I'm coming up on the second week. Still having moments of panic at imagined side effects. But my period finally came last night. I was worried it would come at work and I'd be so excited that I'd tell the first person I saw. I don't think I've been this glad to see it since it first appeared and I could count myself among the ranks of my "grown up" friends. I finished an ambitious personal challenge that same night, but I was more thrilled about this. I'm in pain that ibuprofen can only take the edge from, and I feel drained and unfocused, but that's normal for me when it comes, and I'm stupidly relieved. It bothered me this much when I was warned it would mess up my cycle, so I can't imagine how women feel when they don't know why they're late.
Thing is, who knows when my next one will come? Three weeks? Three months? I'll have to be on a constant watch, lest I be caught off-guard. That is one of my worst fears, up there with public bathrooms with no doors on the stalls. Except it's a fear I've survived: imagine an inexperienced teenager, a 10+ hour flight to Indonesia, and white jeans. Yeah, I've been there. Doesn't stop me from agonizing over it. It's going to be a fun few months.
I haven't noticed anything else. I had a dream last night that it was making me grow more hair, not less, and it was making a thick, healthy rug of my ribs. No sign of change either way.
I was introduced to a blog this week that totally blew me away. It's not about hirsutism or polycystic ovaries for once. 65RedRoses is written by a young woman with cystic fibrosis. I'm still reading through it, and it makes me feel incredibly grateful for what I have, and so humbled and inspired by her courage and determination. Please take a look; it's worth your attention. I'm hoping to be back later in the week to update again and talk about something other than medication.
November 30, 2009
November 26, 2009
About Spiro
I reported my perceived side effects to the endocrinologist, and relayed through the office staff she was unsurprised by the absence of my period. The stomach cramps, though, she said would not be caused by the medication, so it sounds like it's just me scaring myself. Just contacting the endo made me feel much better.
So, as promised, an entry about spironolactone for those who are just learning about it.
I'm just going to share what I heard from the endocrinologist and the pharmacist I spoke to for clarification. As always, none of this should be substituted for your own doctor's advice.
Spironolactone (aka Aldactone, Novo-Spiroton, Spirotone, spiro) was first developed to treat certain types of fluid retention and high blood pressure. Its androgen-blocking features were noticed later. It is a mild water pill, but is apparently still being prescribed for some kinds of hypertension, as well as androgen related issues like acne and hirsutism. How it works for those of us with hormone imbalances is it competes with the male hormones for binding to androgen receptors. If androgen receptors don't bind with those hormones, they can't cause male characteristics. This is not a cure for hirsutism, but it can reduce the amount of hair, it's texture, color, and rate of growth. It sounds like it's different with every woman. My endo also solidified what I've read that hair removal methods like laser can become more effective in conjunction with this treatment.
Because it's a diuretic, the endo said some women notice they're peeing more in the first couple of weeks. It doesn't flush out potassium like other diuretics do, so it can pull your electrolytes out of whack and should not be used if you already have an issue with that--which is apparently rare. The endo said I would not need to avoid potassium rich foods, but the pharmacy's papers on the drug recommended limiting the intake of things like potatoes and bananas, and not taking potassium supplements. I'd rather be safe than sorry. In any case, electrolytes need to be watched carefully via blood tests. (Yay.)
Although this is a water pill and sources say NSAIDs (non-steroidal anti-inflammatory drugs like ibuprofen and aspirin) should be avoided, that is only because those types of pain killers raise your blood pressure. If you're not taking Spiro for high blood pressure, using NSAIDs should be fine (good news for me, I love my Advil). When in doubt, call your pharmacist like I did. The endo also said I shouldn't worry about any other drug interactions, and the pharmacy paper does list some obscure ones--nothing I recognize.
Also, because it's meant to lower blood pressure, some women have reported dizziness or fainting. The endo also said the rare woman has complained of tiredness. Upset stomach is another one, so taking it with food is supposed to help. And of course, there's the wonderful irregular cycles. If these sorts of things persist or get worse, that's when you're meant to call your doctor. That's why I'm waiting it out. The body needs time to adjust.
Of course, I've also heard of women who truly hated being on Spiro. I have read about some pretty wacky side effects on the Internet, but responses are so varied that it's hard to know if Spiro is right for you until you try it. The very best thing is to talk to your doctor.
Everything else I (think I) know about Spiro I learned from these sites:
So, I hope that helps the curious. If anyone else has been on spiro and wants to add something, you're welcome to. Until next week.
So, as promised, an entry about spironolactone for those who are just learning about it.
I'm just going to share what I heard from the endocrinologist and the pharmacist I spoke to for clarification. As always, none of this should be substituted for your own doctor's advice.
Spironolactone (aka Aldactone, Novo-Spiroton, Spirotone, spiro) was first developed to treat certain types of fluid retention and high blood pressure. Its androgen-blocking features were noticed later. It is a mild water pill, but is apparently still being prescribed for some kinds of hypertension, as well as androgen related issues like acne and hirsutism. How it works for those of us with hormone imbalances is it competes with the male hormones for binding to androgen receptors. If androgen receptors don't bind with those hormones, they can't cause male characteristics. This is not a cure for hirsutism, but it can reduce the amount of hair, it's texture, color, and rate of growth. It sounds like it's different with every woman. My endo also solidified what I've read that hair removal methods like laser can become more effective in conjunction with this treatment.
Because it's a diuretic, the endo said some women notice they're peeing more in the first couple of weeks. It doesn't flush out potassium like other diuretics do, so it can pull your electrolytes out of whack and should not be used if you already have an issue with that--which is apparently rare. The endo said I would not need to avoid potassium rich foods, but the pharmacy's papers on the drug recommended limiting the intake of things like potatoes and bananas, and not taking potassium supplements. I'd rather be safe than sorry. In any case, electrolytes need to be watched carefully via blood tests. (Yay.)
Although this is a water pill and sources say NSAIDs (non-steroidal anti-inflammatory drugs like ibuprofen and aspirin) should be avoided, that is only because those types of pain killers raise your blood pressure. If you're not taking Spiro for high blood pressure, using NSAIDs should be fine (good news for me, I love my Advil). When in doubt, call your pharmacist like I did. The endo also said I shouldn't worry about any other drug interactions, and the pharmacy paper does list some obscure ones--nothing I recognize.
Also, because it's meant to lower blood pressure, some women have reported dizziness or fainting. The endo also said the rare woman has complained of tiredness. Upset stomach is another one, so taking it with food is supposed to help. And of course, there's the wonderful irregular cycles. If these sorts of things persist or get worse, that's when you're meant to call your doctor. That's why I'm waiting it out. The body needs time to adjust.
Of course, I've also heard of women who truly hated being on Spiro. I have read about some pretty wacky side effects on the Internet, but responses are so varied that it's hard to know if Spiro is right for you until you try it. The very best thing is to talk to your doctor.
Everything else I (think I) know about Spiro I learned from these sites:
- Wikipedia - A better explanation of how Spiro works
- HairTell Forums - Positive results and cautions here
- Drugs.com - Info similar to what the pharmacy handed me
- Rxlist.com - An even more detailed version (and I like the organization better)
- Acne.org Forum - Acne related, but still interesting. Questions seem to be answered faster.
So, I hope that helps the curious. If anyone else has been on spiro and wants to add something, you're welcome to. Until next week.
November 24, 2009
Week One on Spiro
First week on spiro is coming to a close. Have I noticed anything?
Well, I'm late. My cycle usually ranges from 23 to 30 days with an average of 27, but I was expecting it the day after I started on spironolactone and it still hasn't come. 32 or more days is a little unusual. I'm not relishing being in a state of suspended PMS. I doubt spiro can work that fast but I'm such a hypochondriac that it's all I can think about. The endocrinologist warned me irregular cycles might be a symptom, and if it bothered me, I could go on birth control pills as well. A lot of what I've read says that irregular cycles more often manifest in more frequent menses, rather than absent ones. Either way, it bothers me. I hate not knowing what's going on inside my body.
I might very well drive myself crazy going on this stuff.
I'm also more thirsty. I'm drinking more water than I ever had the urge to before. (This is good, it's a diuretic, so I don't want to get dehydrated.) It's possible I'm peeing more, too, but that's also one of my own personal PMS symptoms so I can't be sure.
Another fun thing is I'm getting minor abdominal cramps that have nothing to do with feminine workings. They're more akin to the types of cramps I used to get when I was diagnosed with Irritable Bowel Syndrome in college. The thing is, so much of that is caused by stress that I don't know if I'm just freaking myself out or if this is another side effect. Am I on a path to a whacked out digestive system again? I think I'd rather live with the hair.
The thing is, I know I do this to myself. I angst about my health, which makes things worse. After the eighth grade, I spent the summer lying on the couch, my stomach a mess, and I was afraid to go to sleep in case I didn't wake up again. I was tested for parasites and all sorts, but there was absolutely nothing wrong with me. So I don't trust my own reactions--I'm usually just being a big chicken.
Research doesn't help me. The medical sites provide information, but they're not meant to assure you the medication is right for you or that you shouldn't take it. That's why the side effects lists are so scary. A lot of people who post about spiro in forums have negative stories to share. I think that's making it worse for me.
I just need to relax, think positive, continue watching my body, and realize that I am doing this by choice. I can stop at any time, but I cannot be too afraid to give it a real try.
Anyway, I'd wanted to talk a bit about spiro in general, for the benefit of those who might be hearing about it for the first time. I think I'll do that in the next couple of days.
Now I'm going to enjoy the Monday night sit-coms and try to not think about this anymore. :)
Well, I'm late. My cycle usually ranges from 23 to 30 days with an average of 27, but I was expecting it the day after I started on spironolactone and it still hasn't come. 32 or more days is a little unusual. I'm not relishing being in a state of suspended PMS. I doubt spiro can work that fast but I'm such a hypochondriac that it's all I can think about. The endocrinologist warned me irregular cycles might be a symptom, and if it bothered me, I could go on birth control pills as well. A lot of what I've read says that irregular cycles more often manifest in more frequent menses, rather than absent ones. Either way, it bothers me. I hate not knowing what's going on inside my body.
I might very well drive myself crazy going on this stuff.
I'm also more thirsty. I'm drinking more water than I ever had the urge to before. (This is good, it's a diuretic, so I don't want to get dehydrated.) It's possible I'm peeing more, too, but that's also one of my own personal PMS symptoms so I can't be sure.
Another fun thing is I'm getting minor abdominal cramps that have nothing to do with feminine workings. They're more akin to the types of cramps I used to get when I was diagnosed with Irritable Bowel Syndrome in college. The thing is, so much of that is caused by stress that I don't know if I'm just freaking myself out or if this is another side effect. Am I on a path to a whacked out digestive system again? I think I'd rather live with the hair.
The thing is, I know I do this to myself. I angst about my health, which makes things worse. After the eighth grade, I spent the summer lying on the couch, my stomach a mess, and I was afraid to go to sleep in case I didn't wake up again. I was tested for parasites and all sorts, but there was absolutely nothing wrong with me. So I don't trust my own reactions--I'm usually just being a big chicken.
Research doesn't help me. The medical sites provide information, but they're not meant to assure you the medication is right for you or that you shouldn't take it. That's why the side effects lists are so scary. A lot of people who post about spiro in forums have negative stories to share. I think that's making it worse for me.
I just need to relax, think positive, continue watching my body, and realize that I am doing this by choice. I can stop at any time, but I cannot be too afraid to give it a real try.
Anyway, I'd wanted to talk a bit about spiro in general, for the benefit of those who might be hearing about it for the first time. I think I'll do that in the next couple of days.
Now I'm going to enjoy the Monday night sit-coms and try to not think about this anymore. :)
November 17, 2009
First Visit to an Endocrinologist
Summary: No diagnosis yet. More tests, and I'm going on an androgen blocker.
And now for the long, detailed version, which I'm sure everybody loves. For those who haven't read my entire story, an endocrinologist is the farthest I have come in the nigh-decade since the hair began to grow. I was so excited and worried for this appointment. I was afraid to know what the cause was, and afraid there would be no answer. I was afraid the endo was going to be curt, disinterested, and rush me out of there. (By the way, don't believe everything you read on sites like RateMyMD.) I was afraid to get a prescription, and afraid there wouldn't be one. Needless to say, I was all over the place.
The closer I got to this appointment, the more emotional I became. I felt more strongly than ever that I wanted to tell everybody about this secret I keep, even though I figured this wouldn't benefit anyone. And as I ran through outcomes in my head, I started to cry. Often. The day before my appointment I was unsteady and flustered and could think of nothing else. I don't even remember what I did at work. After dinner I wrote down questions, previous tests, and anything else I wanted to remember for the appointment tomorrow. I didn't refer to them once in the consultation, but the act of writing them down cemented them in my head.
From the moment I put my boots on, to wandering through the maze of rooms on the medical floor of the building, to sitting in the waiting room of the clinic, my chest was tight, my heart hammering, and my hands and feet restless and damp like I was about to give a speech. One of the office staff measured my height and weight as soon as I checked in, and then I sat and read. I was there early--that's the only reason I waited. I watched the few women who came in and out in my periphery, wondering if anyone was here for the same reason. I couldn't tell. When they called me into an examining room, and I had barely the time to sit down and squint at a poster of the thyroid gland before the endo came in and shook my hand. She knew what I was there for, had my blood tests in her hand, and took notes as we went over my symptoms, my medical and family history. Then she did a brief physical exam, and we discussed where she wanted to go from here and let me ask some questions. She took the time to address every concern I had, and was happy to explain everything. And considering how often she must have to--she says hirsutism is one of the most common things she sees as an endocrinologist--I was extra impressed.
We talked about the likelihood of PCOS. She explained it was a diagnosis of elimination, and supported what I've read about not all the symptoms needing to be present. In my case, since I only have the hair as a symptom, an ultrasound won't be necessary. All I am needing to manage is the hormones. The endo still wants to eliminate the adrenal glands as the producers of the testosterone. So that means another blood test, which has to be done during the first two weeks of my cycle. I'll also have to get tested for potassium levels, since she wants to start me on the androgen blocker Spironolactone, which is a potassium-sparing diuretic. But assuming those tests come back normal, I shan't be hearing from the endo until our six month follow-up.
I went right to a pharmacy to fill the prescription. The pharmacist, a man, peered at it and said, "It's some kind of water pill?" It is, so I nodded, though that's not what I'm taking it for. The instructions advised me not to take it after 6 pm so I'm not getting up in the night to pee. So tomorrow will be the day I start. The medication will take a few months to start to work, if it works at all. But I will be sure to report on any changes that I notice. It's not a cure, but it should reduce the amount of hair and rapidity of its growth. I often expect the people who might read this to have already done some research on hirsutism's causes and treatments. Perhaps I should spend some time making entries on that sort of thing?
I'm feeling good, overall. Taking medication of any kind always frightens me, but after so many years, I think I owe it to myself to try it. It's all about making progress for me, and finding the best way to live with my hair. So here we go...
And now for the long, detailed version, which I'm sure everybody loves. For those who haven't read my entire story, an endocrinologist is the farthest I have come in the nigh-decade since the hair began to grow. I was so excited and worried for this appointment. I was afraid to know what the cause was, and afraid there would be no answer. I was afraid the endo was going to be curt, disinterested, and rush me out of there. (By the way, don't believe everything you read on sites like RateMyMD.) I was afraid to get a prescription, and afraid there wouldn't be one. Needless to say, I was all over the place.
The closer I got to this appointment, the more emotional I became. I felt more strongly than ever that I wanted to tell everybody about this secret I keep, even though I figured this wouldn't benefit anyone. And as I ran through outcomes in my head, I started to cry. Often. The day before my appointment I was unsteady and flustered and could think of nothing else. I don't even remember what I did at work. After dinner I wrote down questions, previous tests, and anything else I wanted to remember for the appointment tomorrow. I didn't refer to them once in the consultation, but the act of writing them down cemented them in my head.
From the moment I put my boots on, to wandering through the maze of rooms on the medical floor of the building, to sitting in the waiting room of the clinic, my chest was tight, my heart hammering, and my hands and feet restless and damp like I was about to give a speech. One of the office staff measured my height and weight as soon as I checked in, and then I sat and read. I was there early--that's the only reason I waited. I watched the few women who came in and out in my periphery, wondering if anyone was here for the same reason. I couldn't tell. When they called me into an examining room, and I had barely the time to sit down and squint at a poster of the thyroid gland before the endo came in and shook my hand. She knew what I was there for, had my blood tests in her hand, and took notes as we went over my symptoms, my medical and family history. Then she did a brief physical exam, and we discussed where she wanted to go from here and let me ask some questions. She took the time to address every concern I had, and was happy to explain everything. And considering how often she must have to--she says hirsutism is one of the most common things she sees as an endocrinologist--I was extra impressed.
We talked about the likelihood of PCOS. She explained it was a diagnosis of elimination, and supported what I've read about not all the symptoms needing to be present. In my case, since I only have the hair as a symptom, an ultrasound won't be necessary. All I am needing to manage is the hormones. The endo still wants to eliminate the adrenal glands as the producers of the testosterone. So that means another blood test, which has to be done during the first two weeks of my cycle. I'll also have to get tested for potassium levels, since she wants to start me on the androgen blocker Spironolactone, which is a potassium-sparing diuretic. But assuming those tests come back normal, I shan't be hearing from the endo until our six month follow-up.
I went right to a pharmacy to fill the prescription. The pharmacist, a man, peered at it and said, "It's some kind of water pill?" It is, so I nodded, though that's not what I'm taking it for. The instructions advised me not to take it after 6 pm so I'm not getting up in the night to pee. So tomorrow will be the day I start. The medication will take a few months to start to work, if it works at all. But I will be sure to report on any changes that I notice. It's not a cure, but it should reduce the amount of hair and rapidity of its growth. I often expect the people who might read this to have already done some research on hirsutism's causes and treatments. Perhaps I should spend some time making entries on that sort of thing?
I'm feeling good, overall. Taking medication of any kind always frightens me, but after so many years, I think I owe it to myself to try it. It's all about making progress for me, and finding the best way to live with my hair. So here we go...
November 13, 2009
Why I Hide It At Home
Yesterday evening after work, Allerleirah was talking to her family about a difficult customer...
Allerleirah's step-sister: "Did she have a beard?"
Allerleirah: "What? What does that have to do with it?"
Allerleirah's step-sister: (Completely jovial, as if this is a great joke.) "Once [a coworker] and I had a woman come in with a beard, and we did rock paper scissors to see who would deal with her. [Coworker] lost."
Allerleirah: "Why? Was she unpleasant?"
Allerleirah's step-sister: (Gleefully.) "No."
Allerleirah: (Trying to hide growing offense, not very skillfully.) "So what does that have to do with it?"
Allerleirah's step-sister: "She was just ugly!
Allerleirah: "Don't you think that's a little bit prejudiced? She can't help it--"
Allerleirah's step-sister: "That doesn't mean you have to let yourself go just because you're old! She could shave!"
Allerleirah: (Through clenched teeth.) "Maybe she's tired of shaving."
Allerleirah's step-sister: "She could wax!"
Allerleirah: "Maybe she was waiting for the hair to grow long enough for her to wax."
Allerleirah's step-sister: "No, she was definitely growing it out."
...Soon I gave up trying to argue. She obviously wasn't going to feel bad about it, and I was afraid it was becoming obvious this was personal to me, when to her it was just a laugh. I was tempted to whip the rug out from under her with the truth, but in the end decided it wasn't worth it. The unnerving thing is, since she moved back in with us I've come so close to coming down to family dinners when I haven't shaved. I've been tired of hiding just because my skin needs a break. I was forgetting the very strong feelings I've always had that letting her know this thing about me will come back to bite me in the rear.
I simply don't trust her with it, and not just because she thinks a bearded lady is a good butt for a joke. That's pretty normal, pretty human. But the horrifying conversation was a piercing reminder of the shallowness and immaturity that make it so hard for people to accept what exists outside their comfort zone... and so hard for girls with hirsutism to be comfortable with themselves.
Maybe she thought bearded women are so rare that it's safe to mock them from a distance. They'll never touch her life. One day she's in for a surprise.
But for now, in my own home, I'll keep hiding it.
Allerleirah's step-sister: "Did she have a beard?"
Allerleirah: "What? What does that have to do with it?"
Allerleirah's step-sister: (Completely jovial, as if this is a great joke.) "Once [a coworker] and I had a woman come in with a beard, and we did rock paper scissors to see who would deal with her. [Coworker] lost."
Allerleirah: "Why? Was she unpleasant?"
Allerleirah's step-sister: (Gleefully.) "No."
Allerleirah: (Trying to hide growing offense, not very skillfully.) "So what does that have to do with it?"
Allerleirah's step-sister: "She was just ugly!
Allerleirah: "Don't you think that's a little bit prejudiced? She can't help it--"
Allerleirah's step-sister: "That doesn't mean you have to let yourself go just because you're old! She could shave!"
Allerleirah: (Through clenched teeth.) "Maybe she's tired of shaving."
Allerleirah's step-sister: "She could wax!"
Allerleirah: "Maybe she was waiting for the hair to grow long enough for her to wax."
Allerleirah's step-sister: "No, she was definitely growing it out."
...Soon I gave up trying to argue. She obviously wasn't going to feel bad about it, and I was afraid it was becoming obvious this was personal to me, when to her it was just a laugh. I was tempted to whip the rug out from under her with the truth, but in the end decided it wasn't worth it. The unnerving thing is, since she moved back in with us I've come so close to coming down to family dinners when I haven't shaved. I've been tired of hiding just because my skin needs a break. I was forgetting the very strong feelings I've always had that letting her know this thing about me will come back to bite me in the rear.
I simply don't trust her with it, and not just because she thinks a bearded lady is a good butt for a joke. That's pretty normal, pretty human. But the horrifying conversation was a piercing reminder of the shallowness and immaturity that make it so hard for people to accept what exists outside their comfort zone... and so hard for girls with hirsutism to be comfortable with themselves.
Maybe she thought bearded women are so rare that it's safe to mock them from a distance. They'll never touch her life. One day she's in for a surprise.
But for now, in my own home, I'll keep hiding it.
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