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.

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.

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