Have you been gaslit by health professionals?
I was diagnosed with HS 2 years ago by my old GP when I had a terrible flare up at the end of my pregnancy (at least 9 large excruciating boils at once). It has improved to an extent but is still much worse than previously. I have since moved practices/GP.
I have avoided seeking treatment as most treatment involves dampening your immune system and during Covid I thought this wasn’t a good idea. However I recently had an abscess on my labia! Excruciating! I’ve had one there before and it got much larger and made me very ill. Worried it would get worse I thought enough is enough and would go to the GP.
There was no record of HS in my records! New GP decided I had googled it and self diagnosed. He also assumed I was getting them because I was diabetic (I’m a bit overweight). I have been tested regularly for diabetes and never been found to be diabetic. I pointed this out to him and said I’ve had this for 15 years so I didn’t think diabetes was the cause. Blood tests from this recent visit also found I’m still not diabetic.
He dismissed the pain I was in until I cried and begged him to just look at the new abscess. At which point he panicked, took my pulse and temperature and sent me to A and E.
I then repeated the diabetes conversation with the consultant at hospital. I also said about my sister being diagnosed with HS and that I regularly clean with chlorihexidine and it disappeared with the pessary I was given to induce labour 2 years ago.
Despite the history I gave and the blood tests showing I’m not diabetic. I still got told it was just folliculitis and I needed to wash more regularly, and sometimes people just get boils. Essentially treating it like one or two isolated incidents, instead of a constant presence in my life (I never not had at least 1). I was told it was worst during pregnancy because immune system lowers then…….except it lowers in the first trimester and I was fine then. It got worse in third trimester when your immune system ramps back up again.
They also wouldn’t drain the abscess because of it’s a location. So I was given dihydrocodeine for pain and a weeks worth of antibiotics.
So in short I got accused of self diagnosing off Google, lying about my pain levels, ignored when I pointed out inconsistencies in their logic and then dismissed. On top of a very painful abscess it made me feel absolutely rubbish.
Sorry for the rant! On a better note, it popped this morning!!! Bliss!!!!
Oh hell the damn doctors always fall back on a blame the patient diagnosis when they're stumped by a disease. Diet, sugar, exercise, smoking, obesity, lifestyle, yada yada yada. I now strongly suspect my HS is really a yeast or fungal infection. Thus the ineffectiveness of antibiotics except for those with weak anti fungal properties like Tetracycline, Sulfatrim. I've been getting a good result from over the counter Fluconazole (Canesten) the past couple years.
I had been getting lesions on my neck and jaw line. I got a really bad one on my chin and decided to go to the doctor. Of course we have to wear masks when we go in to the office so it was hidden from her in the beginning. When she asked to see it; I pulled my mask down and she looked mortified. Her demeanor toward me changed completely! She asked me if I have been going through anything stressful and I told her yes because I Was in the process of Writing out What happened on the day I was raped when I was in the military. She said the stress of that is probably causing my skin to break out. I was told that I was borderline self harming. She prescribed antibiotics and gave me a reader on not picking my face. Well my condition wasn’t clearing so I went back to my doctor and she referred me to a dermatologist. The dermatologist told me that it was probably my Hormones & IUD are causing my breakouts. That didn’t get me anywhere so I went back to my doctor again. The only thing I got from that was some anti-anxiety medication. I am still getting inflammation to this day and it is now starting to show up on other parts of my body; not just my face anymore. I was forced to research the symptoms on my own and found some online support groups. I’ve been using natural remedies, changed my diet Found supplements that help with inflammation. Still struggling; but it’s starting to improve a little bit. I have been unable to work and have missed out on many occasions. Most days I don’t want to leave my house. I planned my husband’s 50th birthday party and was unable to attend because I was in so much pain & embarrassed.
I am so, so, sorry. Of course this isn't self-harm. The first suggestion I have for you is to use a tool that I often use when I'm trying to help others find help, and that is Medifind.com. I plug in the condition I have or need to have diagnosed (in some cases) and the city where I want to look, and results will come back with doctors in that area and how experienced they are. Of course, the smaller the city, usually the less experience. I personally have some rare diseases and sometimes I have to put in a very large search radius. If you feel like you aren't getting satisfactory results, then you can do a Google search and try looking under "hidradenitis suppurativa clinic" or "hidradenitis suppurativa doctor" and then the city name. I think this would be a good way to either definitively get a diagnosis, or rule it out. I'm so sorry that you have missed out on so much, and that you have been in so much pain. And I'm so sorry that every kind of injustice and violation seems to find you. But please know that you deserve care and concern, and an excellent team of doctors. Sending you many hugs. ~Chelsea (Team Member)
Freund and I'm sitting here in tears and I can't ty both enough. Hopefully I will get back to make a proper intro, but for now, ty for the gift of understanding, compassion, knowing what it's like to have a Dr disregard ALL the symptoms. To have suffered these last several years bc of a Dr's weak ego that flat out refused when I would ask for a referral to a derm.
Last week I was officially diagnosed
What a bittersweet moment! I burst into tears, not bc of sadness or despair, rather bc I had FINALLY been heard. I've started with the wash and the topical antibiotic and yes, unfortunately,my Lady Bits are involved too.
Merry Christmas 🎄⛄Hello! Thank you so much for sharing such a personal moment! That moment of diagnosis can be such a roller coaster, and so overwhelming. I hope that you start experiencing relief and can have your HS treated properly according to your needs. Sending you some big hugs! ~Chelsea (Team Member)
Hello! I had to reply, because I was reminded of a show that we had access to for a while on the U.S. side of Netflix that was a BBC show. I apologize because I can't track down the name of it at the moment, but I remember it was a couple of dermatologists who would park a trailer in a location and invite people to pop in to try to get their unusual skin conditions diagnosed. I do remember the logo for the show was bright green! There was one gentleman who had HS in his underarms I think who was featured in the first season that aired here, and after I was diagnosed (I had symptoms for 10 years at that point), I went back and rewatched that show - because his case looked NOTHING like mine. I strictly got lesions on the inside of my labia to begin, and my (female) NP OP/GYN accused me of self harm. She wasn't my usual doctor, so after I finally got diagnosed, I had a stern chat with my regular OB/GYN. But my first lesions were sporadic. So to cover some of your points: I'm so sorry you were let down by these doctors. At this point, they really should know what they are looking at. It's not a matter of hygiene, and it's not a failure on your part. You have already ruled out diabetes and keep an eye on your blood sugar; HS is a progressive disease, and sometimes despite your best effort, it progresses. Something else that is available to you but is not covered by the NHS is laser treatments. It's to destroy the lesions and ultimately fry the bacteria, because the bacteria build up a biofilm that are impervious to antibiotics (oral and topical) and steroids. The effects of the laser treatments are actually long lasting and you may not need more than a few treatments, or you may need a follow-up session in a few years. Biologics can be helpful if your body likes them, but not everyone responds well. I actually failed out of five of them, and I'm on my last option. So it's fair to give it serious consideration and not just jump right in.
Regarding draining lesions before they drain naturally, without knowing it, they actually did you a favor - though it probably didn't feel like it! Studies are showing that if we bust those open prematurely, or if doctors do, instead of letting the skin break open on its own (or using heat and moisture or some sort of topical to encourage the skin to open up), we're in trouble. There's pretty much a 100% chance of it filling up again, and a vicious cycle starts of filling and draining, filling and draining, and then scar tissue really goes nuts too.I know your choices can be limited (I have visited and sat through some appointments over there), but is there a way to find a doctor who might be more familiar with HS? I'm sure you've had that same wish. We really do need more education on HS all around. I'm so sorry that you have had to go through all of that, but you are not alone! Sending you hugs and thank goodness that nasty one finally popped! ~Chelsea (Team Member)
