that are leaking - all in all doesn't make for much romance. My kids are older - but they would like mum to go swimming with them again and not be scared to show off her arms.

Hope you feel better soon.

3

Hi, I too got my first lump on my inner thigh while pregnant with my daughter in 1993 - I was 22 at the time.

It was so painful & my doctor said it was a boil, probably due to my hormones & that it'd probably go away.

15 years on & that boil went & then returned with avengence!

I now hace 3 under my left arm which are so painful & continuously leaking. I have to have my arm up across my chest as the pain when it's by my side is unbearable.

I get them on my inner thighs, arms, & now vagina :oops:

I finally went to the doctors earlier this month. Armed with evidence from the internet, I told him what I thought I had........He looked at me, muttered something about \"self diagnosing\" & then sat in silence.

I said that it had taken a lot of courage to come & that I couldn't carry on in the pain I was in. I take ibuprophen for arthritis & he said continue taking them. I asked if I could have a course of anti-biotics like oxy-tetracyclene & he said he'd prefer it if I first saw a dermatologist who could advise on treatment.

So I was given an appointment letter with 4 local hospitals on & asked to ring my chosen hospital up for an appointment.

I was then told that the dermatology department had no clinics for Hidradentis Suppuravita & that they'd have to arrange an appointment for me in another clinic - not very encouraging.

So that's where I am at the moment, awaiting an appointment. Still in pain (typing with one hand as my left arms strapped up).

Simple things like making a meal, getting in & out of the bath, climbing the stairs, getting in & out of a car, hugging someone etc.... can't really be done when the lump & pain are bad. When a lump flares up on the opposite side of the body, I'm left unable to walk, can't get up the stairs etc....

My husbands great, but in the past he's taken things the wrong way in the bedroom department. When the pain is too bad the last thing you need is any friction etc - my husband thought I'd gone off him.

Same with going on holiday, I'd love to cool down in the pool but with armpits & thighs that look so unsightly I wouldn't do it, & also, the general public would see it as a contageous disease & I'd have to jusify why I was able to share a pool with others.

I used to get flare ups every couple of months or so. Now, they're continuous :cry: I don't seem to get a day off from the pain or the seeping from the wounds.

Also, as I have arthritis, several websites have linked this disease with arthritis - do any other suffers have arthritis?

Apparently, it's also genetic - my dad also has this (I don't have any contact with him though)

I'm told it lowers your immunity & coughs & colds, viruses etc are more frequent & aggressive.

I'm also told that just 4% of the UK's popullation have this disease & they're mainly women sufferers - I also think this percentage is a lot higer, as we don't really get the support & advice at the begining. It's not until you're at rock bottom that you seek medical help.

I've lost friends through this - they didn't seem to understand that they couldn't catch it off me & that if I said I couldn't go out I really meant it.

This disease not only stops you in your tracks day to day but, planning holidays, days out, going to a wedding etc are also comprimised.

I went to Benidorm last year & going through the security screening at Leeds/Bradford airport was a nightmare.

Arms up & out & legs apart to be searched was so painful, her patting me under the arms & between the legs made me well up - I'm sure she thought I'd got something hidden & was about to confess! smile

Well, I suppose I should get off.......I could go on & on about this horrid disease!

Take care to all sufferers, if we all stick together supporting each other, it may not take the pain away but at least we all kno we're not in this alone! :D

4

Hi there - I know what you are talking about - after over 20 years with this you do learn what sets you off - but there is good news. I have been virtually clear for over a year - it cost nothing to do - I first went gluetn free - but now find I can eat bread - as long as it does not contain whole grains - as soon as I eat wholemeal bread, muesli or corn chips - the HS comes back - if I stay off wholegrain then I am clear - easy choice aye!!! I have gone from 3-6 lessions every month, spenign a fortune on wound site covers, docotr appoitments, injecting steroids into the site (doctor taught me how to do this) etc, to having maybe one every 4 months, when I am dumb enough to try whole grain again.

I have been under a lot of stress with a very sick family member and this usually brings on another attack - but have been - free and clear!!!

Please try this - if it worked for me it might for you.

5

Hi,

I have had this (HS) since i was approx. 13yrs old but its has just been getting worse the last couple of years. it all started when i started my periods and i got a couple of boils near my bottom and vigina but as i when through my teenage years it just got worse and now being 20yrs old i have them on my inner thigh, near my virgina, on my armpits (which have scared the worse out of the lot) and the odd 1 on my breast. Being so young i find that i dont have the confidence in the bedroom to start a relationship with anyone. :cry:

when i went to the doctors with my symptoms and details on info i found on the internet, the female doctor just laughed at me and said that the only thing they could do it put me on some antibiotics to try and clear them up but the just got worse and never went at all. I went on holiday recently and they have cleared up slightly on my thighs but as soon as i got back i have very painful boils on my legs now.

This is really worrying me as there doesnt seem to be any thing to clear this up.

Can anyone help me to get rid of this. :cry:

Please Please

6

I have had the exact same experience.  I did some research and the solution really is Zinc.  I read an article where people took divided doses of 90mg of Zinc Gluconate and 80% went into remission. I tried the zinc gluconate but, it make it worse for me. Then, I tried Zinc Picolinate...which is more readily absorbed and IT WORKS.  I have been lesion free for YEARS.   Please please please try it....it really does work.  I started with 2x 44 mg per day and eventually tapered down to 44mg 1x per day.  You need to supplement with Copper....2mg per day...this can be found in many multivitamins as zinc can deplete you of copper.  Please try it...my scars are actually as flat ans soft as they could possibly be now and it has literally been years since I've had this condition (after suffering for 30 years).  Good luck!