Possible New Diagnosis

[sunincapricorn]

Hi,

I’ve been struggling with my periods, extreme hirsutism and what I think are symptoms stemming from insulin resistance for about 10/11 years now. I’m 22 and first went to the GP about this when I was 12. Was dismissed time and time again for a multitude of reasons from simply being middle eastern as an explanation for my hirsutism to it all being part of being a woman. After a while, I just gave up. This summer it all got too much and I went back to see what we could do now that I’m older. After a heated discussion with a duty doctor and months of waiting for a follow up appointment regarding my bloods that showed clear evidence of something wrong, I finally got referred for an ultrasound which has led to an almost definite diagnosis of PCOS according to the lady who did my internal ultrasound. I’m just waiting for a follow up with my GP. All together with my symptoms, the scan and my blood work - will this lead to my long awaited diagnosis?

I also wonder what treatment plans are available and am looking for some fellow ✨cysters✨ to discuss living life with PCOS, especially since I’m at the age now where I’m looking at how this could affect my fertility in the (hopefully) near future.

I’ve had issues with different deficiencies as well that have meant I suffer quite badly with fatigue and wanted to know if anybody else has experienced this and if it is possibly linked to PCOS.

Thank you for reading my rantings!

[Afive]

Hi! First of all, do you have access to your blood test results? If not, get them. All of them ideally, if not at least the more recent 2 or 3. As you've realised, awareness of PCOS in GP surgeries is not very high unfortunately, so you will have to take things into your own hands (unless you get really super lucky with GP or do get a referral for endocrinology/gynecology that doesn't take a year long - and even then it's hit and miss if they will be helpful).After PCOS diagnosis, and if you don't want to have kids in the immediate future, you'll almost certainly be offered a pill to control the symptoms. Does it work? The honest answer is no one knows until they try.

When I was given my first combined pill it was dreadful for my mental health but it cleared my excessive acne (that was a first generation one!). With the second one I had bad secondary effects in general. They then prescribed me another one, that seemed to be working... After 6 months it stopped working (I did a private ultrasound that showed that I was ovulating). I tried another pill that was sort of ok for a couple of years (hirsutism and heavy periods didn't disappear)... It's a bit of trial and error unfortunately. Some people do feel better with the first pill they try, but I strongly recommend reading all the secondary effects at the start so you know that if something changes it might be due to pill. And it's your body, you know better than doctors what feels normal and what you are ready to endure.

After I had a baby and my periods restarted I went to GP and they gave me a progesterone only pill. After a bit I started bleeding, and the bleeding went on for a month. I went back to the GP and they said it was just my body getting used to it, and that I should keep taking it for 3 months. I decided that was not for me, I talked with my husband and we decided to use condoms instead. That trade-off work for me, but it might not for you. Are you in a stable relationship? Would it be a problem to get pregnant? All of those are things you need to consider. I would avoid long term contraceptives (like coil or injections) because if your body doesn't react well to them, it's harder to change (than to change pills!). But again, all down to your circumstances and what your priorities are.

You mentioned other deficiencies... Was it iron one of them by any chance? Fatigue is a tell tale sign of iron deficiency (and / or vitD). There is a big difference between "normal" ranges and "optimal" ranges. If you have really heavy periods and your iron is around 30-40 (which is not classed as anemia, so it will say "normal" in blood tests) you are guaranteed to experience anemia when you actually bleed during your period (since iron levels will go down sharply). Do doctors consider this? Only if you are incredibly lucky. Most likely will see a normal range and ignore the context. You will want to take control of it yourself, be your own advocate and highlight the issue with the GP... But be ready to be dismissed, so best is to know the optimal levels and take supplements accordingly. Not only for iron, but for vitamin D (and other potentially, that's why it's important to have access to your blood test results and see what the numbers are). For reference ferritin in women of child bearing age should be around 70 - do check my other replies I have put a list somewhere.

Unfortunately, PCOS doesn't have a standard treatment plan. There are also different types (or subtypes) of PCOS, and each responds to treatments in different ways (which complicates the interpretation of the few clinical trials that have been done). This makes it really hard for doctors to know what to do - it's not only that they are unaware it's that the problem hasn't been studied enough.

You also mentioned insulin resistance, and that is one thing that you can also raise, and be more concerned about. Diabetes is dangerous, if you can avoid that, it would be best. It might be impossible, as PCOS increases dramatically your chances of getting diabetes. Do try to keep fit and be careful with what you eat. Losing weight in a sustained and healthy way is harder for people with PCOS but not impossible. Inositol (which is a cousin to insulin) does help with this (in some types of PCOS)... you ideally want supplements with a 40/1 ratio of myo/D inositol. Is this a miracle drug - no! You do need to put the effort in changing lifestyle.

I can give you an example... I decided to loose weight so I looked at what I usually eat and started weighing my pasta (dose for a normal adult should be 80g raw pasta), and eat one steak instead of 2, and more veggies. I was eating more than double of that amount without noticing (I like to cook ane eat makes me happy!). But I wanted to get healthy, so I did an effort. At the start I was always hungry, but it does get better after 2 weeks (that's how long it takes for your body to adjust to metabolic changes). That helped me lose 3kg, but then I didn't shift for like 3/4 months. Then I started doing some dance classes, and after another couple months I lost another kilo and a half - I was around BMI 26 at that stage for reference. Only after I started taking inositol did I manage to get my weight down further (and I noticed I had way less food cravings). I went down to BMI 24.5 and was feeling much better. But I do need to pay attention and be on top of the food I eat. When I had uni exams, my stress increased, and I usually eat without noticing what I'm eating when I'm stressed so I gained weight again... It's a constant effort to manage your lifestyle choices, there's no miracle drug. And in the topic of miracle drugs, do not try the skinny jabs in the black market, they are dangerous if people are not being followed by a doctor! If your BMI is too high (usually more than 30), your GP can direct you to help with a dietician to help control your diet in a healthier way.

Hope this helps! Please DM if you want to chat more specific things! Good luck 🤞

[sunincapricorn in reply to Afive]

Thank you so much for this response. My ultrasound notes are now on my NHS app and can see that I’ve hit the criteria for PCOS among some other findings that I’m not sure of since it’s all in medical jargon but upon further reading, could be indicating endometriosis. My consultation with my GP is next week and I’m hoping for a referral to gynaecology.

I’ve been on Rigevidon before and didn’t find it very affective in regulating any of my symptoms and absolutely battered my mental health so just gave up on it. I would definitely look into it again if it’s something that is being monitored with my GP/clinician properly this time.

As for my bloods, I do have access to them and just as you said, it’s within range but on the lower side and my confirmed deficiencies are in folic acid and b12. These are medicated and I have my follow up test this week. I do wonder if this could be linked to PCOS as I have seen other women that suffer with the same issues.

The insulin resistance is definitely the issue I want to target most. I am overweight and despite regular exercise and portion control, I can’t seem to shift the weight as effectively as I would like and I do worry that with time this will lead to more troubling health conditions as well as factors like my fertility. I’ve heard of inositol and will definitely be looking into it if it’s going to help.

Thank you again for your reply, I’ve felt so lonely and isolated this week as there were a few other things on my ultrasound that have been worrying me and the thought of not being able to have a family of my own has been on my mind constantly, so it’s reassuring to speak to someone who has been in my position x