I'm writing this in Jan. 2022. I don't know when I'll finish it since I'm at home wrangling a 7 week old baby. But I wanted to put into writing what I've been through to get him here. In case it helps someone else and because I don't want to forget it.
I wrote about it last year after a 6ish-week miscarriage. http://myspanishpipedream.blogspot.com/2020/11/behind-smiles.html
But that post was more about the emotional journey and it was written when I was still very much in the darkness. I want to be more informative about my symptoms and the steps I took to finally have a baby. So if reading about women's body issues makes you go "ew," then you should really keep reading so you can get past that.
My Symptoms and Diagnosis
I think this actually goes back to high school. I had irregular periods. 2 weeks on. 3 months off. And then there were 5-weeks-on that finally sent me to the doctor. Without even looking into the possible cause of it, they gave me birth control. Extremely common in young girls, even if they get a diagnosis of PCOS. I've learned that the pill doesn't actually "cure" PCOS but rather it masks the symptoms, giving you synthetic hormones to mimic the effects of progesterone which helps hair and skin stay full and clear and periods stay regular. I was on the pill for over a decade. One time I came off to see what my body would do, and it never had a period for 3 months so I just went back on. Somewhere inside me I wondered if this was ok.
Fast forward to pregnancies.
I got off birth control and got pregnant with Daisy after the 1st cycle. At some point after she was born, I got back on the pill. When we were ready for a 2nd kid, I got off the pill and had some regular cycles. I wasn't doing ovulation tests so I don't know if that happened at first. But by the 4th cycle I started testing. I read that this is common. That PCOS people's cycles are more normal when you immediately get off the pill but then become increasingly irregular. Then at about month 6 - a wreck.
My 1st sign was I wasn't ovulating and had longer cycles. 36 days and I remember thinking my period color was not right. Rusty and not red. I also learned you can get a positive ovulation test (a spike in LH) and also not have ovulated. That didn't happen to me but I remember learning that. Then the other symptoms like oily hair, thin hair, skin issues kicked in at about 6 months just like the internet said. I went to the doctor. None of my blood work showed PCOS or insulin issues, but with PCOS you don't have to have all that for diagnosis. You just have to have 2 of a long list of symptoms to be diagnosed. Symptom 1) not ovulating. Symptom 2) the ultrasound revealing lots of cysts/follicles in my ovaries. Normal is something like 6 or 7? (I don't remember exactly). I wanna say I had like 16. Essentially, these build up because your body isn't releasing an egg each month. That's a problem because the follicles release hormones that interfere with ovulating. I'm already forgetting if it's FSH or LH but both are affected and that's a problem. The amount of information I took in about hormones and nutrition over the next 3 months was overwhelming and so I've forgotten some of this early stuff.
Steps to get pregnant:
MEDS: I started Letrozole - originally a drug to treat breast cancer but it suppresses the right hormones at the beginning of the cycle to let the FSH/LH work to make ovulation happen. I took this 3 months and started ovulating on or close to day 14 right away each month and having cycles that were 28 or 29 days long. I went in after getting a positive ovulation test for ultrasounds to see how the follicle looked. Things were all good and my doctor had told me it could take 6-7 months. You take a pill for 5 days at the beginning of your cycle that suppresses estrogen and LH (I think). So you don't even have to take pills all the time and I didn't notice any difference in my mood or anything when I took it.
LIFESTYLE CHANGES: Other factors like my anxiety about how I would live with this diagnosis beyond getting pregnant plagued me. I dove into dietary and lifestyle changes. I learned from a couple of websites and podcasts the things to avoid and the things to eat with PCOS.
This website taught me a lot: https://smartfertilitychoices.com/free-30-day-pcos-diet-challenge/ (but also gave me extreme anxiety and some disordered eating thoughts/behaviors about diet). I restricted dairy, gluten, sugar, alcohol, caffeine but became equally obsessed with eating enough of certain nutrients. The whole idea is that PCOS is actually a gut issue and inflammation issue - which affects nutrient absorption and snowballs into other health issues including hormone imbalance. A lot of people with PCOS also experience gut issues like IBS or skin issues. Now I am in a healthier place about it. I try not to restrict anything too rigidly (especially since right now I'm breast feeding) but I do limit dairy, gluten, refined sugar. I do almost no caffeine and no alcohol.
This website, podcast and account on instagram really helped me and gave me hope that PCOS could be managed naturally. I have tried some recipes and some products (teas mainly- they help balance your hormones) that I've liked: https://pcostowellness.com/blogs/post
This website and podcast was also helpful. It had some supplements I tried like prenatal vitamins, DHA, powders and Ovasitol https://pcosdiva.com
Exercise - I switched to "stress-free" exercises as I learned that doing things like running can actually make hormones worse. This was the one easy thing to take in since I hate running.
I switched to cleaner products like shampoos, cleaning products, etc. But I'm not real sure how much this mattered. Also, one of the natural soaps made me have an allergic reaction rash and so I just said, you know what... this can't be the root of the problem. I use some clean products and some not.
STRESS MANAGEMENT: I stopped Letrozole and relied only on my new changes to balance my hormones. It worked enough to ovulate and have cycles on my own. And also enough to get pregnant on my own. Twice. But the thing is, the stress of having this diagnosis and of the pandemic I think prevented me from having real healthy cycles. I was still ovulating on like day 20. I think stress was one of my biggest blocks to getting pregnant naturally and staying pregnant. I got on and off Zoloft in Spring 2020. I increased my therapy sessions to once a week with an amazing woman I started seeing after the first failed pregnancy. I started meditating with the Headspace app. But honestly I never got a full grip on the anxiety I had surrounding getting pregnant. Jan 2021-I hit a wall and was barely sleeping, which resulted in me texting my doctor & calling my acupuncturist in tears one day at school. I got on Wellbutrin and another nighttime anxiety drug Trazadone. The fact that I was so stressed was stressing me out since I knew stress wreaks havoc on your hormones. It was a vicious cycle and I could NOT get out of it, despite trying literally EVERYTHING under the "mental healthcare" sun.
TESTS/SCREENING: After the miscarriage and about a year after diagnosis I went in to get bloodwork on PCOS hormones and I also requested them to check my vitamin levels. My PCOS hormones looked better. Which was interesting because they had not been in ranges high enough to diagnosis me yet, they were improved. This showed what many people online had said. That you can be deemed "normal" but that doesn't necessarily mean your body is functioning at "optimal" levels. My hormones had obviously improved even though a year ago I hadn't been told they needed to (except my symptoms told me otherwise). I highly recommend getting things like magnesium, zinc, vitamin D, and B vitamins tested before diving into supplements like I did. These nutrients are important in fertility but you don't want too much of some of them.
You have to wait 6 weeks before you can even have sex after a D&C and they wanted me to have 2 cycles before trying to get pregnant again. The stress came back and my 2nd cycle was non-existent. I took provera to induce a period (fake progesterone) and then finally got back on Letrozole in Jan. 2021.
ACUPUNCTURE: In the meantime- the last piece of my puzzle and one I wish I had started from the beginning was Acupuncture. I started at Xmas going to Memphis 2x a week for 2 weeks and then every Saturday for about 3 months. The doctor reiterated what I felt about "optimal" vs. "normal" and how Western medicine (which she has a degree in as a Neurologist) will say someone is healthy, but that doesn't mean they are functioning at optimal levels. Acupuncture is about helping ANYONE get to a more optimal level of health. You don't have to have a problem to see an acupuncturist. If you just want to feel better, have more energy, sleep better, feel like you did when you were 20 - acupuncture is for you. I can't wait to go back. And I really think this final piece helped a ton in my journey to George. It's something I want to keep doing and really wish existed in Oxford. Besides lying on a table under a heat lamp with needles in me once a week, she also gave me herbs to take and told me to do things to "warm me up." I drank only room temperature or hot drinks and I soaked my feet and calves in hot water for about 20 minutes every night. I didn't realize that having cold hands was something I could change. She said it was a symptom of poor circulation (ok that I knew, but I just thought everyone had cold hands) and that we needed to fix it. Anyway, I could talk all day about acupuncture but I won't. It helped with my anxiety and a few times with a back issue I was having.
If you've made it this far, then I hope you aren't struggling with anything like this right now. But if you are, the only advice I can really give is to keep trying. Advocate for yourself and don't give up. You know your body best. Tons of people struggle with getting their doctor to listen to them. Find a new one if that's the case. I was lucky in that department but it's super common for PCOS and other women's issues to be dismissed or for women to just be told, you can't have children, the end. Listen to your body.
In hindsight, my feelings about the pill are mixed. On the one hand, it let me live a carefree life without worrying about whatever symptoms would have emerged had I not been on it (hair? acne? weight gain? - there's no way to know, but I imagine some would have). On the other hand, I had no idea what was in store for me if I ever wanted children. So, I at least wish the doctors would have looked into my irregular periods more and told me what I might face one day. Although, I am not sure what all doctors even knew about PCOS in 2000. I imagine not a lot since that is the theme for women's health issues. There are ways to support your body when coming off the pill. Had I known about that and that I needed support, perhaps this journey would've been different. Perhaps I would have stopped the pill earlier and given myself more time. Or not gone back on it at all after having Daisy. Who knows. I suppose the journey of managing PCOS isn't over, but I hope it will be easier without the stress and pressure of trying to have a baby with it. It's possible I may even be at the Gratitude stage for having it (after significantly long layovers in Anger and Bitter Resentment stages) since it has forever changed my wellness habits and how I treat my body.
