I have suffered from Hidradenitis Suppurativa since 2006.
What is it?
According to the Mayo Clinic:
Hidradenitis suppurativa (hi-drad-uh-NIE-tis sup-yoo-ruh-TIE-vuh) is rare, long-term skin condition that features small, painful lumps under the skin. They typically develop where the skin rubs together, such as the armpits, the groin, between the buttocks and under the breasts. The lumps may break open and smell or cause tunnels under the skin.
You can read more about it here.
It’s very painful, can be messy, but isn’t contagious in any way. Although some boils (flares) can become infected, it’s not an infection. Antibiotics don’t work unless it’s infected. I know, I’ve tried them several times and my HS laughed at them. All the pills did was tear up my stomach and give me a yeast infection.
I’ve suffered from allergies my whole life. My mother was on some kind of hormone for ovarian cysts and endometriosis until she found she was pregnant with me about 5 months along. Thankfully, it seemed I was alright at birth.
I was colicky as a baby and my mother said I would scream for hours.
As a toddler, I would wake up with my eyes crusted shut. I would say, “Mommy, poky eyes!” and she’d un-poke them with a warm wash cloth.
At age 5, I had to have surgery to remove my tonsils, adenoids, and have tubes in my ears. I remember not wanting anything to do with the huge tray of ice cream and jello. I just wanted to stop hurting. I remember my mom said something about no more cats or feathered pillows. I was allergic.
I’m not sure what age my ear issues started but, from around age 10- 17, I’d get crusty, sticky, weepy stuff behind my ear. My mom sometimes gave me a white cream to put behind them. At this point, my mom was an RN at the veteran’s hospital. RN or LPN, I can’t recall. She retired as a Nurse Practitioner at a private office when I was in my mid 20s. It was nice, free medical advice!
Moving on to age 12: I had painful periods, heavy bleeding, with loose stools. Sometimes the pain would be so bad that I’d throw up. I’m 42 now and still have this, just add irregular and huge clots to the picture. They used to come every 28 days and now come every 17-21 days.
I never had acne as a teen. It wasn’t until my early 20s that I started to get a clear, itchy, pimple like thing in my chin, upper lip, or forehead that would leak clear, sticky fluid, and turn into something like what used to be behind my ear. Throw in a few pimples around that time if the month and that was me. I had 3 kids and was told it was rosacea even though no treatments for it worked.
In 2006, I was almost 31. My father died unexpectedly at age 56 of lung cancer. He was also a heavy drinker. I never got to say goodbye and I went through a period of deep depression. We were also remodeling our home and I ate out a lot with my family because the kitchen was torn apart. My meals consisted of a lot of shellfish and Chinese food. It wasn’t long before I started waking up at night with, what I thought were, heart palpitations and bad acid reflux. This caused panic attacks. My heart would race and I felt like my body was having a surge of adrenaline. My chest also hurt. I spent 4-5 months in and out of the hospital ER and doctor’s office before an endoscopy and esophagus/stomach biopsy showed eosinophilic esophagitis. The Gastrologist came in the room and asked me if I was ingesting something I’m allergic to. I explained I had no known food allergies. My doctor tested me for food allergies. Shellfish was off the table. I was given an EpiPen, Flonase to swallow twice a day, and Singulair (allergy/anti-inflammatory pills). I was fine after this, but was warned I could become allergic to any food at any time.
Later, the same year, I noticed a small bump under my left armpit that I assumed was just an ingrown hair. It formed into a boil that ran a red streak down towards my breast. I was about to go to the doctor before it popped and went away days later. I also would get them on my butt cheeks that I thought was just an ingrown hair from my underwear or feminine pad rubbing too much. They would only come around my period. I never saw a doctor for this.
In 2010, I became a nurse aid and my boil came back in my left armpit. Buy 2013 it was there to stay and started tunneling. I went to the ER thinking it was MRSA. A swab of the boil showed no infection or MRSA, just some kind of unidentifiable bacteria. I was given Clyndomicin that did nothing to make this go away. I was still never told what it was.
In 2015, I lived in Kentucky and got Medicaid. I saw a doctor who looked at my arm and said I had stage 3 HS. He said it was my sweat glands malfunctioning. He made out like it was no big deal and scheduled surgery. I soon moved back to Missouri to be near family and never had that done. I lost insurance too.
In 2016 I got married. I also got my first groin boil. It’s made a home now that’s tunneled the length if my right groin. It and my arm never stop draining. I was freaked! I looked up more on HS and how to treat this at home. I found a whole group of people on MANY sites that stressed to stop eating nightshades. This included. Potatoes, tomatoes, peppers (not black pepper), pepper spices, eggplant (yuck anyway), and TOBACCO! I cut it out for a while, but never got serious with it. By this time, my HS , arthritis, and lower back scoliosis made it impossible to work. I could no longer lift, stand or sit for long periods and lost many jobs because of this. My husband also needed me at home with his TBI and seizures.
April of 2017, I got a boil on my left leg that grew the size of an orange. I got a fever and chills. I had to have the ER lance, drain, and pack that. I was left to use my nursing skills at home and repack it every other day until it healed. I was again given Clyndomicin.
July of 2017, my husband and I moved to Puerto Rico. We were homeless for a while in a shelter. My boils got so bad that I was becoming suicidal and had to be hospitalized for a week. Not one doctor cared about my HS or even tried to treat it. All they cared about was shoving pills down me instead of treating the cause of the depression.
We had just moved into an apartment in September when Irma and Maria hit back-to-back. We had no electricity, water would go on and off, and food was hard to find. Even if you had money, shelves were bare at stores and everything needed a generator to run. We had to walk to whatever church was serving food each day of rice, beans or chicken, bottled water, carrots, and a sour dough ham sandwich IF you were lucky. We ate mostly 1 time a day. Sometimes we could score breakfast of either some grits type stuff, pudding, or oatmeal. My boils were there, but didn’t hurt as bad in my groin area. I just had the under arm lesion that flared from the heat/humidity.
November 2017, We finally got out of Puerto Rico. We gorged on fast food and then ate normal again. The leg boil came back and tunneled to my groin. We moved into a hotel until we could find an apartment.
December 26th or 27th, I got a boil so big on my right butt cheek that I couldn’t close my leg or sit without wanting to scream. I looked on Facebook and found a couple HS groups that might offer help. I was then thrown in so many directions from good hearted people offering advise of every type. Creams, Epsom salt baths, even ZOTE SOAP. Yes, laundry soap. I can’t lie, I tried the Zote for few days and it made the boils worse. I thought maybe it was nightshades and swore them off for good. Coincidentally, I started my period a few days later. Members of a group told me a few tricks to get my huge boil to pop. I used Epsom salt baths followed by a mix of Vaseline or coconut oil and tea tree oil twice a day. In no time, I woke up to blood and puss every where and now had a few holes. I was worried about it being so close to my anus, though. Then, my period , ugh.
January 5th, we moved into our new apartment. No more hotel life. My boils were all still there. No stopping them, they moved with us. I started the AIP diet I kept hearing about during this time. The pain in my groin effected my romantic life as well as kept me from doing things I loved doing (hiking, working out, long walks, even yoga. I was feeling very depressed again.
January 13th I went back to my old doctor’s office that found my first auto immune disorder of my esophagus (EoE). I wasn’t able to see my old doctor right away. I was left with a doctor 3 years in practice and with only 2 HS patients. She listened to me, ran blood tests, and glanced at my boils. She offered no help and pushed me off to my old doctor. I even told her my anus was starting to hurt. She did nothing. I was tested for gluten sensitivity, common food allergies, cbc was tested, thyroid, metabolic, hormones, and cholesterol.
January 19th I got my test results back. I was positive for gluten sensitivity, but not celiac disease and slightly anemic. My immunoglobulin E was 313! It is supposed to be under 180. Everything else was fine other than low good cholesterol. I showed no allergy to new foods.
January 20th, my anus had swelled over time to the point I could hardly have a bowel movement without pain, lots of pushing, puss, and bleeding. I went to the ER right away. I was given Clyndomicin again, pain meds, and told to take a stool softener. I was referred to a surgeon for post op. Feb 9th.
February 1, I saw my old doctor. He said my HS will go away by the time I’m 60 (not true, I’ve seen older people with it), and referred me to his clinic dermatologist. He told me to stop smoking and lose weight. I’ve already gone from 253-229 since July. I’ve joined a gym in January too. He ran more blood tests for anemia and different thyroid tests. He blew off my immunoglobulin E being high.
Feb 3, 24 hours later and my anus is hurting again. I checked my test results online. My sed rate is high, my iron saturation % is low, sodium low. Cbc and thyroid fine. Cbc no longer shows low red blood cells. I told the guy I was on my period when the last one was taken. What does this say? My body is suffering from inflammation. Duh, I have HS!
Feb 9th: I saw a surgeon for my Hidradenitis. He looked over everything and said he would do the surgery to remove my lesions as long as my dermatologist agreed. He found anal fissures and told me to come back in 2 months.
March 9th: I saw my primary care doctor and his clinic’s dermatologist. This dermatologist said he’d rather me take Minocycline for three months and 800mg of Ibuprofen 3 times a day for pain. I was told surgery was not a good idea because it would be too painful and I should try Humira. I was then referred to a Missouri University Hospital Dermatologist.
March 16th: I was in the ER again with bloody stools, swollen anus, and not able to have a BM. Doctors ran a CT scan and found colitis. I was put on 2 antibiotics and sent home.
March 21: I see my doctor about my ER visit and depression. He sends me to get an upper GI to check for Celiac and a colonoscopy to see why I have colitis. He puts me on Cymbalta for depression, anxiety, and pain. These pills make me very sick to my stomach and way too dizzy to handle. I stopped Minocycline because it made my HS worse, not better.
March 28th: I see the hospital dermatologist who tells me to stop all antibiotics for the HS and no more Ibuprofen because #1 it’s not working and #2 my gut is too torn up to handle it. He suggests Humira if my Colonoscopy also shows something like Crohn’s since Humira will help with both issues.
April 13: My dermatologist sees my biopsy showed no Crohn’s or other IBD (just severe pancolonic diverticulosis) Since Humira does not treat diverticulosis, he wants me to have surgery since I have suffered so long AND Humira would take a long time to have patient assistance approved. I meet with the surgeon again April 27th to plan my surgery.
March 31: I have had wide area and deroofing surgery to 8 areas in my groin and in my left underarm (8 inches long) left open to heal.
Please read my blog posts and you will see how my story has progressed. My fight is not over, but I have a glimmer of hope.
I’d like to add I suffer from arthritis, scoliosis of my lower back, Diverticulosis, depression, and anxiety. I’ve suffered with this since my 20s. I don’t drink or do drugs. I’m also completely STD free. You can’t catch what I have.