New and desperate for advice

[Brody34]

Hi I’m new and need advice, I feel like I may have pcos, I have adult acne excessive hair growth on face my hair on my head is thinner down my part and around the front and I struggle with weight. My doctor did do a blood test to check my testosterone levels and apparently it was fine and that I didn’t have pcos. I asked why I have all these symptoms and basically told it was just one of them things and my hormones are fine. I was sent off with no help. I don’t know what to do could I just have these issues for no reason? I feel like I’m going mad every time I try to google what could cause them it comes up with pcos, highly testosterone high DHT but yet my test said mine were fine 😢 x

[Fruitchicken]

I’m in no way an expert and others may or may not confirm this, but I don’t think they should use only a testosterone test to exclude PCOS. There are NICE guidelines for diagnosis that state that testosterone levels should be checked but they may be normal. Here’s the link: cks.nice.org.uk/topics/poly... does sound like you have signs of hyperandrogenism but you don’t say if you have irregular periods. If so I would have thought you should have a scan of your ovaries done. Regarding your weight and acne, a diet cutting out refined carbs, sugar and snacking might help, as all of these things increase insulin release, which a) increases testosterone and b) keeps fat locked up in your cells.

[Eileen200800]

Hi i agree with fruit chicken, I think the key is that it presents itself in different ways in different people and just because you don’t tick every symptom doesn’t mean you don’t have it.

My GP said I didn’t have it because my testosterone was fine. So I requested copies of my blood test results and could see I had a high LH:FSH ratio. I then asked to be referred to gynae who confirmed I had PCOS via high AMH and an ultrasound which showed cysts.

My symptoms were acne and lack of periods but my weight was okay with no hirsutism so I was confused for quite a few years.

It’s stressful to be diagnosed but I feel more comfortable now that I have Metformin to help with the insulin resistance and Letrozole for trying to conceive.

[CurlyGirl983]

Oh my dear! You are not alone and while it feels really crap and frustrating a lot of women have this experience with their doctors lax attitude to investigating pcos. I too had lots of pcos symtoms, no period for 6 months, nasty acne, weight gain etc. Blood tests were done all normal. I changed doctors surgeries to find one person who would listen to me. Found one had an internal exam and they saw cysts that was 11 years ago. Unfortunately that wonderful doctor soon left leaving me to grapple with it on my own. I don't trust gps now and just do research on my own.So yes. Diet try to take out refined carbs (sugary snacks, white bread and pasta) replace with more complex carbs, protein and healthy fats (oily fish, seeds, nuts) leafy greens (spinach and kake) are also good at soaking up any excess oestrogen. That doesn't mean you can't have the odd treat but make sure it's occasional 😉

Exercise is also great; yoga, a good strenuous walk, run and weights. Also things that make you feel better-stress is a friend to pcos let alone lots of reproductive issues.

Finally and by no means am I saying it's THEsolution. Look up DAISy PCOS research study (uk based) . I took part in this in London a few weeks ago (they need more participants) and I had blood tests done that will completely drill down to what your hormones are up to. This might point you in the right direction and you can meet with some specialists to talk about it. I am awaiting my blood test results (nervous) but doing this study has been the biggest breakthrough of my pcos journey. Check the website. There is a criteria for participation but it sounds like you fit it.

Good luck, chin up, it will be alright. It feels overwhelming but time to empower yourself. Pcos (if that is what you have) can be managed and reversed.

[Brody34]

Thank you everyone, great advice I really appreciate it. I feel like I’ll just follow your advice and go with my gut and my symptoms under the assumption I have it and find a way to help myself with the help of google of course 🙈 Iv not really heard of it to be honest so iv been researching and looks like trying to lower testosterone and dht is a thing so I’ll try my best and fingers crossed I can manage my symptoms alone. It’s rubbish when your doc basically says get on with it, they don’t realise the damage these symptoms can have on a woman mentality let alone leaving them feeling alone and not knowing how to help with symptoms. Xx

[Fruitchicken in reply to Brody34]

That sounds good. My daughter has had similar difficulties getting diagnosed, but changing her diet and taking myoinositol has started her periods regularly after 8 years of hardly any. So it can make quite a big difference. Also her skin is better. The doctors have a limited range of options anyway and all drugs can have unwanted side effects. I would say it’s good to try self management and if that doesn’t help, return to the GP ( a different one), armed with the NICE guidelines.