Re: To Angie/Group--hormones & rosacea (my story)

[Guest guest]

hello.

yes, i believe a lot of my problems stem from hormone problems. i had

very severe cystic acne as a teenager. i took a huge amount of accutane

which seem to get rid of most of the acne. i took 3 courses of accutane.

i also experienced loosing hair on my head and getting excess hair on my

face and body. i didn't have my period for a year (oddly enuff i had no

major rosacea flares when i did not have my period). all those signs were

signs of androgen excess. i went to an endocrinologist (hormone doctor)

who tested my hormone levels. all of my male androgen hormone levels were

extremely high, most were 3 times normal for a woman. i had an MRI to

look for a hormone secreting tumor. all they found was enlarged, cystic

ovaries.

since then, 2 years ago i started taking Aldactone to block the hormones.

the medicine helps with the hair growth on my face and i don't lose as

much head hair. it also helps with acne. however, one of the side effects

is....flushing. during taking the aldactone, i took extreme amounts of it

against the doctors prescription order, so much of the drug it stopped my

period for a year. during that time i had no major rosacea flares.

but i was taking up to 500mg a day. you are only supposed to take 200mg a

day. so, i dropped back to my prescribed dose of 200mg. since then i

started getting weird periods.

not all of my flare-ups are period related though.

i have never taken birth control. i worry about side effects and that

they can make my problems worse, like acne and such. even the pills

prescribed for it can make alot of people worse instead of better. i want

to ask about getting a hysterectomy, but i'm not sure if that will make

it worse. i don't know anything about all that (i've never been to a

OBGYN) and i don't know if they would do that for me since i'm only 25. i

do not want any children, so that takes care of that:-)

i've been tested for Lupus, but it came back negative. all other medical

problems i have are neuromuscular which should not effect my rosacea. i

have something similar to Parkinson's Disease and have been in a

wheelchair for 10 years now, but i take no medication for anything so it

can't be that.

i also have severe scoliosis and everyone wants me to have spinal fushion

surgery, but i have my doubts if that is worth it. basically, i'm worried

of doing anything that would make my rosacea pain worse.

i have never been tested for allergies. i was diagnosed with rosacea,

ocular rosacea and excema so far.

what kind of birth control are you taking? as i said i've never been

through the OBGYN thing and i don't know anything about birth control. i

am sooooo nervous because i *do not* want my severe acne to return. i was

extremely disfigured by it. birth control can cause acne. what about a

hysterectomy? i know that can stop my periods?

i'm at a loss.

i made an appointment with Dr. Bitter Sr. in Los Gatos for April 8th. the

soonest i could get in there.

i wish so bad i had an answer.

write back if you can add anything more.

Angie

On Mon, 18 Mar 2002 13:25:58 -0800 (PST) wendy r wendyr208@...>

writes:

> Hi Angie and everyone,

>

> Glad I found this board--I can relate:

>

> Angie, you say you flare before your period and you have severe

> hormonal

> problems? That might be the cause of your flushing- -at least that

> is what

> happened to me. I was on the birth control pill for years with great

> skin

> the whole time I was on it (diagnosed with rosacea, but was only

> midly red

> and it never bothered me) and then I decided to stop the pill. My

> skin got

> progressively worse over the next year to the point of severe nose

> and

> cheek edema and ocular problems. My eyes and face burned, but I was

> not

> red (I think my edema was so bad that my skin was white instead of

> my

> usual red). My face was basically disfigured--no exageration. I did

> not

> recognize myself in the mirror!!I was really hot and sweaty all the

> time--(sort of like having hot flashes, but more like just

> flushing). I

> also had many other problems that turned out to be hormone related:

> headaches, chronic fatigue, panic attacks, foggy thinking-list goes

> on.

> Anyway, I went to many doctors with no help. All my primary doctor

> did was

> test me for menopause, and then told me I wasn't in it (I am 31 so

> that

> came as no surprise!). I tested negative for all food and airborne

> allergies. I finally figured it out that rosacea was the cause of my

> facial swelling and I was able to link it with stopping the pill, so

> I

> went back on. Not only did all my other problems go away, but my

> face went

> back to normal too. The pill slowly cooled my body down and I

> stopped my

> flushing completely. Within 4-5 months my face was almost normal

> (except I

> still had some eye problems), but my nose was small again and my

> cheeks

> were thin-I looked like me!

>

> Anyway, to make a long story short: hormones were my trigger and

> might be

> yours too. Any hormone fluctuations/change in hormone balance can

> disturb

> your SNS and body temperature--which causes your body to heat up

> which

> leads to flushing. The most severe is hot flashes, but also you can

> just

> be overly sweaty or mildly hot and will flush too. Angie, are you

> being

> treated for your hormonal problems? Have you ever been on the pill?

> If

> not, I would consider going on the birth control pill to regulate

> your

> hormones (monophasic preferably, those are the same hormones

> everyday--no

> flucuations).

>

> Most important: you need to find the cause of your flushing, so the

> edema

> and burning/pain will stop.

>

> Hope this helps,

>

>

>

>

>

>

> __________________________________________________

>