Don't Judge Me: Natalie's Story

An older man, bearing white whiskers, white hair and tortoise-shell rimmed glasses, enters the physical therapy gym, delicately balancing on two crutches. He casts a puzzled look in my direction, watching my every move as I continue completing a set of “clamshells, ” the most intense hip-strengthening exercise I have encountered while at physical therapy.

As I get up to get a drink of water, he glances in my direction and asks “Why… are you here for rehabilitation of some sort?” The question is familiar, though it still feels like a subtle slap on the face. “No I just come here to work out” I want to say, but instead I smile and respond, “Yes, I actually hurt my knee” in my most polite tone. He responds “Ah. Well it sure doesn’t look like you need to be here.”

I smile and nod, and return to my purple mat, where a set of planks awaits me. My physical therapist casts a knowing glance in my direction, having witnessed similar interactions in the past.

This comment still lingers in my thoughts, like the unpleasant residue remaining after a band-aid has been pulled off.  My encounter at the physical therapy clinic reminds me of the many doctors that I have dealt with through various points of my life. It is still astounding to me that so many medical professionals have stated that “a slim, youthful woman of your age” should not be having a myriad of peculiar health symptoms. As if they had suddenly forgotten all six years of their medical school education, or more aptly, attributed my complaints to a state of anxiety that clearly plagues all young female millennials.

As a woman with PCOS, I also find that my youth and slim physique often make me feel like an “atypical” case. I often remind myself that PCOS is a syndrome, but the disbelief of certain doctors has made me feel self-conscious about being a woman with PCOS. Similarly, since PCOS is so intimately linked to fertility health, and since so many women obtain a diagnosis when they are trying to conceive, I sometimes feel alienated by my present situation. Not quite in the “TTC” camp, not quite in the “trying to lose weight camp,” perhaps in a larger camp of working on being as healthy as possible? Does that sound less appealing? I do want to have children some day. This is definitely a motivating factor for me when it comes to taking care of myself and living my life as a “wellness warrior,” but it is not the only one.

These experiences have taught me a lot about the grace with which I interact with others. Despite my outwardly appearance, there is a lot going on with my body. There are days when I feel uncomfortable and overwhelmed. Days where I do not feel like cooking for myself, days where I wish I did not have food sensitivities, and moments where I do not want to get out of bed. I try my best to move forward and to keep improving.

As a Power Up for PCOS representative, I worried about being judged for my age, for my physique, or for the fact that I am not trying to conceive. I sometimes feel that my symptoms are not as “bad” as what other women are going through. I wondered if maybe I shouldn't be as open in sharing my experiences. I worried that my focus on the larger health picture would not appeal to other women. Ultimately, through a conversation with Beth and Katrina, I realized that so many women with PCOS feel this way. Women with children who feel guilty for trying to have another child, women with hair loss who feel guilty that they don’t have excess hair growth, women with thyroid problems who feel guilty for not having endometriosis…etc.

But ultimately, we are all women with PCOS. We all have unique struggles, we all wonder at why our body does what it does and we all strive for wellness. We are different but also similar. So I call on you, to stand together, to let go of the guilt and to work together towards a healthy and fulfilling life.

Have you felt judged during your PCOS journey? Please comment below.


Written by: Natalie, Power Up for PCOS Volunteer
http://www.powerupforpcos.com
*Please note that I am not a medical professional. I am not qualified to give out any medical advice. I am a woman with PCOS who is sharing my personal experiences in this blog and I advise you to consult a professional.*

Power Up for PCOS - emPowering Women to Manage PCOS

Power Up for PCOS provides support to women with PCOS and their families through educational Power Up Groups, building connections with other PCOS women, calendar of upcoming PCOS events, professional referrals and reviews, PCOS store, and other specialized events to raise awareness for PCOS.

My PCOS story - Dr. Gretchen

Dr. Gretchen’s Personal PCOS Story

Like most of us, my PCOS story really begins in pre-puberty, although I wasn’t aware of it at the time.  My mother put me on a liquid protein diet when I was 10 years old because I was a little chubby (i.e., 10 pounds overweight).  I was also growing rapidly, and quite active.  The liquid protein diet didn’t work for weight loss, but it did set in place decades of eating disordered thinking and behavior. 

I went through a period of rapid physical development, and looked like an adult by the time I got my period at age 13.  The weight battle that began at age 10 was acted out in all sorts of restrictive eating behaviors (stopping short of anorexia) and over-exercising.  I was obsessed with food to the point where I could tell you how many calories a tablespoon of baking soda contained.  I thought my problem was all about the food; I had no idea that I actually had an endocrine disorder.

I had irregular periods through my 20s, when a gynecologist told me I had Polycystic Ovarian Syndrome (PCOS), and suggested that birth control pills would help regulate my body.  I took one look at the 32-page booklet of potential side effects and said “no thanks!”  I kind of enjoyed not having a period most of the time. 

In the meantime, weight was a constant battle for me.  I stress ate, didn’t exercise, ate whatever I wanted anyway (which was actually pretty healthy overall, except for my insatiable desire for baked goods), and attributed my random and excess facial hair to being German – my Oma had a moustache, so why wouldn’t I have one too?  This was pre-internet days, so it wasn’t easy to track down information.  No one told me that PCOS was a diagnosis that came with a host of other scary complications, like a propensity towards Type II diabetes and heart disease, not to mention infertility. 

I carried on like that, full of self-loathing for my inability to control my weight (I reached a high of 268 pounds) until about age 30, when I was diagnosed as hypothyroid.  I started on Synthroid and lost eight pounds without trying – and I got my memory back (memory loss is one symptom of hypothyroidism).  It occurred to me that I might have bigger problems than erratic periods.  Around this time, I had a series of Pap smears with atypical benign cells, hyperplasia (overgrowth of the uterine lining), and related symptoms that were not terrifying, but were adequate to land me in the stirrups having the first of what became almost annual D&Cs to remove these questionable-looking cells and the build-up of uterine lining.  That’s the downside of no periods.  I went on birth control pills for seven or eight years after that, and that seemed to improve things.  I had semi-regular periods.  I was still shaving my face regularly though. 

At age 32, I got slammed with a new diagnosis – early onset Type II diabetes.  I knew a lot of diabetics, and I knew this diagnosis was really terrifying.  I immediately embarked on a program of exercise and dietary modification and lost 70 pounds.  That was an improvement, but I still was dealing with all the other PCOS stuff, without really knowing what I was dealing with.  I’d had high blood pressure in my early 20s, but resolved it with acupuncture.  The high blood pressure returned in my late 30s/early 40s (another very common PCOS effect). 

I knew it was a long-shot anyway – after all, someone had mentioned that PCOS might impact my fertility – but, in my early 40s, I tried to get pregnant.  I tried for about three years, not going so far as to resort to assisted reproductive technology, but I had the full work-up.  Finally, one passive but well-meaning doctor referred me to OB/GYN of last resort – she didn’t want to give me the bad news herself.  After waiting for hours to see him, he grudgingly agreed to take me on as a patient, but with warnings about up to six months of bed rest (last trimester actually in a hospital), injectable insulin (possibly for life, because you never know if your body will go back to “normal” after pregnancy), a very high risk of fetal abnormality, probable blood pressure control issues, and a significant risk of maternal and/or fetal death.  THAT was enough to get my attention.  I decided that dying just to have a baby was not a good idea.  My boyfriend and I jointly agreed, “game over.”  If I could rewind the clock, and know everything I now know about PCOS, I do think it would have been possible to have a baby successfully.  But ultimately, because of continuing gynecological problems, I had a partial hysterectomy in 2009.  This flew in the face of all my feminist ideals, but it was the right medical decision for me, and eventually gave me some symptomatic relief.

In the last 17 years, in addition to the weight (I’m still an XL, but a super-active one), the facial hair (strategic laser work and electrolysis contained it), the hypothyroidism (managed very well with a smallish daily dose of Synthroid), and the diabetes (once contained via diet and exercise, now managed with metformin), I also had to deal with multiple cysts, half a dozen of which required surgical removal.  The most recent one landed me in the emergency room in the middle of the night in excruciating pain, because it had burst.  I still have one ovary, and it’s a PCOS ovary, clearly. 

In sum, I’ve had 22 surgeries, innumerable diagnoses, and a real trial-and-error approach to figure out what’s really wrong with my body.  And then the process of accepting it, really learning about it, and applying what I know to help my body function better has run in parallel with all of these medical procedures and issues.  I had a lot of truly awful medical experiences, pointless and insensitive treatments and assessments, and judgmental people insisting my problem was in my head, or could be resolved if I simply exercised greater self-control.  I get it; I really get it.

Right now, I’m “cured” of my infertility, managing my diabetes and thyroid conditions well, have my diet and exercise program in very good order, have an excellent stress management program, and have reached a pleasing level of acceptance about the ongoing and changing nature of this condition.   I had my last surgery a couple of months ago, for removal of what turned out to be a pair of ovarian cysts, one on each side.  I’m back to a place of relative metabolic stability.  Nonetheless, as PCOS is an evolving life-time condition, I wonder what menopause will bring, and then post-menopause.   

In Part Two of this post, I’ll talk about why I did the inCYST training, and more about why I became a professional in the field of PCOS.

Gretchen Kubacky, Psy.D. is a Health Psychologist in private practice in West Los Angeles, California.   She has completed the inCYST training.  She specializes in counseling women and couples who are coping with infertility, PCOS, diabetes, and related endocrine disorders and chronic illnesses. 

If you would like to learn more about Dr. Kubacky or her practice, or obtain referrals in the Los Angeles area, please visit her website at www.drkubacky.com, or e-mail her at AskDrGretchen@gmail.com.  You can also follow her on Twitter @askdrgretchen.

My PCOS story - Leanne S.

Leanne S.

Day 2 Challenge- My PCOS Story

I was diagnosed with PCOS about 6 years ago at age 18. My Dad got the phone call from the Docs and rang me while I was on holiday. I had no access to the internet or library, I couldn't even talk to my Doctor and ask him questions until the new year. I spent my holiday wondering about what my life would now be like. I knew the basics - hair, weight, acne, periods, infertility - but didn't know to what extent it would affect my life. I was quite upset about it, but glad to have a diagnosis.. now I at least knew what was going on.

Early the next year I went to see a specialist to find out what I could do to manage the symptoms - I basically got told to eat better and exercise more, and was put on the contraceptive pill and something for acne.

My acne cleared up as I reached the end of my teenage years. I've never really had a problem with hair - touch wood - the odd one every now and again but nothing I cant deal with. The contraceptive pill takes care of my periods for me and I have nowhere near as much pain as I used to. I still worry about infertility but really hope that if I get my weight down I should be OK. 

My weight is an issue for me. It has been a constant battle for me since I was about 11. My mother spent a lot of time talking about her weight when I was younger and I think that I absorbed some of her frustrations and anxiety. I was a chubby kid but never overweight (although I thought I was!!), even during my teens where I thought that I was really overweight I wasn't - I would kill to be that size again. I think that just thinking that I was overweight, made me overweight. 

My weight fluctuations between 69 and 79 kgs. I have never let myself hit 80, I always do something about it. I work hard to get the weight off and feel and look good, but then it just creeps back on without me realising it. A lot of the time I sit here wishing I could go back and change what I ate or how much,just so I didn't have to fight to take it off again. But spending time wishing/hoping that things were different doesnt change anything. I need to put my energy into being stressfree, happy and healthy rather than wishing the time away.

I think about food all the time. It pretty much rules my life, and I don't want it to. 

When I have a short term goal like running the Taupo Relay or looking good for my Civil Union - I can do it, I can lose weight - but I want to be able to sustain it... I dont want to look good on a certain day or moment in time... I want to be a healthier, happier me ALL THE TIME.

I think now might just be the perfect time to change this :)

Beautiful You with LeAnne

I'm in love with you. I'm in love with everything about you; your eyes, your spirit, your heart, your drive, your nurturing, and your smile....There's nothing about you that I haven't fallen for. Sounds a bit strange, doesn't it? Especially coming from a woman you've never met before; a woman you've never spoken to, seen, or even heard of before today. But what I say is true. The magnificent, beautiful you is so fall-in-lovable and amazing, that you're out of this world! Once you believe this truth about yourself, even your naysayers will ask, "Who's that girl?!"

They'll be asking this about you! Allow me to explain.....

Being "in love" can be defined as a deep and tender feeling of affection and solicitude toward a person, such as that arising from kinship, recognition of attractive qualities, or a sense of underlying oneness. After seeing the pictures submitted for "The Many Faces Of PCOS", I saw every reason to fall in love with those women who are just like me. And I saw every reason why those women should love themselves! These were women who were fighting and winning the war against PCOS; women who realized they were not handed a death sentence, but given an opportunity to show what fiery strength they had. In those pictures, I saw this: gorgeous, bold, and courageous creatures who desired to live a free, happy, and zesty life! Not even Gone With The Wind could make me cry, but after seeing so many different "mirrors" in those pictures, I was moved to tears, and wanted to share my story, too.

My name is LeAnne. I am 31 years old, and I have PCOS. I was diagnosed in 2005, but knew long before that there was something wrong. I was 22 when the symptoms first began. I'd been on the phone for nearly three hours with my best friend in California when I'd suddenly gone quiet, trying desperately not to wince in pain at the throbbing in my stomach. I finally confessed to her that in just 3 months, I'd gained about 40 pounds and couldn't understand why. How is it possible to gain so much weight after months of cleaning and dusting my night away while singing Cher at the top of my lungs?! Cleaning and dancing at the same time was sure to burn at least a few calories, right? That, combined with snacking on yogurt and carrots instead of Taco Bell, should have at least kept me in my favorite pants. But my body kept gaining, especially around my mid-section. After hearing my concern, my best friend immediately urged me to make an appointment with my doctor. As scared as I was, it still took me nearly three years to get the nerve to see my primary care physician. That's when I was told I had PCOS. I was relieved! Not because I had an illness, of course, but because this "thing" actually had a name. I wasn't crazy. My symptoms were real and, even better than that, they were treatable! However, my excitement was short lived because with that newly found information, came a new set of problems and realizations. My doctor didn't really seem interested in getting me better, but instead wanted to "fix" me with medication and push me to lose weight so that all of my "problems" would go away. This was the same doctor who'd told me just moments before that there was no cure for PCOS, which meant that my "problem" wasn't going anywhere. Metformin, birth control, and prescriptions for appetite suppressants were being shoved at me from every angle.

But what about my feelings?! How would I deal with infertility, skin discoloration, and even the threat of morbid obesity? In a world where women were already expected to be dainty and perfect, how could I fit in? Now that I was diagnosed with PCOS, how would I live a normal, happy life? It took me six years to find the answer to these questions....but when I did, it was like discovering the juiciest, most delicious secret! My worries gave way to excitement and passion and, from that, my life and body began to transform.

Lean a bit closer....are you listening? Great! Because I'm going to tell you everything I know.

Beautiful You with LeAnne is your entry way into a new life. It's goal is to be a place where you can determine how to become your most magnificent self. This blog will enlighten you to new and powerful weapons to fight PCOS and uncover your own amazing physical and mental beauty, the natural way! What you can discover is so surreal, you won't want to just take pictures. You'll want to be on the cover of a magazine! I can help you there. Follow me!

*Please note that I am not a psychiatrist, psychologist, therapist, or trained counselor. I am not qualified to give out any emotional advice. I am a woman with PCOS who is sharing my personal experiences in this blog and I advise you to consult a professional.*

My PCOS story - Holly M.

Holly M.

Day 2 Challenge- My PCOS Story

My PCOS story is just beginning. When I was 18 years old I started noticing that my periods were becoming irregular. I would go for months without a period. Out of concern, I went to see my doctor at the time who ran a Pap Smear and explained it away as just a hormone imbalace. Over the years the cycles would become more erratic or sporatic with no real indication on when it would start or stop. I started developing severe menstral pains so bad they would bring me to my knees. Heeding my doctors advice I chalked it up to nothing more than a hormonal imbalance and stress. I tried to deal with it as best I could.

 

Then, in December 2010 after 20 days of menstration I decided it was time to revist my doctor. Thankfully for me, I had switched doctors since my initial misdiagnosis. After a barrage of testing to rule out cancer, several blood tests, and a sonogram I was given life altering news. I had PCOS. Suddenly all of my peculiar annomolies made sense. The unsightly excessive body hair (remarkably it's all baby blonde, but still noticable nonetheless), the extra weight around the middle, the night sweats, the irregular menstrual cycles, the ovary pain, the baby fat in the face that never really seems to go away. My .sonogram had revealed so many ovarian cysts that my doctor didn't think my ovaries had released any eggs in years. I was labeled "barren" with a slim-to-none chance that I would ever produce offspring. Since I never saw children in my future to begin with, that last discovery hasn't impacted my life.

 

So at 33 years old, my PCOS story is just beginning. It's been quite an adventure so far, but I am glad I have found there are others like me who struggle in weight loss, are baffled at those pesky little hairs that seem to pop up in the oddest of places, play the medication management game, and seek new ways each day to better improve the quality of their life and live with PCOS.

My PCOS story - Shonda R.

Shonda R.
Day 2 Challenge- My PCOS story

High School for me was brutal.  I was overweight, awkward, and not like everyone else.  When I was 16, I was diagnosed with PCOS after going to the gynecologist because of irregular periods and “peach fuzz” that was rapidly growing on my face.  After my diagnosis, things got worse.  I gained more weight despite trying to lose it, and my peach fuzz was turning into a dark mustache that my parents refused to let me remove despite my pleas.  I was officially dubbed “the mustache lady” in my school and my humiliation carried with me to my adulthood.

I went through a period of my life where I had had enough of being overweight so I ended up not eating very much for three months…doing so resulted in me losing a lot of weight and finally feeling good about how I looked but what I didn’t realize is that I was making my PCOS condition worse.

Eventually, the weight started coming back on slow at first and then it seemed like all at once it was there and I weighed far more than I ever had in my life.

I was going through some aggravations with my Dr because nothing seemed to work to help me and my condition and she was extremely insensitive to my feelings.  I ended up leaving her and that started my on again off again fight with myself to even go to a Dr. to help treat PCOS.

Several years went by and despite having finally lost 100 pounds on my own with determination and hard work, I was still grossly overweight and I had finally hit my plateau.

Recently, I got married and we have been talking about starting our family but have not had any success at all.  On July 18th, I started a cycle that still to this day has not ended (October 11).

This concerned me so I made an appointment with a new Gyno that I was referred to.  I went today for my appointment where I found out that I was going to have a biopsy because she thought I was showing signs of either pre-cancer or cancer.  I now have to wait until the results come back before knowing what my future holds.

Prior to today I have been in PCOS denial.  Telling myself that no matter what, I will get pregnant and have children all the while not being honest with my own fears and allowing myself to prepare for what I had to face today.

All I’ve ever wanted was to be a Mom.  I am determined that one day I will be and have finally accepted that adoption is the way that I am meant to take.  It is my only desire and dream to help other women like me who are unsure, scared, and don’t know what way to turn.  Being aware of the disease and knowing your options are two very important things I have learned this last year.  Though I may never be rid of the disease, I can and will control it.  It is in my power to change my life and control my future…it is in your power to do so with your life as well…will you?

My PCOS story - Holli R.

Holli R.
Day 2 Challenge- My PCOS story

I was 8 years old and came home from school one day and told my mom that I was bleeding from “down there.” My dad freaked! My mom went and bought me some pads. From then on I would always tell me mom when I needed to go to the store for “that”, as I described it. My periods have always been abnormal. They were either really heavy or really light. At the young age of 15 I was raped and ended up pregnant. I did have an abortion. Before anyone asks, yes it is hard to live with at times but it was not my decision. My parents are the ones that said it was in my best interest. I went to an Ob/Gyn. It was then I was diagnosed with PCOS. My doctor told me that I would never have kids and gave me Metformin. I was taking it for a few weeks when I noticed I was really nauseated from it. I called my doctor to tell him and he said to stop taking it, so I did. I was really uncomfortable with him the whole time I was a patient in that office. In 2008, I married the best man in the world. As a result of getting married I ended up changing insurance companies which means a change in doctors. My current Ob/Gyn is amazing. She didn’t act like she was the best of the best. She talked to me through my first PAP with her. She also explained to me in English, not doctor talk that my struggle with weight was due to the PCOS as well as the abnormal periods. From then on we made plans and I made notes. I explained to her that we really want to have a baby. I also let her know about the other problems that I have been going through with my periods. She knew that having a baby was very important to my husband and me. For two and a half years I would have periods that would last two days to six months. I was then prescribed Megace to stop the bleeding for the next month. She then gave me a prescription for Provera to induce a period and Clomid to stimulate ovulation. I was also to get at home ovulation tests, so I did. I did 3 rounds of this at different times throughout the year. Then, I started to get these painful contractions in my lower pelvic area but I continued like always. So after several rounds of no ovulation, even with the medication my doctor decided to go one step further. In early December, I was in so much pain from the contractions that I just couldn’t take it anymore. My doctor recommended we check for Endometriosis. She also did a PAP and saw that my uterine lining was too thick. With all that said it was time to move on to step two. Step two took me to the hospital for surgery. At the ripe young age of 23 I went in for my very first surgery ever; Laparoscopic surgery for the Endometriosis and a D & C for the thick lining this past January. From January to the beginning of August I was fine…no pain! September comes around and the contractions return. I go back for yet another PAP and that shows “normal.” My doctor tells me she has done all she can do and refers me to a Reproductive Endocrinologist. Now we move onto step three. Since I don’t trust my body to just anyone I do a little research on this doctor. I found out that this doctor, female, specializes in PCOS. On my first visit to her, my doctor, my husband and I made plans and asked questions. She said that the contractions were due to the lining building up over time because I wasn’t having regular periods. She first suggested that I go back on birth control and we do an intravaginal ultrasound and a biopsy on my endometrium. I started the birth control last month. I am getting ready to start my second pack. Today, 11 Oct 2011, I went back to see my doctor. The ultrasound showed that the lining was “normal.” She also looked at my ovaries; she was unable to see the right ovary. She did state that my left ovary looked good and did not look polycystic. The biopsy on the other hand was the most painful thing I have gone through thus far in my life. I have to wait 7-10 days for the results of the biopsy. I will inform every one of the results when I get them. If anyone wants to talk or have questions about any of the above please feel free to contact me. I will be glad to share with you how I worked through the guilt of the abortion several years after it happened.

My PCOS story - Nicole T.

Day 2 Challenge- My PCOS story

Nicole T.

My name is Nicole T and this is my story. In January of 2009 my husband and I miscarried a child we had been trying to conceive for 10 months. We were devastated. The doctor at the hospital said he saw no reason we wouldn't be able to conceive again easily. Unfortuantely, he was wrong. My periods started coming later. I went from a 30 day cycle to a 47 day cycle until October of 2009. They just stopped. I took many pregnancy tests only to get negative results. I was so frustrated and confused. I spent hours researching the reasons you would skip a period without a pregnancy to no avail. I couldn't find anything that stuck out like, yeah, that's what is going on with me. In 7 months I had gained about 30 pounds which seemed odd to me, but I figured it was because I was still greiving. So around the end of December, my period finally showed up. And then for the next 8 months, it played the same game of being random and 2 or 3 months late. I started getting hot flashes. I became unnecessarily mean. I couldn't sleep. I was so frustrated and nothing seemed to be working right in my body. I felt out of control, and that freaked me out. I started to think I was starting menopause at 29. In Septmeber of 2010, I had the worst period of my life! I was vomiting from the pain. I was passing clots. I couldn't understand why this was happening and at the time, neither my husband or I had a job- not to mention insurance. So I just dealt with it, thinking it would work itself out. My period went back to being random. I would go months without it or a month or two with it. In December of 2010, I quit smoking after 15 or more years of the habit. Apparently, my quitting opened the flood gates on my hormones. I became violently angry, even at the smallest thing. I couldn't control how mad I got. It seemed like when I got mad, I was ready to kill! It got to the point that I didn't even like myself anymore. And although I have an incredibly patient and understanding husband, I am really surprised I am still married. Finally, we were in a position to be able to afford to go to the doctor. I had some hormone panels done and found that I showed signs of having PCOS. I was then scheduled for an ultrasound which resulted in the doctors finding some cysts. My doctor refered me to a hormone specialist. A wonderful doctor who said basically what he could do for me was prescribe me clomid if I wanted kids or birth control if I didn't. He said the rest was up to me. That controlling PCOS meant making lifestyle changes which included a better diet and exercise. He didn't get too deep into it, though. So I decided to take the clomid. Since the loss of my angel, having kids is all that I have wanted in my life. The first month went okay, but my hormones seemed to have gotten more out of wack. My doctor said that it was normal. I didn't conceive, but I did ovulate the first month. So I gave the clomid another shot. The second month wasn't without side effects. I was vomiting. I had abdominal pain, hot flashes, and I couldn't sleep. And somehow it seemed worse than it had been in the past. I stopped my treatment with clomid. I decided to do my own research on PCOS. I came across several good websites... an entire community of women that shared in my misery. I found out that the low glycemic diet is a good basis for someone with PCOS as well as several herbal supplements and vitamins that would help with symptoms of the disorder. I decided that my health was first and foremost and if I conceived along the path, then I would be happy. I started charting my temperatures- not necessarily for conception purposes, but more to be sure that my hormones and my body is doing what it should be. I have not felt this good in years! I am happier, more mellow, I have more energy and I am sleeping better. I have ovulated every month since I was first diagnosed. I have lost 25 pounds and gone from a size 24 to a size 16. I had started walking 2 or 3 times a week and now I am doing Zumba classes for 1 hour 2 times a week. I feel so much more like myself than I ever have, I think. I am so thankful for finally knowing what I have and how to make myself better. Now, I am looking forward to conceiving my first child. I no longer feel like it is out of my reach!

My PCOS story - Megan M.

Megan M.

Day 2 Challenge- My PCOS story

It is hard to know where to begin so I will start with a brief background.  I was the last girl in my class to start my period and have never had regular cycles since then. One of the most frustrating aspects of this journey is that my obgyn would never listen to me! I can remember being as young as 13 telling my doctor “something is wrong with me and I am afraid I won’t be able to have kids when I grow up.” The doctor always just hushed me and told me it was normal to never have regular cycles. One weekend in collage I even had severe pain that the doctor said was likely a cyst rupturing. I asked if I needed an ultrasound to figure out what was going on but they said it was normal. I was placed on birth control pills several times growing up to regulate my cycles, but the side effects were so severe that I finally threw them away (one of the best things I’ve ever done.)

I got married in May 2008 around the same time my husband convinced me to toss that birth control. We figured I would get pregnant within a few months. Two years later, I really started to worry. I researched what could be wrong and pretty much diagnosed myself with PCOS and then begged my doctor to do more testing. After an ultrasound and blood work, I was diagnosed in June 2010. I was placed on metformin and then took clomid…50 mg, then 100 mg, then 150 mg. Each time resulted in no ovulation and crushed hopes.

I changed doctors and went to a fertility specialist. This doctor performed ovarian drilling and a D & C in October of 2010. Then he placed me on two rounds of femara, which unfortunately also resulted in no ovulation.  This doctor said our chances for ever conceiving were 0-4%.

           Receiving this news was devastating. It was then that we decided to see another doctor who promoted a charting system that reveals vast amounts of information about a woman’s cycle. He tested my glucose levels, which ended up being fine and I got off the metformin. I have been charting for 8 months now, and we know more about my cycle than I ever have in my life (If you are interested its called the Creighton Model.) I also just had a surgery done called ovarian wedge resection and are waiting to see if it can correct my cycles…and so far so good.

          Looking back over the past 3 + years, it has been tough. But I am proud of myself and my supportive husband! We have come so far since I was first diagnosed. Initially, I felt like the world was caving in and that I was doomed to have diabetes and never have children.

However, I have taken this PCOS thing in my own hands. My husband and I have always eaten fairly healthy, but after doing a lot of research on nutrition and PCOS, we have drastically changed our diet- no artificial sweeteners, preservatives, or anything processed.  And we mostly buy organic meats, chicken, milk, etc. It is amazing how good my body feels after making these slight changes. As a registered dietitian, I have decided I want to commit my practice to helping as many women as I can to take charge of their fertility and health through proper nutrition. Exercise is also crucial, and I commit several days a week to going to the gym or getting outside and walking. I have found yoga to be an excellent stress reliever. I have also grown in my spiritual life, and I am learning patience and trust in God’s timing.

          There was a time when I was ashamed or embarrassed to tell people about PCOS, but now I would shout it from a mountain. I have overcome the anger, guilt and shame, and I feel empowered that I can make choices in my life to control this. It is crucial to get the word out to help those suffering in silence or who may not even know they have PCOS. It takes a strong woman to fight this, and I am excited to be a part of groups like Power Up for PCOS to connect with others.

Blessed to have PCOS by Beth Wolf

How can I be blessed to have PCOS?  I took a death sentence and turned into a life journey to find myself and God.

Here is my personal PCOS story:
     As I was growing up, I always had issues with my monthly cycle.  It was never regular and they couldn't find out why.  I went on birth control and then went on the depo shot.  I coudn't get pregnant either.  I finally ended up getting pregnant by chance in 2003 and had my daughter in 2004.  After I had her, things got a lot worse.  I couldn't lose the pregnancy weight, my cycle's were all screwed up.  Either I had no period or I had a period all the time for months.  I had some other not so great symptoms that we women don't like to talk about much.  I had HAIR (OH NO!) in bad places.  I had other symptoms as well but the weight, periods and hair were the most depressing.  Oh, yeah, I forgot the depression and anxiety.  I was actually diagnosed bi-polar but it went away the next day.  Get that!  Turns out your hormones have a lot to do with how you act.  I would have never known.
     OK, so on to the serios stuff.  In 2008, after being un-diagnosed for years, I was told I had PCOS. I spent the next few years sitting on my behind feeling sorry for myself. I felt like I was the only one out there and I had no hope of a better life.  My symptoms got worse and I just felt like dying.  I also found out I had Polyups which made things even worse than they already were.  I went in for 2 D&C's to get rid of the polyups.  Nothing was changing, I was alone and there was not hope.
     I sat there day after day thinking what I could do to change this.  i saw women post about how they were getting healthy to get pregnant and I definitely wanted more children but it just wasn't enough motivation to make me do something about my PCOS.  Then all of a sudden, I figured out what could motivate me to get off the couch. I would start a walk-a-thon to raise money for PCOS research and awareness. I didn't care if I was the only one out there walking. I told all my friends and family as well as posted it everywhere before I could change my mind. Then I went in search of somewhere to give my money to. I could find nothing. I was turned down by several places including a hospital. The hospital had told me that pcos wasn't a sexy enough disease to raise money for.  They considered cancer their sexy disease because it has touched everyone.  1 in 5 women have pcos, how can that not be enough to raise money for?  I was frustrated and gave up.
     A few months later, I received an e-mail asking me if I was still doing the walk and if I could give them a pledge form because they wanted to walk with me. I felt re-newed knowing there is someone else out there that wanted this. During my crazy moment of trying to figure out how to tell them I couldn't do it, my dear husband went in search of places to donate for PCOS. He found an article about a research foundation that was started because of my contacting all these places when I had originally decided to walk. I was amazed, overwhelmed and a wreck (in a good way). I couldn't believe that just little old me could spark something like that to happen. The article was by Monika Woosley and she started the InCyst Institute for Hormone Health. She created it to helps fund research about hormone disorders with a focus on alternative/nutritional/complementary treatments that are difficult to find funding for. I contacted her right away and she put me in touch with other people in my area that could be of help for my walk. Before long, we even had a hospital telling us they would sponsor us. I was amazed at all this happening so quickly.
     I look back now to where I was not even a year ago and I think to myself, I am PROUD!  I feel like a new person and I feel like I can inspire others to make changes in their lives.  At this point in my journey, I cannot say I have managed my PCOS but I feel I am on the right path and will be there very shortly.  I am so in tune with my body now and I can feel it inside.  I understand that this does not make my PCOS go away.  There is no cure.  You can take those words and do what you wish with them.  I chose to make my PCOS into a positive thing for me.  Now I go to my PCOS support group and choose to tell everyone I meet that I have PCOS.  When they ask, I have no shame telling them all about the symptoms it causes and to make them aware of how many women have it.  They are always shocked but I always think to myself, what if someone they know has those symptoms and they end up telling them to ask their Dr. about PCOS.  Then i would have helped someone get diagnosed that might now have been.
     When I go to these events, I meet so many amazing women that I relate to with-in a second of meeting.  They inspire me everyday that there is a silver lining on this cloud.  Now I look to the future and what I can do to make this world easier on my daughter and future children that may or may not have PCOS.  I will fight the battle now so they can have peace later with PCOS.
     Along this journey, I also found God which has helped me through so much of this.  I thank him for guiding me to be open, honest and confident to take on this challenge of spreading the word and hope about PCOS.