This is going to be information overload, but it might help before I continue blogging any more to let you know where I'm coming from. Infertility has overshadowed quite a bit in my life, but sometimes it can be amusing, as well. I hope my blog conveys all of my varying emotions, but this post isn't going to be emotional. I am just going to simply explain what I have been diagnosed with, my symptoms, and where I am now. I have no pride left...
I started my period when I was 11 yrs old; NOT excited like some little girls, and VERY confused. My mother had never talked about cycles with me, and it probably would have registered (thanks in part to "Are You There, Lord? I'ts Me, Margaret), but instead of typical blood, what I saw was a black, tarrish sticky substance and I was highly concerned. After talking to a girlfriend that was older and had started her period already, I told my mom. I embarrassingly took the pads she handed me, she kinda sorta told me what to expect, and as I was walking out of our yard to catch the bus, she yelled, "Don't flush the pads down the toilet!" Jeni eyed me quizically, and I wanted the earth to swallow me up whole. The blood became more of what it should be, but it kept going, and going...and going. When I asked Mom to buy me more pads, she asked me if I'd started another period. When I told her I'd been having a period for the entire month, she was concerned. At three months, she went to her obgyn and told him that I'd been bleeding for 3 months straight. He calmly assured her many young girls take awhile to get evened out. We were both relieved at about day 90 when it stopped.
I didn't get another period for 9 months, when I was 12. My periods were never normal, and I never knew when to expect them or how long they would last, although I didn't have a repeat of my first period for several years. But at about 12 or 13, I was developing strange irregularities, like extremely dark patches on the skin around my knuckles and on the folds of my neck. Eventually, it spread to my inner thighs (by far the worst of it), around my ankles, and under my arms. The hair on my arms was horribly thick, and I was embarrassed. I felt unattractive, although at this age, I hadn't started gaining weight yet.
At 15 or 16, I started struggling with weight. Jeni and I had always shared clothes, but all of a sudden, I couldn't fit into her skirts, and my belly was pouchy. My face had always been rather full, but overnight, it seemed, I didn't have a chin! My periods were still very irregular. At 17, I started dating Randy, and managed to gain even more weight. I was not quite 18 when we got married, and we openly discussed my inability to get pregnant beforehand. I had seen a cousin of mine struggle with infertility, and I knew I displayed a lot of symptoms she did, and my periods were not normal at all. On our wedding day, I was a size 18, overweight and unhealthy. And so happy! :)
I was put on birth control after not having a period for 7 months, and it was horrible. It made me start a period, and I now know my heavy uterine lining (monthly periods cause it to shed, and if you don't cycle, it gets thick) was shedding from the months of build-up. I was in agony. The next month, I took it again, and had an even worse cycle. I remember we had just moved into our first house, and I was up on a stepstool changing a lightbulb in the kitchen. I had a cramp, and before I could move, I looked down to see blood gushing onto my feet, the stool, the kitchen floor...very scary. I was at my mom's visiting the next evening, and it happened again. This time I at least made it to the bathroom after recognizing the painful cramping.
I now wish I'd have stayed on birth control, I guess. At the time, I just knew I couldn't continue on like that each month, but now I realize my periods would have gotten lighter. So after 2 months, we did nothing to prevent pregnancy. It was obvious infertility was an issue during that year. My doctor calmly informed me I would never have a child. No diagnosis. No explanation. He exited the room without a word, leaving a stunned 18 yr old on the exam table. So by now I had irregular cycles, sideburns and chin hair appearing, acne...and then the worst thing, by far...my marriage was disintegrating.
By our 3rd anniversary, I was depressed, and actually suffered from some kind of mental breakdown. I was so tired (depressed maybe), I remember wanting a glass of juice one morning, going to the fridge, and then deciding I didn't have the energy to pour it. While putting items up from the store one afternoon, for whatever confused reason, I tried putting a bulk package of toilet paper in the refrigerator, and then sat on the floor in tears because it wouldn't all fit. Our collective life was a mess, and our individual lives were in shambles, too. I left...we were separated for over 9 years. We loved each other, we knew, but couldn't make it work. I stayed in a state of depression and lonliness, while he drowned himself in drugs and alcohol.
During that time, I suffered with fatigue, obesity, irregular periods, non-existant periods for 2 of those years, annovulation, hirsutism (male-pattern hair growth), acanthosis nigricans (the darkening skin as a result of insulin build-up I found out later), insulin resistance, oily skin, headaches, depression, mood swings, weepiness, soft tissue cysts, ovarian cysts, back pain, severe abdominal pain, muscle pain and weakness, anemia...I can't even think of everything I've experienced. Sometimes I will have months of feeling great, and then my body wears down and I'll be exhausted for months on end. I have been on Metformin for insulin resistance, Provera (and other similiar drugs) to stop or start a period, iron injections whenever I become anemic, taken birth control just to regulate me which never works over 2-3 months...I can't think of what all I've taken through the years.
Also during this time, a woman in our church read an article and clipped it out for me on a disorder called Polycystic Ovarian Syndrome. (PCOS or PCOD) I'd never heard about it, but the article described me to a T. I took it to my endocrinologist. He confirmed that is indeed what I had, and with that diagnosis, there was a bit of panic. No one, even doctors, knew anything (or very little) about it, and thought it was much more serious than it is. Of course, I've read articles that make PCOS sound like a mere inconvenience, which is also false. There are times when it feels it controls my life. Now the internet is flooded with articles about PCOS, so I've learned a lot and tried to educate myself.
Knowledge = power! I encourage you to learn everything you can if you believe you are suffering from this disease. And chart EVERYTHING! You will begin seeing patterns, you will find out more on your own than any doctor will tell you in a 20 minute visit, and even though you can't control it, you will make it harder for PCOS to control you.
During the time Randy and I were separated, he had two children with another woman. (I will probably go more into this later, since it has caused me painful moments in my infertility journey.)
A little over 4 yrs ago, Randy came back to God and to me. We've made it work, and honestly, it hasn't been the struggle you might imagine. His beautiful children don't live with us...in fact, he hasn't seen them in 4 1/2 yrs. We love each other, we love our life in lots of ways, and God is doing a work. Since we have been back together, I have suffered with all of the above, with the exception of depression and overwhelming fatigue. My body still "gives out" so to speak, but I try pressing on. I will say right here that it is difficult having a disorder when you feel like you can't get out of bed, but no one can see it on the outside. There are outward signs, but most people don't know what I go through a majority of the time.
We have suffered with infertility once again for over 4 years. I've had to have 2 colposcopies and 1 cryosurgery. I had a 91 day period 2 yrs ago. After that, I had to have my uterine lining flushed. Embarrassing! During my exam it looks like someone slaughtered a chicken on the table. I wanted to be put out just to avoid the embarrassment. My doctor was sweet, but I still cried.
However, this October, I started a period on my own on the 25th, my birthday. (It may be significant to say I'd lost 21 lbs. I am not convinced it was the amount of weight, but how I lost it, possibly. I got off of sugar, carbs - see my other blog.) Anyway, I bled 3 days very lightly, and had a prescription for Clomiphene (Clomid, to help with ovulation) which I filled after talking to my friend, Teri. WE (and I love that I can talk about this to a girlfriend and get actual feedback because she knows what's what) decided that I should take a round of it, even though I was off my period by day 5, which is when you're supposed to start taking it. Of course, my husband and I actually decided, but Teri was my voice of reason. "It can't hurt, right?" No, it can't! :)
I OVULATED!!!!!! I cannot even begin to tell you how excited I was. On November 7th, I got a positive on an OPK test. The next day, I anxiously awaited a negative, which I got. You aren't supposed to get positives 2 days in a row, as it detects your LH surge, and then dips down. It will detect only the peak, so 2 positives in a row means they are false positives. Randy and I babydanced on all the right days. Everything was going great. YES! Could this be happening?!
I had never experienced ovulation in my entire adult life, and so the signs were strange to me, and I convinced myself I was pregnant. It's humiliating to think of being that gullible, but I was so sure. But on November 30th, I started my period. I was still excited, though. A normal cycle length! :) I took Clomid again. I ovulated on December 16th. Timed babydancing. I took another round. Let me interject for those not familiar with Clomid. OMGOSH. Horrible hot flashes. I can't even begin to explain how horrible. Waves of heated nausea where I would run outside while the snow swirled around me. Drowning in sweat at night. Besides that, I didn't have terrible side effects. And I figured it was well worth it. I was taking 100 mgs, a double dose, so that might explain it. I ovulated again on January 18th. Three cycles in a row! I started my period on February 12th. My nurse (I love her!) at Dr. Hamilton's office was so excited for me. She told me to come into the office that she had some concieving and pregnancy magazines for me. Teri was excited for me. Randy was somewhat reserved, but excited, too. We have more to lose than anyone in this, so it's almost hard to get excited, and he said he didn't want me to be disappointed. I understand.
However, this is March 30th, and I haven't stopped my period. That is 44 days of bleeding. My doctor doesn't know why, because usually when this happens it's because I haven't cycled in so long that my uterine lining becomes too thick and tries to shed. My hemoglobin count got down to 8.5. I've had iron injections and was given a shot of Provera. It didn't help. I have been using castor oil treatments (I'll explain later) for almost a week, and it's gotten lighter. I feel better the last 3 days or so. I started another drug the doctor called in for me yesterday, so we'll see.
This can't really cover my journey with PCOS. I'll probably kick myself at 3 am tonight about leaving something important out. I am now 33 years old, so I've been battling infertility for 16 years. All I can tell myself is it ain't over yet! I am trying to get my weight under control so that I will have a better chance of getting pregnant. You read over and over that it helps, and that a lot of women become more fertile the more weight they lose. The only reason I have for not believing that it is such in my case is that I've had PCOS since I was a scrawny 11 year old, and most women don't get it until they are in their mid-twenties. But I am doing it to get healthier, to be more attractive, and so that I will know if I come to the place that it never happens for me, I will have done everything in my power to overcome PCOS odds. To all my cysters, I love you all and wish you the best! Never give up hope.
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