It all started with a few bumps on my inner thighs, vagina and the occasional butt sore when I was around 17 years old. At first, I really thought nothing about it. Weird things happen to our body as we get older, right?
Pregnancy and a terrible misdiagnosis
Now, here comes my first pregnancy with my son, he’s 11 now. However, when I found out I was pregnant, of course the sores concerned me a little bit more than usual. So I went ahead and had my doctor test me. He diagnosed me with herpes and I was devastated. I made a very hard choice of having a C-section with my son. It killed me, in every way an emotion could kill a woman inside . I felt like less of a woman. I never got to experience labour, or the joys of a natural birth which was something I wanted more than anything. Literally anything.
My Son is Born!
However, I had a healthy baby boy so I learned to live with it. Something wasn’t right though. The sores went down some and essentially just disappeared for a while. This was very confusing for me . I was young and embarrassed. The doctors I would go to just brushed me off. They said it could be dormant and I had nothing to worry about . Nothing to worry about? ‘Are you kidding me?’, I thought. ‘You diagnosed me with herpes, my whole world was shattered’.
I didn’t have a mom I could show the sores to or ask for help to try to get an understanding of what was going on with my body . Everything I learned about herpes was not what was going on in my body. Something was not right. I was lost, scared, embarrassed and losing myself completely. Oh, and let’s not talk about trying to go over all of this with my boyfriend at the time (now my wonderful husband).
Trying to move on
At this point, I started to try to forget what happened. It was gone and done with . Let’s try to move on . Then along came my second pregnancy . I was beyond ecstatic . Until my mind went right back to my first experience. How could I not be worried, or devastated, that again I would miss a natural childbirth.
I refused to do it again. I demanded to be tested again. To my surprise the doctor agreed very easily. I could not be more thankful to him at this point. He at least listened and gave in to the test. Though waiting for the results was horrible! He said this stuff takes time because there are different types of herpes. Days passed and he finally called me in for my results. I could not have been more nervous. He said I did NOT have vaginal herpes. Wow! What a relief. Now I was left wondering, what did they do to me! I delivered my first via C-section because of that diagnosis. I can’t turn back time, you know?
During my second pregnancy the sores started getting worse. I didn’t tell anyone. I had no one to talk to. I was scared of what they might say or even the disgusted look on their face. The doctor did allow me to attempt a vaginal birth (V-bac). Unfortunately, I ended up having an emergency C-section, with my daughter as well .
From there, I dealt with my sores quietly. My attempts to ignore them were wearing thin though and they were slowly progressing. They even started leaving scars and then coming right back, over and over in the same spot.
Looking for Answers
For a short period I blamed it on the water where we moved to. Blamed it on Staph, MRSA and even blamed it on myself . Asking myself ‘was I not washing enough? Am I dirty?’. How could that be, when I was showering daily and sometimes even more now. Just to clean all the sores and run piping hot water on them. Sometimes it’s as if I’m trying to cauterise the wound. It brought me relief though, believe it or not. At this point I would have given anything for a little relief .
Finally I had enough. I needed answers. So I went to doctor after doctor. I even ended up at a plastic surgeon. He could remove an abscess behind my head but he had nothing for my sores down there. So, off to another doctor I went.
This doctor was the start of change, she said she thought she knew what was going on , but had to send me to a dermatologist. She went ahead and referred me over to one close to me. I remember my appointment was early in the morning. I woke up ready to head out and I could feel my nerves eating away at my stomach . So many different thoughts were running through my head. Would they finally put a name to it? Would they finally get rid of it?! Finally help? Remember, at this point I’m about six years into dealing with all this.
When I arrived, I was in for a bit of a shock. Let me tell you what, I don’t know if it was because I was young or just ignorant, but I did not realise that I would be bearing it all, for several people to see. Including the male doctor. ‘Oh gosh’, I thought to myself, ‘Is this my fate?’ Their heads tilted sideways, they poked a few bumps and scars and I let out a few blood curtailing screams in response. They stared for a while and then finally said, “We’ll be right back.”
Diagnosis of HS
Words of the century. Ugh! For the longest 10-15 minutes of my life, I waited. When the doctor came back in he said, “You have a skin disease called hidradenitis suppurativa.” For two seconds, screams of excitement entered my head, as I finally had a name for it. Then he followed with, “There is no known cure and it’s very uncommon, so not a lot of information is known about it.”
There went the excitement. I lost it. My tears could have filled a pool. The doctors left to give me a minute to gather myself. I could not imagine going the rest of my life like this. I could not imagine never wearing jeans again and having sores everywhere that caused fatigue and pain constantly. Some days I couldn’t even walk. And, he said it will only continue to get worse and that I must prepare for that. Prepare!? How do you prepare for that? I couldn’t even comprehend those words. I had already gone through about six years of wondering what was going on, misdiagnosis and so much pain. I thought my life as I knew it had ended. There is no way I could prepare for this.
Living My Life
And then it started. The suggestions. “You can try antibiotics, or lose weight,” they said. “Oh and by the way, start looking up foods that cause inflammation and stop eating all of that. Night shades, dairy, gluten.” What is all that stuff? I had never heard of them in my life, except dairy, lol 🙂
Another six years later, I still go to doctors with my HS. I still try new things and now I am taking injections. Still no hope of a cure. The lumps and lesions have since spread to my boobs and they say next it will go to my armpits. They say I’m lucky, because I’m still in stage one. There’s worse stages! Eventually I will go into stage two, followed by stage three. Some days I just want to be without any clothes and sit in bed all day. But, I am a mom and I work a full time job, so I can’t do that. I push through everyday with a fake smile, to pretend I feel nothing. Feeling nothing would be better than this. I wish I could go numb.
16 years since those first symptoms in my teens, HS has taken my whole body. Numb is what we shoot for daily. I’ve given up on doctors and meds and I just try my best to live when I can.