Slow and Steady

Hidradenitis suppurativa

Posted on: May 30, 2009

Since I started menstruation at 9 years old, I’ve had a problem that I never even told my mum about. About a week before my period I get a boil on my vagina area that is very painful and gets bigger and bigger as the days pass.

Eventually it either bursts and releases pus and blood, or it just goes down. This will always happen by the time my period is over. Over the years it has come and gone, sometime being as big as an egg. I used to use a sterilised needle and prick it to get relief from it.

The skin around the area is awful, there is a lot of scarring

I’ve seen many doctors, they usually give me antibiotics, and tell me it’s an inflamed hair follicle, but this never made any sense to me because it was always around my period, which makes me believe it’s hormonal.  No-one has ever really questioned it further and folliculitis has been the reason written in my medical notes. A few years back a doctor told me to stop shaving as it was probably the problem.

I used hair removing cream and the problem still existed. The doctor then told me to stop removing hair full stop which I did and the problem was still there.

Over the past few months, there has been a big change.

3 months ago, the boil did not go down by the end of my period. 2 months ago another boil came up right next to the other one, and didn’t go down either.

I started searching online  for ideas of what it could be and a discussion on a women’s health site made me look into hidradenitis suppurativa. As I was reading the experiences from other women, I felt like someone had written my story down. I went to my doctor, and said I suspected this condition and that these 2 boils are very painful.

He said that HS usually appears in the armpits and he hasn’t heard of it being in the vagina area before. He gave me some antibiotics and sent me on my way. I didn’t ask him to have a look, as I still don’t like being examined by a male doctor.

Well I finished the course last week and not only were they still there, but they were now open wounds. It hurt to wear underwear, and was really really itchy. To top it off another one has started forming as I’m due on my period soon.

I managed to get an appointment yesterday with a female doctor and walked in with no underwear on, lifted up my skirt and asked her what the hell was going on! She had a look, and then said I have HS.

I nearly cried with relief, finally someone has given me a name. She gave me some strong antibiotics that will help the ones I have, some magnese sulphate paste to dress the area, and then I have to take a long term course of antibiotics to see if it will kill the bacteria that causes HS to form. I’ve been given 2 months to start, and if it works then I will have another 4 months of the to take. She was glad to hear that I wash and dry the area with a different flannel/towel as she said while the condition is not catching, the pus can cause boils in other areas too.

When I asked her what would happen if the antibiotics doesn’t work, she said surgery. That shocked me so I came home last night and started to research this condition.

There is no cure.

Apparently it is always mis-diagnosed (as I know) and people feel too embarassed to speak about it, so there has not been any real research done into why people get it.

I’m really upset that there isn’t a cure, but I have found some treatment ideas on some of the support sites I have found. I will work my way through them to see if they will make a difference.

This has got me thinking about the potential results of my back and neck pain. It feels good to have a name, but what if there is no cure? I still think knowing what you have is better because you can try treatments that are supposed to work for your condition and can have a support network.

Here is the information from the British Skin Foundation

What is hidradenitis suppurativa?
Hidradenitis suppurativa is a chronic and stubborn disease centred on inflammation of the large specialised sweat glands (apocrine glands) that are found mainly in the armpits and groins. These areas show a distinctive mixture of boil-like lumps, areas leaking pus, and scarring.
What causes hidradenitis suppurativa?
It is still not clear why the apocrine sweat glands are affected like this in some people, but mechanical blockage plays a part. As the secretions cannot escape, the tubes containing them may swell up and burst, or become infected.
Contributory factors include the following:
Hormones are involved in the control of apocrine sweat glands and certainly play a part in the disease. Hidradenitis suppurativa affects women more often than men. It does not start before puberty or after the menopause. It may get better during pregnancy, but is often worse before menstrual periods. Some patients do well with hormone treatments (see below).
Bacteria play a part too, but a variety of germs, and not just one special type, is found in the spots. It is not clear whether they cause the disease, or just flourish within it.
There may be a link with acne.

Is hidradenitis suppurativa hereditary?
Hidradenitis suppurativa sometimes runs in families, and some patients or family members may also have had bad acne, or a chronic abscess at the base of the spine (a pilonidal sinus).
What are the symptoms of hidradenitis suppurativa?
Hidradenitis suppurativa can be itchy, but is usually painful, and the lumps hurt if they are pressed.
What does hidradenitis suppurativa look like?
The severity of hidradenitis suppurativa varies from person to person. The main areas to be affected are the armpits, and the skin around the genitals – in the pubic area and in the groins. The skin around the back passage, on the upper buttocks and thighs, and below the breasts, can give trouble too.
In these areas, the skin shows a variable mixture of blackheads, red lumps looking like boils, pus spots, cysts, and areas that constantly leak pus (sinuses). The abscesses can even burrow into nearby structures. As time goes by, more and more scarring appears.
How will hidradenitis suppurativa be diagnosed?
The diagnosis is made clinically, taking into account the areas that are affected, and the look of the spots. Your doctor may take swabs from the area to see which type of germ is present.
Can hidradenitis suppurativa be cured?
No, it usually persists for many years, but may disappear eventually. Treatment usually helps even though it cannot switch the hidradenitis off once and for all.
How can hidradenitis suppurativa be treated?
There are many ways in which your doctor can help you with your hidradenitis suppurativa. In general terms, early hidradenitis suppurativa is usually treated medically, whereas hidradenitis suppurativa that has been going for a long time may need surgery:
If hidradenitis suppurativa suddenly becomes worse:
This may be due to an infection with ordinary germs of the types that infect cuts and grazes; so antibiotics such as flucloxacillin may be used as a short course.
Frequent episodes of this type, with proven bacterial infection, usually mean that you have a sinus or abscess (see treatments below).
Suppressive therapy:

Antibiotics by mouth, taken are long-term, help to suppress attacks. The ones that are used are the same ones used for acne – such as oxytetracycline. They are sometimes put on as topical applications.
Other anti-acne drugs such as isotretinoin (vitamin A derived tablets) may help too, but have important side effects and are available only from dermatology departments.
For women whose hidradenitis suppurativa flares before each period, tablets known as antiandrogens can be useful. The usual one is cyproterone acetate, 50 mg taken on days 5-15 of the menstrual cycle in conjunction with an oral contraceptive called Dianette. It cannot be used for anyone with a tendency to have high blood pressure or to form blood clots.
If the disease is severe, stronger drugs including oral corticosteroids may be used but all carry the risk causing of side effects.

Treatment of scarred sinuses and abscesses:

Persistent discharge or infection in the same site usually means that the medical treatments listed above will not work, and surgical operations – either to remove small areas of repeated inflammation, or wider procedures to take away all the diseased glands – are needed in some cases. In general, hidradenitis of the armpits does better with surgery than hidradenitis in other sites.

What can I do?
If you are too heavy, you will need to lose weight.
As with many other diseases in skin folds, friction makes hidradenitis suppurativa worse, and should be avoided.
You should wash with antiseptic soaps or bath additives.

Advertisements

17 Responses to "Hidradenitis suppurativa"

[…] When I was diagnosed with hidredentis suppurativa I was put on a 2 month course of antibiotics to see if it would work. Now these pills had a very […]

[…] been given a long term course of antibiotics as my HS (note, link may be TMI for some. You may not want to read it if you’re eating/have just […]

[…] as it’s an natural anti inflammatory which is good for the joints, and is also good for HS too. I can’t take normal ones any more as they affect my […]

I too suffer from HS in both the groin and underarm area. I can tell you what has turned into a miracle drug for me and hope it helps. Doxycycline (antibiotic). I use it on an as needed basis rather than a daily treatment. When I feel a breakout about to happen (worse at the time of my period) I will take 1 and usually that’s all it takes. I’m not sure of the specifics why but Doxycycline is a different kind of anitbiotic that does the trick. It works where all others have failed. I hope this helps you and all others that stumble across this that suffer from this humilating and debilitating illness. I was first diagnosed by a dermatologist who explained that over the course of many years of severe breakouts, and due to where the breakouts occur, this disease can become life altering by limiting my range of motion due to built up scar tissue. Here’s hoping it dosen’t come to that!

I have the same exact thing as you and I am very embarassed by it I am just recovering from two surgeries under my arms for it but also have it on my genitals and havent showed my doctor yet I am on strong antibiotics but they are not working for down there I have had this problem since I was 14. I feel for you.

I have this same thing. I’ve been looking for this answer both online and from doctors for almost 5 years. I am definitely going to bring this up to my doctor. I’m 100% positive that this is what I have.

I highly recommend a 6-month Lupron treatment. Be careful of bone loss though. You may not need 6 months depending on how bad your “HS” is. Completely shut down your cycle, avoid estrogen. If it cures your “HS” then it’s not HS. If the “HS” only comes during your period and a few days before, it’s not HS. I know because several top doctors at Stanford, Mayo, UCSF and more have told me that I have been misdiagnosed with HS for 20 years and they don’t know what is wrong now. I need to go to the N.I.H. It completely cleared up on Lupron and when I got off it came right back when it was time for my period. Mine are only filled with blood though and not really much pus. Only in the groin and sacrum and no it’s not pilonidal either, I had several surgeries for that and then the dr decided oops, guess it’s not pilonidal, it’s not a rectal or anal fistula. It didn’t start with my period. It started when I was kicked in the groin. Literally the day after I had blood blisters in my groin, from then on it’s when I have my period. It’s like my period is coming out my skin, and not my vagina at all. I’ve had dozens of surgeries over the past few years for no reason, when I told doctors my period was causing this they didn’t listen. If I find out what is wrong I will post. I’m also considering exploratory surgery to look around in my abdomen and posterior cul-de-sac, uterus. Otherwise I may just have my ovaries out and be done with it. This has completely ruined my life. My problem is not just skin deep, the fistulas are coming from somewhere deep, I can feel a lot of swelling around my tailbone.

Thank you so much for this post. It all makes so much more sense now. I always kept thinking what more could I do, or what didn’t I do to stop these painful episodes. But now I know, better…

Since my 1st period, I was 11. A virgin, I was still embarrassed to tell my mom or see a doctor. And now I know what it is. Its just not fair. I feel so much better know what it is. That I too can just go see a doctor. Thank you

I get these same said boils before my period and they hurt like hell. I thought that I was the only one who got these now I know that I should visit my gynecologist thanks a lot

Omg i almost cried hearing tht im not thee only girl going through this its totally embrassing im going thru the armpit surgery process right now in its completly painful ..i really wish there was a cure for us suffering women.

I BEEN SOBBING EVER SINCE I FOUND OUT THAT THIS THING THAT’S BEEN HINDERING MY WHOLE LIFE HAS A NAME!! FOR AS LONG AS I CAN REMEMBER I’VE BEEN IMPRISON MY THESE MONSTERS THAT JUST WON’T STAY AWAY😢😢😢 EVER SINCE I WAS A CHILD NO ONE CAN TELL WHY I KEEP GETTING THEM!! IM 28 NOW AND CAN NO LONGER DEAL WITH THIS AND DECIDED TO DO DEEPER RESEARCH AND CAME CROSS THIS GOD HAS ANSWERED MY PRAYERS🙏🏽🙌 IT’S SOOO MANY QUESTIONS THAT’S BUILT UP OVER THE YEARS THAT HUNTS ME EVERYDAY (what’s going wrong in my body,, will they stop,, what can I do,, what should I do differently today,, can I fade them away,, how can I ever except myself,, how/will I ever be comfortable with my body,, is it a std that the doctor or tests is missing,, can or will they kill me ,, is this the reason why I haven’t had a child,, after 8 long years how can he fully love me and every part of my body when he hasn’t even seen it,, why me god???) I’M SOOOO ASHAMED OF MY BODY BUT JUST RECENTLY LET THE DOCTOR REALLY LOOK AT MY GROINS HE TOLD ME HE DONT SEE NOTHING OUT OF THE NORMAL,, THINKING TO MYSELF THE HELL YOU DON’T!! HE MUST SEE WHAT I SEE AND GOT THE HELL OUT OF THERE.. IT FELT SOOOO HUMILIATING🙈🙈🙈 NOW I CAN FINALLY BREATH IF I CAN STOP MYSELF FROM CRYING

You have exactly what i have although i have sufffered for many year and seen countless uninterested Doctors , i have had some boils/ abcesses surgically removed or alternately have done it myself. I have finally after 11yrs found a doctor who believes we all may be slightly allergic to our own pro gesterone which increases during menstruation. This causes the boils.. Not much has been studied but chat with your GP who can tell you more…

I read you’r story it made me cry coz I am going true the same thing for 13 years but I found no cure for it. But last week I cryed to my daughter saying my whole body an abcess I wish I die. Coz I have no more energy to take the pain anymore. She was making me feel better saying I will get better but it made me laugh coz I know I will never get better. It’s a very bad nasty ugly thing that happens. But we got no choice about it.

Thank you very much for sharing this insert. I have gone forth and back getting all sorts of treatments since I was a teen, I even had STI treatment but the abscess would come back just before my period. I will certainly be consulting my doctor with this info. Thanx

Omg I really hope my comment post having a hard time can someone help plssss

Hi, I have just read your post and it’s been an eye opener for sure. Thank you for writing it 🙂 I am currently wondering if I may have Hidradenitis Suppurativa. I too have painful lumps before my period (usually around 10 or sometimes days before my period starts) They are a mixture of lumps, sometimes hard pea sized lumps that start of itchy and then swell until sometimes there is a head or they just start to go down and sometimes more flat but very painful and itchy. At times I may have two or one directly after the other. This has been going on for about 2/3 years. I finally went to the doctor the other day about them and she said it was a sebaceous cyst that was infected and gave me some flucloxacillin 500mg antibiotics for a week. She asked if I shaved I said I did and she kind of clung onto that being the problem which I really dont think is. But where I shave is no where near where the lumps appear. I’m not sure what to do now. I also suffer a lot with fatigue and pms symptoms, do you think this could be related? Thank you for your time 🙂

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Categories

%d bloggers like this: