My PCOS Journey

September is PCOS Awareness Month and I’d like to take the opportunity to share my personal story and journey with PCOS. I’ve never written it all out before, so I am going to do just that in the hopes that someone else who is struggling similarly to how I was will benefit from reading.

Some information: PCOS is an endocrine disorder that causes enlarged ovaries, follicle buildup, increased testosterone, and so much more. People with PCOS may struggle with infertility, weight gain, persistent acne, hormonal imbalance, mood swings, heavy or irregular periods, and the list goes on.

As a teenager, I always had very heavy cycles. They were extremely painful and caused some of the worst cramps I’d ever experienced. When I was 15, I visited a gynecologist for the first time to see if there was something they could do. They did what any GYN nowadays will do for a teenager or young adult struggling with their periods-put me on birth control.

For a while, it did help lighten my cycle and made it regular. I was never late and my cramps weren’t as bad. I was on and off of it for 5 years. Still didn’t have the greatest of cycles, but it was moderately better. I also didn’t know of any other options at the time, so it was helpful.

Quick backstory: Right before I turned 15, I had surgery to remove a 10 cm mass on my right Fallopian tube. The mass destroyed my Fallopian tube so badly that all that was left was the frimbriated and they ended up performing a salpingectomy, or in other words, removing what was left of my right Fallopian tube completely. There wasn’t a real answer as to why this happened, but my doctor at the time believed it was built up scar tissue from the appendectomy I had 9 years prior. This all will come into play later in this post, but keep all of this in mind.

Flash forward 3 years-I am in my freshman year of college. At this point, I was not on birth control. I started having really intense, painful cramps that were not like my normal cramps. I had a friend take me to the emergency room where they discovered I had two cysts, one on each of my ovaries. I followed up with a GYN, who told me I “probably had PCOS” and again, gave me the typical “treatment option”.

You guessed it-birth control.

I didn’t end up filling that prescription, mostly because it was the Spring semester of my sophomore year, and let’s be real: remembering to take a pill every day at the same time was not going to happen. I also didn’t feel that I needed it; after the initial ER visit, I didn’t have the pain any more. If I wasn’t having pain, why should I go on medication? (Plot twist, young Kristina: that’s not how that works.) I told myself that because there was no need to take birth control, I wasn’t going to take it ever again.

Right.

A few months later, I found myself in a situation I never thought I’d find myself in. Full transparency here: this is not something I’ve ever really talked about on a public forum, and while I’m not going into detail, please be advised that the nature of my experience may be triggering to some who have sensitivity to domestic violence.

To be very vague and brief, I became involved in an abusive relationship. For reasons that I still struggle with today, I went back to the only option I had. I didn’t feel that I had any other options and as a fresh, barely 18 year old, I didn’t want anyone to know what was truly going on-so I didn’t ask.

When I finally left the relationship, I got off birth control and stayed off for almost a year. I started noticing that I was having the same cycle issues again, but this time, I wanted to try something besides the pill. I opted for an IUD and my GYN explained that it would be less aversive, due to it being a progesterone-only IUD. The process was excruciating, but worth it if it meant I had regular cycles. But it was better than that-I didn’t have a period at all. I was so happy that I didn’t have to be out for the count, at least 1 week per month. It was so nice to not have to worry about it.

I started having a different type of pain about 6 months into having the IUD. It got so intense to the point my now boyfriend took me to the emergency room where they found that I had 2 cysts on my left ovary and 1 on my right ovary that was hemorrhagic. I was so confused-the IUD was supposed to help this. I was not supposed to get cysts, because the IUD was progesterone-only. When I followed up with my GYN, she looked at me and told me that I was good to go-the cysts were gone and I could be on my way.

That is when I decided that something was not right.

I transferred OB/GYN offices and sought out a new physician, who thought I might be struggling with endometriosis. He performed a laparoscopic surgery and found two lesions on my pelvic sidewall. Though they were abnormal, they weren’t indicative of endometriosis so he referred me to his midwife. This midwife was amazing, and she was so wonderful that I disclosed to her some of my history. She was the first person who revealed to me that any type of repeated sexual trauma can cause nerve damage. I started pelvic floor therapy and felt some relief, but the experience overall was triggering and I stopped going after 4 sessions. The midwife I was seeing was still looking for answers, so to see the extent of the nerve damage, she ordered an MRI.

I’ll never forget the call I got on a Friday afternoon, right before the office closed. The nurse told me that my ovaries were significantly enlarged and there were follicles wrapped around each of my ovaries like a strand of pearls. She confirmed that this was indicative of PCOS and was likely the answer to all of my questions.

When I heard this, I immediately wanted to seek holistic options. No more birth control, no more temporary solutions. I saw a holistic practitioner who decided to run a hormone panel, along with many other blood test panels. I had also gained 15 lbs in just three months. She wanted to see what could be the cause and if anything else was going on. I can’t explain how it felt to have a doctor agree with you that something was not right.

This may sound dramatic to some: but that day in that office receiving the test results was the day everything changed.

My estrogen and testosterone levels were sky high. Testosterone in females is normal, but when it’s high, things go haywire. The same for Estrogen levels. Remember the progesterone-only IUD that I had (and still did at the time of the bloodwork)? Get this-my progesterone levels were ridiculously low.

This would all explain everything-the weight gain, the acne, the mood changes, the pain. Not only was I experiencing these cysts, but my hormones were so out of wack that I wasn’t even ovulating, which brought on more cysts and follicle strands. Throwing in the aspect of missing my right Fallopian tube and it was clear that my fertility was heavily impacted.

It is one year later and treatment has varied in a lot of ways. I have made lifestyle adjustments, take supplements, and have even moved to taking a prescription medication after seeing an endocrinologist. The thing with PCOS is that it isn’t a one solution fixes all. It’s a journey, and a year later I am still going through the ups and downs of severe hormonal imbalance.

The reason I share all of this (yes, even the long, drawn out details) is because so many women have similar stories. They are overlooked by OB/GYNs and if they are given a diagnosis, they’re being told their only option is birth control. When in some cases, birth control is going to make the root cause worsen. It is the reason I have such a passion for fertility and the reason I became a fertility doula. Someone out there needs to hear this.

I have been putting together this post for quite some time because I have shared vulnerable details. But I know that there is someone reading my post that is going to resonate with something I’ve said. If there’s anything you take away from this, let it be this: keep pushing. You know your body better than anyone else. You know when something isn’t right and you can ask for other tests to be run. You are your best advocate.

Don’t give up and remember that there are always other options.

If you’ve made it this far, thank you for reading and letting me share my story. Happy PCOS Awareness Month.