Hidradenitis Suppurativa Support Group

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. The disease manifests as clusters of chronic abscesses or boils, sometimes as large as baseballs, that are extremely painful to the touch and may persist for years with occasional to frequent periods of inflammation, culminating in drainage, often leaving open wounds that will not heal.

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General Practitioner?

So, it has been over a year since I last visited a doctor for my HS...so the lady handling my case told me I would get an appt in the mail to be evaluated by a doctor...can anyone share their experience with this type of appt? I was surprised that it is a G.P. instead of a specialist. I'm having a run of breakouts this past two weeks, how convenient when my appt is next week and they all will prob have slowed the draining and shrunk alot by then. Just freakn great

Replies

kindherat10
kindherat10

What are you doing to manage your H.S.? And do you have health Insurance? Also does this doctor know anything about H.S!?
purpleworld
purpleworld

Turmeric and Zinc, red clover, burdock root, the recommended herbal supplements. No insurance, but when I did have it I was on Accutane for 6mos and it didn't help. I don't know if this doc is familiar with HS, but when I looked her up she is just a primary care physician. Who knows-from my experience they usually don't know what HS is.
deleted_user
deleted_user

Sadly I bet she wont have a clue what you have and will more than likely try to refer you to a dermatologist for acne problems! At least that has been my experience in the past. I guess you could let her refer you though, at least the derm MIGHT know what you have. You might even want to take a few items with you to your appointment.. such as pictures of the areas in full flare.. like NOW and maybe an article or 2 about HS, just to give her a headsup. She might get pissed that you bring your "internet" info with you, but if she does then to heck with her, she isnt interested in being a team player in helping you fight HS. You need to worry about YOU, not about hurting her feelings or making her feel stupid.. HS is such an obscure disease that not many doctors OR derms know crap about it.. us sufferers are the true experts on it.. so go with what you feel is right and do all you can to get the proper care.. even if you have to go to several doctors to find one that is willing to work with you against HS. I had to go again and again before I FINALLY found someone who knew what the heck I had and how to help me fight it.. just don't give up! There is help out there!
ShannonA
ShannonA

Purpleworld..Please don't give one second thought to whether or not this GP is gonna be ill with you for bringing your own info on what you are dealing with. If the doctor your seeing does feel that way then they are not worth the paper their PHD is printed on. A doctor should be happy that a patient is willing to be pro active with their healthcare,as it (should) help them to better help their patient. Thankfully the last few doctor's,albeit most of them ER doctors that shouldn't even have a clue what is going on,have been quite helpful and quite thankful that I was so willling to try to engage them in discussion about what was happening to me.I have even had a couple of ER docs actually thank me for teaching THEM something..which was a little unnerving..lol I understand you don't have insurance,but if it is possible,and this DR gets "hot" or otherwise uncomfortable with you sharing what you know and have discovered,see if you can be referred to someone else.No sense dealing with a GP that is a ego hound or just plain hard headed. Good luck and I pray that is GP will be happy you are so proactive and willing to help them help you.
purpleworld
purpleworld

So, I went to the assigned GP on Monday, and she was familiar with HS. She self-righteously "schooled" me on how I can get rid of the impairment by illustrating the surgery that removes hair follicles. She had me do stupid physical tests that resembled dui tests and forcefully lifted my arms to see if they would go up and down. I yelped and took off my shirt to show her how she made my uglies leak through the bandages. She opened the door and called for someone to bring band-aids then asked to see the ones on my bum. I turned around to show her with a smirk-I knew it would explode on her (hee-hee)...and it did. Next thing I knew, she said "yikes you're draining!" and she swiftly removed her gloves and zipped outta the room before i knew what happened. Didn't see her again after that. I just felt overall like she said nothing that would help my case in the report. With every question she asked, I gave an answer that only got shot to hell with her smart alecky solutions. Who asked her for advice? Just write my responses for crying out loud and stop trying to negate my symptoms! I was the 1st patient in the office, so when I came out I saw a waiting room full of impaired people who were hoping she would be the key to an approval letter in the near future. When hell freezes over i'm sure-i'm already preparing for my appeal.
deleted_user
deleted_user

That is jsut horrible! I am really upset by her lack of tact and compassion! How the hell do these idiots get through medical school anyway?!?! Sigh.
I can certainly see why you would need to gear up and be prepared for the appeal.. however I sincerely hope that the cyst bursting on her woke her smart ass up enough to see that you are definately in need of help and her "approval".
I am sorry that she acted the way she did.. you definately didnt need that, we have enough to deal with without smart asses like that!
Huggs
ShannonA
ShannonA

If you can..DUMP HER LIKE A BAD DINNER DATE!! I am suprised, although not really , at the way she acted. NO DOCTOR should run out of the room on a patient like that. The only way I could think that type of response would be appropriate is if you were sitting there trying to slice her throat open with a carving knife. I am so sorry you had to go through this BS with your GP. *HUGS*
hmfeather
hmfeather

i was basically told by my gp that since there was no cure, she didnt want to see me anymore because she said there was nothing else she can do for me. so i dont see anyone anymore. because noone will see me. im on ssi for HS and PTSD so if i get reviewed by social security and they ask why im not seeing anyone about it, im going to tell them why.
purpleworld
purpleworld

You should have her give you a written statement of why she is breaking up with you...in case someone gets a case of amnesia down the road during review time
deleted_user
deleted_user

I have had my fair share of stupid dr's.
*sighs*
I don't have insurance, so I can't afford to go back to my specialist, so I went to the family dr and was telling her how bad it's been and that I have cysts on my thighs that make it hurt to walk and she told me that excercise would make it better and as far as the pain, I quote, "DEAL WITH IT!"
purpleworld
purpleworld

Wow, what a bitch
deleted_user
deleted_user

Beloved:
ok, excuse my upcoming statement here for it is said out of extreme anger.. FK that STUPID doctor!! She is a total and complete MORON when it comes to HS!! Exercise will NOT make your HS better, if anything it will make it WORSE unless you do it properly! And as for the pain.. she needs her license pulled for even suggesting to someone with HS to "deal with it"! I would like to see her stupid ass give birth to a 20 pound baby EVERY day with NO pain medication... this is the ONLY analogy I could come up with where it sounds like it would hurt even 1/100th of what HS does!!
Whew.. ok, now that I have vented and got that off my chest I will refrain from remarking on that idiot again, unless provoked! LOL!
Ok, first of all, you say that HS intereferes with almost every aspect of your daily living.. and that includes holding down a job.. I read your profile! ;-)
Anyway, YOU QUALIFY for medicaide! It is a STATE funded medical insurance that will ensure you get the proper care you need.. even if you can NOT afford to pay for it! The STATE WILL!!
Go to your local welfare/ social services office and APPLY! Do it today! Be 100% honest with your caseworker.. even SHOW her your HS if necessary (I showed my case worker mine because she said that I would not qualify because of my age).. I was too old to be under the childrens plan and too young to be under the elderly plan.. however they DO have a plan that WILL accept you.. it is for people with Terminal/Debilitating OR Disabliling diseases that can not afford health insurance. One look at my HS and she had me signed up and accepted in just a few days! I know you too will qualify.. do whatever it takes to make sure you do! Make them listen to you!
Once you get on MEdicaide you will then be able to find a doctor who will become a team mate in your fight against HS! You can even see Specialists with Medicaide paying for it!
I do it ALL the time!
Don't take no for an answer! And DONT stop looking for a doctor who will HELP you, not harm you more!
deleted_user
deleted_user

I get what you are saying Rebecca and by far she is the worst doctor I've seen yet.... although I've seen some more idiots as well.

She also told me walking was the best thing I could do for feet that were swollen 2wice the normal size and refused fluid pills. I put them up, which was the exact thing she told me not to do, and magically they are normal again. I want her to try to walk for 30 minutes a day with 2 water balloons as feet. That ish hurts!

Anyhow. I'm working on getting things straightened out.
purpleworld
purpleworld

I forgot to mention that I was denied of course. So I have decided not to appeal and to work for as long as I can. Many people are worse off than me and I frankly can't live off of the monthly check anyway. Hopefully at some point I will find a combo of things that will stop the progression of additional stages.