This is a guest post from our sister team and the first post from someone on the other side of the infertility fence. We met through the resolve boards and I am excited to meet in person in June because she is almost my diagnosis sister as well.
When I was 13 my mom took me to my pediatrician to ask why my periods, which I had been getting like clockwork since Groundhog’s Day when I was 11, were coming fewer and farther between. The doctor referenced my age (“she’s still so young!”), my weight (“how is that diet I told you about going?”), and sent us on our way. “Some girls are irregular at this age!”
At 15, now with a regular family physician, I asked the same question. “Why am I only getting a few periods a year, doctor that I trust so much?” “Why, when I do have a period, do I miss 2 or 3 days of school with unbearable pain and vomiting?” I was simply told, “So many girls your age would be thrilled to have fewer periods each year. And, since you seem to be unable to tolerate normal ‘women’s pain,’ I’m sure you are happy to have them so infrequently too!”
At 19, I went on birth control. I was tired of waiting months on end for a cycle, having no preparation it was coming, and missing days of college classes strapped to a heating pad and popping pain killers like candy. I was devastated when, at my second “yearly” visit with that still mysterious doctor the OB/GYN, a nurse practitioner told me she was taking me off the pill because my blood pressure was too high. To this day I hold that my blood pressure was high because of the sight of stirrups and not the pill, but off the medication I came.
Eight long months later and back at college, I went to the health center. It had been nearly 250 days since my last “monthly” visitor. (The inaccuracy of that euphemism has always evoked a special sense of loathing in me.) A brusque and efficient doctor made me pee on a stick (“OK, I guess you really aren’t pregnant!”), looked me over, commented on my weight, and told me without further testing or diagnostic evaluation that I had PCOS. “Just so you know,” he continued, “you will likely never be able to have children because of this condition.” I was numb, and then I cried.
Two weeks later I got my period, and got a new prescription for hormonal birth control. As soon as my then boyfriend (and now husband) and I were able to dig ourselves out of the foxhole of bitterness, hopelessness, and depression that an unexpected infertility diagnosis had sent us running into, we did what we, as college students, soon to be graduate students, were trained to do. We did our homework. After we started researching, we learned that PCOS wasn’t a death sentence for my fertility. We allowed hope to re-enter our lives, we got engaged, we graduated, we started graduate school, and, on June 24, 2006, we got married. A giant unknown was hovering over our shoulders, but we were happy to be armed with useful information and were prepared to face my impaired fertility (if not for sure infertility) together when the right time came.
In 2009 my health began an unexpected and frightening decline. At the ripe old age of 25 I began waking up with excruciating back pain, I started to forget words, I was becoming easily frustrated and anxious with little warning, I was constantly cold, and the slightest bump into a countertop or table would result in a startlingly black bruise. The hair on my head was filling the shower basin, while the number of black hairs on my chin had me considering buying stock in manufacturers of tweezers. Despite counting calories and having an active job, my weight gain was almost uncontrollable.
Thankful to finally be part of the ranks of the gainfully employed, I put my newfound insurance benefits to good use and sought the advice of my new family physician. “I think I have PCOS,” I said, “and I think it is starting to get worse.” She wanted to confirm my hunch with diagnostic bloodwork and a transvaginal ultrasound, and I thought that was a novel idea. I skipped one month of birth control, went for my tests, and waited for the results. A few days later a very peppy nurse from my PCPs office called to tell me my lab results were, “perfect,” and that I was, “perfectly healthy.” I was crushed.
In the summer of 2010 my husband and I celebrated our fourth wedding anniversary, our third year in our beautiful “room for a baby” house, and I tossed my last pack of birth control pills. I was still suffering from mood swings, aches and pains, fatigue, weight gain, memory loss, and a whole host of other issues, but it’s amazing how constant pain can so easily become your new normal. “No wonder you’re unusually tired,” I’d tell myself, “you’re depressed. “ “Of course you have pains,” I’d justify, “you’re obese.” It was my normal. Indeed, it was so normal I was used to always pushing beyond it. I worked a full-time job, I attended a full-time graduate program, and I strived to find time for a social life (and, of course, baby-making). Tired, depressed, and fat. They made “sense” given my lifestyle.
Six months after my last birth control pill, I had had two periods and I had yet to ovulate according to BBT charting. I also was increasingly unable to get out of bed, to function at a normal adult level, and to balance the stresses of my life. The day I woke up unaware of where I was, who my husband was, or what a telephone was used for, was the day I went back to the doctor. “Something is not right!” I demanded. “You need to take me seriously!” While at the office I also requested a paper copy of the labwork and ultrasound report I had done in 2009. I was sick of accepting “normal” as an answer and went home and began establishing my strong and everlasting relationship with online patient advocacy and support forums, including, eventually, that offered through RESOLVE.
I soon discovered my 2009 labs were anything but “normal,” with a free testosterone level that was far out of range (a sure sign of PCOS) and a TSH level of 3.94 that, while within most lab’s “normal” ranges to this date, still falls clearly out of the range (0.3-3.0) proposed in 2003 by the American Association of Clinical Endocrinologists. (TSH, or thyroid stimulating hormone, is a pituitary hormone that regulates production of thyroid hormones. The TSH test, though not the most accurate measure of actual thyroid activity, is commonly run during a fertility work up as an elevated TSH can indicate a common thyroid hormone deficiency - hypothyroidism - that, among many, many other things, can impact fertility.) Armed with evidence, I requested a new and full thyroid workup be performed. The receptionist on the end of the line hemmed and hawed (“Your results were normal less than 2 years ago”), I broke out some tears, and victory was ultimately mine.
Two days later I was barely keeping myself awake at work when the phone call came. “The doctor wants to see you immediately,” the nurse informed me, “you have developed a thyroid condition.” I asked what my TSH was, expecting an 8 or maybe even a 10. I’d read that those were bad numbers, and had even heard from a college acquaintance that when she was at a 10 she had to resign from her teaching job and move home with her parents because she was incapacitated by her malfunctioning metabolism. My TSH was 55.38. When I saw the doctor later that afternoon she asked me with a straight face, “How are you standing in front of me right now?” I’ve since learned that my story to securing a thyroid diagnosis is sadly typical, and that if I am unique in any way it is that I only suffered undiagnosed for 2 years.
I started to try and have a family when I was a “healthy,” “nice and young,” emotionally, financially, and physically prepared 26 year-old. Or so I thought. I’m now rapidly approaching 29, have multiple medical diagnoses following me around as if I’m the pied piper of fertility-impacting conditions, and have yet to achieve a lasting pregnancy. In addition to my PCOS (which was formally re-diagnosed only after thyroid treatment didn’t return my cycles), I now know I have Hashimoto’s (autoimmune hypothyroidism), mild Raynaud’s (a disorder possibly resulting from my Hashi’s that causes my fingers to take on a bluish tint when cold), spinal arthritis (possibly related to years of undiagnosed Hashimoto’s), stage II endometriosis of the bowel, ovaries, and fallopian tubes (discovered only after I suffered through an ectopic pregnancy in November 2011, and a diagnosis that suddenly brought clarity to my years of painful periods), and a double mutation of the MTHFR A1298C gene (which potentially impairs my ability to make use of that most essential of pre-natal vitamins, folic acid). I now take fifteen pills (medications and vitamins directly necessary given my conditions) a day.
I wouldn’t wish the experience of infertility on my worst enemy, yet (at least on the good days) I do find it in my heart to be grateful for my ongoing infertility journey. Infertility has changed me, but I hope that infertility has changed me for the better. First and foremost it has made me an advocate for my own healthcare - I learned to trust that I knew my body better than my doctor, and to listen to how I felt, even if the doctor wasn’t taking me seriously. I’ve also learned how important it is to become educated about what you are going through - fertility is a rapidly evolving field of care, and even the most studious doctors aren’t always up to date on the most recent advances. This diagnosis has also introduced me to women of strength and character who I would not have met otherwise; it has taught me the value of patience; it has allowed me to fall in love with my husband all over again; it has demonstrated to me how loved I am by my friends and family; and, it has encouraged me to try my hardest to think beyond myself when confronted with hardships. These are blessings I am thankful for daily.
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