It has been months! How are you? Oh, great to hear. What have I been up to? Oh well, you know, been busy. Haven’t had much time or energy for blogging lately. Because as of today, it has been 1 year, 10 months and 18 days since I went off birth control. 1 year and 20 days since we began our adoption homestudy. 5 months since I was officially diagnosed with PCOS. 98 days since we started infertility treatments. It has been no days since I was a parent. Not that I am counting. Or bitter.
Tell you more? You asked for it.
Basically, when it comes to endocrine disorders, no one knows wtf is going on or how to fix it. Polycystic Ovarian Syndrome is no exception. While PCOS is so named because of the classic multiple cysts which are found on the ovaries, and the infrequent or total lack of ovulation that accompanies that, there is a lot more to it. PCOS is called a syndrome because there are so many possible symptoms, and no single diagnostic feature or method. Depending on your phenotype, you may (or may not) have acne, excessive weight, hirsutism (excessive body hair), male pattern balding, insulin resistance or high cholesterol (particularly triglycerides). A diagnosis of PCOS means that you are at a higher risk for heart disease, Type II diabetes, as well as cervical, ovarian and endometrial cancer. It can also be extremely difficult to become pregnant- when you either don’t ovulate at all or ovulate infrequently, well, there you are. For those women who do achieve pregnancy, there is an increased risk for gestational diabetes, pregnancy-induced hypertension and preeclampsia.
However, women with PCOS tend to have lower rates of osteoporosis, so at least I have that going for me.
What is really frustrating is that my treatment plan from my OGBYN consisted of being put on medication- metformin, a diabetes drug which is supposed to help control insulin levels, and clomid to help stimulate ovulation. There was no discussion of dietary or exercise changes, helpful supplements, and absolutely no discussion of mental and emotional tolls of infertility.
I wasn’t informed that taking cinnamon has huge benefits for PCOS-associated insulin and cholesterol issues. Or that there is some evidence that a gluten free diet can help reduce PCOS symptoms. Or that acupuncture may increase chance of conceiving in women with PCOS. And while I was told that metformin can give you an upset stomach (read: you lose weight because you can’t keep anything down and have horrific diarrhea) no one thought to mention that metformin is linked to vitamin B12 deficiency. B12 deficiencies can increase the risk of anemia, chronic fatigue, memory loss, confusion, INFERTILITY (great) and permanent nerve and neurological damage- read: dementia. Oh yeah, no biggie, I can see why you failed to mention THAT.
And then there is clomid. The only warning I got was that it can increase the chance of having twins or triplets (which when you are desperate to have kids SOUNDS like not a bad deal). After the first round of clomid, I decided to do more research on the side effects and found that clomid exacerbates PMS symptoms, can mimic pregnancy, and specifically can cause:
so for yours truly all of that plus exacerbated PMS symptoms means severe cramping, back spasming, bloating, nausea- and the acne, oh lord the acne- and is so bad, it like going through puberty all over again. My body is partying like it is 1999.
The warning I didn’t get was that clomid can make you nuttier than a Snickers bar. Seriously. I thought the mood swings just going off birth control were bad. Nope. Not even close. See, as a teenager, it was pretty much assumed the extreme moodiness was just par for the course. When I got on birth control as an adult, it was like a miracle. I was finally able to control my weight, I didn’t have awful horrible no good very bad periods, but best of all my mood swings became like those of normal women. It was glorious. But I after a few years you forget how bad things were before miracles happened.
While there is little clinical proof linking PCOS and premenstrual dysphoric disorder, or PMDD, there is a lot of anecdotal evidence. Since both deal with hormonal imbalances, it is logical to assume there might be a connection. The problem is that some people in the scientific community like to say the premenstrual syndrome is all imagined anyway (and those people are asshats) so talking about sever PMS can be challenging. Those of us who experience the extreme hopelessness, anxiety, moodiness and/or irritability each menstrual cycle, and our family and friends who have to watch us experience it, will tell you it is very real.
The days between ovulation and actually having a period, I feel like I am sitting at the bottom of a deep well alone. There are about two days in there where bottom just falls out. That well is filled with water and I am stuck treading for dear life lest I drown. It is really terrible for both me and the Spousal Unit. And infertility issues tend to cause depression anyway, so basically this is just a big ball of suck. The problem is, the DSM recently decided to classify PMDD as a mental illness. The military can be pretty judgey when it comes to mental health issues, and they don’t exactly offer a lot of services when you are stationed overseas, so at this time I don’t really have a lot of options other than just taking the suck as it is and attempting to play the part of a functional adult when in public.
To sum it up, I am foggy, forgetful, have trouble focusing or making decisions, am irritable, irrational, constantly exhausted and to top it all off all the meds and supplements I now take make me feel ill. Some days I feel like getting showered and dressed is an accomplishment. Sadly, the house will not clean itself, the dogs still need walked and my thesis deadline does not change. The good news is that I finally got a new OGBYN, who appears to be more informed about PCOS than the last one. I am a girl who does my research, so our first appointment I brought in all the information I had, and my supplements, my gluten-free/soy free/limited full fat dairy/no red meat/low caffeine diet plan, my ovulation and basal body temp charts, and a list of questions. I am finally getting the thyroid, progesterone level and gluten tolerance testing I should have had months ago.
If I were capable of being thrilled right now, I would be, but today is a bottom-of-the-well day and the best I can muster is to not scream or cry in front of you. Good enough?
Yeah, been fun! Glad we could catch up like this.