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cystic acne is hell-on-earth

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Spiro

Okay, I am cutting and pasting this blog from my myspace account as well. I just typed this today: I went during my lunch break Friday to my female doctor in Miami to take a pregnancy test. My dermatologist is requiring a pregnancy test before he will let me start Spironolactone. (Since it is so harmful to a male fetus due to the fact that it fights male hormones...I guess he needs documented proof of a neg. test before he will prescribe. It's odd to me that he didn't need this last time...but whatever. My fate lies in the hands of these medical Gods with all the power.) Anyway, Dr. K's office sent me next door to the lab. That lab said "If you want your results sent back today, go across the street to the other lab. We don't send ours until after 4." So I walked over to the other lab. The receptionist lady took my lab order, looked at my insurance card, and told me the price. My jaw dropped. 160 bucks. For a pregnancy test? Can I just mail in a 5 dollar one from Wal-Mart? Ridiculous! But there was nothing I could do. I was there; I had to do it. At that time I was still blissfully and naively thinking that I could get it done and start Spiro THAT DAY. hahaha. Hilarious to think that the medical profession could be that competent. Yeah, I'm a little jaded right now. Anyway, I was sitting in the lab waiting area and I happened to look up and glance around. I saw an older man that caused me to do a double take. It was my grandpa but I didn't recognize him at first. "Pawpaw???" He looked up. He hadn't seen me either. It hurt when I realized I had had to glance twice to recognize him. My grandpa's health has seriously declined in the last few months and he's been through many medical tests and visits to specialists to try to figure out what is wrong with him. He has trouble breathing and is tired all the time. My grandpa is the type of person that needs to be busy, needs to be working...so the last 6 months have been extremely frustrating for him. I noticed he was dressed shabbily and his hair didn't look combed. (My grandpa doesn't even run to the bank without slacks and a collared shirt on. This is not him.) He seemed very weak and attempted to smile and converse with me. After a while they called him back for his last test of the day and I sat there and waited for them to call me back. I was starting to get nervous, since it was my lunch break. Also I had to pee very badly and had been holding it for quite some time, since I assumed this was a pee test. Then I started to think and worry about how bad my grandpa looked. When they finally called me back, she instructed me to sit in a chair, the kind you sit in to give blood. I said, "so this isn't a pee test?" "No dear, this is an HCG Serum test. We test the serum in your blood." "Oh." That explains a little bit why it was so flipping expensive. In hindsight, I should have gone to the Indian Clinic....where this stuff is free. But I still thought I was going to get on Spiro that day...and I really wanted to get on it YESTERDAY...especially since I had a new cyst growing by my mouth. I realize this is completely illogical since it takes several weeks for Spiro to work and it would not affect the already growing cyst by my mouth. But right now anything that will help my mental health...even a placebo...is a good thing. I was ready to start this stuff. So I did the test. She told me they would send it back to Dr. K's. As I was driving back to school I realized the fax number to the derms office was written on the top of the lab order they gave me. I started worrying that the lab would not send that exact form back and the receptionist would not know where to fax the results since she had not written it down anywhere else. Now, this seems like a ludicrous thing for ME to be worrying about...but I had had such BAD experiences with this female doctor's office that I had no reason to trust them on any level. So in between classes I tried to call the female doctor's (seems more proper than saying gyno's) office to make sure they knew where to fax the form. No answer. Tried to call them after school. No answer. I called the nurse at the derm. that was so nice. She told me that she probably wouldn't start harrassing them to send it until Monday. She would give them until Monday to send it. Awesome. So, something so simple that could have easily been faxed that day so I could fill my prescription wasn't. In hindsight I should have set it up so the lab could directly fax it to the derm's office. Actually in hindsight I would have gone to the Indian clinic, gotten a FREE blood HCG Serum test and had them fax it directly to the derm's office. Oh well. Live and Learn. After this is faxed over I will never go back to Dr. K's office again. I am going to start going to Dr. Thomas in Grove for all my female yearly needs. And I am actually going to go to him pretty shortly to get my tests run for PCOS, which after extensive research I am 98% sure I have. Anyway, all this has been pretty frustrating. Right now I have a cyst growing by my mouth and it has made me pretty emotional all day. And I have to try to hide all this because Dave does not understand at all and has no patience with it. I have parent teacher conferences Tues and Thursday night and once I get a cyst they are there for weeks unless I go get a cortizone injection...all the way in Tulsa..and miss work. Having one by my mouth is the MOST painful, most unsightly place and the hardest for me to deal with. So pretty much depression has set in. I am so ready to start this Spiro stuff and take control of my life. Everything on the message boards is completely positive and 85% of women with hormonal imbalances find complete relief from their acne. It does flare up again when they go off of it...and most women eventually do want to have children. But oh well. Right now I can't think that long term...I have to focus on the here and now. Read more:

jessi T

jessi T

09/18/2010

 

Frustrations

Okay, a lot has happened since my first blog post. I am going to paste a myspace blog in here. Sorry if some of the info. is a little repetitive: I feel like frustrations from the last ten years are coming to an end...and I am finally figuring out what's wrong with me. This has made me stronger...and yes, at times a little insane...but I believe I will be able to help other women. When I was 18 I started to struggle with acne. I hadn't struggled with it much in H.S, just the occasional chin-zit...but suddenly it was all over my chin and around my mouth. I went to a dermatologist and then a doctor about a year later. I tried every topical over-the-counter and prescription product known to man. It caused many tears and many missed social opportunities. When it was bad, it definitely affected my quality of life...sometimes severely. It turned me into a different person...a person that thought about myself and not others...a person that avoided social situations because of what my crazy skin was doing. That is not me. I genuinely love people. When I was 23 it turned into severe cystic acne. I started to get large hardened lesions that would stay on my face for months...deep pockets under the skin and very painful. I will spare you the details. I went to a new derm. and she wanted to put me on Accutane. She handed me a box of YAZ and said, "go on this first. I've had good success with this." Nobody ever told me my acne was hormonal in those early years. I had to find out from my own internet research...until a derm. later told me I had a hormonal imbalance. After I had finally figured it out. Very frustrating. Anyway, YAZ worked so I decided not to go on Accutane. YAZ was like my magic, miracle drug. My skin wasn't super-oily, no acne, and no long, painful periods. I felt like myself again. It was awesome. Well, sometime later...maybe a year or so I couldn't afford YAZ. My face went crazy, the cysts came back and I had to get back on it ASAP. Then, in the fall of 2008 I again had a hard financial month and I couldn't afford it. At that time I kept seeing all these commercials where people were suing YAZ because of horrible side effects. It scared me. So, when I had money again I decided to go off of it anyway. We decided whatever happened happened. We both wanted children and I always had this "sense" that it would take a long time. (If this is TMI, you will want to stop reading here.) I prayed and believed my problems were over. I was off of it for a year. For nine months I thought my prayers were answered and I had "grown out" of the hormonal imbalance. Then around month nine my face exploded. During the end of the school year and most of the summer I had horrible cystic acne. I went back to the derm. This time it was a different guy. The original lady had left and I had been through three different people, all bad experiences where I left crying and feeling hopeless. Whenever I had a bad cyst I had to drive all the way to Tulsa and get a cortizone injection...unless I wanted a hardened cyst under my skin for 2-4 months. Anyway, this new guy, Dr. B, he wanted to put me on Spironolactone. (I might be spelling that wrong.) He said it was better than Accutane for hormonal cystic acne. Spironolactone is actually a drug for blood pressure, but it controls the androgen something-or-other and works to regulate women whose bodies have an overactive androgen gland and produce too many male hormones. He said that if I was on Spiro I would definitely have to be on birth control...because there was a slight chance that any baby conceived while on the drug would be a hermaphrodite. Then he was like "you know, genetically ambiguous." I said, "Uh..yeah, I know what it means." He really scared me. I thought, why should I get on Spiro when I know YAZ works? I will just go back on YAZ. The less drugs the better. Anything that is going to make a baby a hermaphrodite does not sound safe to me! I couldn't take it anymore...as my acne put me through hell....especially during the summer when I had to be around the in-laws I NEVER see with a pizza face...and we were always doing outdoorsy things that are not conducive to makeup staying on. So I decided to go back on YAZ. Again. Month 1 and then 2...it still hadn't kicked into my system. I had to go to Tulsa for shots...I got huge cysts and had to run up there the day before school started. I was depressed that I had to get back on YAZ. After not conceiving for a year I never wanted to be on any birth control again...but I felt like I had no choice. I have a friend that was having the same symptoms and struggles that I had. She was even going to the same female doctor that I was and was having the same bad experiences. I tried to talk to my gyno about what I was going through...I knew there was a connection and wanted an answer...but she always just wanted to get me back on YAZ and get me out of there. I never felt like anyone really listened to my symptoms and empathized. I felt like my fate was in the hands of these doctors that didn't even seem to care...and who I had NO relationship with. Everytime I went to the derm. in Tulsa I would get a different person due to someone leaving. Anyway, this friend...we will call her Jane...went to Dr. Thomas in Grove. His reputation proceeds him. I had heard for a while that if you have a problem, he WANTS to get to the bottom of it and fix it...not just write you a prescription. So she went to him after some recommendations...and after she told our gyno (the one in Miami we had both gone to just because she's female) that she wasn't getting her period at all and the gyno said, "Well, if you still don't have it in 6 months, come back and I will give you a shot that will make you get it." Nice, huh? Dr. T told her that he was going to run a bunch of tests until he found out what was wrong with her. She had irregular periods, some hormonal acne (although not as severe as mine it once was and she was on Accutane), and she could not conceive. He found out that she had PCOS. Polycystic Ovarian Syndrome affects 1 in 10 women. Women who have this rarely ovulate, if at all. They also get cysts on their ovaries. Basically their hormones are out of whack. Some symptoms are oily skin, cystic hormonal acne (acne around chin and mouth), hair growth in weird places (like your big toe) mood swings and irregular periods. Basically women with PCOS produce too much male hormones in their bodies. Stress can trigger hormones and make it worse...and make your body produce more male hormones. Hormones can fluctuate and change. That is why it is a syndrome and not a disease. Most women do not know they have PCOS but go to the doctor for other reasons: acne, periods, or infertility. Birth control regulates hormones and masks PCOS...so many women don't even discover it until they try to conceive. If you are on b.c or have just come off of it, you will not have cysts on your ovaries. Jane called me a few days after her appt. and said, "Jessi, I think you have this. We have a lot of the same symptoms. I'm just so relieved to finally know what's wrong with me." I researched it on the net and was shocked. Why had I never heard of this before? I thought a lot about our phone conversation over the next couple weeks. I wondered if I had made the right decision going back on YAZ. Or if I should have waited and gone to Dr. Thomas. I kept all this in the back of my mind. Jane proceeded to go on Clomid and was told she was ovulating and would most likely be pregnant in 1-6 months. If not, Dr. T was devoted to her case and they would try other things. She finally felt like someone cared. After two months it seemed to me like YAZ had "gotten into my system"...but I had recently taken steroids (prescribed by the derm) that can keep cysts away for several weeks (to get me through the beginning of school). When I again started having flare-ups I was very depressed. About this same time a generic version of YAZ came out. Dave went to pick up my prescription and came back with GIANVI. After calling the pharmacist, thinking there was a mistake, they told me that once a generic comes out, your insurance company MAKES you purchase the generic. If you want their monetary help that is. I was worried at first about taking the generic...but then I figured well, if it claims to be just like YAZ it must be. About a week or a week and a half later I decided to do research on Gianvi. I found out that it had not been proven to treat acne or PMDD. Not only that but they were being sued big time. They were claiming to be like YAZ when they did not have the benefits (acne and PMDD treatment) that YAZ had. I started reading message boards where many, many girls had made the switch and were suffering from depression and mood swings. My jaw dropped. I had been really depressed for the last week. I hadn't even wanted to get out of bed or put one foot in front of the other. I was snapping at my loved ones. They had even pointed it out to me. I had been extremely emotional...I just thought it was due to the new cysts and hormonal crap but I realized it did start hardcore around the time I switched. And then that just made me mad. That a company and the insurance companies could get away with that. I hate all insurance companies by the way. Mine especially sucks. Anyway, I tried to call my female doctors office to see if it would be okay if I switched from Gianvi to YAZ mid-cycle. I had to call several times to get her (the nurse) after she would not call me back. She said the doctor was out of town and she couldn't answer my question. I repeated the simple question to make sure the receptionist had written it down correctly. She mumbled some stuff contradictory to what I was saying...misunderstanding..and I tried to explain. She cut me off, "Well, if that's what you think you should do then do that. Bye." I had had bad experience after bad experience with this female doctors office in Miami and I was so fed up at that point. Right after she pretty much hung up on me the Dermatologist office (the nurse) called. I had called her to see if I could still go on Spironolactone. After lots of research I realized that I had made a big mistake by not going on it. The YAZ hadn't seemed to kick in...and I read testimonial after testimonial of women that loved Spiro. Basically Spiro will not let your body produce too many male hormones. Many women with PCOS (which I now believe I have ) take it. It regulates everything and women feel better than they have in years. And one of the few "negative" side effects is that there is an appetite suppressant and women lose weight. Yeah. How horrible. I knew I wanted to go on Spiro. I wanted relief. To make a long story short, I started blubbering on the phone with the nurse. My emotions are just so tied to all of this....as I have struggled with it off and on for SO long. The nurse was amazingly compassionate. There were a couple hoops I had to jump through before going on Spiro (they require a pregnancy test) and she called the female doctors office, was very firm, and set it up so I could take it there and not drive all the way to Tulsa. She wanted to get me on Spiro quick. I was so grateful for the kind compassionate way she talked to me and listened to me. I have since prayed that God would heap blessings on her. Her name is Kelly if you want to join me. ;-) When you feel like so much of your fate lies in the hands of these health care professionals and you have bad experience after bad experience...it makes you feel so hopeless! Kelly was amazing. So...this was a long blog that I really, really needed to write to vent. Here is my plan: Tonight: Switch back to name brand YAZ Tomorrow: Go to female doctor, take test, fax it in ASAP: Turn in Spiro prescription, get it filled, start on it 3 months: See derm Next 6 months: Stay on Spiro Until Spring: Stay on YAZ Spring: Go off everything and say some strong prayers Spring: Go see Dr. Thomas, probably before or right after I go off of everything -Get tested for PCOS, get to the bottom of all issues - Take Clomid if I need to; take advantage of insurance I have through the school -Hopefully get knocked up and have a baby around the time Dave graduates -Be a stay-at-home Mom beginning with summer/ fall 2012??? I finally have hope. And that is a good thing. Read more:

jessi T

jessi T

09/18/2010

 

Almost ten years of this suffering....ready for it to end

In high school I was one of those girls with good skin. I occasionally got zits on my chin but they were fairly easy to cover. Then...came the college years...I was 18 when acne began to terrorize me. The fall of my Freshman year I started breaking out horrible. I was in a play at the time (Theatre major) and I thought the pancake makeup was to blame. Little did I know this was just the beginning.... I first went to the Dermatologist during this year. She pushed all the topical stuff. The only helpful thing that came out of that visit was that I started using Neutrogena Acne Wash, which really is the gentlest, best wash you can use. All the topical stuff (both prescription and non) would seem to work for a little while but not for long. Although I mostly broke out around my chin and mouth area, the dermatologist never told me it was hormonal. I tried Proactive for the first time when I was about 20. It seemed to work for a little while and then it made my face worse. The first significant breakthrough I had was when my friend gave me some Benzaclin. It didn't prevent my acne but it seemed to dry stuff up better than over-the-counter stuff. Around the time I got married I went on birth control and I noticed my skin was really clear. I didn't really make the connection...because I never realized my acne was hormonal...I thought (around that time) that I "grew out of it." Then I came off birth control. And all hell broke loose. When I was 24 I started to get LARGE cysts the size of half dollars. They would be hardened lumps and look grotesque. I had never had large cysts before. I went to a new dermatologist and she wanted to put me on Accutane. She put me on YAZ first because I needed to be on birth control and she had gotten good results from YAZ. YAZ did wonders so I decided not to go on Accutane. I was a little scared of Accutane, for good reason. While on YAZ my skin was not oily and I did not get cysts. I would occasionally get a pimple around the time of my period but it stayed small. I was so happy. But a girl does not want to be on birth control forever. I tried to get off of it several times...and every time I would break out with cysts and it would become so unbearable that I couldn't take it anymore and had to get back on. This last time I stayed off of BC for a year and my husband and I tried to have a baby. My skin stayed clear for almost 8 months and I thought maybe my hormones had finally "changed"...then about month 9 the cysts came back and after 3 months I was insane. I went to the derm....the old lady (who I loved) had left and I had a guy. He wanted to put me on Spiro....and I thought why should I go on Spiro when I know YAZ works? I would have to be on BC for Spiro anyway and both are temporary. So I went back on YAZ. Im on month 2 of YAZ and I have a huge cyst by my mouth...so I guess it still hasn't kicked in. I am using Retin A so I have beautiful skin with cysts. If you are a cystic acne sufferer you will know what I mean. Nothing topical helps hormonal cysts. You can make your skin look beautiful but a cyst will still knot up under your skin. The best thing about finding this website is that I feel like I am not alone. At 27 I know noone who is a cystic acne sufferer....I teach high school for goodness' sakes! They should have the zits; not me! It is humiliating. What makes it even harder is that I live in a small town and have to drive an hour and a half to get a cortizone shot....and that's when they can get me in. I am a very moral person, but if I had a chance to steal corizone vials I probably would. That is the only thing that will keep a cyst from living on your face for a quarter of a year. So...Im waiting on the YAZ. And when I want to have a baby I guess I will have to not work and stay home because I will have to accept that I will have bad skin.

jessi T

jessi T

08/17/2010

Last Reply:
09/18/2010

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