Misdiagnosis if PCOS

[Kimb82]

I have been diagnosed with PCOS however I’m not sure I agree with the diagnosis. It took me 5 years to convince the GP to refer me to an Endocrinologist and I feel that they have diagnosed me with PCOS as they couldn’t find anything else. My symptoms include hardly any periods over this time and I suffer from depression that anti depressants do not touch. I always was a strong person and could handle stress and pressures but since these hormone issues started I become so distressed and I don’t even recognise the person I am anymore. I feel the depression is a symptom of whatever is going on rather than the cause. Weight gain happens really quickly despite engaging in lots of running and a pretty healthy diet. However at times I feel that I have no control over food. I feel like my face looks fat and round all the time to the point I don’t look like me anymore. I just wanted to know if anyone had experienced something similar and if anyone has any advice or recommendations for a private endocrinologist in the London or the surrey area that would be more sympathetic and investigate in more depth.

Thank you in advance

Kim

Did they find cysts on your ovaries?

With your symptoms it does point to PCOS but there are many symptoms and you don't always have all of them

Have you had blood tests/scan ?

They found a few on my right ovary only. Thank you all for your responses I really appreciate it

I've got PCOS and the two indicators which I have which led to a diagnosis are the classic 'ring of pearls' cysts around my ovaries (visible on an ultrasound) and out of the normal range LSH and FSH levels. I would suggest that you ask the GP or consultant how they came to their diagnosis.

Also, anxiety and depression can be part of PCOS but as you said, could also be a separate issue.

If it is PCOS, then Verity can be a good source of support/information.

I do not have excessive facial hair although I understand you do not always have all of the symptoms. I was prescribed metformin even though my insulin levels are normal and that hasn’t changed anything.

Thank you. When I first saw the endocrinologist she told me she was convinced I didn’t have pcos. She seemed obsessed with how much I shaved my face which I don’t. When she finally diagnosed me I did ask her how she came to this conclusion and she said the lack of periods and the appearance of the few cysts on my right ovary. I did ask why she hadn’t mentioned the cysts previously and I got very vague answers despite my pushing for answers. Most of my consultations have been over the phone due to Covid which makes it more difficult to get answers

No idea why she was so obsessed with facial hair. It can be a symptom but it depends on the person. I've known people with PCOS who are very slim and others overweight, some with facial hair that needs plucked/shaved daily and others with no visible facial hair, some people with very irregular periods and others with 'normal' hormonal cycles. It very much depends on the person.

Hey,

Did you ask for the blood test results?

I have pcos and I dont have all the symptoms, pcos is not always facial hair etc.

If your progesterone level is low this can be a first sign of pcos, estriadol too high comparing to low progesterone.

Are you planning to get pregnant? Pcos can lead to cycles without ovulation but not always.

Regular cycles?
Pcos can also impact your weight/ mood / sometimes insuline intake ( or how they call it)

What other tests have you had? Any nutritional blood panels?

I had everything you've listed - periods vanished for months at a time, I had cysts on my ovaries (identical on each side which one HCP found a fascinating coincidence), depression, odd appetite and weight gain in ways I don't tend to (I normally gain more in thighs/hips/upper arms, but I was suddenly gaining in the waist and face).

I was misdiagnosed with premature ovarian insufficiency/early menopause for 5 years based on my symptoms. I only found out after 5 years and taking the NICE guidelines on menopause practically begging for treatment as I felt so low and like I wa falling apart as more menopausal symptoms appeared that a GP dug through my records to find out none of the diagnostic tests (like the previously mentioned LSH and FSH levels) supported that diagnosis, it was just the easiest with my symptoms.

It ended up being multiple nutritional deficiencies, a couple very severe, that needed on-going management to bring me back out of. I'm going to have to carefully manage my diet and supplement a few things for the rest of my life as I seem to struggle to absorb (or in the case of Vit D, make from sunlight).

Bodies are weird, that group of symptoms could be many things - including PCOS, but I think more information would probably help you understand it better whichever it is. At least exploring options like inositol (usually paired with folic acid) which has some early but interesting results in helping that may be better than metformin if you don't have current insulin issues.

I was diagnosed with pcos without actually having cysts on my ovaries 🙄 just because I was overweight and had no periods for a while and then really heavy ones(amongst a variety of symptoms). The doctor literally took one look at me and decided it was that. So frustrating because I know there's something else going on and being able to get to the bottom of it (endocrinologically I think) would be so helpful.

Have you had a full thyroid panel and cortisol looking at? B12 and vit d? I would want those looking at