My journey from PCOS to Hypothalamic Ammenorrhea to regular cycles
Updated: Feb 16, 2022
I’d love to share my story and be honest about my battles to regaining my cycle over the past couple of years and hope that with sharing I can educate & help others going through similar things.
I started taking the pill when I was 15 years old. All my friends were on it and I had just started getting serious with a boy in school. From 15 to age 28 I continuously took the combined pill ‘yasmin’. At age 28 I decided it’s time to come off the pill. In general doctors advise to give it up to 3 months for the connection from the brain to the ovaries to be reestablished as the pill shuts down ovulation.
I got my withdrawal bleed after ending my final pill packet and patiently awaited my first real period since the age of 14. I waited until the 3 month mark since stopping birth control and realised that my period still hadn’t come back yet but i remained not too concerned as everything I had read had said to give it a bit of time.
Another 3 months later my period was nowhere to be seen, I decided to call the GP and let her know what was going on. She advised me to keep waiting a bit longer so that’s what I did. In the mean time it was lockdown. I got pretty consistent with extra runs on top of my strength training and did a few peloton challenges from home. I was working out a lot on top of my teaching classes and clients throughout the day. I was also intermittent fasting most days and just drinking coffee until midday.
It was now 9 months no period and I called back the GP updating her. She sent me for a blood tests and an ultrasound. Blood results took a few weeks and came back in the ‘normal’ range. I had to wait another 8 weeks to get an ultrasound so continued waiting for my missing cycle.
In the meantime I started to do my own research, I ordered and read ‘period repair manual’ by Lara briden. And ‘no period now what’ by Nicola Rinaldi. I started understanding how female hormones work and how potentially my active lifestyle and restrictive diet could be affecting my missing cycle. I called the GP to discuss. I explained to her that although I was within the ‘normal’ BMI (20) i was extremely active and sometimes restrictive with my diet. My GP told me that losing your periods due to energy balance only happens to marathon runners and gymnasts and that it’s very unlikely to be RED or HA. (Relative energy deficiency or Hypothalamic Amenorrhea) This shocked me. All the modern research I was doing was quite clear that the condition named “hypothalamic Amenorrhea” can effect women of any BMI or bodyweight and is simply just the brain (hypothalamus) shutting down ovulation as there is not sufficient energy around so it is not currently a priority.
At this point I became pretty obsessed, I got my blood results printed out and started y self analysis. I binge listened to every podcast on Spotify related to HA and spent my evenings commenting on Facebook forums and readings other people’s story. I was getting pretty positive that HA was what I was dealing with, but then everything got flipped around.
I got my call from the hospital to book in for my ultrasound the following week. I honestly thought not much of it as I was convinced I knew what was going on and knew the ultrasound was just to rule out PCOS to look for cysts (follicles) on the ovaries.
I waited patiently with the ultrasound inside me doing its job when the lady doing my scan pretty bluntly says “wow yes lots of cysts here, really large ones too” I was so in my own world it took me a moment to realise what she had said. Meanwhile she was taking snap shots of the cysts and moving onto the other side. She continued to say “Yes very large cysts on both sides, I can see why you are not having periods, You have Polo cystic ovarian syndrome (PCOS). “Excuse me, what!” i exclaimed. “Yes you’ll need to get these treated asap as they are very large, I’m surprised you have not seen weight gain and hair on you face yet. Also you might struggle to ever conceive naturally as PCOS is the leading cause of female infertility in the UK.
I barely made it out the hospital that day, I called my mum and boyfriend in floods of tears trying to come to terms with what i had been told. My obsession of HA turned into an obsession with PCOS. I booked an appointment with my GP a few days later who confirmed over the phone that i hit 2 of the 3 criteria for PCOS so that is my diagnosis. I explained to her my confusion that everything i was researching about PCOS was advising women to lose weight and intermittent fast but that i was already a small frame and fasting / eating healthy. She told me that i have a less common type of ‘Lean PCOS’ without insulin resistance and that i should continue to prioritise working out and consuming a healthy diet.
I knew something wasn’t right with my diagnosis, i had none of the secondary side effects most common with PCOS like excess facial hair and acne, my testosterone levels on my blood test were also in the middle range. I also started to learn that even women who are cycling can have follicles (cysts) on their ovaries and that it can actually be considered normal. I wasn’t happy with how i was treated in the hospital or by the GP and felt there must be more.
Thats when i found my Nutritionist Holly Dunn. Holly is a nutritional hormone specialist and i immediately felt like there was a light in the end of the tunnel after our first phone call. Holly sent me for more tests. I did another blood test but with a wider scope and also a Dutch test. I got both tests back within a month and was so eager to see the results.
The first thing Holly helped me rule out was PCOS, as my results showed clearly that i was actually dealing with Adrenal burnout and Hypothalamic Ammenorrhea (HA). Holly assessed my lifestyle and got me reducing exercise and increasing calories. She also got me on a supplement plan and every 3 weeks we would have a 1 hour zoom call to discuss how i was feeling. This process was so empowering but at the same time as i started to slow down my body started entering recovery mode. I ached all over from little to nothing activity, my hunger hormones raged and slept more than i ever have in my life. My sex drive slowly returned and my hair started feeling slightly thicker.
And then….. I got my first recovery period!! i was so happy. It worked. Holly made me stay focused and not lose track as its important to get at least 3 cycles under the belt before changing anything. 45 days later i got my second period, and 38 days later i got my third. I have now had 4 regular cycles and I’m feeling better than i ever have in my life.
I am just writing this as a memo to other women to become an expert on your own bodies. No doctor knows your habits like you do and there’s always a way to feel better and take charge of your health.
Thanks for reading