Some Personal Stuff

STATEMENT: As part of the psychological treatment for Hidradenitis Supperativa {HS] it has been suggested that I "come out" so to speak and show and inform my friends, relatives and employer the extent of what I live with on a daily basis. This is not done to shock or gain sympathy but to show the facts and educate those around me as to the nature of my condition to gain understanding.

If I do not turn up for work or miss a social occasion it is not because I am lazy or purposely unreliable, IT IS BECAUSE I AM IN PAIN AND CANNOT WALK OR SIT WITHOUT DISCOMFORT. Sometimes I cannot wear clothing as it rubs on the affected areas.

There is very rarely a whole week without pain these days.

I am constantly bleeding or weeping foul smelling fluid

The pain killers make me sick and or dizzy
This is for life - THERE IS NO KNOWN CURE

The only answer is surgical removal, which will still not cure the condition

Drug companies do NOT invest in a cure or specific treatments as it would not be profitable to do so. Also most GPs are ignorant of the condition, I had to educate my own GP with the facts below, it was difficult and time consuming, GPs tend to dismiss patients knowledge as unreliable information HA!
Relationships with friends and family become strained as you become a slave to the suppurating lesions that now infest your body, making you a prisoner within that body.

Intimate relationships with partner's become almost impossible, for weeks or month's you are unable to have sexual relation's and then you are free for a couple of days, but your partner is not in the mood or too tired. For whatever reason this all too quickly becomes a vicious circle.

Hidradenitis Suppurativa can cause it's sufferer severe pain and discomfort, as if this was not enough there is also the emotional roller coaster which accompanies the disease.

Hidradenitis Suppurativa can dramatically change the life of the person it affects and those that are closest to them. The things you used to take for granted become difficult even walking becomes associated with severe pain. Your life becomes centered around your HS, what you wear, where you go and when you go.

Relationships with friends and family become strained as you become a slave to the suppurating lesions that now infest your body, making you a prisoner within that body.

Intimate relationships with partner's become almost impossible, for weeks or month's you are unable to have sexual relation's and then you are free for a couple of days, but your partner is not in the mood or too tired. For whatever reason this all too quickly becomes a vicious circle.

Some HS sufferers find they are no longer able to work which only increases the feeling of isolation. You are increasingly aware of the odour which emanates from the wounds, even almost puritan hygiene regimes cannot rid you of the feeling that people are able to smell the poison which comes from your body. This leads to self isolation, your confidence is totally undermined, you loose interest in your appearance, daily routine and loved one's. You do not wish to see anybody or go anywhere, this quickly becomes a downward spiral.
Stage 1. Solitary or multiple abscess in isolated incidents, no scarring or sinus tract involvement. The possibility of remission for long periods is high, at this stage HS is not usually diagnosed, this being mainly due to the rarity of the disease it is the last thing a doctor assumes. Mainly treated by lancing or 'drawing' with magnesium sulphate paste and the use of antibiotic's.

Stage 2. Multiple or Single abscess in multiple regions, spreading throughout the pubic area's with possible sinus tract formation occurring. Long period's of remission are rare, it is this stage where most diagnosis are made. At this stage doctor's usually refer patients to a surgeon for total excision of the infected area. Surgery in the majority of cases gives only temporary relief.

Stage 3. Multiple abscess throughout the pubic area's. Widely spread scarring from previous abscess involvement, the full formation of sinus tract's giving rise to constantly weeping from wounds. Complete cure at this stage is extremely unlikely, surgery will be suggested. Some relief would be given from this, however the extent of surgery required will affect the mobility of the sufferer.