Fleur
The first boil I had was when I was 7 months pregnant with my first child at the age of 22 in my groin area, it was big and painful. I had no idea what it was but thought it was a onetime thing. I went to the clinic and they cut it open (no need to tell you how painful that was). From that first one in my groin area it started spreading to my arm pits, luckily not as big as the first one BUT I was having multiple ones at the same time in both areas.
I went to skin specialists and was given multiple treatments, which all worked while I was taking them and was HS free BUT within a week of stopping the medication it got worse and also spread to under my breasts, once again in multiple areas at the same time.
I was also told that this was a hormonal change and if I get pregnant again it might stop. I did get pregnant again and have four kids and nothing changed ! I needed some operations and the stiches always got infected no matter what type of stiches they used and the pain was excruciating to say the least. Having said that, being constantly in pain and having to carry on with my daily routine lead to other mental issues of anger and depression. Besides the pain I was in, looking at my body in the mirror with all the scars and the current boils made me reach rock bottom. I live on a small island surrounded by sea and sun, half the year, the population spends their time at the beach, with all the scars on my body, from under my arms down to half my thigh meant that there was no way I was going in public in a swimming suit. So yeah, I now even hate summer
Through all this I went from a size 12 to a size 16, I have not changed my eating habits as I am a very particular eater but the weight kept coming up, not sure if I can blame all the medication or not !
I have seen multiple doctors and read multiple articles and TV programs about HS sufferers and I all have the one thing in common which is that there is no cure (devastating).
Ever since I started gaining weight, doctors started blaming my weight even though I told them that I suffered HS even when I was a size 12, I am also a smoker and they also blame it on the fact that I smoke. I feel that doctors only find a way to blame the problem rather than try to understand their patient !!
To prove that weight or smoking do not affect HS, I had moved to the UK for 4 years, I arrived in the UK suffering from HS and within the first year I had seen a big difference in the flare ups and even the size of the boils. Within the 2nd year I was clear from HS without any type of medication. When I moved back to my country (Malta) it started all over again within the first month. Once again, I did not change my eating habits and I still smoked !!
I have been back to Malta for the past 8 years, the only difference between Malta and UK is the particles in the air, I lived in the country side in the UK surrounded by trees and cleaner air. I mentioned this to the doctors and they had no reply to it and still blamed my weight and smoking habits.
I was given Rifampin together with Delacin for a period of six months which once again worked well and even lasted for a whole year after stopping the medication. I was so happy and even my moods changed, living a life pain free was something I had forgotten and then it started all over again and this time I was even angrier than before, it also spread to my belly and my back besides, my bum, the groin, armpits and under my breasts !!!
Every time I started a new medication, I had to go through a period of side effects and believe me I ticked all the boxes of each side effect of each medication. So, I got to a point where I had to choose between going back on medication and rest from the pain for a while but go through all the side effects OR stick to the daily pain and ALSO keeping in mind that once I stop the medication, the situation will get worse ! A very hard decision to make.
I stopped all medication for a whole year and stuck to the daily pain in multiple areas. I had to put padding on the boils to lessen the pain, there were days when I could not even move my arms, could not sit down properly, could not walk properly and disturbed sleep due to the pain.
My life was just a total mess in all aspects, getting angrier with each boil that came out (I have been on anti-depressants for the past 6 years). I also started to self-medicate and cut open the boils to drain them and reduce the pain, I preferred to feel excruciating pain for a few minutes than days of pain.
I had to go back on medication to get some relief and was given Tetralysal 300mg for 3 months twice a day. I started them in December 2019 till February 2020, perfect, no HS for 3 months ........ within a week of stopping them, I was back to square one. So, going back all these years and different medication, it all turned down to either moving back to UK (which I cannot for too many reasons) or keep taking the medication !!! I had no medication at all during March and suffering from all the benefits of HS, so in April I started taking the Tetralysal again but just 1 every morning (I did not go to the doctor again, it was my decision) I have been clear from HS for the past 6 months and intend to do so for as long as I can. Yes, I am gaining weight even though I am exercising, but I am now 46 years of age and know that weight loss is slower now and hope that at least I will not gain more weight ( I am currently 80 kilos) I was always between 65 kgs and max of 70 kgs for most of my life and I gained 10 kilos within a period of 6 months and cannot go back to my normal weight !
I am sharing my story to hopefully find a doctor that can look into my experience with HS and maybe find something in common with other sufferers.
If I could avoid some pain for someone else, I would feel that some of my pain was worth something !
My advice to both female and male sufferers, keep fighting and stay strong ! This disease is horrible in every way, being that it is not known unless you are a sufferer, people think it is contagious and lack of Hygiene Besides the excruciating pain, you cannot even take days off work as sick leave because it is constant (and we prefer not to share it with others BUT hide it). UNLESS you are a sufferer, I do believe that nobody can really understand our situation, physically and mentally !!!
Attachment 1 is my groin area (taken today being HS free)
Attachment 2 is my armpits (taken today being HS free)
Attachment 3 is only 4 years ago before I was given Rifampicin (had been suffering from HS for 20 years)
Attachment 4 is me now after putting weight on (but currently HS free) WEIGHT GAIN OR SMOKING NEVER CHANGED ANYTHING
As for smoking, I smoke less than a packet a day (unless we go out (which is not often) as I smoke less at home) I started smoking when I was 18 years of age and HS started when I was 22 years of age. Always with the same habits and smoking routines.
Whilst thanking you for your time to read my story, I do hope to hear from you and get some feedback.
Kindest Regards,
Fleur Camilleri
Malta