One of the lucky ones March 29, 2010

Hi my name is Autumn I live in New Hampshire. I’m 34 years old, still single, and have no children.
I became menstrual in Georgia on the road to Florida on a family vacation. After convincing my father that I had to stop to use the bathroom again he freaked out when my mother told him what happened. I was 12 and he was not ready. I had always been thin but after that the weight just piled on. I had irregular cycles for the first year skipping months at a time. My mother asked our Primary care doctor and he told her it was normal for girls who are just starting and if it was not straightened out by age 15 I should see an GYN.
Three months before I turned 15 I was hit by a car walking home from school. My period disappeared for over a year. When it returned it was just as irregular as always. Dr. Mark told us that this was not unusual due to the trauma on the body and if it had not straightened out by 18 to look into a GYN.
Needless to say at 18 I saw my first GYN. She was awesome and was very sensitive about my nervousness having that kind of exam. She sent for blood tests and checked my thyroid among other things that could cause the weight gain. The tests came back PCOS positive.
She put me on Metformin and Birth Control pills. I went from two cycles a year to two cycles a month. OH HELL NO!! I stopped taking them after two months and she tried a few different brands till I found one that gave me a cycle every month. Too much in my opinion. I took this for a few years and then I stopped because I was annoyed at getting a cycle every month. Especially since I didn’t need them for their primary function. I have never taken them since and have yet to fall pregnant. I have not actively tried to conceive but do not prevent. I would like to have a baby someday but as the years pass it is looking less likely it is going to happen without medical assistance.
Now at 34 years old I am morbidly obese, have excessive hair growth on my chin, sideburns, and arms. I have to shave from ear to ear every other day. I am horribly embarrassed by my body and spend a great deal of time isolating myself.
I also have severe depression with psychotic features. My depression is triggered by my PCOS as well as a life changing event that I still have yet to get over. This does not help my isolation because I am in the small percentage of people who have hypersomnia as apposed to insomnia. The more depressed I am the longer I sleep.
I was recently diagnosed diabetic and prescribed yet another pill (Januvia). I also take Metformin for the PCOS antidepressant (Prozac), an anti-psychotic (Invega), a med for high cholesterol (Simvastatin), and a stimulant to keep me awake (Ritalin).
My blood work numbers are normal when I am medicated. I have tried a few times to lose weight and have succeeded and failed. I do go to the gym once or twice a week though that is due to be upgraded in April.
I am on vacation right now and just posting an intro. I feel I was very lucky to be recommended to a great doctor who found the PCOS right away. It has gotten worse over time as I fall deeper into a depression. It has started affecting my mobility and so I’m making plans to counteract it.

A Round Peg in a Square Hole March 28, 2010

My story is a little different to the other ladies in that I’m not centered around fertility.  I am also different to a lot of other cysters in that I do not believe that weight loss is going to either fix my PCOS or change my life.

My name is Kath, and some of you  might know my other blog, Fat Heffalump, which is a fat acceptance/body positivity blog.

I am 37 years old, single and what I like to call a Super Fatty.  That means that in the redundant BMI terms, I am morbidly obese.  However, if you knew me, you would know that there is NOTHING morbid about me (well, maybe a little bit of morbid when I’m really hormonal and my work is getting on my nerves, but that happens to the best of us).  I am just a very fat woman, and that’s where my body has decided I am going to be, despite a lifetime of diets, crazy exercising and every medication and wacky weight loss plan there is.

The first time I presented to a doctor with symptoms that I now know are PCOS symptoms, I was 12 years old.  I had gone from a “normal” sized child at 11 (though I was almost my adult height) to a fat girl at 12.  I had violently painful, irregular periods, and when I saw the doctor he just suggested I should lose weight.

Believe it or not, I did not get a formal diagnosis until 20 years later, at age 32.   Despite presenting to doctors time and time again with various symptoms that I now know are typical PCOS symptoms.

Almost always the “solution” was to lose weight.  One doctor, when I was 19 years old and went to him because I’d been bleeding full, extremely heavy period for 18 months actually said to me “Lose some weight, find yourself a fella and come back when you want to have babies.”  Nothing to address the massive menstrual blood loss, the rampant anaemia, the physical pain and the fact that I had a terrible quality of life because I was dealing with heavy bleeding every single day with no respite.

The irony is, when I did lose weight, and a LOT of weight (about 55lbs), my symptoms only got worse.  My periods were so painful I was in agony, though they only turned up every third month or so.  I had really bad skin and hirsuitism.  And the depression… God the depression was at it’s very lowest point when I lost that weight.

Of course, I put the weight back on and then some (despite having an eating disorder and being on crazy exercise binges) anyway, as extreme or yo-yo dieters almost always do.

So there came a point where I had to deal with my self esteem and depression first, more than any of the other symptoms.  I had to learn to stop expecting to meet some kind of physical ideal, and learn to value myself for other than my body and my breeding ability.

I have been learning to love my body for what it is, regardless of the fact that it doesn’t behave like most other women’s bodies.  I value the body that propels me through life, that does pretty much everything I need it to do, despite being a Super Fatty.  Believe it or not, I really feel that I am at my healthiest right now, despite my body being a very fat one.  I’m strong and enduring, I feel good and have good energy most of the time, and all my vital numbers are good.

I’m working to give up all the disordered eating and exercising habits I have had for most of my life.  It’s not easy, but it gets less difficult a little each day.  I am learning to listen to my body and nourish it with what it asks me for.  It asks me for what it needs if I take the time to listen to it.  If I don’t listen to it, it gets sick, lacks energy or breaks out in allergies or acne.

I am a single woman at 37 and not in a position to have children.  One day I would like to see that change, but it doesn’t make me less of a woman to be childless and single.  It doesn’t make my health less important than women who are trying to have families.  It doesn’t mean my quality of life should be any less, should be diminished because I am not breeding.  I am not deficient or defective because I am childless.  I have plenty to give to the world even though I am not giving it children.

I know there are many, many other cysters out there who don’t fall into the weight loss and fertility boxes when it comes to their needs around living with PCOS and I want to hear from these women.  I want them to know they are valid human beings who deserve good health and good quality of life too.

Julie’s PCOS Journey March 27, 2010

Hello everyone, I’m Julie. I’m currently 31, I have been married for almost 7 years, together with my husband for 9.

In July of 2003 I was a newly wed of 2 and half months, and as we had been together for 2 years already, we decided to start trying to conceive. After 5 months of no periods and big fat negative pregnancy tests, I went to my doctor. She was stumped, and sent me to see a specialist.

I had NEVER heard of PCOS before. I walked into the office, the dr looked at me, asked me a couple of questions, and said “Yep, you have PCOS, look it up online, and call me when you’re insured and ready to get pregnant.” Obivously he’s not my dr amymore after that!

I have tried Metformin, Actos, diets, to help with my PCOS symptoms. I suffer from lack of periods, hair loss, skin tags, obesity (I was 364 pounds before my weight loss surgery), infertility, depression, high blood pressure (also pre surgery), and hirsutism (which is male pattern excessive hair growth) on my face, stomach, and arms.

Emotionally I’m having the most difficulty with the infertility aspect of my PCOS. I want nothing more than to be a mommy. The depression and emotions that my body is broken, I struggle with feeling like a failure, because I am supposed to be a woman, and women have babies, and after 6 years of trying, (we took the last year off to recover from weight loss surgery) I’m still waiting my turn. . .

I also have major bouts of depression because of my hair loss. I used to have very long, thick, beautiful hair. I couldn’t put a large pony O around my ponytail more than twice. . . now I can wrap a small one around like 4 times. I was defined by my hair, and I feel naked and lost without it.

So for those of you out there reading this and nodding your heads, remember you’re so not alone in your personal POCS struggles. There is a whole world of women out there who really do understand how you’re feeling!

It’s tough being a Cyster March 27, 2010

It’s tough finding out you just lost a baby when you thought it was “just another period”  The emotional impact is hard…  but I think it’s even harder on our partners.

Having had 6 miscarriages in the same manner, it’s a little shattering when I *do* get a period.  That little voice in the back of your mind wonders…  is it a period…  or another miscarriage?

Fortunately, my last miscarriage was in 2005, but 5 years later, I still jump when I see blood.  I find myself mentally checking back all the symptoms I *may* have missed.

Even if I find out I’m pregnant (fingers crossed for the blood work two weeks from now) my husband doesn’t feel he will get excited until he sees that “little dot on the screen.”  Each miscarriage, even though he kept up a tough exterior and puzzled along with me why we couldn’t carry full term let alone possibly past the first month (keep in mind, since I have PCOS and get erratic periods, it’s hard to pinpoint the date let alone month of conception) I think that because he loves kids so much and wants a family also, it hurt him I think as much if not more than it hurt me.  We wondered which one of us was the “defective” gene.

All these hurts and now I fear that when I *do* become pregnant…  we will likely be too scared to be excited.  I’ll be bouncing off the walls happy and excited…  but he will likely be the “stay grounded, don’t get too excited until it’s in the safe and clear zone” one.

I sure hope I’m wrong.

Dealing with family March 27, 2010

This obviously doesn’t apply to all of the cysters, but I’d like to talk about the issues of dealing with PCOS and our families. Most of them don’t understand, at least in my life it’s true, and don’t try to understand.

Mainly my frustration at the moment is with family and the issue of infertility. Like I said, not all of us are facing this, but many are. It’s to the point of wanting to avoid family gatherings so I don’t have to face the questions of when we are having children. I’ll admit that I haven’t shared my PCOS with ALL my family, as I don’t feel it’s something they ALL need to know. But even worse than the family that is ignorant to your condition, is the family that knows about it and pretends they understand.

I mostly deal with this from my in-laws. I am the only adult, married person in that family that has not had a child, and for that I am viewed as an outcast. I am ignored when the talk turns to children, as it always does, and even worse is when they openly stop talking about it for fear of hurting or upsetting me. While I appreciate that they care, I think it makes the situation worse. Whether or not I am trying to have children is my and my husband’s business, and I don’t feel the need to share it.

I’m sure that I’m not alone in this frustration. I’ll admit that this blog post may seem like more of a rant, but some days we just need to rant.

My Journey to the Centre of the Earth March 24, 2010

It’s been a heck of a ride and thus my introduction here.

I guess it could be summed up like the Visa “Priceless” commercial

6 Miscarriages
8 Doctors
100+ Ultrasounds
1,000,000 Tears shed
2,000,000 Questions asked

1 Diagnosis of PCOS:  PRICELESS.

I’ve had erratic periods since I entered womanhood at the age of 14.  My first period lasted a month.  That was it for awhile and I put it down to my hormones settling into place.  Sadly that was not the case.  I would skip a few months between periods and each period I had made up for each one “missed.”  It made for some very embarrassing moments in school, which I was an outcast anyway because I was the new girl in this small town.

I got used to it, although didn’t like it, and in the summer of 1999 at the age of 22 I had my first (and fortunately last) ovarian cyst rupture.   I didn’t even know what it was I thought my appendix was rupturing.  I passed out from the pain and was taken to the hospital by ambulance.

Fortunately for me an ob-gyn was there wrapping up a delivery so looked at the ultrasound and said that I had 4 cysts rupture all at once.  He “unofficially” diagnosed me with PCOS and prescribed prometrium.  I took my first one a few weeks later while getting ready for bed.  Five minutes later I was on the floor unable to move.  Another trip to the ER and it was suggested that I stop taking it (they didn’t have to tell me that) right away.

That ended THAT and I continued to live with the erratic periods that were becoming even more erratic with me typically only getting a cycle twice a year.

I did try going on birth control to get a period every month, but I was so absentminded that I kept forgetting to take it.  So said screw it.

Fast forward to 2005.  I was rushed to the hospital with labour like pains and weak knees.  They gave me a pain shot but didn’t say anything about pregnancy.  I didn’t know what the heck it was.  I had to see my regular doctor and they reviewed the bloodwork and confirmed that I was pregnant and likely lost the baby.  I was speechless.  I had been told repeatedly that the chance of me being a biological mother was very slim (likely due to my erratic periods) and my boyfriend (now my husband) was told he had a better chance at winning the national lottery than getting a woman pregnant.  At least that was the case with his ex-wife (Divine Intervention??)  I phoned him at work and informed him of what happened.  He took over from there taking me to all the ultrasound appointments because my HCG levels were still elevated and since nothing was being seen in the ultrasound they were concerned about a possible tubal pregnancy even though my body aborted one.  Repeated blood tests finally showed the levels going down and I was on my “merry way.”  I was upset because I didn’t even know I was pregnant.  My Mother wondered…  but never said anything.  I apparently went to the bathroom more frequently but I didn’t even notice this.

5 more miscarriages between October and March the following year and two specialists later and they finally learned that I had a full length uterine septum that was preventing the fetus to attach to anything and would die.  A surgery was booked and performed.

Since then I have had zero pregnancies.  We tried for a year, but it was always hit and miss with the periods.  I was seriously wondering how in the world I was able to get pregnant 6 times before and then suddenly ZIP.

We went in October 2009 back to the specialist that diagnosed the septum and he ordered blood tests.  He saw my hirsuteness (on my face in the form of “side burns”) that I usually had waxed off and he started looking for the presence of PCOS.  It came back just screaming PCOS.  (How was I able to get pregnant before then??) and put me on Metformin.  The original idea was to work my way up to 3 a day.  No matter how I tried I couldn’t tolerate 3 so he dropped me down to 2 a day and I’m now functional again (my house is happy for it too) and pain free.

As I write, I have not had a period since January.  I was regular for maybe 3 months and that was it.

The current plan now is for me to get blood work and if it comes back negative for HCG, to start my first round of Clomid.

I hope to have good news soon.

Unlike many women who have the “obesity” from their PCOS, I seem to be one of the exceptions of the rule.  I did battle a thyroid issue several years ago in where my thyroid levels were extremely high.  I took eltroxin for awhile but it seemed to work itself out.  I did quit smoking in June of 2007 and gained 30 pounds putting me up to 160 pounds on a 5’6″ tall medium frame.  Weight, while I try to watch it for health reasons (heart issues and diabetes run rampant in my “more to love” family) matters little to my husband and I.

A little about me now that you know what’s going on “down south”….

I hail from a small Lake Huron Coastal town and listen to just about anything but rap.  I have 2 kitties that were part of the picture when I married my husband, my dream some day is to own a dog again.  I enjoy writing small stories (although haven’t worked on one in years), watching the birds that visit my feeders, taking pictures and spending time online.  I’m hard of hearing and wear two hearing aids (which makes for interesting conversations sometimes when I mishear something) and spend most of my “social time” online.  (That whole new girl in town experience in school made me become a hermit of sorts….)

I love hummingbirds (as you can tell in my username) and await their arrival every year.

Thanks for reading my experience and I hope it has helped even just one person out there who may be going through a similar experience.

Jenn

Diagnosis Frustration March 24, 2010

While commenting on a previous post, I remembered back to when I had never heard about PCOS, and was just a confused teenager in high school whose friends had all gotten their period and I hadn’t.  On top of that, I had the joy of little hairs springing up where they shouldn’t be.  As if the teenage years aren’t awkward enough!

Eventually I had a talk with my Mom, and she took me to the doctor.  After running tests and discovering that my hormones were out of whack, I was sent to an endocrinologist.  This awful doctor told me to lose weight, like I had never heard that before as a chubby teenager, and prescribed birth control pills to me.  Well, the pills made me so sick, and most of my mornings were spent throwing up in a bucket on the way to school. (Sorry to gross anyone out.)  When my Mom called and spoke to the Dr., her response was that I needed to toughen up, and she refused to change my medicine, or even go another route, even though the BCP did nothing to start my period.  Thankfully my Mom never brought me back to that doctor. It was years later that I found my wonderful Dr. that diagnosed me with PCOS, and actually sent me to a specialist that truly understood.

A big part of this blog is for those that have PCOS, have recently been diagnosed, or think that they may have it.  My advice to you is that you don’t let anyone tell you to “toughen up” or tell you anything that you don’t like or agree with.  There is a lot of ignorance out there about PCOS, so please do your own research, ask questions of fellow cysters (like us, ahem…lol), and most importantly don’t give up.  The ladies of this blog know first hand the frustrations that come with PCOS.  Just know that you are not alone, and we are always here for advice, or questions, or just to listen.  We are not doctors and may not know all the answers, but we would love to help you find them.  That’s what we’re here for.

Hello! My intro… March 21, 2010

Hello all,

My name is Terri, and I was diagnosed with PCOS in early 2002. I was still somewhat a newlywed, married in October 2000, and was having my lovely yearly exam when my OB/GYN said that she was sure I had PCOS, and told me to search the internet for symptoms and it would make sense to me. Not much info was available then, not that a whole lot has changed, but once I did get a little info about it, and started hearing all the many symptoms or PCOS, I knew I had it before any test confirmed it. At this same visit was when my Dr. so cheerfully told me that it would be next to impossible to get pregnant, which is not something a newly married woman wishing to start a family wants to hear.

As many of you may know, that diagnosis comes with shock, fear, sadness, and many other emotions. Even now, 8 years later, I still have issues accepting it. I spent a lot of time researching this disease, and while doing that I stumbled across many other women, or “cysters” that were dealing with the same things I was. So for those that may have just been diagnosed, there is a wonderful cysterhood of support out there for us. I personally have only made it through at times through the support of my cysters. If there is one thing I can tell you about PCOS, you are not alone.

I hope we can be of help to some fellow cysters out there, or even help someone that may live with or know someone with PCOS. It is more and more common these days, and I hope we can shed a little light on that using this blog.

Terri

Becoming a Cyster March 21, 2010

As I said in my other post, I was diagnosed with PCOS at 17, but we suspected I had PCOS for a little over a year before that. What happened was, while we were living in Tennessee my mother discovered I wasn’t having periods. Now this had been going on for some time, and she really hadn’t noticed because I have three older sisters so all the female supplies were being used. When she found out I hadn’t had a period in more than a year she took me to the doctor. After asking a ton of questions the doctor handed my mom a single sheet of paper that had a brief description of PCOS as well as the suggested treatment options. Then the doctor scheduled an ultra-sound to see if I had cysts. This doctor didn’t order any blood work as far as I remember, just the ultra-sound. So I went and had it down and it showed no cysts. So the doctor decided, as 99.9% of doctors do in Tennessee for young women, that she would prescribe birth control and I’d be just fine. Didn’t do the blood tests that were mentioned on the sheet, didn’t talk about the other medications.

Well mom wasn’t exactly happy with this and since we knew we were going to be moving in about a year we waited. Well we moved to Iowa that summer in late June, early July. I started school, got a job, and was pretty much a hermit for the first half of the year. Then in February she made an appointment with a local family practitioner, Dr. Holsinger. We went in, got all the paperwork done to establish me as his patient and did the whole family history thing. Well when the doctor comes in to see me mom tells him what the doctor in Tennessee said and why we hadn’t gotten me treatment there. So he asks me all the same questions as the other doctor did and then he immediately puts me on birth control along with ordering blood tests to see what my hormone levels and other things were doing. He also explained that after the tests came back we’d decide on where to go next, he also wanted to see me in a month to make sure we didn’t need to change the birth control dose. Well about a week later we get a call about the tests, I was showing all the levels that pointed to PCOS (I can’t remember what all the tested). So after about a month we went back in, and he put me on Metformin. Again we waited a month and he ordered some more tests about a week before I was supposed to come in again to check my potassium levels along with my insulin levels. The showed normal so at the next visit he put me on Spironolactone. And again we waited another month. At the next visit he said he didn’t need to see me for another six months and that I’d lost weight. Over that summer I lost 21 pounds, and went from a size 20 womens to a size 18 regular. Then the weightloss stopped and I’ve stayed in the 230 pound range ever since.

So anyway, now I’m 21, and I still take all three of the medications and they’ve helped with my symptoms. Though when I moved out here to Montana I had a bit of trouble finding a decent doctor. And I still get questions from people who see what medications I take, “Are you diabetic?” No I have PCOS, “Oh is that like Borderline Diabetes?” Not really. Get’s a bit annoying when people haven’t heard of something that I know is becoming more and more common, or at least more and more recognized, in women.

Barbara

What Cysters United is About March 19, 2010

Hello again!

Welcome to Cysters United, as you can see we have a few contributers posting already, which is wonderful.  I really look forward to kicking this blog off into subjects around living with PCOS.

As Barbara mentioned in her post earlier, this blog was borne of a discussion that started by her posting on her personal blog that she wished she could find more real stories from women with PCOS (or Cysters, if you’ve not heard that term before) about every day life.  What is available to us are a lot of dry books on the medical statistics of PCOS, which can be terrifying, diet books and fertility information.  There is very little out there for women that do not subscribe to the diet/weight loss doctrine, who either aren’t at the stage of their life for having children, don’t want children, or have succeeded in having children.  There is very little for the lesbian cyster, the young cyster, the menopausal cyster, the child-free cyster, the the fat acceptance cyster.  So we want to create it here.

That doesn’t mean that we won’t be talking about weight loss or childbearing, for a few of our contributors it’s relevant.  But it does mean that we will be adhering to the fat acceptance/health at any size philosophies, which I will explain more later, and that talking about PCOS will not just be about fertility.

What I would like to see are you cysters out there that come across this blog joining in with discussions and blog posts of your own.  If you have any ideas on subjects you’d like to see us talk about, or would like to contribute a post, please email Cysters United at cystersunited@gmail.com