My HS Story

My name is Melissa. I started this blog because I have suffered for a long time with a disease that I didn’t even know existed. I was misdiagnosed by multiple doctors for years. I want to help spread awareness of Hidradenitis Suppurativa (HS).

Certainly there are people who have been dealing with this and talking about it for much longer than I have been. I wouldn’t be doing this if it weren’t for a couple of them. I am just beginning my healing journey. However, the more voices we have talking about HS, the more likely we are to start catching it sooner for others.

Looking back, I can see the warning signs that my body was giving me. I couldn’t have known then what was happening. I’m telling my story in the hopes that someone reading will recognize these signs and symptoms and be able to do something about it earlier rather than later. I apologize for the length of this, but thoroughness is important.

My mom had always been a stay at home mom. When I was about ten, she started working and we started eating fast food a bit more. I developed an itchy red rash on the back of my neck. It seemed to be worse in summer. My mom took me to the doctor and he said it was probably lupus, but maybe not, and that it might go away someday. It was a terrible diagnosis and he should have run some tests. Alas, he did not and I was sent away with only the information that probably I have lupus and I could try putting a topical cream on it.

Needless to say, creams did not help and I just lived with it. I did find that if I drank more water, it relieved the itchiness somewhat. That made no logical sense to me, but I wasn’t going to ignore it. As time went on and my mom got busier and more stressed, we ate out more and had fewer healthy meals at home. By sixth grade, I was considerably overweight and had begun to have dandruff problems in addition to the “lupus” rash.

By this time, my entire family was overweight. My mom joined Weight Watchers and put my siblings and I on a modified form of it. We did not stop getting fast food. She just made sure that we counted the points. Nonetheless, I did have some measure of success on the “diet,” although that could also be attributed in part to puberty.

As a freshman, I weighed about 140 pounds, which is about 30 pounds more than I should’ve weighed at fourteen. By the time I was sixteen, I weighed 150 pounds, which was about fifteen pounds overweight. It seemed like things were finally getting on the right track. The overweight to ideal weight ratio was at least decreasing. I did still have the “lupus” rash and the dandruff. The doctor had, at some point, told me that the dandruff was psoriasis.

After I graduated high school, I started working nights at a video rental store. We were open until after midnight. Often, after work, my co-workers and I would go to one of the couple of restaurants that were open after midnight. So, the eating out increased. I gained more weight.

Worse than that, though, I woke up one morning in 2003 with what appeared to be a rather large bug bite in my right armpit. I assumed it was a spider bite and did nothing. I’ve had them before. However, this kept getting larger and more painful. When it reached the size of a golf ball, I went to the doctor. He looked at it and said it was an abscess and could be from an ingrown hair, but that it was probably a staph infection. He prescribed amoxicillin and told me that I probably wasn’t cleaning myself well enough. He said I needed to be sure to wash it daily with an anti-biotic soap.

I was ashamed. I didn’t bathe daily, rather I bathed every other day. However, if I did anything that got me sweaty or dirty I did bathe after that too and/or got a soapy rag to wash the area. I had never thought of myself as being dirty or unclean before. After this, I started to wonder if I had appeared that way to others and they were just too kind to say anything to me. Was I the smelly girl?

I began to wash obsessively for a while. Neither the washing nor the anti-biotic did anything to heal the abscess. One or both of those things actually seemed to be making it worse. I got another, smaller abscess in my groin area. These two abscesses persisted and grew increasingly painful. Especially when I accidentally pinched or pressed one. Eventually, the large abscess ruptured and drained. I had never experienced anything like this before and I was horrified. There was puss and blood everywhere and I didn’t think it would ever stop draining. And the smell. It was putrid. And then I was the smelly girl.

It took months to heal. After lots of trial and error, and many ruined shirts and bedsheets, I eventually developed a procedure for draining abscesses. I also went back to bathing every other day. It seemed to help the abscesses heal faster. I didn’t talk much about them to anyone. Besides my doctor, the only other person I had told said that I must have an STD. I assure you I did not. But her reaction showed me that I needed to stay silent about it, lest people make assumptions about me.

A couple of years later, after I was no longer at the video rental place and no longer hanging out with that crowd, I was eating out a lot less. I ate a lot of salads, especially when I did eat out. I began to lose some weight and some of my problems seemed to be clearing up. I still had the dandruff, but the “lupus” rash hadn’t come back. I also didn’t have anymore abscesses.

However, I didn’t really notice this. I mean, yes, I noticed that these things were absent. I didn’t associate their absence with any particular change that I had made.

In October 2005, I started working at Target and made some new friends. These friends liked to eat out all the time, so I also started eating out all the time. It’s not that they pressured me or anything. It’s just that I wanted to hang out with them and that’s what they were doing. At first, I was still ordering salads, but I got tired of that pretty quickly and began ordering the sugary and greasy things.

By 2007, I had gained all of the weight back and then some. The abscesses were also back, this time near my belly button, where my waistband hit. After that, I started to get more in both of my armpits.

After a while, I also began to get more in my groin and inner thighs. Then, under my breasts where my bra dug into me. I tried going back to salads. I tried Weight Watchers again. I did manage to lose some weight, but I found it difficult to stick to any diet. Between work and school, I was stressed all the time, and my schedule was anything but predictable.

By 2009, I was just big. The abscesses were still a part of my life. I never had another golf ball sized one, but a couple of them got close. My doctor still continued to recommend washing with anti-bacterial soap as the solution to my problem. I told him that didn’t work and he suggested that I just wear loose fitting clothes and lose some weight. So, I continued to live with it.

In 2012, I developed an abscess on my calf. It was a small one, but this was the first one I had in place that neither sweated nor rubbed things. By this time, I was eating out for almost every meal.

A couple of years later, I got a fairly large abscess on the back of my neck. It was causing me to sleep in weird positions and I ended up sore all over. I went to urgent care to have something done about it, since I couldn’t get in to see my doctor right away. The doctor at urgent care said it was an infected cyst caused by a staph infection. He thought it might be MRSA, which is an anti-biotic resistant strain of staphylococcus. If left untreated, it can cause death in severe cases. The doctor took a sample to do a culture test. He then lanced the abscess and prescribed an anti-biotic called doxycycline.

The doctor also recommended that I tell everyone I come in close contact with that I might have MRSA, so that they could take extra precautions. And, of course, a bandage on my neck was pretty obvious. Especially since I had to wear my hair up to get it to stay on. So, I told my co-workers that I might have MRSA. One was understanding. The other held her fingers in front of her face in the form of a cross and told me to get away from her. This was followed with a chuckle, as though to say that she was only joking. However, I’ve known her a long time and I know that she was absolutely serious. She’s germaphobic. After I told them, I decided not to tell anyone else until I knew for sure that I had it. I mean, I already had a complex at this point about being dirty and smelly, and now I’ve added diseased.

The results eventually came back negative for MRSA. I informed my co-workers of this, but the damage had already been done. The one that had told me to get away continued to treat me as though I were contagious. The lanced abscess did heal more quickly than the others had, but again, the anti-biotic did nothing. I continued to get abscesses.

In 2016, I had extreme knee pain. This ended up being plica syndrome, which is a completely unrelated thing, but it has to be mentioned because the “solutions” for this have affected my HS. So, I will digress for a moment. I saw my doctor about my knee pain. He did not examine me in any way. He simply told me to lose weight. He said my weight probably caused my problem and losing it would fix the problem. It felt to me like I had a broken bone. Even if the weight caused the break, losing it would not fix the break. So, I lost the doctor.

I scheduled an appointment with a new doctor, one who specializes in sports medicine. I figured if anyone knew about knee injuries, a sports medicine doctor would. He couldn’t see me for six months, but I scheduled it anyway because that’s just how long it takes around here. I took four Aleve per day to cope with the pain until it was basically doing nothing for me and I didn’t recognize myself anymore. So, I went to urgent care.

I saw the same doctor who had lanced my abscess. He said he thought it was a Baker’s cyst. He recommended that I continue to take four Aleve a day and referred me to an orthopedic surgeon. The orthopedic surgeon thought I had just pulled a hamstring, but by this time, my whole leg hurt, not just my knee. He recommended hamstring exercises and to continue to take four Aleve a day. He also took an x-ray and informed me that I have arthritis in my knee, though not enough to cause any pain yet.

All told, I suffered from plica syndrome for nine months before my new doctor and a different orthopedic surgeon finally diagnosed and fixed the problem. They were the sixth and seventh doctors, respectively, that I saw about this problem. As a result of this prolonged pain, I am now allergic to Aleve. Whenever I take it, I break out in hives and my lip swells up. I am given to understand that this could be due to the same thing that is causing my HS. Because I had been in pain for so long, I had no appetite. I ate only soup and salads. I drank only water and orange juice. I lost 30 pounds and had no abscesses during this time.

After I had recovered from this, I went back to fast food. I got more abscesses in my right armpit and my groin. I also got another one near my belly button. I scheduled an appointment with my new doctor. He said that he thought it was probably a staph infection and he put me on Bactrim for ten days, followed by tetracycline for thirty days. He said he’s had a lot of success clearing up infections with this “anti-biotic bath.” He said that if that didn’t work, he’d have to refer me to a specialist.

I was nine days into the Bactrim when I had an extreme allergic reaction to it. My entire arm turned red and swelled up. My manager sent me to urgent care and I was given a steroid injection and put on Z-Pak. I didn’t have any issues with the tetracycline. Neither the Bactrim nor the tetracycline stopped the abscesses.

By my graduation from college in May 2018, I was at my heaviest. I never had less than four abscesses on my body at any given time that year or the following year. Typically one in the armpit and the rest in the groin.

In September of 2019, I got an abscess on the small of my back. It was causing me to sleep in weird positions. I was tired and in pain all the time. I was to attend a conference out of state and I didn’t want to deal with a rupturing and draining abscess while there, so I went to urgent care to have it lanced.

I saw the same doctor that had lanced the one on my neck. He wouldn’t lance this one. He said it was too small to make it worthwhile. It didn’t feel small. He also said that it’s not a good idea to lance them unless they are unbearable because of the risk of infection. He said he could prescribe me doxycycline. I told him it doesn’t help. He said he knew that but that there wasn’t anything else he could do.

He and my primary care physician have access to each other’s records. This doctor told me that everything has been done for me that can be done. He said this was a condition that I was just going to have to live with for the rest of my life. I was upset by this because they don’t even really know what it is. To date, I had been told that it’s probably staph but isn’t MRSA. He told me then that it could just be some new MRSA-like strain and they have no idea whether or not this could kill me.

Now, I’m a problem solver. It’s what I do. It’s who I am. I’m completely fine with “I don’t know the answer.” I’m not okay with “there isn’t an answer.” I’m definitely not okay with “there isn’t an answer and it might kill you, but we don’t know for sure or when.” And, no surprise, but the doxycycline did nothing.

I became extremely depressed. Not to the point that I was suicidal, but it definitely had me questioning what I was doing with my life. I mean, I can work with “you have six months to live” or whatever. I can’t work with “we don’t know anything and we never will.” I know that sounds overly dramatic, but that’s what I was hearing. I went to see a counselor and explained the situation to him. He put things into perspective for me. He said that what I’m hearing is there are no answers, but what the doctor said is that he doesn’t have any answers.

The counselor recommended that I see someone in infectious diseases that might have seen something like this before. That’s when I remembered that my doctor had said he could refer me to a specialist. I scheduled an appointment with the doctor to get a referral.

I went back to work and I talked to my co-workers about it all. I have different co-workers now. One of them turned to me and said, “Oh, you probably have HS.” Record scratch. “I have what?” She said she couldn’t pronounce it but she’d look it up for me. When I saw the results for Hidradenitis Suppurativa, I read the descriptions and it sounded like what I have. She asked if I wanted to see the pictures and I said yes. She warned me that they’d be gross. I informed her that my life was gross. I saw the pictures and I knew. I have HS.

I kept my appointment with the nurse practitioner at my doctor’s office. She put in a referral to infectious disease and said they’d call me to set up an appointment. After three days, I still hadn’t heard from them, so I took matters into my own hands. I now had information and a direction, so I found a local dermatologist who specializes in HS and scheduled an appointment for December 31, 2019.

I also found a book online about it, so I ordered it and had it within two days. It’s called The Hidden Plague: A Field Guide for Surviving & Overcoming Hidradenitis Suppurativa. It is written by Tara Grant. You can find out more about this book, and Tara, on her blog at PrimalGirl.com.

This book was a game changer for me. Tara thoroughly explains how HS works, what causes it, and how you can put it into remission. It’s no wonder that anti-biotics aren’t working. HS is not bacterial; it’s auto-immune. Tara posits, based on quite a bit of research, that auto-immune diseases are caused by leaky gut syndrome. In addition to HS, this includes arthritis, psoriasis, and lupus, as well as many other things. I mention these three because they are all things I have been diagnosed with over the years.

Tara recommends following the auto-immune protocol to treat these things, which features a personalized paleo diet. I am now starting my elimination diet to discover what my trigger foods are and will implement the personalized paleo diet after that. I’m actually looking forward to it. After having read the affects that different foods have on the body, I’m finding I have less and less of a taste for them.

While I’ve started this blog to talk about HS and what I’m doing about it, I’ll probably also include information about other things that pop up along the way. 2019 was a year of self-discovery for me in so many ways and that’s ultimately what this blog is about.

If you take nothing else away from this, please do remember that you have to advocate for yourself:

• Talk about your symptoms.
• Shop around for doctors if the one you have can’t help you.
• Look for alternatives to medication.

2022 Update:

Realizing it has been a couple of years since I last did anything with this blog, I need to recap what has happened. I did see the dermatologist on December 31, 2019. He diagnosed me with HS and recommended that I start on Humira immediately. He did also say that a paleo diet would be a good idea for me. He recommended that I read Eat Dirt: Why Leaky Gut May Be the Root Cause of Your Health Problems and 5 Surprising Steps to Cure It by Dr. Josh Axe. I told him that I just wasn’t ready to commit to Humira yet because I wanted to try to fix this with my diet first.

He reluctantly agreed to this. He said I have the worst case of HS he’s ever seen and he didn’t think that diet alone would fix it. At this point, I had two large abscesses, one halfway between my right breast and armpit and one on my right arm near the armpit. These were so large and in such terrible locations that when they ruptured, the just separated and couldn’t heal up and there were now large portions of epidermis missing. It hurt to move.

I hesitate to include photographs because they are graphic, but I think it’s important. These are later photographs because I didn’t think to photograph them when it first happened, but the purplish/greyish skin is the skin that had grown back to that point.

My dermatologist had gone over all of the possible side effects and also said that Humira could affect any children I may have. Up to this point in my life, I wasn’t sure that I even ever wanted children, but I couldn’t have said definitively that I didn’t. And this was a huge decision for me to make. Take Humira and either not have children, or have children who wouldn’t be able to get live virus vaccines for their entire lives. I couldn’t make that decision in a 30-minute doctor’s visit. So we decided I would come back with a decision in a couple of weeks. When I came back, I told him I didn’t want to proceed with Humira. He told me he’d schedule a blood test for me for June, just in case I changed my mind.

As you all know, COVID-19 hit in March 2020. The library where I worked shut down completely for a bit and then went to working remotely for a while. This turned out to be a good thing for me, because by summer, my wrists hurt so bad that I really couldn’t do anything for myself anymore. It was all I could do to use my laptop to accomplish my work-from-home tasks. I couldn’t even raise my arms high enough to wash my own hair anymore. Besides which, the water hitting those open wounds hurt so bad. I started bathing myself with a soapy washcloth and a friend of mine washed my hair in the sink for me once a week.

I had learned that nightshades are a trigger for me, but even eliminating those, I still kept getting abscesses. I had another one on my neck and a particularly nasty one on my face at this point.

By July, I really thought I was going to die. I couldn’t open things on my own. I had no energy to cook anything unless I could microwave it. And raising my arms to reach the microwave was painful. Now, I’m a big person, but even my friends said it looked like I was waisting away. I had dropped down to 210 pounds in a relatively short amount of time. Some of that was because of paleo, but some of it was because, by this point, I was barely eating enough to stay alive. So, I scheduled an appointment with the dermatologist to be put on Humira.

I started Humira on August 4, 2020. The very next day, my wrist pain was gone. I spoke with the nurse practitioner about this at my follow-up appointment and she said that it’s because I have rheumatoid arthritis and the Humira took care of that right away. I just cried for a while. I finally felt like I could get my life back. My HR supervisor had been questioning me about when I could return to work and had even said I’d be fired if I didn’t return soon, so I thought I was going to lose my job because I couldn’t lift anything heavier than about five pounds. But now, I could go back.

A few weeks in on the Humira injections, I began losing my hair at an alarming rate. This is one of the “rare” side effects that the dermatologist had mentioned. I called and he told me to come in to see him. He put me on Clobetasol to try to stop the hair loss and grow it back. It worked, but it was slow.

A friend of mine told me that Humira is low-dose chemotherapy. Which I was never told by medical professionals and doesn’t show up in any of the reading materials about it. But, I learned that they don’t have to tell you that’s what it is as long as they tell you the possible side effects of taking it: hair loss and cancer. Which, when I think about it, I know that chemo causes hair loss and that if you take chemo when you don’t have cancer, it can cause cancer. However, in the state I was in at that time, I could not have put that together. Had I known, I might have preferred to lose my job and be in pain all the time. It’s just such a risk.

That being said, I have done well on Humira. My dermatologist said I’m one of his best successes. A couple of weeks ago, I accidentally had a bite of potato because I didn’t realize there was potato in what I was eating. I developed a small abscess on my face within four hours. My next Humira injection was the following day and it never ruptured. It started healing immediately and it’s gone now and left no scar. Other than that incident, I have been free from new abscesses since I started Humira. The large open wound on my arm has healed. The one by my breast is still healing and may require some skin removal.

I have to be on Humira until August 2022 for sure, at which point my dermatologist will reevaluate. My biggest issue with Humira is that it’s an immunosuppressant. So, I’m now officially immunocompromised. In the middle of a global pandemic. It has been horrific. I’m scared all the time. It also doesn’t help when people who are relatively close to me call me a sheep for wearing a mask and getting vaccinated. I’m doing these things because I have little to no natural resistance. There’s no guarantee that the vaccine will work for me, but a 1% chance is better than a 0% chance, so I’ll take it.

I ended up leaving my job at the library in October 2022 because I was told by HR, “We cannot accommodate your disability and you will need to use up all of your vacation and sick time until you feel comfortable to work around unmasked and potentially unvaccinated people.” Mind you, I had a doctor’s note on file with them stating that I cannot work in those conditions. I probably should have sued for disability discrimination, but I just wanted out. That was only one example of the variety of ways in which that environment was wrong for me.

I now work for an insurance brokerage, from home 90% of the time. We go in to the office every other week for one day. However, anyone who is not feeling well is encouraged to stay home and work from home. Recently, the CEO canceled our office day because there was spike in COVID cases. I can’t tell you how much of a relief it is to work for an employer who cares about the well-being of their employees.

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