By Natalie Louise
I was diagnosed with Polycystic Ovarian Syndrome (PCOS) in 2016 after I had my first miscarriage.
I was a little taken back by this, why was this only picked up now? I have had problems for years with my body – specifically with my period.
The Symptom My Doctor Didn’t Catch
I didn’t get my period until I was 16, but I have always been a tiny girl and I’ve done dance since I was six years old. Whilst my cycle wasn’t long, it was always regular. Here’s the part that wasn’t so regular, each time I had my period I was in so much pain – to the point I was hunched over with a heat pack.
As the years went on, the pain that accompanied my period seemed to get worse. I decided to see a gynaecologist and was put on the pill when I was 18 for pain and, as a bonus, for contraception.
My Struggle With Period Pain
The pill worked fine for me for a few years until the pain from my period got so bad that I was missing consistent days off of work and no manager could understand why I was taking so many days off. I literally couldn’t get out of bed and had to be carried to the doctors because the pain was so intense.
I went back to the gynaecologist and my pill was changed to something stronger. Unfortunately, this still did not help, and my pain got continually worse. My doctor suggested that I go off the pill to let my body normalize, and resume with the pill later on.
After stopping the pill, I had a regular cycle for about a year.
After that, the pain resumed and back to the doctor I went. More blood tests, ultrasounds, etc. These tests picked up nothing, everything came back negative. Seeing as how my pain hadn’t gone away off the pill, I decided to try going back on it.
Month after month, I took more pain killers than I can count because the pain was so horrible.
Miscarriage and My PCOS Diagnosis
After a long while of dealing with this chronic pain, and when my husband and I decided to start a family, I went off the pill once again. I became pregnant within two months of coming off the pill.
Unfortunately, I had a missed miscarriage where my body didn’t recognise that I had miscarried. This is when I was diagnosed with PCOS. How I was diagnosed? The doctor gave me an information sheet about PCOS, but I was not provided much by her about how I got PCOS, or even what it was. In fact, I felt she didn’t even have many answers to give me. All she could tell me was that it showed in my blood work.
In November 2017 I miscarried again. Doctors were able to identify a cyst on my right ovary that has since (luckily) disappeared. Again, I received no answers, and no one could tell me how or why.
How I’m Doing Now
I am currently going through IVF. My husband and I have been trying to become pregnant again and decided to try IVF as we were not sure why I haven’t yet been able to get pregnant. We did some tests at our local IVF clinic and found out I have not been ovulating. My scans now show my ovaries are polycystic, which means I have several cysts.
We have four frozen embryos waiting until my body gets its butt into gear. Unfortunately, my hormones are all over the place again and I am waiting for my period to arrive to see if we can have our embryo transferred.
Whilst my pain is now non-existent, I have made huge changes to my lifestyle and what I put in my body. I take vegan omegas and nutraceuticals, which I feel has helped with my decreased period pain symptoms. I have no plans to go back on the pill, as I cannot get pregnant and I am no longer in that much pain where I am missing days off work. 🙂
To continue to follow more of Natalie’s story, look for her on Instagram at @natalie_louise_xx
A Final Note from Morgan at PCOS Project
Natalie’s story is one that so many women can relate to. Unfortunately, lean women with PCOS often go undiagnosed for years because PCOS is so strongly associated with obesity. It is often not until women are trying to conceive that women with lean-type PCOS end up getting diagnosed. (1) By this time, hormones have long been out of balance and insulin resistance has already progressed to a point that is hard to battle. Some studies report the prevalence of insulin resistance (IR) in lean-type PCOS to be 6-22% (2), but at that range and with the high percentage of missed or delayed diagnoses, it’s hard for this writer to believe that the incidence rate for IR is that low.
Lean women with PCOS also have a higher percentage (compared to normal weight women without PCOS) of having missed diagnoses of diabetes and heart conditions due to high cholesterol. (1)
Both lean and overweight women with PCOS go through unique challenges on a daily basis. The more we share our stories, like Natalie bravely has, the more we can help others understand the true impact that PCOS has on a global level.
If you are willing to share your PCOS story, please email me at firstname.lastname@example.org.