Losing All Hope
When I was a teenager sometime after I hit puberty I started to get “boils” all the time or at least that’s what I was always told they were. I went through multiple doctors who said they were just boils and I was prone to them due to my oily skin. I also had a cyst removed from behind my ear twice in my twenties and I had 2 6” long abscesses on my tailbone at separate times in my 20’s as well.
I was a pretty active kid/young man I played sports when I was younger and was always outside. As I got older I’ve always worked physical jobs. I also worked out off and on but nothing serious. I started smoking cigarettes regularly at roughly 16 years old and I was always moderately overweight with a very crappy diet. I was always one to be at a party but I wasn’t a super heavy or regular drinker.
From stage 1 to stage 2
As I went through my 20’s (now 32) my HS had went from stage 1 to stage 2 as I was treating my body like a complete useless playground. About a year and a half to two years or so ago I noticed a I had a swollen lymph node while going to the bathroom at work one night doing my normal lumps and bumps checking. It was painless, not huge but noticeable. Felt rubbery and seemed to move around when I would use my finger to touch it. I got nervous but didn’t think much of it. I watched it for awhile and fast forward to March of 2021 and went through a couple week period where I had drenching night sweats multiple times every night. Even sleeping without clothes on I was a furnace churning out immense amounts of heat. Soaking through clothes, sheets, pillows you name it. I’d wake up 2-4 times a night and have to change everything. I was also vomiting and losing weight at the same time as I could not seem to keep food or drinks down.
Putting my symptoms into Google
Obviously frightened after googling those symptoms I finally called my GP who had me in immediately. After that short period the symptoms disappeared. At this time I also stopped my TRT protocol and stopped injecting testosterone weekly in my stomach in case that had something to do with it as I had been receiving testosterone therapy for the past couple years leading up to this point. At this point I had finally also figured out via Google I had HS disease after tons of research and being fed up with suffering and I told my GP, showed him and he officially diagnosed me with HS.
A physical exam confirmed I had a swollen lymph node. I was put on antibiotics. Blood work was ordered. My CEA was 4.4 and my AFP/Tumor markers were 1.5 and again I was a smoker so my doctor said my level was normal for a smoker so he was not overly concerned with that. My platelets were normal, white count a little high but wasn’t flagged, Red count was flagged and high, neutrophils(absolute) was very high and everything else was pretty normal.
Discovering I have HS
Next up was imaging in May 2021 CT with contrast showed General lymphadenopathy across my entire area from my left groin all the way over to my right. My doctor had me back in the next day now concerned himself and I was referred to a specialist an hour away. When I met with the specialist I disclosed to him I did have a cousin on my fathers side pass from lymphoma at 27 years old although that was many many years ago when I was a younger kid and that cancer seemed to run heavily on my grandfathers side of the family (but him nor his side of the family ever really took care of themselves and were long time heavy smokers and drinkers). I also disclosed at this time that I had HS disease. After asking me to show him I showed him my areas and he said re image in 3 months and then we will determine to biopsy or not.
Fast forward 3 months to August of 2021 of last year and the specialist discharged me. The new CT with contrast showed all my organs were fine and although the lymph nodes weren’t completely down he said they had reduced in size including the biggest one. He said due to that and my age he didn’t want to cut me open and start removing lymph nodes. I was relieved but also still worried with no definite answer. But I quickly moved on with life and put the experience behind me.
Turning my health around
Fast forward to present time and for the last 6 months I’ve been turning my health around and hired a personal trainer and nutritionist. I have lost around 35 pounds so far and added a good bit of muscle especially in my legs but that one original lymph node has always still been noticeable to me. It has at times felt inflamed and bigger but seems to always calm down but just never go back to a non feel-able size. I had blood work done in October and my doctor was extremely impressed with me turning my health around and said my routine blood work was outstanding and pristine it was a great appointment for once and I felt great with no issues with my HS seeming to be in remission with 99% flare up (boil) free. The only issue was my testosterone was still low so he put me back on TRT injections in the stomach (Xyosted) rotating each side every other week.
Facing more challenges
Now I’m not sure if this is just a coincidence, or if it truly has anything to do with the shots or if I have just been so focused on the gym, my kids, life and being healthy that I didn’t notice all these lymph nodes before the shots but two weeks after starting my shots I noticed my lymph nodes from my left groin to my right were all super inflamed again and ache at times all of a sudden. I can feel several on each side and one in each of my “inner thigh” femoral area on each leg in the same exact spot. The one node doesn’t seem any bigger than it has ever been and in my opinion seems to fluctuate in size. But now I can feel several nodes on each side of my groin clear as day. Some are smaller than others and none are as big as the original one I have had since the very beginning. I do have a bump on my left pinky knuckle near the nail so I am being tested for RA now also.
Trying to remain hopeful
I am severely concerned now being referred to Oncology. At 32 years old with 3 small children that I adore I am in total fear and have sobbed for days on end often for hours and also to sleep. I was scared the last time but that was one lymph node. Who can feel 7 swollen lymph nodes on each side of their groin that’s not normal? I am losing hope, praying this isn’t cancer but I can’t help but think the worst right now.
Where did you first hear about hidradenitis suppurativa?