Sing, O Barren One (Kol Isha)
The Real Face of PCOS
a personal story by Barbara of Barbara's Tchatzkahs
Polycystic Ovarian Syndrome or PCOS for short. The PCO Support Association (PCOSA) and other sufferers have done a wonderful job getting the word out. Articles and news items are being published. Women are finally being diagnosed. Thanks to people like Katherine DesMaisons, PhD and others, people are finding out more about Insulin Sensitizers and what food really does their bodies and their minds. Some doctors are finally recognizing the psychological component. Women are looking at their balding dads and brothers and realizing that the male pattern baldness and Syndrome X are linked to PCOS. Families are talking. Weight problems aren’t just about what you eat. Women are admitting they actually shave their faces and that their bodies are sometimes covered with male patterned hair. The genetic composition of Diabetes is understood. It’s out of the closet.
Almost.
We still have a long way to go. (And if ObamaCare gets passed, people with PCOS will be penalized for a genetic problem!)
PCOS out of hiding! It wasn’t always this way. I know because I lived it. PCOS and I have been companions for a long time. A companion I neither wanted or needed. A companion that was going to tell me something about society in general and myself, whether or not I wanted to know. But try telling this to a pre-adolescent girl. Especially in our society where body image is everything. My story is long and ongoing but hopefully, someone somewhere will see themselves, their daughter, their mother, their girlfriend or their wife in it. Maybe you doctors will have a better grip on the total patient sitting in front of you. And it will be one more step on the road back. For everyone.
I won’t get into the basics of what PCOS is and how it tries to destroy you. A good search on the internet will tell you that. I will say that more than just a medical assault on one’s body it is a total assault on you as a woman.
Let’s start by telling you my own story. I was 9 years old when I got my period. 9 years old. It was the mid 60's, the same year we moved from a comfortable Polish neighborhood in Buffalo, NY to an ultra-conservative, ultra-nasty Christian farming community 300 miles to the East. I remember coming downstairs to ask my mom what the blood was all about. I got the talk about "becoming a woman." The books. My mom and grandmother were good about all that. They didn’t push abstinence only caution. At the time I didn’t even know what sex was nor did I want to know. All I knew was, this was the next 50 or so years of my female life. O.K. Growing up was a good thing maybe?
But no one was prepared for what happened next. Of course when most girls reach menses it’s normal to skip months at a time in the beginning. The next time it happened to me was a torrent of bleeding. My parents rushed me to the hospital. I was in so much pain I couldn’t talk. The doctors couldn’t find anything much wrong with me but every time they touched my belly I screamed. I spent a week at home lying on a plastic sheet. My grandmother was rolling up old towels and sheets to put between my legs. The blood was coming out too fast and hard for traditional methods. The laundry was going 24/7. I was so weak I couldn’t eat. And I was only in the 3rd grade!
Stupid doctors accused me of masturbating too much. I didn’t even know what that meant!
They agreed I had Sclerotic Ovarian Syndrome (one of PCOS’ old monikers) but had no idea what to do other than to tell me to modify my behavior. Modify WHAT?, I thought. At this point I wasn’t even quite sure how babies were made. Yet my ovaries were covered with cysts. And I was merely heavily sedated every time I bled until it stopped.
I went back to elementary school and went through this drill of intense bleeding and pain every few months. The doctors sedated me. Chided me. Had to be my fault somehow since they couldn’t easily fix or define it. Every few months I was a little girl with some doctor’s hand inside me. And my Narcissist mother was totally disgusted. As she suspected, I wasn’t the perfect princess she wanted. The white and gold French Provincial furniture and lace canopy bed in my pink room (picked by her, not me) seemed so out of place to what was going on with my body.
By the time I hit 5th grade I had breasts. Forget the training bra. I blew through that in 2 months. My parents were constantly getting calls from the school that I was "too provocative for the boys to be around." I didn’t like boys! And I didn’t know what ‘provocative’ was. I barely knew what sex was and when I did find out I thought it was yucky.
My mother got a call at work one day from my 5th grade teacher, Mrs. Cooper. Seems one of my classmates saw me changing for gym class and noticed I had pubic hair and woman sized breasts. She went screaming to the teacher. Mrs. Cooper had me strip in front of her and the school nurse, convinced I was stuffing my bra. What she saw was quite a shock. My mom smoothed it all over when she got the phone call full of dismay. (Back then no one sued for this sort of thing - but it scared me emotionally) The precocious puberty now known to be so common to PCOS had hit me like a brick. Needless to say the talk in the teachers lounge got me treated like I was a leper.
My mom would make an excuse to come into our bathroom while I was showering to look at me and the repulsion was thinly veiled. I was in the gifted program scholastically but now I was physically different. Not the kind of girl welcome in a rural setting in Central New York. But I still had another 7 years to go.
Now the parade of doctors was endless. ‘I must be putting things inside myself.’ ‘I must be pregnant.’ ‘I must be high strung.’ ‘I must be imagining it.’ I was also behaving wildly as the insulin surges so common to PCOS started flooding my brain and playing with my dopamine and serotonin levels. My concentration was erratic. My reactions were blunted. I was positively manic. The normal raging hormones that come on as young girls grow up were way out of balance and out of control.
My life at home was a stream of hearing I was ugly or a freak. As if I could do something to change it. And the doctors didn’t help. Sedatives in elementary school. I would take physical beatings from classmates and barbs from teachers. My mom tried desperately to turn me externally back into the princess she wanted but my body wasn’t having it. I was getting taller than everyone in my class and had the body of woman with the brain of a child. And those intense bleeds were still going on and on. I didn’t want to look at myself and didn’t want anyone else to either.
By then I had hit the years when girls start sizing up the competition. I was not the cute, pert All-American milk-fed girl that everyone around me seemed to be. My mother was embarrassed of me. I saw her look longingly at the other girls and their parents at school events. “Why me?” was her unspoken theme. Hints were dropped that I would never be attractive to anyone or be happy because of “my problem.” With the exception of a few wonderful teachers, my school just couldn’t shove me through the system fast enough. Everything around me told me I was not one of them. I was an outsider. One Greek translation for Barbara means “stranger.” It was starting to fit.
For a young girl to admit or learn she has PCOS without medical, community, peer or parental support is impossible. In fact, it’s a one way ticket to a lifetime of illness and self effacing behaviors. Trust me...
By Junior High the acne hit hard. Of course remember, none of the doctors were making the connections they do now that this was all part of the same problem. Everything was separate. In the 1961 edition of the Popular Medical Encyclopedia, Dr. Morris Fishbein (wrongly) wrote,
Then the genetic defect for diabetes was discovered and new treatments were found. We knew the weight was a bi-product of the illness not the cause. But think about it… how many doctors out there now read this same journal back in medical school and still subscribe to its thinking? And why is that? Could it be because blaming us is so much easier for both us and them? PCOS itself, rather than the symptoms as well as its strong link to diabetes being treated was still years away. Any treatment was cosmetic at best.
Weekly I was at the doctor’s office for a once over on my skin and twice I had my skin peeled like an orange. This was coupled with the braces I had on my teeth since I was 10. The inside of my mouth was always full of blood for hours afterward. I would look in the mirror and just stare. I didn’t know who that girl was. I just kept hoping the future would be better. And through it all, my Polish grandmother, who lived with us, kept pushing the carbohydrates in her sincere effort to make me feel better. Of course this just ramped up my insulin and the vicious cycle started all over again.
High school was a nightmare. By now I was the school freak. PCOS had ravaged my mind and my body. Anyone who would be my friend was lumped into the same category. My voice got deeper with every other boy in the class. I shot up height wise. The acne took a few years to abate. I had few friends. I had only my inner life and books to look forward to. The bi-yearly bleeding was ongoing and intense. I remember sitting in health class and hearing about the menstrual cycle and thinking, “what’s that?” And the doctors with their theories and looks were all out of suggestions.
Around the age of 17 things started to smooth out a teeny bit. I was thin, the acne was gone and the braces were off. But I fell in hopelessly in love with a narcissist who destroyed what was left of me and after getting me pregnant in January of 1977 - disappeared completely from my radar.
Intimacy was a vast Pandora’s box for me by now. Something I longed for but feared worse. But as we all know with PCOS, that was the calm before the storm. PCOS is cyclical and it doesn’t lie dormant for long.
In March of 1975 my mother put me on a bus to Buffalo, N.Y. The gynecologist that delivered me had agreed to see me. He was no longer in actual practice but was a Professor Emeritus at Buffalo University Medical School. He hadn’t seen me since I was 2 years old. I went into the office and got the all too familiar pelvic exam. He rolled his eyes at me and gave me a big hug. Then he walked to the phone and called my parents. The first thing he said was “how long has she been like this?”
He told them I had Stein-Leventhal Syndrome, currently known as PCOS. He put me on hormone therapy and wrote up a long report. For a while it was the first time I felt what normal was. My wild mood swings evened out and the femininity blossomed. But of course, by now, it had been so drilled into my family that it had to be mine or at best, someone other than their fault that I was looked at as a disappointment. Additionally, the community I lived in did nothing to help matters. Who or what I was was too well cemented into everyone’s psyche. Freak.
Late in my senior year of high school a group of girls grabbed me in the shower after gym and badly beat me bloody while 2 teachers looked on. Now it was the 70s and lawsuits over that kind of thing were future events. I just kept blindly marching forward. Often wondering if I was male or female because my body certainly didn’t know.
College was no picnic. I carried a double major. I was on hormones most of college just to keep me level but nothing was done to get at the root of my problems. Only stop-gap measures. PCOS was still a ticking bomb inside me. Perhaps because I was out burning up some dance floor every chance I got all that exercise kept me thin. But the years of medical hammering and low-self esteem didn’t seem to go away. I got two awards from the college that helped pay tuition, I graduated on the dean’s list, I held down two jobs and my course load and the theatre work.
By Junior year I was constantly eating at the faculty cafeteria with some professor. I was well known and well liked by students and faculty. But in private I gravitated to people who did nothing but confirm that I was defective in some way. I met and got involved with two psychopathic boys and a stream of narcissist 'friends' during this time. It was too familiar for me to know this wasn’t my fault.
I had some intense periods at college. Physical pain. And I used a variety of prescription and non-prescription methods to deal with it. I remember looking up Stein-Leventhal at the school library and finding that it was discovered in 1923 or earlier. But why had all the doctors ignored me? Again – it must be me. I believed something was wrong with me. Then the illness was fairly dormant thanks to birth control pills right until I got married and decided to have children.
Once the birth control pills were gone all hell broke loose. I had pelvic pain so bad I couldn’t walk. I would go into the bathroom at my various jobs and spit out blood from my irritated bowels and calmly walk back to my desk. In 1986 I was taken into surgery and a dermoid cyst, common to PCOS, the size of a grapefruit was removed from my right ovary. A wedge resection was done. As my doctor was pulling the staples out of my belly he assured me I would be pregnant soon. I'd have this surgery at least twice more (so far) in my life.
But I wasn’t. Then the fertility drugs started. They turned me from a screaming monster to a weeping lump on an hourly basis. I started with Clomid and worked my way up. Every time I had another string of failures I would take a little break and start again. Each time moving the line of drugs or procedures I would do up a little bit more. When I brought home the huge syringes for the Pergonal and Metrodin I thought, “I can’t do this.” But I did. I had a laproscopy for the removal of more cysts. I did Lupron towards the end of my 12 year battle to motherhood. Lupron, for those that don’t know, is an injectable drug invented to treat prostate cancer that basically stops all the hormones in your body so the slate is wiped clean. I learned that hormones tend to normally pulse through your body every 45 to 90 minutes. And every 55 minutes I was a sweaty mess. I would take little breaks after every failed 5 or 6 cycles. I did IUI, GIFT, ZIFT, Natural Cycles, Clomid and the injectables. The miscarriages happened so many times I got numb to them.
Once again, everything was telling me I was defective. Not a real woman.
Despite an unrelated disability problem I finally became pregnant via IVF in early March of 1997. I was in shock when I got the call. They knew I had multiples due to the extremely high level of pregnancy hormones in my system. For a fleeting moment I thought, “I beat PCOS.” I had been told years before that after I had a baby the PCOS would go away and secretly I hoped that was true. Don’t we all wish that? What can I do to make this go away? But that feeling didn’t last. Someone had to dig inside my body to produce children who spent their first 3 days of existence in a petrie dish and eventually they had to cut them out of me. PCOS again had made me defective goods. I still rarely talk about my infertility treatment and the large hole it left inside me. Despite my gloriously special children - I still consider myself infertile... barren.
I saw a TV news piece on PCOS once called “Women Turning Into Men?” I am still not sure how I am supposed to feel about that.
After my children were born I started initially to loose weight. But I had to stop breastfeeding when my prolactin went thru the floor. And then I started to gain weight. I hit the salads. Despite the excruciating physical pain I had from my disability and the c-section, I would load my kids into their double stroller and struggle to the park. I bought a lot of black pants because I was bleeding through everything. I was portion control dieting strictly and yet I was blowing up like a balloon. My belly is still bowed out from surgery. (I had more in May 2009)
And my mother me I looked awful. My Narcissistic Mother even told me my husband would leave me and I would be on the street if I didn’t lose the weight. Supportive... (just a few years later - I left him.)
I starved myself and yet the weight was climbing. My face looked gray and drawn. I was depressed and anxious. I was on a number of different anti-depressants to deal with the severe post-partum problems. PCOS had blown back into my life like a tornado. I developed dark spots on my body. The testosterone was higher than ever. I went to see a specialist who handed me a brochure for Weight Watchers. I got so angry that I walked out and refused to pay him. I was 40 years old and I needed answers. Now.
During one childbirth class I had met another woman I had known from the PCOS Newsgroup. She and I were concerned about the high miscarriage rate with PCOS. But she told me about PCOSA and in turn, they found my new endocrinologist. At last, someone who might understand me.
I walked into his office waiting for that other shoe to drop. But it never did. He took a long history. I remember leaving out all the details like the beatings and emotional torture I had been through. He did all the right tests and finally all the right lights when on. My body had been screaming and no one was listening. He never blamed me. Never talked down to me. After just a few months on Metformin (an insulin sensitizer also known as Glucophage), the mood swings stopped. My hair stopped falling out. My skin got nicer. I was ovulating and getting a period. I was feeling better.
Now I can only hope that my relationship with women on line searching for answers has often been as rewarding for me as I pray it is for them. The net has provided a springboard for those of us looking for help and closure to the nagging thoughts of “what is wrong with me?” The heartbreaking stories of women, especially teenagers, who are merely given birth control and shoved out the door to face life tear at my brain. The girls who go into Jenny Craig or Weight Watchers and whose counselors then wonder why a portion control diet isn’t working sicken me. Have the doctors learned nothing, I think? How can they do this to us?
I continue to adamantly assert that oral contraceptives isn’t the answer because it doesn’t get to the root of the problem, only mask them.
I continue to assert that the same insulin causing the physical problems is flooding our brain causing hypoglycemia often misdiagnosed as panic or anxiety.
PCOS is endocrinological not gynecological. It was with great relief I realized this was genetic and out of my hands but not out of my control. Understandably, I am sometimes fueled by the rage I have for the years of mistreatment and missed life experience. I can’t get that time back. Some doctors continue to see a fat, moody and/or hairy woman in their office and think, “Treat her, bill her, get rid of her.” Many of them don’t care to do the work necessary nor do they want to hear it. As a doctor friend told me, “the first thing you learn in Med School is the most obvious answer is usually right.” Some doctors don’t crack open another J.A.M.A. after they graduate. But some of them are absolute angels.
Doctors – find the balance between “subjective patient” and “objective physician.” When the science isn’t speaking to you – speak to the patient. As noted 19th Century physican Sir William Osler stated so well in his Counsels and Ideals,
Get the help you deserve, ladies. Don’t take no for an answer. Don’t be put off by the “M.D.” after someone’s name. They can and have been wrong. We women so often fall into the “disease to please” trap due to our upbringings that we fail to stand up and listen to our inner voices when they are screaming that something is wrong. PCOS ravages women socially, emotionally and physically. We need to get up every day and fight the good fight. If not for ourselves then for those who will follow us.
And please reach out to others. I have referred women for treatment. Walked over to women in malls. Explained insulin resistance to them. Told them there is no quick fix, no magic bullet. Fully supported the mothers looking for help for their daughters. I have daughters too. It might very well be me one day. Without reaching out to each other we are surely lost. I can only relate it to a story I was told once. And religious or not, it’s meaning is clear:
PCOS is a club some of us ladies belong to. It is a club where a power greater than ourselves chooses the members. And for bad or for good we, the patients, the doctors and those who care about them, need to take each other’s hands until one day it is gone for good.
by Rachel Adelman
Jacob recalled her burial with deep pangs of conscience to his son Joseph (Gen. 48:7). After her tragic death in childbirth, upon their return to Canaan, he hastily buried her "on the way," not in the Cave of the Patriarchs where Leah would be buried. He did not even take her to Bethlehem to bring her into the Land (Rashi, loc. cit.). Her burial on the border foreshadows not only the exile, but also intimates the possibility of return.
According to the midrash, as the Babylonian general Nebuzaradan marched the Israelites into exile, they passed by Rachel's burial site, and she emerged from her tomb, weeping and begging for mercy. And God assured her: "Restrain your voice from weeping, your eyes from shedding tears; for there is a reward for your labor - declares the Lord: They shall return from the enemy's land" (Jer. 31:16, Lamentations Rabba 24).
a personal story by Barbara of Barbara's Tchatzkahs
Polycystic Ovarian Syndrome or PCOS for short. The PCO Support Association (PCOSA) and other sufferers have done a wonderful job getting the word out. Articles and news items are being published. Women are finally being diagnosed. Thanks to people like Katherine DesMaisons, PhD and others, people are finding out more about Insulin Sensitizers and what food really does their bodies and their minds. Some doctors are finally recognizing the psychological component. Women are looking at their balding dads and brothers and realizing that the male pattern baldness and Syndrome X are linked to PCOS. Families are talking. Weight problems aren’t just about what you eat. Women are admitting they actually shave their faces and that their bodies are sometimes covered with male patterned hair. The genetic composition of Diabetes is understood. It’s out of the closet.
Almost.
We still have a long way to go. (And if ObamaCare gets passed, people with PCOS will be penalized for a genetic problem!)
PCOS out of hiding! It wasn’t always this way. I know because I lived it. PCOS and I have been companions for a long time. A companion I neither wanted or needed. A companion that was going to tell me something about society in general and myself, whether or not I wanted to know. But try telling this to a pre-adolescent girl. Especially in our society where body image is everything. My story is long and ongoing but hopefully, someone somewhere will see themselves, their daughter, their mother, their girlfriend or their wife in it. Maybe you doctors will have a better grip on the total patient sitting in front of you. And it will be one more step on the road back. For everyone.
I won’t get into the basics of what PCOS is and how it tries to destroy you. A good search on the internet will tell you that. I will say that more than just a medical assault on one’s body it is a total assault on you as a woman.
Let’s start by telling you my own story. I was 9 years old when I got my period. 9 years old. It was the mid 60's, the same year we moved from a comfortable Polish neighborhood in Buffalo, NY to an ultra-conservative, ultra-nasty Christian farming community 300 miles to the East. I remember coming downstairs to ask my mom what the blood was all about. I got the talk about "becoming a woman." The books. My mom and grandmother were good about all that. They didn’t push abstinence only caution. At the time I didn’t even know what sex was nor did I want to know. All I knew was, this was the next 50 or so years of my female life. O.K. Growing up was a good thing maybe?
But no one was prepared for what happened next. Of course when most girls reach menses it’s normal to skip months at a time in the beginning. The next time it happened to me was a torrent of bleeding. My parents rushed me to the hospital. I was in so much pain I couldn’t talk. The doctors couldn’t find anything much wrong with me but every time they touched my belly I screamed. I spent a week at home lying on a plastic sheet. My grandmother was rolling up old towels and sheets to put between my legs. The blood was coming out too fast and hard for traditional methods. The laundry was going 24/7. I was so weak I couldn’t eat. And I was only in the 3rd grade!
Stupid doctors accused me of masturbating too much. I didn’t even know what that meant!
They agreed I had Sclerotic Ovarian Syndrome (one of PCOS’ old monikers) but had no idea what to do other than to tell me to modify my behavior. Modify WHAT?, I thought. At this point I wasn’t even quite sure how babies were made. Yet my ovaries were covered with cysts. And I was merely heavily sedated every time I bled until it stopped.
I went back to elementary school and went through this drill of intense bleeding and pain every few months. The doctors sedated me. Chided me. Had to be my fault somehow since they couldn’t easily fix or define it. Every few months I was a little girl with some doctor’s hand inside me. And my Narcissist mother was totally disgusted. As she suspected, I wasn’t the perfect princess she wanted. The white and gold French Provincial furniture and lace canopy bed in my pink room (picked by her, not me) seemed so out of place to what was going on with my body.
By the time I hit 5th grade I had breasts. Forget the training bra. I blew through that in 2 months. My parents were constantly getting calls from the school that I was "too provocative for the boys to be around." I didn’t like boys! And I didn’t know what ‘provocative’ was. I barely knew what sex was and when I did find out I thought it was yucky.
My mother got a call at work one day from my 5th grade teacher, Mrs. Cooper. Seems one of my classmates saw me changing for gym class and noticed I had pubic hair and woman sized breasts. She went screaming to the teacher. Mrs. Cooper had me strip in front of her and the school nurse, convinced I was stuffing my bra. What she saw was quite a shock. My mom smoothed it all over when she got the phone call full of dismay. (Back then no one sued for this sort of thing - but it scared me emotionally) The precocious puberty now known to be so common to PCOS had hit me like a brick. Needless to say the talk in the teachers lounge got me treated like I was a leper.
My mom would make an excuse to come into our bathroom while I was showering to look at me and the repulsion was thinly veiled. I was in the gifted program scholastically but now I was physically different. Not the kind of girl welcome in a rural setting in Central New York. But I still had another 7 years to go.
Now the parade of doctors was endless. ‘I must be putting things inside myself.’ ‘I must be pregnant.’ ‘I must be high strung.’ ‘I must be imagining it.’ I was also behaving wildly as the insulin surges so common to PCOS started flooding my brain and playing with my dopamine and serotonin levels. My concentration was erratic. My reactions were blunted. I was positively manic. The normal raging hormones that come on as young girls grow up were way out of balance and out of control.
My life at home was a stream of hearing I was ugly or a freak. As if I could do something to change it. And the doctors didn’t help. Sedatives in elementary school. I would take physical beatings from classmates and barbs from teachers. My mom tried desperately to turn me externally back into the princess she wanted but my body wasn’t having it. I was getting taller than everyone in my class and had the body of woman with the brain of a child. And those intense bleeds were still going on and on. I didn’t want to look at myself and didn’t want anyone else to either.
By then I had hit the years when girls start sizing up the competition. I was not the cute, pert All-American milk-fed girl that everyone around me seemed to be. My mother was embarrassed of me. I saw her look longingly at the other girls and their parents at school events. “Why me?” was her unspoken theme. Hints were dropped that I would never be attractive to anyone or be happy because of “my problem.” With the exception of a few wonderful teachers, my school just couldn’t shove me through the system fast enough. Everything around me told me I was not one of them. I was an outsider. One Greek translation for Barbara means “stranger.” It was starting to fit.
For a young girl to admit or learn she has PCOS without medical, community, peer or parental support is impossible. In fact, it’s a one way ticket to a lifetime of illness and self effacing behaviors. Trust me...
By Junior High the acne hit hard. Of course remember, none of the doctors were making the connections they do now that this was all part of the same problem. Everything was separate. In the 1961 edition of the Popular Medical Encyclopedia, Dr. Morris Fishbein (wrongly) wrote,
diabetics are “classified into two types – those who are blamable and those who are blameless. Most people who develop diabetes are fat before they get it.Dr. E.P. Joslin says that
any ten diabetics put together weigh a ton before they develop the disease. These are blamable diabetics because they would not have diabetes if they had kept their weights down to normal. The blameless diabetics are the children who develop the disease and most of those are under 10 years of age.”WRONG!
Then the genetic defect for diabetes was discovered and new treatments were found. We knew the weight was a bi-product of the illness not the cause. But think about it… how many doctors out there now read this same journal back in medical school and still subscribe to its thinking? And why is that? Could it be because blaming us is so much easier for both us and them? PCOS itself, rather than the symptoms as well as its strong link to diabetes being treated was still years away. Any treatment was cosmetic at best.
Weekly I was at the doctor’s office for a once over on my skin and twice I had my skin peeled like an orange. This was coupled with the braces I had on my teeth since I was 10. The inside of my mouth was always full of blood for hours afterward. I would look in the mirror and just stare. I didn’t know who that girl was. I just kept hoping the future would be better. And through it all, my Polish grandmother, who lived with us, kept pushing the carbohydrates in her sincere effort to make me feel better. Of course this just ramped up my insulin and the vicious cycle started all over again.
High school was a nightmare. By now I was the school freak. PCOS had ravaged my mind and my body. Anyone who would be my friend was lumped into the same category. My voice got deeper with every other boy in the class. I shot up height wise. The acne took a few years to abate. I had few friends. I had only my inner life and books to look forward to. The bi-yearly bleeding was ongoing and intense. I remember sitting in health class and hearing about the menstrual cycle and thinking, “what’s that?” And the doctors with their theories and looks were all out of suggestions.
Around the age of 17 things started to smooth out a teeny bit. I was thin, the acne was gone and the braces were off. But I fell in hopelessly in love with a narcissist who destroyed what was left of me and after getting me pregnant in January of 1977 - disappeared completely from my radar.
Intimacy was a vast Pandora’s box for me by now. Something I longed for but feared worse. But as we all know with PCOS, that was the calm before the storm. PCOS is cyclical and it doesn’t lie dormant for long.
In March of 1975 my mother put me on a bus to Buffalo, N.Y. The gynecologist that delivered me had agreed to see me. He was no longer in actual practice but was a Professor Emeritus at Buffalo University Medical School. He hadn’t seen me since I was 2 years old. I went into the office and got the all too familiar pelvic exam. He rolled his eyes at me and gave me a big hug. Then he walked to the phone and called my parents. The first thing he said was “how long has she been like this?”
He told them I had Stein-Leventhal Syndrome, currently known as PCOS. He put me on hormone therapy and wrote up a long report. For a while it was the first time I felt what normal was. My wild mood swings evened out and the femininity blossomed. But of course, by now, it had been so drilled into my family that it had to be mine or at best, someone other than their fault that I was looked at as a disappointment. Additionally, the community I lived in did nothing to help matters. Who or what I was was too well cemented into everyone’s psyche. Freak.
Late in my senior year of high school a group of girls grabbed me in the shower after gym and badly beat me bloody while 2 teachers looked on. Now it was the 70s and lawsuits over that kind of thing were future events. I just kept blindly marching forward. Often wondering if I was male or female because my body certainly didn’t know.
College was no picnic. I carried a double major. I was on hormones most of college just to keep me level but nothing was done to get at the root of my problems. Only stop-gap measures. PCOS was still a ticking bomb inside me. Perhaps because I was out burning up some dance floor every chance I got all that exercise kept me thin. But the years of medical hammering and low-self esteem didn’t seem to go away. I got two awards from the college that helped pay tuition, I graduated on the dean’s list, I held down two jobs and my course load and the theatre work.
By Junior year I was constantly eating at the faculty cafeteria with some professor. I was well known and well liked by students and faculty. But in private I gravitated to people who did nothing but confirm that I was defective in some way. I met and got involved with two psychopathic boys and a stream of narcissist 'friends' during this time. It was too familiar for me to know this wasn’t my fault.
I had some intense periods at college. Physical pain. And I used a variety of prescription and non-prescription methods to deal with it. I remember looking up Stein-Leventhal at the school library and finding that it was discovered in 1923 or earlier. But why had all the doctors ignored me? Again – it must be me. I believed something was wrong with me. Then the illness was fairly dormant thanks to birth control pills right until I got married and decided to have children.
Once the birth control pills were gone all hell broke loose. I had pelvic pain so bad I couldn’t walk. I would go into the bathroom at my various jobs and spit out blood from my irritated bowels and calmly walk back to my desk. In 1986 I was taken into surgery and a dermoid cyst, common to PCOS, the size of a grapefruit was removed from my right ovary. A wedge resection was done. As my doctor was pulling the staples out of my belly he assured me I would be pregnant soon. I'd have this surgery at least twice more (so far) in my life.
But I wasn’t. Then the fertility drugs started. They turned me from a screaming monster to a weeping lump on an hourly basis. I started with Clomid and worked my way up. Every time I had another string of failures I would take a little break and start again. Each time moving the line of drugs or procedures I would do up a little bit more. When I brought home the huge syringes for the Pergonal and Metrodin I thought, “I can’t do this.” But I did. I had a laproscopy for the removal of more cysts. I did Lupron towards the end of my 12 year battle to motherhood. Lupron, for those that don’t know, is an injectable drug invented to treat prostate cancer that basically stops all the hormones in your body so the slate is wiped clean. I learned that hormones tend to normally pulse through your body every 45 to 90 minutes. And every 55 minutes I was a sweaty mess. I would take little breaks after every failed 5 or 6 cycles. I did IUI, GIFT, ZIFT, Natural Cycles, Clomid and the injectables. The miscarriages happened so many times I got numb to them.
Once again, everything was telling me I was defective. Not a real woman.
Despite an unrelated disability problem I finally became pregnant via IVF in early March of 1997. I was in shock when I got the call. They knew I had multiples due to the extremely high level of pregnancy hormones in my system. For a fleeting moment I thought, “I beat PCOS.” I had been told years before that after I had a baby the PCOS would go away and secretly I hoped that was true. Don’t we all wish that? What can I do to make this go away? But that feeling didn’t last. Someone had to dig inside my body to produce children who spent their first 3 days of existence in a petrie dish and eventually they had to cut them out of me. PCOS again had made me defective goods. I still rarely talk about my infertility treatment and the large hole it left inside me. Despite my gloriously special children - I still consider myself infertile... barren.
I saw a TV news piece on PCOS once called “Women Turning Into Men?” I am still not sure how I am supposed to feel about that.
After my children were born I started initially to loose weight. But I had to stop breastfeeding when my prolactin went thru the floor. And then I started to gain weight. I hit the salads. Despite the excruciating physical pain I had from my disability and the c-section, I would load my kids into their double stroller and struggle to the park. I bought a lot of black pants because I was bleeding through everything. I was portion control dieting strictly and yet I was blowing up like a balloon. My belly is still bowed out from surgery. (I had more in May 2009)
And my mother me I looked awful. My Narcissistic Mother even told me my husband would leave me and I would be on the street if I didn’t lose the weight. Supportive... (just a few years later - I left him.)
I starved myself and yet the weight was climbing. My face looked gray and drawn. I was depressed and anxious. I was on a number of different anti-depressants to deal with the severe post-partum problems. PCOS had blown back into my life like a tornado. I developed dark spots on my body. The testosterone was higher than ever. I went to see a specialist who handed me a brochure for Weight Watchers. I got so angry that I walked out and refused to pay him. I was 40 years old and I needed answers. Now.
During one childbirth class I had met another woman I had known from the PCOS Newsgroup. She and I were concerned about the high miscarriage rate with PCOS. But she told me about PCOSA and in turn, they found my new endocrinologist. At last, someone who might understand me.
I walked into his office waiting for that other shoe to drop. But it never did. He took a long history. I remember leaving out all the details like the beatings and emotional torture I had been through. He did all the right tests and finally all the right lights when on. My body had been screaming and no one was listening. He never blamed me. Never talked down to me. After just a few months on Metformin (an insulin sensitizer also known as Glucophage), the mood swings stopped. My hair stopped falling out. My skin got nicer. I was ovulating and getting a period. I was feeling better.
Now I can only hope that my relationship with women on line searching for answers has often been as rewarding for me as I pray it is for them. The net has provided a springboard for those of us looking for help and closure to the nagging thoughts of “what is wrong with me?” The heartbreaking stories of women, especially teenagers, who are merely given birth control and shoved out the door to face life tear at my brain. The girls who go into Jenny Craig or Weight Watchers and whose counselors then wonder why a portion control diet isn’t working sicken me. Have the doctors learned nothing, I think? How can they do this to us?
I continue to adamantly assert that oral contraceptives isn’t the answer because it doesn’t get to the root of the problem, only mask them.
I continue to assert that the same insulin causing the physical problems is flooding our brain causing hypoglycemia often misdiagnosed as panic or anxiety.
PCOS is endocrinological not gynecological. It was with great relief I realized this was genetic and out of my hands but not out of my control. Understandably, I am sometimes fueled by the rage I have for the years of mistreatment and missed life experience. I can’t get that time back. Some doctors continue to see a fat, moody and/or hairy woman in their office and think, “Treat her, bill her, get rid of her.” Many of them don’t care to do the work necessary nor do they want to hear it. As a doctor friend told me, “the first thing you learn in Med School is the most obvious answer is usually right.” Some doctors don’t crack open another J.A.M.A. after they graduate. But some of them are absolute angels.
Doctors – find the balance between “subjective patient” and “objective physician.” When the science isn’t speaking to you – speak to the patient. As noted 19th Century physican Sir William Osler stated so well in his Counsels and Ideals,
“The edifice of medicine reposes entirely upon facts… truth cannot be elicited but from those which have been well and completely observed.”We need you and you need us.
Get the help you deserve, ladies. Don’t take no for an answer. Don’t be put off by the “M.D.” after someone’s name. They can and have been wrong. We women so often fall into the “disease to please” trap due to our upbringings that we fail to stand up and listen to our inner voices when they are screaming that something is wrong. PCOS ravages women socially, emotionally and physically. We need to get up every day and fight the good fight. If not for ourselves then for those who will follow us.
And please reach out to others. I have referred women for treatment. Walked over to women in malls. Explained insulin resistance to them. Told them there is no quick fix, no magic bullet. Fully supported the mothers looking for help for their daughters. I have daughters too. It might very well be me one day. Without reaching out to each other we are surely lost. I can only relate it to a story I was told once. And religious or not, it’s meaning is clear:
A man gets to heaven and meets God.
The man says, ‘God, don’t you hear the cries of your people on Earth? The pain, the suffering, the unbearable lives?’
God replies “Of course I hear them.”
The man asks, “Then why didn’t you send help?”
And God replied, “I did send help. I sent you.”
The man says, ‘God, don’t you hear the cries of your people on Earth? The pain, the suffering, the unbearable lives?’
God replies “Of course I hear them.”
The man asks, “Then why didn’t you send help?”
And God replied, “I did send help. I sent you.”
PCOS is a club some of us ladies belong to. It is a club where a power greater than ourselves chooses the members. And for bad or for good we, the patients, the doctors and those who care about them, need to take each other’s hands until one day it is gone for good.
by Rachel Adelman
The lyrical words: "Sing, O barren one, you who bore no child!" open Isaiah's prophecy to Zion. This passage constitutes the fifth of the seven haftarot of consolation following Tisha Be'av (Isa. 54:1-10). Why is Zion (Jerusalem) personified as a barren woman? The midrash Pesikta de-Rav Kahana suggests that there were seven barren ones (akarot) in ancient Jewish history: Sarah, Rebekah, Rachel, Leah, Manoah's wife, Hannah and Zion. That is, the matriarchs of Genesis, Samson's mother and Samuel's mother were all initially infertile.
It is surprising that even Leah is counted among the barren matriarchs, when she was the mother to seven of Jacob's children. Yet the same verse identifying Rachel as barren, suggests that God had a hand in her sister's fertility as well: "When the Lord saw that Leah was hated, he opened up her womb" - if she had not been barren, there would have been no need for divine intervention - "And Rachel was barren (akara)" (Genesis 29:31).
Why would conception, pregnancy, labor and birth be fraught with travail for so many prominent women in the Bible? Perhaps to emphasize that "God holds the keys to birth" (B. Nidda 2a). How, then, does this divine "locking" and "opening" of the doors carry over into the promises to Zion?
With regard to Jerusalem, the midrash continues: "The words, 'He gives the barren woman a home,' (Psalms 113:9) apply to Zion, as it says: 'Sing, O barren one, you who bore no child!' (Isa. 54:1); so do the words, 'making her a joyous mother of children' (Psalms loc. cit.), You [Zion], will say in your heart: 'Who has borne me these? I was bereaved and barren, exiled and put away - so who has reared these? I was left all alone - where then have these come from?'" (Pesikta de-Rav Kahana 20:1).
Jerusalem, stirred from her years of weeping alone, lifts her head, and is astounded to see the hordes of her grandchildren and great-grandchildren returning from exile. Just this week the halls of the Hebrew University were thronged with participants in the World Congress of Jewish Studies. The roads were clogged as I drove past the Old City. The Sultan's Pool was packed every night for the concerts at the Arts Fair. And the bereaved mother shakes her head, "Where have all these people come from?" It is the ingathering of the exiles.Of all the six barren women in the Bible, Rachel's life most poignantly mirrors the fate of Zion. Playing on the Hebrew word for barren, akara, the same midrash continues: "R. Abba bar Kahana said: Most of the guests assembled at Boaz's wedding were descendants of Leah, yet they blessed Ruth by saying, 'May the Lord make the woman who is coming into your house like Rachel and Leah, who together built up the house of Israel...' (Ruth 4:11) [that is they mentioned Rachel before Leah, though she was the younger sister and second wife]. Rachel was held to be first [ikar] among the wives, as is implied by the verse, 'And Rachel was barren [akara]' (Gen. 29:31). R. Isaac said that Rachel was first among the wives [reading akara not as 'barren,' but as akar, meaning root]. And R. Shimon ben Yohai said: Many important events depended on Rachel, and so the Jewish people are named after her, (A voice is heard in Ramah, lamentation and bitter weeping. Rachel is weeping for her children; she refuses to be comforted for her children, because they are gone)" (Jeremiah 31:15). That is all the Israelites who went into exile are called Rachel's children by the prophet Jeremiah, though the majority are descended from Leah.
The beautiful, beloved wife of Jacob, first of his longing, was not only barren (akara) and favored (akeret habayit), but also uprooted (akura). Her children would become the children of exile - Joseph in Egypt and the descendants of Benjamin, Mordechai and Esther, in Babylon. Her burial in the hinterland, on the border between exile and the Land of Israel, forms a signpost pointing towards their fate.
Jacob recalled her burial with deep pangs of conscience to his son Joseph (Gen. 48:7). After her tragic death in childbirth, upon their return to Canaan, he hastily buried her "on the way," not in the Cave of the Patriarchs where Leah would be buried. He did not even take her to Bethlehem to bring her into the Land (Rashi, loc. cit.). Her burial on the border foreshadows not only the exile, but also intimates the possibility of return. According to the midrash, as the Babylonian general Nebuzaradan marched the Israelites into exile, they passed by Rachel's burial site, and she emerged from her tomb, weeping and begging for mercy. And God assured her: "Restrain your voice from weeping, your eyes from shedding tears; for there is a reward for your labor - declares the Lord: They shall return from the enemy's land" (Jer. 31:16, Lamentations Rabba 24).
Zion, the city once great with people, in Lamentations is described as a widow, desolate, bereft of her children (1:1, 4). But in the prophecy of consolation, she is the barren one, become mother of many, adjured by the prophet to shout with joy and break into song. "For the children of the desolate woman will be more than the children of her that is married, says the Lord" (Isa. 54:1). She has become the matriarch Rachel, standing over her tomb, watching in amazement the ingathering of exiles.
The writer lectures in Bible and midrash at Matan, the Sadie Rennert Institute for Women's Torah Studies in Jerusalem, as well as internationally.
