MoiMeMoi

I’ve decided to write about a disease also known as a syndrome because it can manifest in many ways called Polycystic Ovarian Syndrome (PCOS).  I was diagnosed at the age of 21.  Yeah me right?

I didn’t realize that getting my first “cycle” at the young age of 17 was a sign too. Getting my first period late was a joy I thought.  I was very mature and knew what to do without the help of my mother.  I didn’t get another until I was 18 and so started my journey of barely ever having my period.  This was also the same year I had a cyst the size of a lime rupture on my right ovary and was hospitalized for which I thought was pretty normal too.  I was wrong.

At 21 I had gained 100 lbs. in a year.  I was really worried because I had been thin my whole life.  I remember going shopping and crying because nothing fit me….nothing!  My aunt used to shop at this plus sized store and her clothes were so bad and I knew this was my fate and I just cried.  A friend told me about Lane Bryant and I found that they sold clothes that looked liked “normal” clothes but in bigger sizes.  I dreaded from that day forward even today to go shopping for clothing. Even now my husband doesn’t like to join me because it stresses me out to try on clothes.

Around this time a friend had me go see my OBGYN since I wasn’t having periods and the 100 lb. weight gain that year. I went.  He diagnosed me with Polycystic Ovarian Syndrome.  The massive weight gain, my ovaries had tons of cysts on them, and I did pluck hairs from my chin (again, thought this was normal as lots of women do this).  If you take all my symptoms together I fit the profile of someone with Polycystic Ovarian Syndrome.  The only thing I hated and have shame of is the hair on my chin.  I’m grateful that I’m not like some woman where they have beards or hairy chests.  It’s not funny either.  How hard it must be for them.  I have so much shame that people must think I’m a man though I don’t look like one or sound like one.  OK I’m lying I hated the weight gain just as much.

Moi

I went on the medication they prescribed me and started to eat differently which was so hard.  The first hormone they gave me made me very angry.  I remember waking up from a nap really upset and not understanding why.  It was so bad.  I couldn’t control the anger.  No more of that hormone.

I was told a couple years later I’d never have kids or the chances would be super slim unless I had this surgery where they’d cut these oval shapes on my ovaries to help me ovulate.  Not going to happen.  Really not going to happen.  So I kept doing everything I could to make my body normal or as normal as could be.

When I started to see a Ovarian Specialist I thought, he’d fix me.  I could lose the weight and be OK.  This whole time I began to obsess on my weight.  I noticed people were not as nice to me as I gained weight.  I knew they thought “Why does she eat so much” or “She really should lose some weight” but they didn’t know I tried.  I tried everything and nothing worked.  I didn’t realize that the insulin in my body was attacking by hanging out in my fat cells making it harder to lose weight.

I thought Acupuncture.  Lots of people do it and seem to get better.  This worked…..to get me pregnant.  I think between the acupuncture and the pill they put me on for monthly cycles that it made my body “normal”.  At 24 and much to young I thought to have my first I was pregnant.  I didn’t realize I was but smells bugged me, electrical shocks through my breasts, and some other things so I went to the Ovarian Specialist with my mom and boyfriend and he said there was no way I’d be pregnant and they wouldn’t waste our time.  We crossed the street to the hospital and I was 9.5 weeks pregnant.  Both my boyfriend “now husband” at the time didn’t know what to do but I knew what a miracle this baby was.  I was so happy being pregnant.  Although I looked just very fat while pregnant I enjoyed my pregnancy.  Nothing bad that happens during pregnancy happened to me and that was all that mattered.  All except sitting on my chair at my baby shower and the chair breaking.  Oh the humiliation I felt.  Sad I was more concerned about how embarrassing it was for me then if my baby was OK.  She was just fine and born one week early at 8 lbs. 6 oz.  I ran into the Ovarian Specialist who said I’d never have a kid without surgery and let him know I was pregnant.  He was shocked.

Now I had heard that if you have a baby and have PCOS it can make your body normal.  This wasn’t my case at all.  Now I had PCOS still and had gained more weight having our amazing Kaila. It just kept getting worse for me.  The only saving grace was even though I was “Morbidly Obese” I was never at risk for diabetes with all my tests and my blood pressure was always low.

In 2006 we were discussing to maybe have another child but NOT if I weighed what I did.  NOT being this overweight.

I ended up being part of a study of women with PCOS at Cedars Sinai hospital.  The doctor Dr. Azizi was amazing.  He reran all the tests to see if I had PCOS and I did.  No shocker there.  They tried more tests on me.  I even did this lovely test to see my insulin levels changing which consisted of me being hooked up to two IV’s, having my pancreas turned off, and being given synthetic insulin while taking blood from my other arm for six hours.  Oh the joys of PCOS but I wanted to be better.  I wanted to be fixed.  I even ended up having a biopsy of my fat done to see what was going on.  Nothing seemed to work.

Late 2006 I went to see and Endocrinologist at the suggestion of Dr. Azizi.  The woman I met with told me that for women with PCOS they’ve found if they have the insulin type like me that Gastric Bypass will reverse the symptoms of the PCOS.  I left in tears, called a friend crying, and couldn’t believe I was a candidate for Gastric Bypass.  I thought “I must really be fat if they want me to do that” my self esteem went away even more.  I made an appointment with the surgeon and did the Psych Eval (found out that it’s not purging if you have a drive through taco and nachos with a Diet Coke) so I was approved for the surgery.  I called to check with my insurance to see if it was approved and the ended up speaking to the woman who approved it and she informed me she did, right away, because of the PCOS.  I was told I’d be dead by about 40 if we didn’t do something.  I’m 36 now, kinda scary.

I was glad that I wouldn’t be an overweight mom to Kaila anymore.  I noticed she gained 20 lbs. one year and the doctors think she may too have PCOS she’s now part of a study at Cedars too.  They eventually want to catch PCOS when girls are born.  That would be great!

I had the Gastric Bypass and felt very alone after my surgery.  Maybe I drove all my friends away.  No one wanted to visit me it seemed except for one gal from the support group.  I was even judged for having the surgery but seriously, if you haven’t had PCOS you don’t know how frustrating it is.  How scary it is and how alone you feel.  How many changes you need to make just to maintain.

The weight came off.  Within one year the weight came off and I was having monthly periods for the first time ever!  They were right, it reversed the symptoms of the PCOS. It did also cause my gallbladder to give out on me so in 2008 I had it removed.  That had to be so much worse for me.  Really, no joke.  Had my first and I hope last near death experience from the morphine given to me.  I’m now officially afraid of surgery.  Yep.

I had heard around 2008 that Gluten is bad for women with PCOS since my body doesn’t process it like yours.  I cut out gluten for the most part.  I’d have cheats I guess but for the most part none.  Since the bypass I couldn’t have things high in sugar or fat either because my heart races and I have to lay down.  I did find that if I did eat gluten or things high in fat or sugar that I’d get reverse bulimia and for sure would not gain any weight.  I was obsessed with my weight.  I was obsessed with gaining the weight back and noticed I’d have eating issues where I wouldn’t want to eat.  I really saw by now how mean people are to those with weight problems.  You don’t know why anyone is obese so who is anyone to judge?

I remember going to the support group after the surgery and someone said “We’re all here because we ate too much and we got fat” I burst into tears and thank God the Psychologist saw me and reminded the group that some people have diseases that cause them to gain and hold onto weight.  That not everyone overate.  It made me feel good to hear that but it then instilled in me even more that society doesn’t see it that way.

In 2008 I also started to get weak and not feel right.  Turns out all my levels were low.  When they say that I need to take supplements I guess they really mean it.  I thought I was different.  I didn’t think those rules applied to me.  I also wasn’t getting enough protein and my hair was falling out.  I started to better and take care of me more.

By July 2009 I was feeling good about my body and decided in September we’d try again for child number 2.  Knowing our chances were slim we said we’d try until Kaila turned 10.  Well less than a month later I was pregnant with said child number 2. I was SO AFRAID of gaining weight with our son.  I wouldn’t face the scale when I’d be weighed.  I also had all nutrients sucked out of me by said little guy.  I was seeing a cardiologist because my iron was so low my heart shrank.  I had our little boy a month early via c-section and was fine for some time.

In May of 2011 I thought I’d try weight watchers to lose the 20 lbs. of Liam I wanted to lose.  I thought YES, now I can have gluten.  By December I was so sad, depressed, and couldn’t stop crying.  We thought I had late onset Postpartum Depression.  After seeing a LCSW I found out it was because I was eating gluten and had a long term iron level of 2.  Not good.  I cut out gluten 100% and started to take my vitamins again.  Sad, but I had the proof that both were bad for me.  I’ve not had gluten since and never will again.  It’s not worth all the feelings I had.  I even cut on my hand once and didn’t understand why.  I didn’t do it for anyone to notice I was just so hopeless.

I’ve noticed the past couple of months I’ve been exercising and eating right but no weight is coming off.  When people look at me I don’t look fat but I feel it.  I’ve got 15 lbs. of extra skin on me and I try and remember that but it’s so hard to do.  I’ve also noticed my periods coming at further distances of time.  Last month around the 20th and this month it’s the 30th and still nothing.  It scares me that the PCOS symptoms are coming back.  It could be also my body changing.  It’s just so scary when I am in so much fear over PCOS.  With PCOS they say to not have sugars or starches either.  I’m cutting those out as well.  Since the bypass I’ve been able to have some but I want to make sure I’m doing everything I can to beat the PCOS.  I’m going back to the way of eating that worked and saving a treat for when one is really needed.  Like Diabetes I have to eat a certain way with PCOS and since the bypass take supplements.  I want to be around for my kids and husband.

My husband is amazing.  He’s been with me through all of this!  YES everything!

I’m going to be OK.  I have the resources and the smarts to battle PCOS.

My hope is that if I show what I’ve gone through that maybe it will help someone else.  I’ve posted below the symptoms and some information on PCOS.  Thanks for reading!

Symptoms of PCOS (PCOS is very different for all and three symptoms usually helps to diagnosis PCOS)

1. Weight Gain or Inability to Lose Weight (ME)

2. Absent or Irregular Periods (Amenorrhea or Oligomenorrhea) (ME)

3. Infertility

4. Excess Hair Growth (Hirsutism) (MY CHIN)

5. Thinning Hair (ME)

6. Acne

7. Ovarian Cysts (ME)

8. Fatigue (ME)

9. Other Skin Problems. Skin tags

10. Mood Swings (ME)

11. High cholesterol (Hyperlipidemia) and High Blood Pressure (Hypertension)

12. Sleep Apnea

Diagnosis Testing:

To diagnose PCOS, doctors use a combination of clinical symptoms (what you experience as the patient, such as excess hair growth, irregular menses, acne, skin tags, weight gain, infertility, etc.) and lab tests. The blood tests to consider are:

• Free testosterone – elevated in PCOS.
• DHEA -S- elevated in PCOS.
• Sex hormone binding globulin (SHBG) – usually low in PCOS.
• Fasting insulin – elevated in PCOS. Results greater than 9 or 10 can indicate insulin resistance. Insulin resistance is usually the underlying cause of PCOS, as you will read elsewhere on our web site.  Some doctors may also order a 2-hour post-prandial insulin test, along with a 2-hour post-prandial glucose test.
• Fasting glucose or 2-hour post-prandial glucose – elevated in PCOS. Using this information in combination with the insulin tests helps to diagnose insulin resistance. Also, women with PCOS have a higher risk of diabetes so it is important to screen for this early and often.
• LH: FSH- Some doctors may also look at the ratio between these two hormones. In PCOS, we would expect LH (Lutenizing Hormone) to be elevated in comparison to FSH (Follicle Stimulating Hormone).
• Ultrasound to check for the presence of ovarian cysts. Even if the ovaries do appear normal, the absence of ovarian cysts does not mean that a woman doesn’t have PCOS. Not everyone with PCOS has ovarian cysts, and not everyone with ovarian cysts has PCOS.
• Some doctors will check cholesterol levels and liver function tests, as these can also be abnormal in PCOS (as well as in many other conditions).

Taking Care of PCOS:

Make sure to be under the care of a Doctor who knows about PCOS, eat right, and exercise.  PCOS makes it harder to lose weight. Some women can’t have children without the help of hormone treatments and should see a doctor.  Be good to yourself and know that you’re not alone.  Something I have a hard time doing.

**I’m not a Doctor.  I’m a woman with PCOS and this is my story only.  Don’t ever quote me about PCOS because this is just my story and what I’ve gone through.  PCOS is so different for all women.  Thanks!**

Tags: birth, diet, exercise, gluten, gluten free, hair loss, journey, life, me, PCOS, Polycystic Ovarian Syndrome, pregnancy, sugar, sugar free, surgery, weight