I was inspired to write this blog after I realisaed that Hidrdenitis Suppurativa appears to be something sufferers are ashamed of.
My name is Lou, am just about to hit 30 years of age and as well as many other health issues (this is mentioned later) I have HIDRADENITIS SUPPURATIVA. Despite having had recurrent boils and abscesses since my early teens I was only diagnosed officially in December 2010.
HIDRADENITIS SUPPURATIVA, or HS, manifests itself in many ways. The ‘wounds’ can cause excruiating pain both physically and mentally. I am about to explain what HS is, I have had a little help from wikipedia here but have reworded in certain areas, if you are of a squeamish nature please look away now!
HS is a skin disease that mostly affects areas where there are apocrine sweat or sebaceous glands such as breasts; underarms; groin; inner thighs and buttocks. It is NOT contagious. You can get multiple skin complaints – abscesses; epidermoid cysts; sebaceous cysts; pilonidal sinuses or multilocalised infections. Repeated lesions can lead to scaring and possibly form sinus tracts (tunnels basically between abscesses). It is not likely to heal properly after having had a sinus tract diagnosed. Because of the nature of this disease many men and women can often go years without a formal diagnosis, whether it be through misdiagnosis or the patient being too embarrassed to speak to their General Practitioner.
There is no known cure for HS, merely treatments that can hopefully ease symptoms and pain for the sufferer. There is no iformation as to whether this disease can cause fatalities so I am led to believe that such incidents are highly unlikely (any medics please feel free to comment on this part).
There are a couple of staging systems for HS, Hurley’s being the most popular as the newest one is still being developed by dermatologists. There are 3 stages within Hurley’s system for HS.
Stage 1 is where the patient has solitary or multiple isolated abscess formation/s without sinus tracts or even scarring.
Stage 2 is where the patient has recurrent abscesses, single or multiple widely separated lesions, with sinus tract formation (frequent inflammation restricts movement and may require frequent operations such as incision and drainage).
Stage 3 is where the patient has diffuse or broad involvement accross a regional area with multiple or interconnected sinus tracts or abscesses. (For the record I am early stage 3 as of June 2011).
The causes of HS are described as controversial as many experts do not actually agree with each other about it!
HS is when one apocrine gland becomes blocked, sites ‘appear’ where the apocrine glands are located. Apocrine glands are located in the axilla; perianal and groin areas. It will almost always begin in puberty or after puberty suggesting there is some link to hormonal changes, particularly in females.
HS has links to Crohn’s Disease (inflammatory bowel disease); Hashimoto’s Thyroiditis (autoimmune disease involving the deteriation of the thyroid); Rhemotoid Arthritis and Squamous Cell Carcinoma (a histologically-distinct form of cancer). Excessive sweating; bacterial infections as well as some auto-immune conditions; androgen dysfunctions that cause cell structures to alter are all factors for HS.
Many sufferers have restricted movement during HS ‘flare ups’, such incidents can be a source of constant pain and distress. I actually recall, at about 20 years old, when I had 2 relatively small cysts on my groin which burst of their own accord (this is good as it does not mean they will necessary develop into abscesses). However people around were wondering why there was a rotting chicken odour around, I could not bring myself to say that it was me. HS can be embarrassing for that reason alone.
I have multiple health issues – Crohns Disease; Epilepsy; Depression and Anxiety and have just been told as well as the HS I have Fibromyalgia. I take a heck of a lot of medications and someone once said “You do not look sick!”. I would like to add that this is one of my pet peeves, do not assume if someone looks well they are necessarily well. Clothes can hide a multitude of sins!
The pain, as I know full well, caused by HS is often overwhelming. Sufferers may find themselves repeatedly having to take opiate painkillers such as morphine or codeine phosphate. My HS is predominantly in my groin and perianal areas. I cannot, and have not been for a long time, tolerate oral antibiotics – topical and IV are ok with me but is not always possible or it has become too late for antibiotics to even take hold of the infection. When you asked, on a scal of 1 – 10, how bad your pain is when you are in hospital I would have to say it is a 12 when I experience abscesses and/or cysts.
The Dermatologist I see has tried me on a variety of oral and topical medications that have not been helpful or I have not tolerated. One of the commonly used antiobiotic for HS is Lymecycline 500mg which has to be taken once a day. I was put on this briefly and I did try to stick with it but my gastro symptoms were too intense so I was advised to cease immediately. I am due to start more invasive therapies but I shall go into those at a later date. In the mean time, I am using Hibiscrub (surgical staff use this as soap prior to operations) as both soap and shower gel; I also use Dermacream as a moisturiser as well as many other little tubes of ointment to put on the affected sites. Taking a load of pills does not appeal to anybody but sadly for some it has become a way of life, myself included. I am facing more pills for Fibromyalgia in fact, again I shall discuss this with you all when the time is right. For some sufferers that are in Stage 3 removal of epocrine glands may be the only option left to resolve the issues caused by HS, but I must stress that this is not something that happens to all sufferers.
It is vitally important, whether you have HS or not, that you seek medical attention the minute you realise a cyst or abscess has developed irrespective of where it has developed. Do not be embarrassed, GPs tend to have seen every part of your body even if you have not! Do not attempt to burst it yourself because this will cause infection. Abscesses do not tend to go on their own when you have HS which leads to having a General Anesthetic for an incision and drainage operation. I am lucky that in the past 6 years I have only had 4 operations, 4 groin abscesses and 1 pilonial sinus (pilonial abscess form between one’s buttocks). In the other operations I have had during my 29 years I do tend to recover pretty quickly, I am often up and walking around within a matter of hours of having operations. However, in recent years I have discovered that I have the tendency to heal slower than others with these abscess sites. I have to have each wound packed with aquacel, a painful process that is for sure – I am sure many of those who have had aquacel packing will agree!
My two most recent incision and drainage operations were in May and June of this year. I am still having dressings for the May wound site (with a hopeful stopping this week) and as the June wound was only last week I am still having Aquacel packings/dressing changes on a daily basis (this will change to every other day from Monday hopefully).
The purpose of this blog is to dispell any embarrassment others may have about having HS, it is not because you are unhygienic, it is not because you are weird – it is merely because your apocrine glands do not like to behave themselves. I often wish I was a normal young woman, lady is not a word to describe me just ask those around me, but I actually think if I was normal (or whatever normal actually is) I would not be the person I am today. I consider myself a fighter when it comes to my health.
I am on benefits for health reasons, I do not know (as yet) an employer that would safely employ someone on morphine. I did start to receive Disability Living Allowance last year but despite all my health issues I ended up having to go to Tribunal. I am seeking, by the end of this year, a review of said DLA as my health conditions have worsened since the Tribunal plus I have been diagnosed with 2 new conditions at this stage.
I would welcome any comments, spiteful ones too but you may just get ignored or get some abuse back from me (I am joking here by the way). I can also be followed on the lovely Social Networking site twitter, my handle is @marmiteprincess. I do tweet about other stuff other than HS so do not be afraid to say hello.
Sorry this posting has been so long but it is the first one of many, the next one will hopefully be next week. Until then, keep smiling!