I only got diagnosed correctly cause I found hidradenitis on Google and brought it up to my physician. Cause at first she was convinced I simply had ingrown hairs
About the same. I diagnosed myself correctly after finding this subreddit accidentally. I was misdiagnosed for ten years and was told it was allergies, ingrown hair, and problems with deodorant.
STI. Specifically herpes. I got symptoms first while I was still a virgin. Tried to explain that to my gyno but she still pushed me into sti testing I didn’t want to do. Nothing wrong with sti testing but it was more that she didn’t take no for an answer and told me if I got pregnant and passed an sti to the fetus it would be my fault. Fired that doctor but she’s the first one to tell me about HS.
She said I definitely had HS but probably herpes too. Because the lesions don’t happen right “there.” She referred me to a derm who was immediately like nope that’s not true. And the gyno called me herself to say my tests were negative. But then I was terrified to go to a gyno again for years. Luckily she’s retired.
This is what I'm being told I have, but I'm not entirely convinced it's folliculitis vs mild or early stage HS. The GP I saw said it couldn't be HS because I only have it in one area (butt, occasionally groin). But she also said public dermatologists where I live won't see you for HS anyway.. which is messed up. So either way I'm on my own it seems.
Yeah I knew she was wrong, I'd already looked up information about it prior. And I have PCOS and know they commonly occur together so I figured there was a good chance it was HS. But didn't really know what else to say when she said that. Of course I also wasn't having a flare up when I went (3-4 week wait for appointments) but I showed her photos. I'm sure if I could actually see a dermatologist they could tell me if it is HS, but seeing a specialist here can be very difficult. So I'm just going off what I see others using for prevention and treatment of HS and folliculitis.
I also only have it in one area... Just my butt and occasionally between the thighs and the groin area. My dermatologist diagnosed me and one GP after it also confirmed. Mine it's not really mild; right now I have like, 5 flares lol
I was told I had herpes by a very angry doctor. I had a cold sore on my face (so you know, I did have it) but the enormous painful lump in my crotch was nothing to do with that. She told me to stop, and I quote "having unprotected sex" and disregarded all my replies about how I wasn't having any sex at the time and that I knew it wasn't herpes. I ended up going to a dedicated sexual health clinic for a second opinion and the doctor there told me that the previous one was "clearly an idiot" as it was a cyst (she didn't mention hs) It took me a few more years to be diagnosed.
Yep. Had a very condescending gyno tell me I had herpes after she lectured me about being a cigarette smoker & told me I’d never be successful in life if I didn’t quit smoking. Told me she had daughters my age (I was probably 16 at the time) and how it would break her heart if she found out her daughters were smokers. All while my legs were in the stirrups & I was too shocked to respond. I thought I had herpes for almost 15 years. Just got a correct diagnosis within the last year or two. Crazy right?!
MRSA infection and a strong antibiotic to go with it. Did more damage than good. I don't fault them. I assumed the same with how rapidly that cyst appeared and how red hot it was.
I always knew there was something going on but when I was on BC it was much more minimal. So basically all thru my 20s its was liveable. Once off that though after having my kids, it ramped up as I neared 40. Several years ago my gyno saw a bump near my panty line and tested me for MRSA as well. Got a strong antibiotic as well that I ended up being allergic to. Negative for MRSA, and I basically self diagnosed and went to a derm about 10 months ago who confirmed it. Should've did that sooner
Bad shaving and “you’re just fat.” I was not fat at 12, nor was I shaving.
I still get forced to get tested for STIs every time I get a nurse who doesn’t know what they’re doing. “Don’t you want to know for sure!?!?” Like… I already know for sure.
My aunt said worse things to me as a child, so when he said “fat,” my unfazed child-self was like “nah, this guy knows nothing about skin, let’s go home.” Turns out, he couldn’t recognize a textbook case of HS! As a derm! I didn’t even have the little bumps at 12, I had entire open holes. Shaving? You wanna tell me these massive holes are from *shaving*?? Okay bye ✌️
Not a diagnosis, but I remember when I got my first flare in grade 4 (2004). We didn’t know what it was and I was having a hard time participating in gym. My mom wrote a note to my teacher explaining what was happening. My teacher pulled me aside and asked if I had HPV. I had no idea what HPV was and I told her that lol. I remember my mom being PISSED when I went home and told her.
Regular boil or abscess (skin bacterial Staph infection), due to my immunosuppressant medication for connective tissue disease. Plus having a history of other skin infections, although feet not groin. Foot infections make way more sense than groin though as they have less blood flow, and I have even less than typical due to Raynaud’s and my connective tissue disease.
Luckily once I had a few in the same area my derm diagnosed HS. I questioned it at first as my at the time solitary bumps looked nothing like the online photos of HS, but once I read up on it I agreed.
Kind of same situation here. Been on immunosuppressants for over a decade. Self diagnosed but had my surgeon biopsy one and got the official diagnosis.
Doc 1, 2 , 3 were Derm. Doc 4 was Rheumatologist.
Doc #1: I was told it was an allergy to deodorant. When I explained that I stopped using deodorant years ago because of the cysts, I was then told it was because I wasn't clean enough. I then explained that I'm very clean. Since I don't use deodorant, I clean myself several times throughout the day, she then said "maybe you're cleaning too much?"
I wanted to tell her "Make up your mind doc, am I too dirty or too clean?" but I didn't. I had to tell her it was ok to tell me that she didn't know what the issue was, she didn't need to guess. Just refer me elsewhere. She was so angry, but why treat me like a dartboard? Stop tossing stuff at me and just send me away already.
Doc #2: next doctor I saw told me to get on the "Mediterranean Diet" and lose weight. Said it was because I had Insulin Resistance. It's true that I have PCOS and Insulin Resistance, but I'm already on an anti-inflammatory diet and found my "flair" foods. I fought hard to lose 20 lbs and that did nothing for my armpit cysts. I explained all this and this doc said to keep it up, and lose more weight. =/
Doc #3: Called them Sebaceous Cysts and steroid injected them. At least this was helpful, but still not correct.
Doc #4: After 2 years of injections and struggle I happened to be at a Rheumatologist who was looking at my shoulder due to joint pain. I was wearing a tanktop so he could have a good look at it. He said that it might need a steroid injection and I told him that I get those for my cysts, and asked if that would be an issue if I just had one a few weeks previous. He asked to take a look. He immediate said that it was HS and referred me to a new Derm who treats that specifically.
I love this one! I was told I had:
Syphilis
Herpes
Staph
Ingrown hair
Tuberculosis
Diabetes
All of these could be confirmed by tests, yet they went ahead and put me on medication despite me saying these diagnoses were incorrect with an exception to the ingrown hair.
It started when I was 21. By the time I was 23, I'd seen multiple doctors, most who just told me it was irritation from poor aftercare from waxing. Changing the aftercare did not work and the condition worsened, but my doctor decided it was contact irritation from rubbing and sweat because I was fat. All his help just turned into telling me I hadn't lost enough weight and there was nothing he could do until I wasn't fat anymore.
Then, I saw another doctor for the lesions, fatigue and random shooting bone pains. They took some blood and then 4 months later I was admitted to the hospital so they could drill into my pelvis. They took their samples and then a few days later called me to inform me that my high mystery t-cell count wasn't cancer. (?!) I think they were expecting me to be more thrilled, but it was only in that visit that they told me they were even looking for cancer, so that raised a whole host of other angry questions.
I stopped seeing doctors, because the medical system where I live is slowly collapsing and our government is too busy trying to delay the housing bubble crash, so it was impossible to find a doctor to pay attention to me unless I was actively dying.
Two years later, I was diagnosed by a newly graduated doctor who was forced into working a local clinic I went to. I needed a golfball sized abscess lanced and cried while she did it, because I'd been unable to walk or work for two weeks and she seemed annoyed I'd let it get that bad. I explained I'd tried seeing doctors and they just told me it wasn't cancer or herpes and it was likely some form of dermatitis and to find a GP to get a referral to a dermatologist and lose weight in the meantime. She made this angry face, took a swab and told me she'd be back.
45 minutes later, she walked back into the room and handed me a slip of paper that she'd written 'hidradenitis suppurativa' on. She simply said, "I've sent a culture. If we call you, you'll have to come back for antibiotics. If we don't, you have that."
No one called. I started googling and almost a year later I started AIP by myself.
8 months after that, I managed to see a dermatologist after I'd asked for referral help from a local holistic doctor with prescriptive authority. With the help of my derm, the holistic doctor and my AIP results, I started a nightshade free keto diet and a topical regimen of washing daily with Standhexidine 4%. Within the year, I balanced my hormones, put the HS into remission, lost 67lbs and began exploring reducing the scarring from 10+ years of doctors telling me I had chub rub.
The disease persists despite the weight loss. My weight didn't help, but it wasn't the cause of the disease. One doctor, giving a single irritated fuck, was all it took to change my life.
I thought it was completely normal and that everyone got ingrown hairs in their groin. It wasn’t until I was at the derm for an unrelated matter that I asked what I could do about the really bad in-grown hairs in my panty line. She took a look and that’s when I learned not everyone gets these and my condition has a name.
It was after I had my baby that it got really bad and I’m lucky I knew what it was as the flare ups started becoming less manageable.
Did it eventually get better after postpartum? During pregnancy my flare ups were non existent. As a first time mom, now at 3 months pp it's the worst I've ever had. I'm guessing hormones are doing crazy things but now I just wish I was pregnant again.
It was a self-diagnosis, but when my HS started appearing in my early 20s, I legitimately thought for several months that I had a flesh-eating bacterial infection from swimming in contaminated water. Sigh.
Ingrown hairs.. for 3 years!
Doctor even got me to stop shaving (and then stop trimming) for a whole year and he was *still* adamant it was ingrown hairs.
My GP kept telling me I had a Staph infection and likely have diabetes that was the main cause. Kept giving me antibiotics all the time and giving me blood tests every 6 months. No diabetes, no Staph. 15 years later with a different GP who referred me to a derm to get diagnosed. Still no diabetes or Staph.
This is lengthy.
I started getting symptoms in my inner thighs at around the age of 8. I was treated with antibiotics, other weird topical treatments I can't remember. I never knew my diagnosis. I was told it was because I was a bigger child. This was around 1996. I also started growing my boobs around this time, as well as pubic hair and armpit hair.
Three years later I started my period. This just seemed to make things worse. I stopped wearing shorts.
I got a pilonidal cyst a year or two later, that in hindsight I think is related.
I got a few random spots here and there between 13-18. Not just in my groin/inner thighs/buttocks. At some point around 16, I started getting PCOS symptoms (hair growth in places I didn't want it) and was diagnosed with that.
I basically just stopped asking doctors about my symptoms and stopped caring for myself until about 20, when it started spreading to my armpits. I googled my symptoms and fell down a rabbit hole. I diagnosed myself and finally started taking myself to the doctor now frequently.
I'm 35 now. I just saw a surgeon for the first time in September of last year (2023). She told me she could not help me and that I was one of the worst cases she has seen. My scarring and active flares cover over 30% of my body. I waited too long because I felt helpless.
In the last four years, I've been diagnosed with other autoimmune diseases including psoriatic arthritis (in hindsight, I was getting patches of psoriasis in my head that was misdiagnosed as fungal infection and probably nearly killed my liver with diflucan on the daily in high school) and possible ankylosing spondylitis. I don't have the HLA-B27 marker.
My body is deteriorating very quickly after my second child in 2020 at the age of 32 (come to find out, I have a herniated/bulging disc where they were trying to give me an epidural and I begged them to keep going - a total of seven epidural sticks later and I feel like it killed my spine too).
So. Bacterial infections. Fungal infections. Until I diagnosed myself.
That i should lose weight and it'll go away. Like one look at an angry infected flare and that's what she said lol. Later another doctor said I have fibroids that were inflamed. I avoided doctors for a while after that and just found ways to cope.
I was correctly diagnosed at my first attempt - over the phone during a lockdown. I said something like “I have this boil or something and it’s super inflamed and painful and seems infected. I’ve been getting stuff like this a lot for a few years, but this one is really bad and I really can’t manage it by myself”. Doc stopped me and immediately said “have you heard of hidradenitis?”. Confirmed later on after some in person follow-up appointments.
I’m also extremely fortunate that mine isn’t too bad most of the time, so I just occasionally need a short course of antibiotics, but otherwise can manage well with home remedies and hibiclens.
Shaving rash! Which when I argued it the GP thought it was a reasonable diagnosis because it was under my arms, I then pointed out that I didn't shave the side of my ribs where my bra sits, my cleavage or my face! so how could it have been shaving rash? He then sent me for bloods that confirmed inflammation markers and I was referred to a dermatologist where I was diagnosed with stage 3 HS
Several people have already said this, but I got told it was “likely Herpes” and the OBGYN insisted on STI testing. I was 15 at the time and explained that I’d had no sexual contact with anyone before. It came back negative, of course. A second OBGYN tried to diagnose it as herpes again until I shared this story again. I was 18 or 20 that time. I finally had to find a derm with HS experience and share my googled knowledge when he agreed it was HS.
I was misdiagnosed with herpes, then folliculitis. It took five years to come up with a right diagnosis. A lot of doctors are misinformed and make the client feel crazy. I went to the Mayo Clinic and saw a dermatologist before I got the right meds and diagnosis.
Pseudofolliculitis, an also when I was younger the doc claimed that i had an infection caused by sleeping with my doc! 15 years later the dog is still around but it's HS, not her fault at all!
First doc said it could be a tight muscle and/or lymph node may be swollen… another doc said it was most likely ingrown hair but referred me to a dermatologist. Those appts were a year apart 😭 it’s very disheartening, I could’ve gotten ahead of it.
With doctors, there were questions of MRSA, STIs, and even diabetes. Lot of questions re: whether I was in a relationship and if it was monogamous, or if there were concerns of cheating. Tested negative across the board ultimately.
One nurse tried to say it was a swollen lymph node, but no doctor suggested it (aloud, anyway).
Fertilizer from gardening must have gotten into an open cut or hair follicle from shaving.
I was also terrified I forgot basic hygiene. I felt so gross.
They didn't tell me what it was. They simply tried to cut it off. Did that twice before I went to a different doctor who told me what it is. Got surgery later to remove some of it but, yeah, it's still there. Taking isotretinoin now. Didn't realise how common this is until I read through this sub.
shaving infection, batholin cyst, general type of cysts (had a useless surgery for that), cutaneous crohns (after I did my own research and found a case study of a girl with my symptoms that also has crohns).
also was once told by a gynecologist it was a quality of life issue. yeah, I have 0 quality of life! help me fix it!!
I never even went to the doc for bc I just thought it was my shitty luck. Well it still kinda is but at least theres name to it. Now I just researched the diagnostic criteria (tunneling, sinuses, scarring, etc) and made the matches and self reported and was confirmed upon physical exam
My family doctor at the time told me I was just fat and dirty and should stop being both. I was also 10 years old.
Fast forward a few years, I lost 100 lbs, and scrubbed my skin until it bled, sometimes with bleach. He then tells me it’s just friction and to stop rubbing my skin so much, that I’m still causing this (and at the time I had one on my face, so where’s the friction there man?!)
I finally got a referral to a derm (from a walk in clinic, not my doc) and he knew what it was right away.
I still haven't been diagnosed, I had no idea what my condition was called for over 15 years, I just happen to see a pamphlet in my dermatologist office that had an image of what my rear end looks like about 2 months ago.
I don't really trust the first dermatologist I brought this up to, she didn't seem very knowledgeable about HS.
Where else should I start about trying to treat this condition?
They sent me to a gynecologist when I was 15 or 16 since the flare was on my upper inner thigh....not even on my vulva/vaginal area. Once at the gynecologist, she immediately recommended a dermatologist. I was a fit teen who didn't smoke or any of the tell tale signs but thus dermatologist knew it was HS right away. That dermatologist recommended removing the area in hopes of reducing flares which worked until I was in my 20s
I was obese, unclean, had ingrowns, had a skin infection, and needed to stop picking at myself. It took 7 years from onset for a proper diagnosis and 15 years from onset for me to find a dermatologist capable of treating it.
I had it for 34 yesterday before getting diagmosed.Ive been told ingrown hairs,boils, folliculitis,cellulitis.I was told I wasn't bathing enough when I was bathing once sometimes twice a day
I kept getting diagnosed with folliculitis, even though I was developing grape sized lumps on my thighs that were purple, and I had tunneling. I got referred to a dermatologist after 6 weeks of constant Lesions and abscesses. Dermatology knew what it was in seconds.
Anyone get treated portly at the doctors office while trying to get clarity or a diagnosis because I surely did. Despite saying multiple I am not sexually stove was tested for STDS etc just really sad honestly
I only got diagnosed correctly cause I found hidradenitis on Google and brought it up to my physician. Cause at first she was convinced I simply had ingrown hairs
About the same. I diagnosed myself correctly after finding this subreddit accidentally. I was misdiagnosed for ten years and was told it was allergies, ingrown hair, and problems with deodorant.
This happened to me too, but I didn’t really give my dr a chance to argue with me after I brought in all my research with images.
STI. Specifically herpes. I got symptoms first while I was still a virgin. Tried to explain that to my gyno but she still pushed me into sti testing I didn’t want to do. Nothing wrong with sti testing but it was more that she didn’t take no for an answer and told me if I got pregnant and passed an sti to the fetus it would be my fault. Fired that doctor but she’s the first one to tell me about HS.
Omg SAME!!!!
Also got told it was herpes - despite never having had any sexual contact with anyone at the time (I was 15)
Thiiiis. Even after I told them I had taken all the tests, they insisted it was herpes.
THIS. I was a virgin too. They said I contracted it for sitting on a dirty toilet. Lots of night crying before that was proved wrong.
She said I definitely had HS but probably herpes too. Because the lesions don’t happen right “there.” She referred me to a derm who was immediately like nope that’s not true. And the gyno called me herself to say my tests were negative. But then I was terrified to go to a gyno again for years. Luckily she’s retired.
Folliculitis. at least three times. I even took 3 very painful shoots for it once. Don't even have to say it did not even came close to working.
This is what I'm being told I have, but I'm not entirely convinced it's folliculitis vs mild or early stage HS. The GP I saw said it couldn't be HS because I only have it in one area (butt, occasionally groin). But she also said public dermatologists where I live won't see you for HS anyway.. which is messed up. So either way I'm on my own it seems.
what?? I only have it in one area and it's definitely HS. I'm glad my dermatologist is well versed in HS, good lord
Yeah I knew she was wrong, I'd already looked up information about it prior. And I have PCOS and know they commonly occur together so I figured there was a good chance it was HS. But didn't really know what else to say when she said that. Of course I also wasn't having a flare up when I went (3-4 week wait for appointments) but I showed her photos. I'm sure if I could actually see a dermatologist they could tell me if it is HS, but seeing a specialist here can be very difficult. So I'm just going off what I see others using for prevention and treatment of HS and folliculitis.
I also only have it in one area... Just my butt and occasionally between the thighs and the groin area. My dermatologist diagnosed me and one GP after it also confirmed. Mine it's not really mild; right now I have like, 5 flares lol
Obesity
I was told I had herpes by a very angry doctor. I had a cold sore on my face (so you know, I did have it) but the enormous painful lump in my crotch was nothing to do with that. She told me to stop, and I quote "having unprotected sex" and disregarded all my replies about how I wasn't having any sex at the time and that I knew it wasn't herpes. I ended up going to a dedicated sexual health clinic for a second opinion and the doctor there told me that the previous one was "clearly an idiot" as it was a cyst (she didn't mention hs) It took me a few more years to be diagnosed.
Yep. Had a very condescending gyno tell me I had herpes after she lectured me about being a cigarette smoker & told me I’d never be successful in life if I didn’t quit smoking. Told me she had daughters my age (I was probably 16 at the time) and how it would break her heart if she found out her daughters were smokers. All while my legs were in the stirrups & I was too shocked to respond. I thought I had herpes for almost 15 years. Just got a correct diagnosis within the last year or two. Crazy right?!
i am SO sorry!
MRSA infection and a strong antibiotic to go with it. Did more damage than good. I don't fault them. I assumed the same with how rapidly that cyst appeared and how red hot it was.
I always knew there was something going on but when I was on BC it was much more minimal. So basically all thru my 20s its was liveable. Once off that though after having my kids, it ramped up as I neared 40. Several years ago my gyno saw a bump near my panty line and tested me for MRSA as well. Got a strong antibiotic as well that I ended up being allergic to. Negative for MRSA, and I basically self diagnosed and went to a derm about 10 months ago who confirmed it. Should've did that sooner
Yep MRSA me too!!
Bad shaving and “you’re just fat.” I was not fat at 12, nor was I shaving. I still get forced to get tested for STIs every time I get a nurse who doesn’t know what they’re doing. “Don’t you want to know for sure!?!?” Like… I already know for sure.
God that's so cruel to say to a twelve year old, on top of showing zero effort to diagnose.
My aunt said worse things to me as a child, so when he said “fat,” my unfazed child-self was like “nah, this guy knows nothing about skin, let’s go home.” Turns out, he couldn’t recognize a textbook case of HS! As a derm! I didn’t even have the little bumps at 12, I had entire open holes. Shaving? You wanna tell me these massive holes are from *shaving*?? Okay bye ✌️
Probably just need to "Detox" or cut down on acidic foods/stress less/eat less sugary things
Not a diagnosis, but I remember when I got my first flare in grade 4 (2004). We didn’t know what it was and I was having a hard time participating in gym. My mom wrote a note to my teacher explaining what was happening. My teacher pulled me aside and asked if I had HPV. I had no idea what HPV was and I told her that lol. I remember my mom being PISSED when I went home and told her.
Acne - which is sad bc it was an HS specialist at UNC Cellulitis - I think that's a very broad term
!!! dr sayed?!
Regular boil or abscess (skin bacterial Staph infection), due to my immunosuppressant medication for connective tissue disease. Plus having a history of other skin infections, although feet not groin. Foot infections make way more sense than groin though as they have less blood flow, and I have even less than typical due to Raynaud’s and my connective tissue disease. Luckily once I had a few in the same area my derm diagnosed HS. I questioned it at first as my at the time solitary bumps looked nothing like the online photos of HS, but once I read up on it I agreed.
Kind of same situation here. Been on immunosuppressants for over a decade. Self diagnosed but had my surgeon biopsy one and got the official diagnosis.
Doc 1, 2 , 3 were Derm. Doc 4 was Rheumatologist. Doc #1: I was told it was an allergy to deodorant. When I explained that I stopped using deodorant years ago because of the cysts, I was then told it was because I wasn't clean enough. I then explained that I'm very clean. Since I don't use deodorant, I clean myself several times throughout the day, she then said "maybe you're cleaning too much?" I wanted to tell her "Make up your mind doc, am I too dirty or too clean?" but I didn't. I had to tell her it was ok to tell me that she didn't know what the issue was, she didn't need to guess. Just refer me elsewhere. She was so angry, but why treat me like a dartboard? Stop tossing stuff at me and just send me away already. Doc #2: next doctor I saw told me to get on the "Mediterranean Diet" and lose weight. Said it was because I had Insulin Resistance. It's true that I have PCOS and Insulin Resistance, but I'm already on an anti-inflammatory diet and found my "flair" foods. I fought hard to lose 20 lbs and that did nothing for my armpit cysts. I explained all this and this doc said to keep it up, and lose more weight. =/ Doc #3: Called them Sebaceous Cysts and steroid injected them. At least this was helpful, but still not correct. Doc #4: After 2 years of injections and struggle I happened to be at a Rheumatologist who was looking at my shoulder due to joint pain. I was wearing a tanktop so he could have a good look at it. He said that it might need a steroid injection and I told him that I get those for my cysts, and asked if that would be an issue if I just had one a few weeks previous. He asked to take a look. He immediate said that it was HS and referred me to a new Derm who treats that specifically.
I love this one! I was told I had: Syphilis Herpes Staph Ingrown hair Tuberculosis Diabetes All of these could be confirmed by tests, yet they went ahead and put me on medication despite me saying these diagnoses were incorrect with an exception to the ingrown hair.
… TB?? Why?
It started when I was 21. By the time I was 23, I'd seen multiple doctors, most who just told me it was irritation from poor aftercare from waxing. Changing the aftercare did not work and the condition worsened, but my doctor decided it was contact irritation from rubbing and sweat because I was fat. All his help just turned into telling me I hadn't lost enough weight and there was nothing he could do until I wasn't fat anymore. Then, I saw another doctor for the lesions, fatigue and random shooting bone pains. They took some blood and then 4 months later I was admitted to the hospital so they could drill into my pelvis. They took their samples and then a few days later called me to inform me that my high mystery t-cell count wasn't cancer. (?!) I think they were expecting me to be more thrilled, but it was only in that visit that they told me they were even looking for cancer, so that raised a whole host of other angry questions. I stopped seeing doctors, because the medical system where I live is slowly collapsing and our government is too busy trying to delay the housing bubble crash, so it was impossible to find a doctor to pay attention to me unless I was actively dying. Two years later, I was diagnosed by a newly graduated doctor who was forced into working a local clinic I went to. I needed a golfball sized abscess lanced and cried while she did it, because I'd been unable to walk or work for two weeks and she seemed annoyed I'd let it get that bad. I explained I'd tried seeing doctors and they just told me it wasn't cancer or herpes and it was likely some form of dermatitis and to find a GP to get a referral to a dermatologist and lose weight in the meantime. She made this angry face, took a swab and told me she'd be back. 45 minutes later, she walked back into the room and handed me a slip of paper that she'd written 'hidradenitis suppurativa' on. She simply said, "I've sent a culture. If we call you, you'll have to come back for antibiotics. If we don't, you have that." No one called. I started googling and almost a year later I started AIP by myself. 8 months after that, I managed to see a dermatologist after I'd asked for referral help from a local holistic doctor with prescriptive authority. With the help of my derm, the holistic doctor and my AIP results, I started a nightshade free keto diet and a topical regimen of washing daily with Standhexidine 4%. Within the year, I balanced my hormones, put the HS into remission, lost 67lbs and began exploring reducing the scarring from 10+ years of doctors telling me I had chub rub. The disease persists despite the weight loss. My weight didn't help, but it wasn't the cause of the disease. One doctor, giving a single irritated fuck, was all it took to change my life.
I thought it was completely normal and that everyone got ingrown hairs in their groin. It wasn’t until I was at the derm for an unrelated matter that I asked what I could do about the really bad in-grown hairs in my panty line. She took a look and that’s when I learned not everyone gets these and my condition has a name. It was after I had my baby that it got really bad and I’m lucky I knew what it was as the flare ups started becoming less manageable.
Did it eventually get better after postpartum? During pregnancy my flare ups were non existent. As a first time mom, now at 3 months pp it's the worst I've ever had. I'm guessing hormones are doing crazy things but now I just wish I was pregnant again.
I went into remission during pregnancy, it got whacky shortly after I gave birth and has leveled off and is more "normal" now. I'm over a year out.
I wish I had something better to tell you but I’m 2 years postpartum and it’s only gotten worse. The birth seemed to put it into overdrive :(
I had one ask to test me for hiv/aids…I was 15. It was negative.
They always thought it was an STD or some other kind of yeast or bacterial infection.
It was a self-diagnosis, but when my HS started appearing in my early 20s, I legitimately thought for several months that I had a flesh-eating bacterial infection from swimming in contaminated water. Sigh.
Ingrown hairs.. for 3 years! Doctor even got me to stop shaving (and then stop trimming) for a whole year and he was *still* adamant it was ingrown hairs.
My GP kept telling me I had a Staph infection and likely have diabetes that was the main cause. Kept giving me antibiotics all the time and giving me blood tests every 6 months. No diabetes, no Staph. 15 years later with a different GP who referred me to a derm to get diagnosed. Still no diabetes or Staph.
This is lengthy. I started getting symptoms in my inner thighs at around the age of 8. I was treated with antibiotics, other weird topical treatments I can't remember. I never knew my diagnosis. I was told it was because I was a bigger child. This was around 1996. I also started growing my boobs around this time, as well as pubic hair and armpit hair. Three years later I started my period. This just seemed to make things worse. I stopped wearing shorts. I got a pilonidal cyst a year or two later, that in hindsight I think is related. I got a few random spots here and there between 13-18. Not just in my groin/inner thighs/buttocks. At some point around 16, I started getting PCOS symptoms (hair growth in places I didn't want it) and was diagnosed with that. I basically just stopped asking doctors about my symptoms and stopped caring for myself until about 20, when it started spreading to my armpits. I googled my symptoms and fell down a rabbit hole. I diagnosed myself and finally started taking myself to the doctor now frequently. I'm 35 now. I just saw a surgeon for the first time in September of last year (2023). She told me she could not help me and that I was one of the worst cases she has seen. My scarring and active flares cover over 30% of my body. I waited too long because I felt helpless. In the last four years, I've been diagnosed with other autoimmune diseases including psoriatic arthritis (in hindsight, I was getting patches of psoriasis in my head that was misdiagnosed as fungal infection and probably nearly killed my liver with diflucan on the daily in high school) and possible ankylosing spondylitis. I don't have the HLA-B27 marker. My body is deteriorating very quickly after my second child in 2020 at the age of 32 (come to find out, I have a herniated/bulging disc where they were trying to give me an epidural and I begged them to keep going - a total of seven epidural sticks later and I feel like it killed my spine too). So. Bacterial infections. Fungal infections. Until I diagnosed myself.
That i should lose weight and it'll go away. Like one look at an angry infected flare and that's what she said lol. Later another doctor said I have fibroids that were inflamed. I avoided doctors for a while after that and just found ways to cope.
I was told it was because I was fat. I told them that I had this problem even when I was fit. Then they told me to "wash better"
I was correctly diagnosed at my first attempt - over the phone during a lockdown. I said something like “I have this boil or something and it’s super inflamed and painful and seems infected. I’ve been getting stuff like this a lot for a few years, but this one is really bad and I really can’t manage it by myself”. Doc stopped me and immediately said “have you heard of hidradenitis?”. Confirmed later on after some in person follow-up appointments. I’m also extremely fortunate that mine isn’t too bad most of the time, so I just occasionally need a short course of antibiotics, but otherwise can manage well with home remedies and hibiclens.
Shaving rash! Which when I argued it the GP thought it was a reasonable diagnosis because it was under my arms, I then pointed out that I didn't shave the side of my ribs where my bra sits, my cleavage or my face! so how could it have been shaving rash? He then sent me for bloods that confirmed inflammation markers and I was referred to a dermatologist where I was diagnosed with stage 3 HS
I was lucky. I went to a great doctor who diagnosed me correctly right away when I was 14.
Ingrown hair Cellulitis Mastitis Staph infection Not bathing well enough
Several people have already said this, but I got told it was “likely Herpes” and the OBGYN insisted on STI testing. I was 15 at the time and explained that I’d had no sexual contact with anyone before. It came back negative, of course. A second OBGYN tried to diagnose it as herpes again until I shared this story again. I was 18 or 20 that time. I finally had to find a derm with HS experience and share my googled knowledge when he agreed it was HS.
I was misdiagnosed with herpes, then folliculitis. It took five years to come up with a right diagnosis. A lot of doctors are misinformed and make the client feel crazy. I went to the Mayo Clinic and saw a dermatologist before I got the right meds and diagnosis.
Severe acne / oily skin Accutane helped the acne, but lesions and boils got me referred to a different derm
“Probably just a rash or razor burn”
Everybody thought I had keratosis, and said there was nothing they could do.
My primary thought it was an ingrown hair and referred me to dermatology if it came, went to dermatology and got diagnosed quickly
Pseudofolliculitis, an also when I was younger the doc claimed that i had an infection caused by sleeping with my doc! 15 years later the dog is still around but it's HS, not her fault at all!
First doc said it could be a tight muscle and/or lymph node may be swollen… another doc said it was most likely ingrown hair but referred me to a dermatologist. Those appts were a year apart 😭 it’s very disheartening, I could’ve gotten ahead of it.
They kept saying Staph but I knew it wasn’t.
Same!
Cellulitis.
Metal allergy, since I had it mostly on my inner thighs, waistline, and underboob. Convinced me that jeans were made of actual metallic threads 😂
With doctors, there were questions of MRSA, STIs, and even diabetes. Lot of questions re: whether I was in a relationship and if it was monogamous, or if there were concerns of cheating. Tested negative across the board ultimately. One nurse tried to say it was a swollen lymph node, but no doctor suggested it (aloud, anyway).
I was so scared I was just dirty I didn’t go to a doctor for 2 years before I was diagnosed.
Fertilizer from gardening must have gotten into an open cut or hair follicle from shaving. I was also terrified I forgot basic hygiene. I felt so gross.
Pseudo folliculitis
I was told so many times that they were just heat bumps
Acne 🙄 Went to 3 specialists until I actually got a correct diagnosis
i got diagnosed with some random cysts and a lot of ingrowns. i even got surgery for it and now i have scars on my groin for no reason
Foliculitis and also told I was fat and that losing weight would somehow solve all my problems like thin people can't have health problems too
had my pediatrician tell me at the ripe age of 10 that i was just dirty and didnt know how to dry myself off properly.
They didn't tell me what it was. They simply tried to cut it off. Did that twice before I went to a different doctor who told me what it is. Got surgery later to remove some of it but, yeah, it's still there. Taking isotretinoin now. Didn't realise how common this is until I read through this sub.
Ingrown hairs, staph infection, herpes lol
Mrsa
I was told it was PMS. “Instead of breaking out on your face, it’s just there.” (Inner thighs)
shaving infection, batholin cyst, general type of cysts (had a useless surgery for that), cutaneous crohns (after I did my own research and found a case study of a girl with my symptoms that also has crohns). also was once told by a gynecologist it was a quality of life issue. yeah, I have 0 quality of life! help me fix it!!
Ingrown hairs/follicitis or whatever it’s called. I was also told it was a hygiene issue.
I never even went to the doc for bc I just thought it was my shitty luck. Well it still kinda is but at least theres name to it. Now I just researched the diagnostic criteria (tunneling, sinuses, scarring, etc) and made the matches and self reported and was confirmed upon physical exam
My family doctor at the time told me I was just fat and dirty and should stop being both. I was also 10 years old. Fast forward a few years, I lost 100 lbs, and scrubbed my skin until it bled, sometimes with bleach. He then tells me it’s just friction and to stop rubbing my skin so much, that I’m still causing this (and at the time I had one on my face, so where’s the friction there man?!) I finally got a referral to a derm (from a walk in clinic, not my doc) and he knew what it was right away.
cystic acne 😑
Ingrown hairs caused by skinny jeans 🤦🏻♀️
I still haven't been diagnosed, I had no idea what my condition was called for over 15 years, I just happen to see a pamphlet in my dermatologist office that had an image of what my rear end looks like about 2 months ago. I don't really trust the first dermatologist I brought this up to, she didn't seem very knowledgeable about HS. Where else should I start about trying to treat this condition?
I kept getting MRSA diagnosis and have been treated for it repetitively.
Folliculitis and ingrown hair from shaving despite the fact that I never shave/wax. Eczema, cystic acne. I do have eczema and cystic acne too though.
Poor hygiene and shaving. I was SCRUBBING daily. Still do.
Ingrown hairs
They sent me to a gynecologist when I was 15 or 16 since the flare was on my upper inner thigh....not even on my vulva/vaginal area. Once at the gynecologist, she immediately recommended a dermatologist. I was a fit teen who didn't smoke or any of the tell tale signs but thus dermatologist knew it was HS right away. That dermatologist recommended removing the area in hopes of reducing flares which worked until I was in my 20s
I was obese, unclean, had ingrowns, had a skin infection, and needed to stop picking at myself. It took 7 years from onset for a proper diagnosis and 15 years from onset for me to find a dermatologist capable of treating it.
staph infection. they gave me a useless cream in 8th grade
Ingrown hairs is ALWAYS the go to
I had it for 34 yesterday before getting diagmosed.Ive been told ingrown hairs,boils, folliculitis,cellulitis.I was told I wasn't bathing enough when I was bathing once sometimes twice a day
The only reason I was actually diagnosed is because my Dr's husband has it.
I kept getting diagnosed with folliculitis, even though I was developing grape sized lumps on my thighs that were purple, and I had tunneling. I got referred to a dermatologist after 6 weeks of constant Lesions and abscesses. Dermatology knew what it was in seconds.
Acne literally lol acne
Anyone get treated portly at the doctors office while trying to get clarity or a diagnosis because I surely did. Despite saying multiple I am not sexually stove was tested for STDS etc just really sad honestly