My HS Battle – Kerry’s Hidradenitis Suppurativa Patient Story

It really is quite amazing how much confidence and belief we place in the hands of doctors.

It is due to that trust and belief that I have been without treatment for many, many years. It’s due to that trust and belief that I have become self-conscious and withdrawn from friends and family at a lot of times. It’s not until I’ve become older and have children of my own that I have started to become worried that these illnesses don’t seem to be going away, that they are in fact getting worse. It is only now, for the sake of my children, that I have been forced to question the doctor’s previous opinions and it is only now that I am starting to get the right answers.

Everything throughout my life that has ‘taken me off my feet’ I now know to be inflammatory related. I’ve known hormones play a part in the majority from self-assessment since my monthly cycles started twenty-five years ago.

When I was just eighteen months old I ended up admitted to hospital with breathing difficulties; inflammation of the lungs that they couldn’t find a reason for so it was treated as asthma.

It’s not asthma, I never suffered with any chest complaint again until my teens when the same thing happened again, spontaneous and instant shortness of breath to the point I felt suffocated, no wheezing or anything. It now happens around twice a year.

Frequency increased after the one and only time I’ve been put under a general anesthetic. The surgeon said he didn’t know why, but my chest reacted as if I was a heavy smoker in their mid 60’s. I was only twenty-eight!

Coming around from that operation was the most terrifying thing I went through: the coughing and choking, the vomiting and chest pain as I came round to wake was horrific. But I’ve never been back specifically to have my chest looked at because of my trust in the doctors. I never doubted it was anything but asthma until this happened at the age of twenty-eight during a clean-out of an HS swell in my groin. If it was something other than asthma they would know, right?

In between these years I developed what they said was IBS, Migraines, Spots, Joint pain: the list goes on. All around my hormone activity and all hormone and inflammatory induced. Every time I visited the GP I felt belittled because of my age and weight. My mum again, never questioned what they said because THEY WOULD KNOW.

I had small bumps on my scalp. They would hurt, feel like bruises and itch, they seeped, they bled, they scabbed up, repeatedly for many years. As I reached pubescence they faded, but I started to develop spots on my inner thighs, my upper arms and on my face with joint pain increasing massively around this time.

Joint pain is something I’ve always had. Lying awake most nights crying over my knees and being told it was normal – “it’s just growing pains” – I never noticed anyone else struggling the way I did. Not even my brother only a year younger. I only realise that in hindsight. Physical exercise was so painful, I made excuses week after week to avoid PE at school.

By this point it wasn’t just the joint pain, but the embarrassment of the spots. I was already self-conscious of myself because of these things. Then when my mum took me to the GP he stated the joint pain was because of my weight. My diagnosis basically was, “It’s because you’re fat!” And because I was “fat” I sweated more, causing the other issues. Instantly I never wanted to see a doctor again, I was so embarrassed.

The diagnosis of “just because you’re fat” to a ten-year-old was absolutely devastating to my confidence. I no longer allowed even photographs to be taken of myself. I felt that disgusting to other people and myself on the inside.

The physical therapy they requested I try, I did. But it did more damage than good. The pain keeping me awake at night was so bad that my parents eventually stopped forcing me to go. Within that time I developed corns and callous skin on my feet because my body had struggled with the PT.

I did my best to hide anything that was wrong with me from this point on.

It wasn’t long before I fell in the crowd of teens that were in a way “outcast” for one or more reasons, mostly behaviour. I came across cannabis. Within months the weight fell off and went the opposite direction. As a teenage girl that was a good thing! I could eat whatever I liked and never put weight on! It helped with the joint pain and severe stomach cramps, diarrhea and constipation I‘d been developing too.

Weight loss, however – although it helped the spots inside my thighs – also revealed cysts that I hadn’t felt before in some of the areas I’d suffered pain previously like my hands and my neck.

At the age of seventeen, I had a massive bowel issue. I needed help and after a biopsy it was said I had inflammation, no infection, and I was told IBS. I took that diagnosis and learned to live with my bowels, yet again, unknowingly trusting that if it was anything worse they would know!

Despite the use of cannabis, which helped with the joint pain, it still increased gradually. The corns on my feet continued to grow and they became an issue with the way I was walking.

Again, I attended the GP and from there I was referred to Podiatry to assess my feet. This is where it was discovered then I was hypermobile. Joint Hypermobility Syndrome is a condition that features joints that easily move beyond the normal range expected for that particular joint. Hypermobile joints tend to be inherited. Symptoms of Joint Hypermobility Syndrome include pain in the knees, fingers, hips and elbow. I was assessed with a score of 7/9. I was told it wasn’t anything to be concerned with and people go through life unaffected on many occasions. All my joint pain from here was put down to hypermobility and practically ignored.

Ever since then any joint or back pain has been labelled chronic pain due to hypermobility syndrome.

But I was being majorly affected, always told they couldn’t do anything, that exercise may help, they could manage pain with medication and that was it really. They suggested I have an operation to try and improve the structure of my foot, “maybe that would help with knee pain,” there was no mention of connective tissue!

Hypermobility seemed a totally unimportant illness. It wasn’t until after the surgery and the fact my foot hasn’t stayed together since, I have actually looked into what hypermobility actually is!

I have now only just recently put all the pieces together, in discussion with the doctors we are now in agreement that I am suffering from EDS HT. The term Joint Hypermobility Syndrome is also often used as an abbreviation for Ehlers Danlos Syndrome (Hypermobility Type).

The discussion is still ongoing and I’m under investigation for further related illnesses.

One diagnosis I do have and can be certain of is my HS. The spots on my inner thighs as an early teen faded with weight loss; however, the ones on my arms and face didn’t.

When I became sexually active at a much too young age of fourteen, within a couple of days an area of my butt cheek started to feel bruised when I sat.

Upon investigating I found two lumps developing, a little bit like boils, but much deeper and sore, along my knicker line. I assumed I’d been bitten by a spider maybe or some insect, even while possibly sitting on the loo. I didn’t have a clue. They came up quickly. The next day they ruptured, although stretchy and swells being able to grow big, my skin does split quite easily. The ruptures leaked continuously for over a week before finally drying up.

For years I had nothing else but the odd small boils so I didn’t think anything of it at the time. Ten years after that I still have the same spots appearing on my face in monthly intervals. Some have formed singular tunnels; some, when squeezed, do come out of more than one hole. The scarring I try to cover now with makeup. It makes me so self-conscious that when in conversation with people I cannot often make eye contact. When I do I see their eyes wander and focus on areas of my face that are sore, scabbed or scarred.

Although I know there isn’t much I can do, I’ve tried almost every suggestion and idea. I still feel embarrassed and judged, am made to feel dirty or at fault, especially by those who don’t know my story and that’s almost everyone! That’s why I hide.

Even close to home, I still get “well if you looked after yourself better”: those are the worst. Especially when they see me struggle living with this, but believe I’ve caused it, done it to myself. I hate HS and if I could get rid of it I would!!

HS again struck out of no-where, two huge flares either side on the top of the insides of my legs, felt like I had grown and then been kicked “in the balls” at the age of twenty-four, a couple of months into my first full pregnancy. It was at this point it became obvious that the majority of my health issues stemmed around hormone activity. Throughout my pregnancy I continued to get my monthly period bleeds. All of my various issues, from migraine to joint pain, cyst swells, vomiting, everything increased. Everything fell within a pattern around the cycles happening within my pregnancy including my HS.

During the week before my cycles the areas in my groin would feel tight, aching, slowly building in size, slowly becoming sore. During the cycle bleed itself would be when they first ruptured. They took nearly two weeks to finally stop draining then dry out just in time for the next cycle!

Throughout the pregnancy I attended A&E (accident & emergency) numerous times for I&D (Incision & Drainage), occasionally at the GP’s surgery if they had available appointments at flare times, wicked for draining at times.

At this point, still no one mentioned HS. It was always recurring abscesses on paper. Swabs were taken and nothing specific was found as in most cases. I was told many reasons: an ingrown hair, because I shaved; when I didn’t shave I was told the opposite. The weight of pregnancy was one, that I was unclean, that maybe it was the soap I used, the clothing I wore . . . numerous things were mentioned, but never HS.

My partner at the time was very supportive, tried to make light of things. But the fact I couldn’t bring myself to be intimate with these massive seeping areas in such a personal place had a massive effect on our relationship.

After the birth I continued to get the flares. I realized that it wasn’t a temporary pregnancy issue.

The doctors didn’t offer much in the form of help. Whenever I visited I was prescribed antibiotics and painkillers and wished all the best. I gradually stopped going and learned to cope at home, often breaking and draining them myself.

A year and half later the severity and frequency of flares did start to lessen. My personal relationship started to improve which, at the time, was great! Though I soon fell pregnant again and everything reactivated. The second pregnancy was much the same as the first, but without the monthly cycle bleeds. It took longer after the birth for my HS to go into remission.

Almost three years by this point, the lack of intimacy (not just physical, but emotional too) over the years had caused my relationship to break down and come to an end.

Once my HS went into remission 4 years after my second child, I found the confidence to start dating again.

After some time of being in a relationship I found out I was pregnant for a third time. This pregnancy is the only one that differed with regards to HS flares. Although I had started to get the flares again, they were not anywhere near as severe as the previous two pregnancies.

I believe this is partly due to the tunnel formation by this point; that the tunnels help with easier draining. I also believe that since I suffered with other inflammatory issues through the third pregnancy that my innate immune system was too busy elsewhere?

After the birth of my third child, my HS continued to flare on this smaller scale and it was then, only three years ago, at the GP, that the doctor asked me if I thought HS could be what I was suffering from. The way she described it was exact. She wrote the name Hidradenitis Suppurativa on paper for me and left me to research it to enable me to come to a decision on whether to take the recommended long-term antibiotics.

My groin HS however, has stayed low level. Flares are small now and don’t occur often unless it’s generally a bad monthly cycle. So again, I declined antibiotics because previously they didn’t make much difference. At times antibiotics made it worse as they wore off and they, too, messed with my cycle. Plus, I didn’t want to build up tolerance.

Since my diagnosis of HS my groin flares, like I say, haven’t been too bad. However, I cannot take contraceptives as they seem to aggravate all areas.

I have, in the last three years, had an increase with a few repeated facial abscesses. An inner ear one too. A cyst and swelling under one arm and various inflammatory related things which are getting worse and are currently being investigated.

My first child is now almost twelve and I have two failed relationships because of what HS has put me through emotionally and confidence-wise. So it is good to finally be getting some answers and to know it is not my fault!!

I know there is no cure for HS. But knowledge of HS has helped me greatly with confidence and the ability to finally turn around and say, “No actually it’s not because . . .” Knowledge has allowed me to fit the pieces together.

Big thanks to anyone reading this, and to everyone who helps to raise awareness. It makes such a big difference to people like myself who have felt alone, confused and unaware that maybe, in fact, the doctors don’t always get it right the first time. Don’t give up!

 

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