PCOS vs HA confusion

[sadsister23]

I'm not sure if this is the correct board to post this on because it is more fertility than conception related but it seemed like the best fit so I hope it's ok.

I have a history of anorexia and, although a healthy weight now (BMI 20), was exercising quite extensively up until a few weeks ago. I have been diagnosed with hypothalamic amemhorrea and have been working slowly on this over a year - increasing my food intake, eating regularly etc. The endocrinologist I saw a few weeks ago suggested further weight gain and reducing exercise.

However, I had a mini fertility at a private clinic today and it turns out I have PCOS and the consultant said this explains my missing periods. However, I had fairly regular periods up until I became anorexic so I am not sure if I could possibly have HA AND PCOS? He seemed to think not as I am a healthy BMI but a book I have read stated that the 'fertile zone' is more like BMI 22-23 and that you can have HA at any size if you are in an energy deficit, which I possibly was until I stopped exercise a few weeks ago.

If you couldn't tell I am very confused! I don't know what to do now - continue with my HA recovery and what that involves or give up and focus on the PCOS. Treatment for PCOS involves going on the pill which conflicts with the treatment for HA. And apparently if I want to get pregnant I'd need to go on clomid and I have no idea how that works.

Does anyone have any experience of this? I'm so lost.

Hi @sadsister23 , sounds like a complicated situation but I have PCOS so can give a point of view on that!

the first thing I’d say reading your post is that it is probably worth a follow up with your endocrinologist, as the fertility specialist may have only been focused on fertility issues rather than looking at the holistic picture of your health and medical history. I think laying out all of the information with your Endo would help them assess how much the PCOS is really affecting things.

there are multiple treatment options for PCOS, the pill is one, but really it depends on whether you are actively trying to conceive. Again, your endo or GP will be able to advise. For example I managed my PCOS for years through diet but appreciate this could be complicated for you with the anorexia diagnosis. I am now on metformin to stimulate a cycle as I am TTC.

clomid would be an option to explore if changes to your diet and metformin do not help you conceive, but I wouldn’t jump straight to this option. Your GP will expect you to TTC for 6-12 months before going down this avenue depending on your age.

I hope that helps, sorry it was so long!

I heard on a podcast recently (link below) that HA is often misdiagnosed as pcos, as the symptoms are similar, but the cause is different.

Based on my very limited knowledge, I would think you’d be best to approach as if it’s defs HA, increase bmi and ensure high nutrient intake. This may get you ovulating again and, if it does, your body will be better equipped for pregnancy. If at that point it’s clear you do also have pcos, treatment can then be adjusted and ovulation meds considered if still needed.

If you go straight for clomid it might(?) still get you ovulating (I don’t know) but your body would be less ready, if the root cause of HA is still unaddressed.

if link doesn’t work it’s The PCOS Nutritionist Podcast, episode 5 - the 3 common drivers of lean pcos

https://open.spotify.com/episode/68qyH2Nf6e5cz9mp4oY5Vt?si=r3pNG5QbS9uxLmiUySRMTQ

Thank you both so much for commenting

@FantasticalCat unfortunately my endocrinologist is worse than useless. I saw her in October and I told her I was worried about my fertility. She didn't bother to take my height and weight so doesn't know my BMI and told me that my ovaries could be in necrosis and that I should put on some more weight. I think you are right that the guy yesterday didn't take a holistic approach though. The doctor yesterday suggested going back on the pill to manage my PCOS but if I do that I won't know if I have healed from HA. It's so complicated!

@Sierra26 yes, the more I am researching, the more I am seeing that HA can be misdiagnosed as PCOS - I will definitely check out that podcast episode, thank you. The doctor yesterday seemed to think I might not ever get a period due to my PCOS so I won't know if/when I'm healed from HA. I wish it was more straightforward than this! It's a shame that doctors don't really seem to know what they are doing in this space.

@sadsister23 totally agree - the advice I’ve had from GPs has always felt vague and dismissive too!

The one thing I found that really helped was a private appointment with a gynaecologist. She was incredibly helpful and could talk more broadly about fertility, PCOS treatment plans and impact on my health long term. Because it was private, she was able to give me a quick scan there and then and confirm how each ovary was looking. If you can afford it, it could really put your mind at ease to schedule a one time consultation with someone who specialises in these issues.

@FantasticalCat thank you. The guy I saw on Thursday who did the mini fertility was a private obstetrician-gynaecologist but I think I will need to get a second (third!) opinion because he wasn't very helpful at all. These matters can be so upsetting for women and I really feel that doctors should be more sensitive and clued up when talking to patients. I'm glad you got the help you need though, thank you for your support and advice - it can be a scary and lonely place trying to navigate a new diagnosis like this.