Support group for women living with Polycystic Ovarian Syndrome.
PCOS: A Personal Story Of Diagnosis And Treatment
June 22, 2016 at 11:07 am #16709
Over this last week, I got a diagnosis for something that has been plaguing me with problems since I was in high school. The journey to that diagnosis was long and sometimes overwhelming, to say the least.
I almost gave up on figuring out what was going on.
But deep down, I knew something was wrong. I just didn’t know what it was. And I never dreamed that the problem would be in a place that I didn’t think could affect my other problems: My ovaries.
15. What Is PCOS?
I want to start off with basic information. Many women don’t know what PCOS is or exactly what it entails. So, what is PCOS?
PCOS stands for Polycystic Ovary Syndrome, and it’s a problem where a woman’s hormones are out of balance. It causes issues with periods, and can make it difficult to get pregnant, although this isn’t always the case. I had no issues getting pregnant with my girls, and my OB thinks I’ve had this since I was a teenager. PCOS can also cause unwanted changes in the way you look, such as acne and unwanted body hair.
If it’s not treated, as was the case for me, it can lead to very serious health problems, such as diabetes and heart disease.
Women who get PCOS grow small cysts on their ovaries, hence the name. The cysts are generally not harmful, but they lead to the hormone imbalances. Early diagnosis and treatment for this disease is key to avoiding the long term problems.
14. When Did It start?
My PCOS started in my teenage years, but went undiagnosed, because I thought my problems I was having were normal. I went through two pregnancies and over 15 years of periods, to find out that I’ve more than likely had this problem since I was in high school. These problems I was having came on gradually, and they weren’t full blown at first. In fact, the only problem I had then was a heavy period.
Yep. That’s it. Heavy period. Oh, I also had bad acne, but I attributed it to the teenage years.
But, when I say heavy, I mean heavy, as in bleeding though super tampons within a 3 hour time frame at the age of 14 heavy. In fact, I still have this problem even today, I bleed through super plus sizes in hours. I can’t wear a diva cup or a pad to bed, because I wake up soaked in blood, so I have to wear a tampon. I put it in at around 11pm, and I take it out at 7am.
It still leaks. And it’s always been like that. Every pair of underwear I owned when I was a teenager had blood stains. And yeah, I brought it up to my mom…We didn’t talk much about things like this though, and she even thought that it was just a heavy flow, and that I was exaggerating.
13 What Symptoms Did I Have?
I have many of the classic PCOS symptoms. As I mentioned before, I have an abnormally heavy period. This symptom can go both ways, some women may have no periods, some women have irregular periods, and some have heavy periods like I do.
I have hair loss on my scalp that leave me with wads of hair in my shower, and random hair growth on the face, my shoulders, and my toes and fingers. I always just thought I was part hobbit. Turns out, being from the Shire has nothing to do with my toes and fingers. It also explains my really bad hair growth on my arms and legs, which is darker and thicker than normal. You can get this growth anywhere on the body where it’s NOT supposed to be.
I have acne, and oily skin that breaks out constantly. I am almost 30, and my skin still breaks out like a teenager eating a whole vat of fries and chocolate. That’s not supposed to happen.
I’ve had multiple miscarriages… I don’t talk about this one a lot, as it’s pretty painful to think about even still. But yeah, I’ve lost 3 fetuses within the first trimester.
I have high blood sugar. I never knew this until I did the testing, and I was shocked. It was never picked up, but then again I never had the problem during my pregnancy tests. You can have either insulin resistance, which I have, or make too much insulin. This can cause skin tags and upper body obesity.
You can have depression and mood swings. I had these problems when coming off from being pregnant, but not as bad after. I have ADHD, so it’s tough for me to calm down or get my brain to feel ‘at rest’ as it is. I did have severe mood swings on the Mirena due to the constant high dose of the hormones, though.
You can also have breathing problems while sleeping, but this is linked to obesity and insulin resistance.
12. What About My Weight?
Well, as I mentioned before, you can end up with diabetes from PCOS. I actually have a very healthy diet. I don’t eat a lot of sugar, or drink a lot of sodas. I mostly drink water, actually. I don’t eat a lot. In fact sometimes I have one meal a day. I even go to the gym and work out.
I still cannot lose weight.
When you have PCOS, the amount of sugar in the blood (ahem, diabetes) can lead you to retain weight. And when I look back, I notice a pattern. When I get pregnant, I lose a bit, then gain about 10 to 15lbs, and I keep it on. I don’t lose it, but I don’t gain any weight either. And no matter what I do, I will have this problem of losing weight, no matter how hard I work out, until I get my diabetes, caused by my PCOS, in check.
11. Did It Ever Improve?
I actually did have times where all of my symptoms seemed to get better! The funny thing was, it was when I got pregnant. Some women get worse when they get pregnant, and others actually get better like I did. It seems to be all based on luck, though. Many women’s hormones even out once they get pregnant and stay pregnant. Others?
Well, some women get a lot worse. Which makes sense, because with my first, I got completely better. I felt amazing, to be honest. When I got pregnant with my second, some of my symptoms got better, but others got worse.
I ended up passing out and having massive dizzy spells and headaches, and my OB is thinking that might have been due to my PCOS causing problems that we just never caught. So it’s honestly a crap shoot as to whether or not someone sees improvement.
10 When Did My Dr. Notice?
My family doctor as a teenager didn’t notice. She was more preoccupied with the fact that I had lost my virginity than if I had any problems, and proceeded to try and scare me out of having sex with a lot of bad medical practices. (Note to consider, I had mentioned that my loss of virginity was not of my own will…she didn’t believe me. So… Yeah that does happen.)
The next place I had tried, when I was 18, barely did the minimum of a yearly physical. I got more lectures about shaving my pubic region (because, yeah no I am not growing out Chewbacca during the summer, sorry), than actually asking me questions. She gave me my birth control and sent me on my way.
My midwife didn’t ask about it when I got pregnant with my first. My next OB didn’t ask when I got pregnant with my second.
My current OB figured it out. How? She actually spoke to me and asked me questions about more than just my vagina and if I had considered not putting in a landing strip. She asked me about my weight, about my acne, and my hair. She did a thorough exam, and when she had suspicions, she ordered tests. That’s all it took. Once you find that one doctor who asks the right questions, everything seems to fall into place.
It doesn’t help that PCOS is one of the most mistreated and undiagnosed problems in women.
9. What Testing Did I Need?
Well, to start off, my OB needed blood tests. A lot of blood tests… 14 vials of blood tests… No, I am not joking, although I think she got some other testing in there while doing the PCOS tests. They had me come in first thing in the morning, while fasting, which for me was easy because I hate breakfast, and took the majority of the blood then, which was 12 vials.
I had to then come back 2 hours after having a meal to get the next set of blood work done, which was 2 final vials. And they weren’t all the tiny vials, either. Some were massive, large vials.
They do a ton of tests with this blood, and listing them all would be, well, way too much. However, some of the things they test for are:
Follicle Stimulating Hormones – will be normal or low with PCOS
Lutenizing Hormones – will be elevated
Testosterone – usually elevated
Estrogens – may be either normal or elevated
Androstenedione – may be elevated
Thyroid-stimulating Hormones – Used to rule out Thyroid issues
Glucose – used to detect diabetes, elevated in diabetes
Insulin – elevated if there is insulin resistance
8. The Waiting Game…
Then I had to wait. Seems simple enough, right? Just…wait. What you don’t realize though, is that while waiting, you start thinking. And when you’re thinking…you research. I learned a ton about PCOS in the two to three days I waited for my blood results.
I took a deep breath, and just pushed on my day-to-day life though, because…I had no choice really. I had to, I have a 2 year old special needs daughter who has autism and sensory processing disorder, and I have another child who is 4 and getting ready for kindergarten, and is desperately trying to learn to read.
I didn’t have time to mope around and worry as much. And I am so glad I didn’t. An idle mind is one that worries more.
A few days after they sent it off, I got a call. I needed another test. They thought I had PCOS. They hadn’t gotten my diabetes and insulin tests back yet, but based on the hormone testing, I needed to go to the next step.
7. More Testing
This time, I needed an ultrasound. Been there, done that. I am way more than ok with an ultrasound. I arrived at the doctor’s office calm and collected, and was informed that where I had held my bladder for 4 hours to make sure it was full for a abdominal ultrasound? Didn’t need it.
A quick trip to the bathroom later, and I was on the table, watching a blank wall while this woman moved the wand around along my vagina, making concerned faces, and taking a ton of pictures. The way she was looking, I knew she was seeing something that was not good.
She asked me to scoot up so she could do an abdominal ultrasound. I agreed, obviously, and this time I asked to watch on the television in the room, because quite frankly I was getting bored. She agreed to that, and another few minutes in, her wand went across my belly, her looks grew more concerned. She was labeling multiple cysts.
She finished up, and I asked how long before the results come in. She told me it was usually up to 48 hours from the day of the ultrasound.
6. Waiting Again…
The wait was forever this time. I had been given some potential situations to think about, such as surgical options, potential loss of fertility, and more. And ever since the procedure, to make it all worse, my sides were in pain, and still are, from the pressure that was applied by the ultrasound.
Looking into these options made me a nervous wreck. Some places said that a hysterectomy, if needed, would help. Others said that it could make it worse. Some said that surgery was rarely needed, others said that it was often suggested.
Trust me, looking into all of this can make your brain hurt. And all it did was make me worry my head off for a week.
Did I mention that instead of taking 48 hours, it took a week? That’s how I knew that something was wrong. It literally took 7 whole days for them to call me back. They’d had the results for 4 days.
5. That Magical Phone Call
Then I got the call. My doctor’s assistant called at 9AM on a Thursday morning.
“You have PCOS and Type-2 Diabetes. You need to begin treatment ASAP.”
Nothing sucked the air out of my lungs faster than that. I asked how bad it was, and was informed that my fertility was probably going to bottom out in the next few years. I had cysts all over and in my ovaries. And diabetes? She explained that because the PCOS had been trashing my system undeterred for years, that it had resulted in diabetes.
Luckily, it can be controlled with medication. And I luckily do not need surgery yet, so that’s a huge plus. This can be managed by basically maintaining my diet and exercise that I had been maintaining for years with no issues, and by taking some pills. I had some small sense of hope.
4 What Medications?
I, personally, was put on Metformin for the Diabetes, and the birth control Yaz, to help with the cysts and hormones and hair growth and pretty much all of the rest of it.
Other options include varying birth control methods that include estrogen and progestin, synthetic progestin, an androgen lowering drug called Aldactone, Metformin, which is sometimes used before PCOS has reached a diabetic point to prevent diabetes, and Clomiphene, aka Clomid.
Why is Metformin so popular? Because it has such a plethora of benefits to a woman with PCOS. Sometimes it’s used with Clomid to induce ovulation. Sometimes it’s used on women who are having IVF treatments to help them have a smoother response to the treatment. And for others it’s just used for it’s main purpose, to help blood sugar control.
No medication is 100%, so talking to the doctor to figure out what works best for each case is crucial. I’m just starting my treatment, so I’m hoping for the best. There are other medications often given to women with PCOS that help to control the other symptoms, such as the acne and the hair growth.
3. My Current Thought Process
The day I found out, I was numb. I went about my day, played some video games with my kids, and made dinner like normal. I mean, I don’t know what else I could do. Could I have curled up in a ball and cried because of my body rebelling on me? Sure. Would it have solved anything? No.
I count my blessings. I have two beautiful daughters, and a supportive husband who is behind whatever decision I make. I don’t have a disease or condition far worse than PCOS, like my beautiful, strong grandmother, who is battling breast cancer and shows me everyday the depths that a human’s strength can go.
My body is whole and in one piece. I have a roof over my kids’ heads, food in their bellies, and water for them to drink. I have a lot of blessings. My life could be so much worse. And to be honest, I’ve lived with this for years, all this did was put a name to what I have. It gave me a way to try and fix it. And for that, I am truly blessed.
I have a lot of blessings.
2. My Ability to Have Children
One thing that is bothering me, is that my ability to have children may be in decline. While I do have two beautiful girls, we wanted one more child, but we wanted to wait another few years. I may not be able to wait that long to begin trying, and I may have a lot of difficulty in getting pregnant at all.
I don’t ovulate properly anymore, even when off of birth control. I also have a history of miscarriage and difficulty during pregnancy, so if I get pregnant, I may not stay pregnant. I need to be prepared for that. I will likely have a lot of loss before I get pregnant again. I have to come to terms with that and be ready for it.
Women with PCOS often need treatment, such as Clomid, to get pregnant. I may end up needing Clomid too. The thought of not having more kids worries me, but I look at the two beautiful girls I have now, and I’m strangely ok with whatever happens.
1. What the Future Holds.
I’ve been told that if my cysts get much worse, I will need surgery to remove some of the cysts, at the very least. It could end up like my grandmother and aunt, one needed her uterus removed, the other had to have everything removed. Medication could work to treat all of it without a hitch, since medicine has advanced a lot since the time my aunt was treated.
I will be watching my daughters, as they hit puberty in 10 years, for signs of the syndrome. I do not want their bodies being trashed by this disease like mine was. I don’t want them feeling like they’re ugly or nasty, like I did for so long, because of hormonal problems that are out of their control. If they have PCOS, which is possible, I want to help them treat it. I want them to feel better.
I plan to take each day in stride, however. This will not bring me down, and it shouldn’t bring anyone else down either. It can be managed, easily for me, but even for others, it can be managed. And if you struggle with PCOS, or with anything, and you’re feeling overwhelmed, talk to someone. Anyone. I call my husband, or my mother, or my grandmother, anyone who I can blow off steam to. Find a friend you can speak to.
Believe me, it helps wonders.
Have you been diagnosed with PCOS or other disorders? Let us know.
Culled from http://www.babygaga.com/polycystic-ovarian-syndrome-this-is-my-story-my-diagnosis/
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