Everything I speak about in this series of posts is from my own experience and research and for informational purposes only. The following information is not to be misconstrued as medical advice, which is why I always recommend first to speak to your health professional if you have any questions.
Having said that, there are many specialists who have been instrumental in my own recovery from HA and who I believe are invaluable resources within the field of menstrual health and women’s hormones. I have referenced some of them at the bottom of this blog post.
I was 22 when I was first misdiagnosed with PCOS. I had gone to the hospital for a routine transvaginal ultrasound (for what specific reason I forget now), and the ultrasound technician said to me,
‘Yasmine, all looks good from what I can see, but you do have PCOS.’
I said ‘PC what? What is that exactly?’
‘Polycystic Ovarian Syndrome. But don’t worry, it’s nothing to be concerned about now until you want to have children.’
I left the hospital a little confused and slightly worried, but I was only 22 and certainly not ready to have children yet. However, it didn’t stop me from researching PCOS on Dr Google when I got home.
So, what is PCOS exactly?
Polycystic ovary syndrome (PCOS) is a common condition that affects how a woman’s ovaries work and when the hormones are out of balance.
The 3 main features of PCOS are:
- irregular or absent periods (amenorrhea) — which means your ovaries do not regularly release eggs (ovulation) and can lead to issues with fertility
- excess androgen — high levels of “male” hormones in your body (shown through blood work), which may cause physical signs such as excess facial or body hair
- polycystic ovaries — your ovaries become enlarged and contain many fluid-filled sacs (follicles) that surround the eggs (but despite the name, you do not actually have cysts if you have PCOS)
If you have at least 2 of those main features, you may be diagnosed with PCOS.
Some other factors that are part of the criteria for diagnosis for PCOS are insulin resistance, where the body does not respond appropriately when the hormone insulin is produced to help process sugar (glucose). Therefore, the body ends up with high-circulating insulin levels to try and overcome this resistance.
Polycystic ovaries contain a large number of harmless follicles that are up to 8mm (approximately 0.3in) in size. Usually, the number is more than 25 follicles on each ovary to diagnose as PCOS (BUT, as I discovered later in my research, you can still have lots of follicles on an ovary for HA).
The follicles are underdeveloped sacs in which eggs develop. In PCOS, these sacs are often unable to release an egg, which means ovulation does not take place.
It’s difficult to know exactly how many women have PCOS, but it’s thought to be very common, affecting about 1 in every 10 women in the UK.
More than half of these women do not have any symptoms.
What are the symptoms of polycystic ovary syndrome (PCOS)?
If you have signs and symptoms of PCOS, they’ll usually become apparent during your late teens or early 20s.
They can include:
- irregular periods or no periods at all
- difficulty getting pregnant as a result of irregular ovulation or failure to ovulate
- excessive hair growth (hirsutism) — usually on the face, chest, back or buttocks
- weight gain
- thinning hair and hair loss from the head
- oily skin or acne
- Poor sleep
PCOS is also associated with an increased risk of developing health problems in later life, such as type 2 diabetes and high cholesterol levels.
By this point in my research, I started to believe that I did in fact have PCOS because I could tick off the following symptoms off the above list:
1. Irregular periods or none at all (only when I took breaks from the contraceptive pill)
2. Hair loss (which after I was correctly diagnosed with HA, was due to chronic stress)
3. Acne (this was not because of PCOS, but in fact due to a hormone imbalance that the Pill was masking for 15 years)
Other than the above symptoms, I didn’t look like a ‘typical PCOS’ patient in the sense that I never struggled with weight gain and had no issues with excess body hair. I remember coaching two female clients who were both PCOS sufferers, but physically I looked the complete opposite of them.
However, everything became clearer with my official HA diagnosis by my endocrinologist 12 years later from that first misdiagnosis (I was misdiagnosed again with PCOS through a second ultrasound in my late twenties). As I delved deeper into the differences between Hypothalamic Amenorrhea and PCOS via the book ‘No Period, Now What?’, I understood that people with PCOS can come in all shapes and sizes — very much like those with HA. PCOS doesn’t just affect females who are overweight or who have excess body hair. The usual prescription is ‘if you’re not ready to have children yet, here’s the Pill (birth control) to help get your periods back and regulate them and come back to us when you’re ready to have children.
The birth control ‘band-aid’ is rife in the medical community and it was the reason I was told that staying on the Pill was completely fine in the long-term. It seems that whenever someone has period problems, the doctors go ‘here is the birth control pill, it will fix everything’. But unfortunately, it does not address the underlying cause.
Misdiagnosis for me came in the form of the ‘amenorrhea’, and on those first couple of ultrasounds I had the scan showed I had polycystic ovaries, although I didn’t actually meet the full PCOS criteria. The sonographer just mentioned ‘oh you have lots of follicles on your ovaries, it’s polycystic ovaries and therefore you have PCOS’.
At 34 when I was starting my fertility journey and having all the preliminary tests done, at my first ultrasound I mentioned to the sonographer that I have had PCOS since my early twenties. She said that there was no evidence from her scan to confirm that. I asked if it was possible that the cysts had disintegrated over time? She said it was a possibility or that previously on my ultrasounds it might have appeared that I have polycystic ovaries, but that didn’t mean I had PCOS. Especially as I didn’t display any of the other features of PCOS.
I later discovered there is a distinct difference between having ‘cysts on your ovaries’ and ‘polycystic ovarian syndrome’, and it is so important to understand this when it comes to the different recommendations for recovery for HA and PCOS. If you have HA, you are recommended to increase fuelling by including all the different food groups and cut out high intensity exercise. For PCOS recovery you’re usually told the opposite to this — to reduce or cut out carbohydrates to control rising insulin levels, and to lose weight by exercising.
Treating polycystic ovary syndrome (PCOS)
There’s no cure for PCOS, but the symptoms can be treated. My best advice would be to speak to a GP if you think you may have the condition.
If you have PCOS and you’re overweight, losing weight and eating a healthy, balanced diet can make some symptoms better.
Someone with HA who is misdiagnosed with PCOS is often put on an insulin-sensitiser like metformin, which was my case (following the second time I was misdiagnosed with PCOS). Metformin is the first-line medication for the treatment of type 2 diabetes, particularly in people who are overweight.
Metformin stimulates ovulation in women with PCOS and can encourage regular periods, even if you do not have diabetes. Metformin is not licensed to treat PCOS specifically but can help manage the symptoms and can sometimes be prescribed to improve fertility.
I see now in hindsight that when I came off the Pill in my thirties and still had PCOS on my health records that metformin was prescribed to me to help with my acne issues, to encourage my periods to return and to improve my chances of fertility. But because my insulin levels were completely normal (demonstrated by blood work that was done), I did wonder at the time why I was prescribed something that lowers your blood sugar levels by improving the way your body handles insulin. I also think back to when I was on metformin for a short period of time, that I was suffering from a lot of GI tract issues. After some research I discovered that Metformin commonly causes gastrointestinal symptoms such as diarrhoea and flatulence.
The lessons I’ve learnt through my own experience is that it seems very easy to diagnose PCOS because it’s quicker and easier to diagnose than HA. I was essentially given a PCOS diagnosis because I wasn’t getting my periods and had ‘polycystic-looking ovaries’. In most of these cases doctors haven’t researched deeper into the bloodwork and other symptoms of the patient, which could tell a very different story.
HA is very much under-diagnosed. Usually because HA is masked by being on the contraceptive pill. If you go to your doctor with period irregularities, your doctor will just go ‘oh, just go on the pill and it will fix all your problems’. Unfortunately, it will not fix any of your problems at all but mask them until you have to face them again when you decide to come off the Pill.
If it’s one thing that my two misdiagnoses of PCOS and HA diagnosis taught me, is to do your own research to be well-informed on your health, and to have the confidence to ask more questions to your healthcare provider(s). Remember that you know your body and your health better than anyone. Overall, it took many years, several tests, even more blood tests and hospital visit after hospital visit for an endocrinologist to be the one to finally diagnose me with Hypothalamic Amenorrhea. A lot of the time I had to challenge medical professionals to get answers. Make sure you are referred to the correct specialists for your health issues as it can save you more time in the long-term, particularly if fertility is your goal.
Resources used and additional information:
NHS website — https://www.nhs.uk
‘No Period. Now What?’, by Nicola J. Rinaldi, PhD — https://www.noperiodnowwhat.com
The ‘All In’ Podcast — https://podcasts.apple.com/gb/podcast/the-all-in-podcast/id1540703549
Dr Jolene Brighten — https://drbrighten.com