My PCOS Journey: Part 1
DISCLAIMER: FOR INFORMATIONAL PURPOSES ONLY. THIS IS NOT MEDICAL ADVICE. I AM NOT A MEDICAL DOCTOR.
One of the reasons I wanted to teach fertility awareness is because there is a lack of education around women’s health. I think it’s important to share not only knowledge, but also stories and experiences, to help advance women’s healthcare and to help women advocate for themselves.
While I don’t love living with PCOS, I do love being able to relate to other women who have PCOS or suspect they do. PCOS is one of the most common fertility-related disorders (though it does not just affect fertility!), and there is research out there on the condition. However, getting diagnosed can be difficult, and then sometimes it’s hard to know what the best next steps are to manage PCOS.
Here is my experience getting diagnosed with PCOS.
I had always “felt” that something wasn’t quite right with my menstrual cycle. There weren’t any major symptoms, but I did experience some heavy bleeding, PMS/PMDD, and slightly longer cycles (my cycle lengths were typically 28-40 days, which is not “non-typical”). I also had family history of thyroid and fertility issues. When I started charting, I noticed some other symptoms that, again, weren’t major, but seemed a little off: scant cervical mucus, shallow temperature rise/low BBTs, anxiety, and delayed ovulation. Charting also helped me pinpoint that some of my mood symptoms like anxiety were worse during my luteal phase.
I brought up these symptoms at (and brought my charts to) my next OBGYN appointment. Spoiler: I ended up going to multiple doctors.
Doctor 1
Doctor 1 thought NFP was the rhythm method—which was a red flag—but she could read the chart. She assumed my periods were irregular, but I tried to explain to her that when you look at my charts, they don’t seem irregular; you can see patterns of slightly delayed ovulation.
She ordered a vaginal ultrasound. Results indicated that I had fibroids. Doctor 1 pushed to have a hysteroscopy, or I could come back in six weeks for another ultrasound to see if the fibroids went away. I declined; after doing my own research, I learned that removing the fibroids could leave scar tissue, which could make implantation more difficult if I wanted to get pregnant in the future. Also, many women have fibroids and can get pregnant. I do want to note that severe fibroids can affect fertility and make pregnancy difficult, especially if they are large in size.
I reviewed this with my primary care doctor, and she agreed with my decision.
Doctor 2
About a year later, I went to a new OBGYN (“Doctor 2”) for my annual Well Woman’s Visit. My main complaints about my cycle were unbearable PMS and leg pain during my period. Like, both of my entire legs hurt so badly that I could barely walk and had to take of work. It almost felt like nerve pain. (Did I have endo? Was it pressing on my sciatic nerve??? I had SO many Google searches.)
Doctor 2 ordered an ultrasound (both vaginal and transabdominal), especially since I told her about my earlier fibroid diagnosis.
The ultrasound technician said there were no fibroids, and that they don’t “just disappear.” She said there was one cyst on my ovary, but that was probably just the corpus luteum, signaling that I had ovulated.
Doctor 2 gave me a brochure on cysts and said that my pain was normal.
Doctor 3
I saw Doctor 3 when my leg pain was getting worse. She said endometriosis was a possibility, but it wasn’t worth diagnosing. I knew that surgery (laparoscopy) was the only way to diagnose endometriosis. Doctor 3 said that if I was diagnosed with endometriosis, then they would either prescribe birth control (which I had told her I didn’t want, unless absolutely necessary) or recommend that I take more pain meds.
Note: I am not opposed to taking bio-identical hormones like progesterone during the luteal phase if it would directly treat an issue. I don’t want birth control if it’s just going to mask my symptoms. I also still wanted to ovulate.
Doctor 4
I owe a tremendous Thank You to Doctor 4. Doctor 4 was when I discovered NaPro Technology. Through social media, I had heard of a clinic—near where my in-laws live in Ohio—that had a nurse practitioner with the NaPro certification. I booked an appointment when I knew I’d be visiting my in-laws next.
This provider was amazing. She listened to my concerns, did not dismiss me, and was excited to see that I brought my charts with me! (In the past, I think I intimidated doctors when I pulled out my charts—ha!)
She ordered labwork to test hormone levels on specific days of my cycle. The timing of bloodwork is really important. For example, if you think you have low progesterone, you do not want to test progesterone at the beginning of your cycle, since that’s where progesterone is at a low level. Progesterone is the dominant hormone in the luteal phase, so the ideal time to test for progesterone is 7 days post Peak day.
Common PK+7 hormone tests:
Progesterone
Estrogen/Estradiol
Testosterone
Full thyroid panel
Common Day 3 tests:
LH
FSH
Prolactin
Diagnosis
My provider diagnosed me with PCOS when my LH level was higher than my FSH level on Day 3 of my cycle. At this time, FSH and LH should be about 1:1. Many (not all) patients with PCOS experience elevated LH levels, which is diagnostic of PCOS.
This is why:
Women with PCOS may not be able to rely on LH test strips (OPKs) to predict ovulation.
Timing of blood tests is very important! If I would have waited closer to ovulation, LH spikes and therefore an elevated LH level would be considered normal.