My hyperhidrosis story

           Hello!!!!! I am currently writing this post while on bed rest for a few days. I am A-okay and that is all part of my story for this blog post.

            I am so excited (like I’ve never been so happy and relieved in my entire life) to publish this post and share my story with as many people as possible. I know this is something very common and very debilitating and I’ve been waiting months to be able to post this.

            This is going to be a long post because it's basically recollecting on years of my life and I don't want to leave anything out, so enjoy. 

            For fifteen years, I’ve had severe hyperhidrosis. If you don’t know what that is, you can count your lucky blessings because that probably means you or anyone around you does not suffer from it. Hyperhidrosis literally translates to “excessive sweating.”

            I had palmoplantar hyperhidrosis, which means hands (palmar) and feet (plantar) and it started when I was eight years old. There's no known cause, I was basically told that I have overactive sweat glands and that's about all.

            According to le Google, hyperhidrosis affects only 2%-3% of the American population, BUT since I’m bored in bed, I did the math and that translates to as many as 9,000,000 people just in America! I’m not even included in that statistic because I’m Canadian. So, it’s a pretty common condition to suffer from.

            Anyways, to explain why I’m currently on bed rest. Yesterday (which would be Feb. 20) I had a surgery called an “Endoscopic Thoracic Sympathectomy” (click here to learn more).

            I basically had a portion of the ‘sympathetic nerve trunk’ in my body destroyed, so it no longer sends any signals to my brain to make my hands sweat. (And armpits which I didn’t need but is an added bonus.) 

            Right now, I have four incisions on my body, two on each side around my armpit and breast area. (So it’s safe to assume that every person in the OR saw my boobs, lol). I believe one incision on each side was for a camera, and the second one was for the utensil that severed the nerve. I’m extremely thankful that I was unconscious the entire time but a part of me wishes it was recorded so that I could see the action. 

            So that’s how I’ve been spending my reading week! I’ll be on bed rest until I have to go back to school on Monday and I can’t wear a bra or deodorant until then, or exercise for a couple weeks (which really is a great excuse to be lazy for a while).

            I realize that many people who read this post may not relate to it (and I sure hope you don’t, for your benefit) BUT I still think it’s worth a read because you may know someone who does and you’d like to share this with them (please do). Also, this is a cool conversation starter: “hey I know a girl who got the nerves to her sweats glands in her hands and armpits destroyed, isn’t that wild?”

            The journey to get from here to there has been very long, embarrassing, uncomfortable, and annoying. Every single day since it developed, I have had sweat on my hands and feet, some days it was just a thin, uncomfortable layer, and others it literally dripped down onto my clothes, the floor, and anything I was touching. 

            My first experience with hyperhidrosis was in fouth grade, when I was in class trying to colour in an art project. The memory is so vivid because it was the start of a really embarrassing, reoccurring experience. We were given an hour to colour in a drawing. The whole time I was having trouble holding onto my pencil crayon, it kept slipping out and I couldn’t get a good grip on my pencil or my sharpener. At the end of the hour, my teacher collected the drawings and every single person finished colouring, except for me. She announced to the entire class that I would have to take my drawing home to finish. I was humiliated and no one even knew that it was because of my sweaty hands. It was hard for me because I was so used to being top of my class in every other subject, but I couldn’t manage to colour in a parrot when everyone else finished.    

            For the past few months, I’ve been studying my hands and I came up with the conclusion that about 20% of my day, they were dry enough to touch someone or something and not be embarrassed or leave a sweat mark. As for the other 80% of my day, they were wet. So, not a very good statistic. 

            I decided to get this surgery in June 2018, which gave me a lot of time to think it over and had me in and out of doctor’s appointments and meetings with my surgeon in order to conclude that this was the best option for me. There are quite a few options for hyperhidrosis which do work for many people, and worked for me for a few years, but it got to the point that it was too severe and my only option was the permanent (and life changing) one.

            I was tired of being controlled by something that I, for lack of a better word, had no control over. I couldn’t think myself out of sweating, I couldn’t just wipe my hands on my pants to dry off, and there was nothing I could do to my body or hands that could stop it.

            June was when I decided to go back to school and pursue a career in journalism and writing. I realized that in order to get into a career, I would have to meet a lot of people and shake a lot of hands. My hyperhidrosis gave me an extreme fear of touching people. The best way I can describe it is as a cycle: my hands would be naturally sweaty--> I'd realize they’re sweaty and anticipate hand shaking and get anxious-->anxiety causes sweaty hands-->sweaty hands make shaking hands embarrassing-->anxiety over being embarrassed-->more sweat-->endless cycle.

            I didn’t want to be held back into starting my life over something that I had no control over. It wasn’t fair. I did all of the research, so by the time I went into my doctor’s office, I said: here’s what the surgery is called, here’s a clinic that has a surgeon who does it, all I need is your referral, please and thank you. She took one look at my hands, said “wow I’ve never seen someone so severe” (I just love being an extraordinary case), and told me she was going to help me change my life. My doctor didn’t know much about the surgery because it was very rare, and not many people take that route. My surgeon only performed a few hundred, but I was still confident in him. 

            I first talked to my doctor about my sweaty hands when I was about 10 and she gave me Drysol (if you’ve ever had sweating issues, you’ll be very good friends with this product). I used it for a few years, mostly in the summer when I sweat a lot more, and it worked but it wasn’t great. Eventually my hands got used to it and it no longer worked. 

            During the end of elementary school and all through high school, I had axillary hyperhidrosis (in the armpits!) as well as my feet and hands. I remember using Drysol for a few nights before prom because I stupidly got a dress that would show every mark, and the night before I lay in bed in excruciating pain because yes the Drysol worked, but it worked so well that it completely shrivelled up and dried out my sweat glands so they were all swollen and red. Hyperhidrosis is really a lose-lose situation. 

            To my luck, my axillary hyperhidrosis went away on its own when I started university. For the last few years, I have had almost no underarm sweating, which sounds great, but not when it just got redirected to my hands and feet. I’m pretty sure underarm hyperhidrosis is the most common, even more than hands and feet, so if you suffer from that, please know that I completely sympathize with you, but you have a lot of options to help keep it under control or stop it altogether. 

            The fact that I’ve had this condition for so long means that every year, like clockwork, when the weather warms up and most girls were on the internet looking for cute summer dresses, I was in my room googling “hyperhidrosis remedies” looking for something to bring me some relief. 

            When I was 21, I asked my doctor to refer to me to a dermatologist who specialized in sweating. I sat in his office, showed him my soaking wet hands, he touched them and went “wow, that’s a lot” and still only prescribed me another over the counter antiperspirant which my hands literally laughed at. I was annoyed because I told him Drysol did nothing and he still gave me something exactly like it. He also was completely against the ETS surgery because it’s such a severe option. I never went for a follow up and never saw him again. 

            The reason I finally went to a dermatologist was because at that time in my life, I was learning how to drive. I’ve never told anyone this story, besides my parents, because I was so embarrassed. As you will well know, driving requires complete use of your hands. Well mine were wet, all the time. Not only did I have hyperhidrosis but I also had uh…… nervousness about driving! 

            My first driving instructor was a bitter old man, and from the moment I met him, he mocked me about my sweaty hands. I started my lessons on a hot July day (really, that was dumb on my part) so naturally I was extremely sweaty. I also stayed with this guy for about a year, and every single lesson we had, he made fun of me. He would say things like “ugh that’s disgusting” or “ew you’re sweating all over my wheel” and take a wet wipe and clean it as I drove. It was so discouraging and embarrassing and it set me back in my driving for a lot longer than necessary. (I’m literally tearing up as I write this because I feel bad for myself for having to go through that.) (Also just a disclaimer: this post is not to get sympathy and aww boo-hoo for you from everyone, it’s just a way to share my story and hopefully resonate with some people suffering too.)

            So I went to the “professional sweat doctor”, he completely let me down, and I was back to square one. I could not advance in my driving journey without a solution, and I was so discouraged and upset. One day I finally got the courage, called my driving school, asked for a new instructor and within days I was sitting in his car. My solution: wearing gloves!! Duh! My parents recommend driving gloves, like those leather ones that racecar drivers use. But I just got a pair of thin, winter gloves, got into his car and said, “Hi, I’m Stefanie. I have sweaty hands so I’m going to wear gloves to every lesson so that my hands don’t distract me.” He was such a nice man, he said that’s okay and showed me his hands and said “I sweat too!” (He had a tiny sprinkle of wetness, but I smiled and gave him my sympathy.) 

            So, if you’re someone who’s been set back from driving because of your sweaty hands, take note from my experience because it worked. I took my driving test on a hot, October day, wore my silly gloves, and still passed with flying colours. 

            Other things I’ve missed out on: I had to give up gymnastics when I was about 10 because I was embarrassed by the fact that I left hand prints all over the mats and couldn’t support my body because my hands were too sweaty. I also could never ever hold hands with people, and high fives were a big no. Every time a boyfriend went to hold my hand, within one minute it would start profusely sweating and sometimes they’d say “sorry, I’m getting sweaty” and I’d internally laugh because he thought it was him when it was actually me!! But it only took a few more tries for me to admit my condition and kind of say…. “take it or leave it, buddy”. 

            My first and last manicure was in high school, when the lady slathered my hand in cream (big no-no if you have hyperhidrosis) and then went “oh… are you….warm?” when my hands were sweating all over hers. Whenever my friends would invite me for manicures, I’d say “oh I don’t like them, I find having someone hold my hand is awkward.” Lies! I just didn’t want to face that embarrassment again.

            As I previously said, I’ve spent years and years googling hyperhidrosis remedies, stories, and experiences. I was never able to find anyone who openly shared their experience, until I realized YouTube is full of videos. But, there’s no text or blog posts about it, so that’s why I’m so eager and excited to share this. I think it will be nice for those people who suffer in silence, just like I did, to find someone who knows exactly what they’re going through. 

            Something I find pretty funny is the fact that almost all of the YouTube videos of people with hyperhidrosis and those who have had the ETS surgery are all young, pretty girls. It’s like God said, “oh no, I put in too much pretty, I must add in something negative so they don’t become too powerful." Those videos really helped me feel a lot less alone in my struggle. 

            Another really interesting story I found was of an American surgeon who performed ETS surgeries. He said he does both ETS and other surgeries for cancer. What blew my mind was the fact that he said his patients who had ETS surgeries were ten times more grateful and emotional for his work than the people he performed life saving cancer removal surgeries on!! That really speaks volumes about how awful this condition is. 

            By now, I think the most obvious theme of my journey with hyperhidrosis is that it really had a strong hold over my life, as well as the fact that this was one of my best kept secrets. I only started opening up to my friends about it when I had my surgery booked. I didn’t tell everyone because I didn’t exactly want to be the poster child for sweaty hands. I think that’s fair. But almost everyone was very supportive. When you suffer for so long and in silence, it gets to you emotionally and mentally. I spent many times sobbing in my doctor’s office because I couldn’t even express how much it affected my anxiety and mental health. Side note: every time I talked on my blog about how awful my anxiety can be, I was also hiding the fact that I suffered from hyperhidrosis which caused a lot of my anxious feelings. 

            I’m extremely relieved that I can get this off my chest but also that I don’t have to suffer anymore! I know in my last post, I said I won’t use the word “suffer”, but I think in regards to my hyperhidrosis, it’s the most fitting word. I didn’t really “battle” it because I was always on the losing side. I suffered because I missed out on opportunities to meet new people, I spent a lot of time isolated in my room where no one could see or touch my sweaty hands, and I generally was uncomfortable and embarrassed a lot of the time. This was not just “I hate my nose so I’m getting surgery to fix it,” it’s really a matter of making my life easier and less uncomfortable and I am so glad I did it. 

            Before my surgery, I used to worry about how I would live the rest of my life with this condition. I couldn’t write on paper because it would get drenched with sweat. Two weeks before my surgery, I had to write a survey for school using a pencil and paper, and by the time I was done, it looked like I had taken my paper and stood in the drizzling rain. I also used to worry about how I would shake so many hands on my wedding day, or hold my husband’s hand at the alter, and yes that’s a very far fetched idea but it’s something that bothered me often. I also used to worry about how I would touch my own child with my wet hands, or if my child would say “ew mommy why are your hands so wet?” in front of a room of people. Little things like this are thoughts that I faced for years on end when I felt like I had no escape. 

            For some people, seeing my “old hands” (lol) is probably absolutely mind blowing. I know most people have never had more than a slight layer of sweat when they’re nervous but I woke up everyday and went through almost my entire day with slightly wet to drenched hands and feet. The amount of sweat I had was completely unpredictable. 

            I also developed the tendency to wash my hands a lot. Some people who saw me scrubbing my hands would make weird faces or comments and assume I'm a germaphobe (eh, I kind of am). But when your hands are constantly wet, they feel very dirty. So I got into the habit of washing them more often than most people do. I also would run my hands under cold water in the summer as a way to cool my body temperature and temporarily stop the sweating. (Didn't work).

            Here are two pictures showing the before and after of my hands. The first picture is from a few months ago: I was sitting in my room, relaxing and watching TV, and all of a sudden felt something tickling my arm. It was sweat dripping off my hands! Pretty normal for me, especially when I was nervous or very hot. The second picture was taken right after I wrote this blog post. Feeling a little anxious but I'm bone dry!!

            Before- gross, I know                                             After- is this what a normal hand is supposed to look like!?

       
    By now, I hope it’s obvious that for my physical and emotional wellbeing, this surgery was completely necessary. 

            The day of the surgery was long and exhausting, with a lot of waiting and anticipation. I kept looking at my sweaty hands and tearing up because I couldn’t believe that was the last time I’d have to see that. 

            I was put under anesthesia and the procedure was only half an hour. I don’t remember anything beyond my anesthesiologist telling me he was giving me “a good dose of wine” in my IV and then put oxygen over my nose. When I woke up, I had an extremely dry throat because I had a breathing tube during the surgery. 

            I knew where I was when I woke up and I looked down at my hands and they were bone dry. I rubbed my hand and it was completely dry, then I held it in a clenched fist and it wasn’t sweating. If I wasn’t so drowsy, I would have cried but I had no energy to. 

            Much to my surprise, the pain is actually internal in my chest and back, which are the areas that the actual surgical incisions took place. But it’s been pretty manageable and is completely worth a life time of sweat free hands. The healing process is only about a week or two and I have antibiotics and pain killers. 

            There are quite a few side effects. The biggest one is called “compensatory sweating” which means that the sweat that would occur on my hands will be redirected somewhere else. Usually the back or stomach. I was asked repeatedly if I was okay with this, and I said yes! Anywhere other than my hands is fine by me. 

            I also had a lot of people tell me that they have hyperhidrosis on other parts of their body when I shared my story. They’d tell me they sweat a lot from their back, or their neck, or their forehead, and while I can totally sympathize and I feel that pain, I also had to say: "yes but….. do you shake hands with your back? Do people offer high fives to your neck?" I totally get that excessive sweating from any part of your body is uncomfortable and embarrassing but the fact that your entire life depends on the constant use of your hands was just too unbearable for me to suffer from anymore. 

            The stories I have of being embarrassed by someone noticing (or worse, touching) my sweaty hands are endless, and I’ve spent so much of my life sitting in silence ruminating over how embarrassed and ashamed I was. It just feels weird that there are people in the world who I’ll never see again but have this permanent thought of me as “the girl with the toes that were dripping with sweat while she was getting a pedicure that it looked like she was having an allergic reaction to the body cream.”

            I should probably be embarrassed by the fact that I’m openly admitting that my hands and feet dripped with sweat, often in front of other people, but hey that’s the old me now!! The night I got home, I slathered my hands with greasy lotion and it immediately sunk in and dried, whereas before hand lotion would sit on my palms and ball up with it was mixed with my sweat. I’m absolutely mind blown. 

            Finally, to end this novel of a post, I want to offer my own advice about how to deal with palmoplantar hyperhidrosis (or any kind). 

            There are many options to treat hyperhidrosis which can work if you only had a mild case. Drysol and tons of other extra strength antiperspirants can do the trick, but for me it wasn’t worth applying it every night for the rest of my life in order to have some relief. There’s also Botox, which includes about 40 needles in each hand, and costs $700 per session which has to be done twice a year and is not permanent, and is not guaranteed to work. I never tried that route. Botox seems to work well on armpits, though. It’s covered by the Ontario government (even though hands and feet aren’t, ugh) and has pretty good success rates. Still painful, though. There’s also pills you can take which basically dry you up from the inside and I definitely did not think constant dry mouth and dizziness was worth dry hands.

            There is also something called an “iontophoresis machine” which is two little tubs filled with an inch of water and electric currents running through it. I was offered this by the dermatologist I went to. You have to go to sessions multiple times a week which for me were half an hour away, but it was covered by the government. The machine is also available to buy for about $800, which I was considering but it’s still not a permanent solution. Years ago, I bought equipment off of Amazon to make my own machine, because I was so desperate in the middle of a sweaty summer. It only cost me $40 but it did not work at all and the voltage from the battery pack I used would sting my hands as I stood there for 10 minutes everyday. 

            Another device is called Miradry, which is a permanent and non surgical solution for hyperhidrosis only on the armpits. I would have loved to take advantage of this but it’s not an option for hands and feet. 

            So that’s where ETS surgery comes in. It’s permanent and extreme and is only for the most desperate of people. I had no issues getting a referral from my doctor, and my surgeon was more than willing to perform the procedure on me. Better yet, the Ontario government recognizes the surgery as non-cosmetic so it was completely free of charge. (Although, I would have paid any amount of money to fix my condition). This was a decision that took me years and years to decide on. I first discovered it in university during one of my annual hyperhidrosis remedies search on google but I thought it was too drastic at the time. I still think it was a big stretch but when I suffered for so long, it was completely worth it.

            My advice to you or anyone who is suffering from any type of hyperhidrosis: talk to your doctor and ask for advice or help. Drysol is the best first step to take and it really did work until my body became accustomed to it. I would hope your condition isn’t as severe as mine so all of the treatments up to surgery are options you can take. 

            So far, my life is completely changed but I’ll definitely be the real judge once the summer hits. I can’t believe I needlessly suffered for so long but I am so proud of myself for being brave enough to take this risk and help myself in a way that I desperately needed.

            
            Hopefully this post was useful for those who have hyperhidrosis issues. If not, then consider yourself more educated about the world and the lifestyles of the extra sweaty. 

            Thank you for reading about my story, feel free to share it with anyone who needs to hear it and I wish you a life full of sweat free hands because boy this is a cool feeling. (Pun intended).