PCOS and Hidradenitis suppurativa

SheTiger68 · 09-05-2005, 12:55 PM

Good Labor Day, all. I was diagnosed with PCOS last year, and a few weeks ago I was also officially diagnosed with Hidradenitis Suppurativa. I feel like I have become a private detective in the last year, as researching all the medical conditions I have has led me on a long journey. I also suffer from migraines, have since I was 13, and a few months before my PCOS symptoms erupted with a madness, my neuro put me on Topomax. Well, that has all but gotten rid of my migraines, but I read on some post that anticonvulsant meds, like what I'm taking, can have a negative impact on PCOS. Is this true?
And can my PCOS, a hormonal problem, have triggered my HS to flare up so bad in such a short period of time? For anyone who is an HS sufferer, you'll understand me when I say I have had minor flare-ups since my early twenties, nothing ever bad enough to see a doc about. They would flare, erupt, drain, then heal, no prob. My mother had the condition, HS, so bad, she had surgery many years ago to have her sweat glands removed from her groin and armpit areas. She has had no recurrances with the HS since then.
I am learning that like PCOS, HS could be a hormonal thing. It seems to be worse for us overweight gals, and AF seems to make the flare-ups much worse. In the interest of not needing multiple skin grafts, incision for drainage, and radiation treatments, I was thinking of talking to my endocrinologist when I go for my first appointment this month and asking what the benefits of a total hysterectomy might be. No hormones, no PCOS and HS, right?
My derm, treating me for the HS, looked over my medical history and said he was referring me to a friend of his, an endocrinologist. He said with my medical problems (migraines, HS, PCOS, hyperglycemia, etc), that it could all be tied in not just with hormones, but my endocrine system. He said get that and my hormones straightened out, and I'll be the equivalent of cured, though there really isn't a cure for anything I have.
But I am so tired of seeing doctor after doctor, getting diagnosed with something else painful, expensive, and non-curable, I figured if it was related all to my hormones and endocrine system, if I eliminate what creates the hormones, that destroys the underlying cause for my ailments. At least in theory.
I'd like to know if anyone else has been having these problems, and if so, how you are treating them, and how they are treating you. Even though my family says they don't know how I manage to keep things so positive and be there for my husband, kids, family, work, and friends feeling like I do phyically, some days I want to throw myself on the bed and just cry until I'm dehydrated. For the most part, I just simply realize it's something I have to deal with, and go on with my life. Other times I want to call a surrender, and just give up. I don't want to play this game anymore, it's not fun now.
Sorry to rant and rave, I guess putting this down in black and white keeps me from spilling it all to my family and making them feel useless in the face of it all. Thanks for any input you all might have.

AlyBlu · 09-05-2005, 01:54 PM

Yup - I've got HS (nasty narly little buggers!).

A total hysterectomy will not "cure" or take away these problems. PCos has alot also to do with your adrenal glands (stress hormones make both conditions worse) and the pancreas - with insulin being a huge factor.

PCOS is a systemic endocrine problem - you can not remove one piece and have it all go away.

HS is also thought to be tied into insulin (as well as the stress hormones).

Getting the hormones under control can significantly help (as you Derm said) but that is so much easier said than done.

There are some great HS support groups on YaHoo! (and I am here for you!)

I use the new Monistat powder - it helps to dry up the lesions and really helps with skin irritation. I also really moderate my stress. Caffeine and chocolate make my HS much worse!

Let yourself have the good cry (it is good for the stress hormones) and then come talk to us - we are here for you!

Bright blessings Cyster!

Eva37 · 09-05-2005, 04:58 PM

Hi

Welcome to sc.

me too!! me too!! I have pcos, as well as locah etc and hs. Not a nice mixture!!

Know how you feel though, sometimes really happy - other days it all gets on top of you!!

I had a massive hs removed from my right arm pit a few years back, and notwhave another but this time on the outside. I also have one on my left arm - but haven't had that surgically removed. yet............

pm me if you want.
Eva

AK · 09-05-2005, 11:33 PM

I reported on an earlier post that my doctor says boils are a sign of insulin resistance. She put me on metformin - worked my way up to 2000 mgs. I haven't had a boil since! This is after suffering with them pretty much constantly for more than 10 years.........It wasn't especially easy to take the metformin, as you may have heard....or experienced yourself? The side effects were rough, but my doctor asked me to give it a good 4 months try - which I did, even though I got to know my toilet pretty well, and felt pretty badly. I Have been on metformin for more than 3 years now (with few side effects now!) ...and haven't had a flare up since! But I know not everyone can handle met's side effects.

AmyK

Wysteriavine · 09-06-2005, 08:24 AM

You aren't ranting and raving! It's difficult to be sick and take medication.
I am a chronic migraine sufferer and bi-polar to boot. They tried giving me several anti-convulsants for both conditions. Until my neurologist noticed the note of PCOS on my chart. He immediately stopped me on depakote because he said it actually increased the incidence of PCOS in otherwise healthy females (especially hirsutism..ugh). I thought that was really scary and decided to try ANYTHING other than anti-convulsants for my migraines/bi-polar.
I do know they can give you anti-depressants like Elavil as a daily preventative therapy for migraines, though. A good website to look at for the migraines is- www.migraines.org it's got a lot of good information, if you haven't seen it.
I can't treat my migraines with anything on the market right now other than abortive medications like Imitrex or Amerge. I'm sorry I can't be of more help!

SheTiger68 · 09-06-2005, 09:50 AM

It's actually quite useful info, since I noticed after I started on the Topomax that my hirsutism did get progressively worse. I just thought it was because I was getting older, and it was catching up with me.
I know it's hard for these docs to balance all meds because of all the medical conditions, that's why I'm hoping the endocrinologist can help. Maybe if I just see one doc, and they can treat my problems as a whole, instead of me seeing different docs for individual parts, I can get it all under control.
I haven't been on metformin, since my family doctor says I have "pre-diabetes", though he did say he feels my "attacks" are a result of hyperglycemic swings. He told me that my one fasting blood sugar test did indicate I was pre-diabetic, but the numbers didn't indicate actual diabetes or insulin resistance. However, my internest, gyn and derm, none of whom have done any labs, all felt independently that I am diabetic, but that a GP isn't qualified to make that determination. My derm says the endo will check for that, so hopefully I can stop walking on eggshells and carrying tubes of icky-tasting stuff around with me for when my blood sugar spikes.
I really do feel so much better getting input from you all. It makes it easier to get through the day knowing someone's got my back, lol!