24 August 2018

The PCOS Diaries: My Diagnosis Story

A couple of weeks ago I shared my story about how and why I've been losing weight. The main reason being my diagnosis of PCOS. Since then I've had a few people ask to share how I was diagnosed, and what started off that whole process. So grap a cup of tea, or coffee whatever you prefer, sit down, and get ready for a long one.
For those of you who don't know what PCOS is - and I was definitely one of them - it stands for Polycystic Ovarian Syndrome. I heard it and thought ah okay, polycystic ovaries - I've heard of that, fair enough. Nope - turns out it's not the same thing. And as someone who has the full fledged syndrome, it really shouldn't get confused. I'm going to try and explain this as best I can.
PCOS is basically a set of symptoms due to elevated androgens - male hormones - in women. When speaking to my doctor, they've said it's actually a genetic condition - they don't know what causes it, but you can have the gene for it in your family, and then something in your lifestyle could trigger it. Or you may always have it. This hormone imbalance creates problems in the ovaries, meaning you can have irregular cycles, and polycystic ovaries. This hormone imbalance can cause other issues, such as excessive hair growth, acne etc. This imbalance can also cause insulin issues - meaning your body can't handle insulin like it should, and therefore you can gain weight very quickly if you don't manage it properly, and means it is more difficult to loose weight. So all sorts of fun stuff! So how did I find out I had it?
I've been on a contraceptive pill since I was about 18, and I had always said if it got close to 10 years I would come off it. Mainly because I didn't like the idea of being on a pill for a long period of time. My closest friends came off theirs, so that was a bit of a trigger for me to decide it was time to come off mine. Once I did that, I noticed after a couple of months that my cycles were becoming longer - just by a couple of days at first, and then it was a week late, then 2 weeks later, and then between January and March I had no period. I had already begun to worry in December, so I booked to see my doctor in February to find out what was going on.
This was also a push from friends and family as well, as not only did I have irregular cycles, but as long as I can remember I've had facial hair as well. Which has always been a sore point, but it wasn't until we were looking at causes of irregular cycles that we saw hair was a joint symptom for PCOS. I'd also put on a lot of weight very quickly the last couple of years, so it was a number of variants that made me really start to think I may have it.
So in February I went off to my Doctor (with my Mum) and talked to her about what was going on and my concerns. I was a little concerned my Doctor would brush it off and just be like no you're probably fine, just do some exercise or something. But she listened and took me seriously, and sent me to have some blood tests to check my hormone levels as well as thyroid and iron levels, and also to have an ultrasound to look at my ovaries.
When I called for my blood test results about a week later, I was told to make a phone appointment to talk the results through with my Doctor. So I knew there was something, and by the time that appointment came around they also had my ultrasound results. So about two weeks later I had my phone appointment - not with my doctor as she was off sick - and he basically just went "So you've been told you have PCOS correct?". Um no, no I hadn't but thank you for sugar coating it. He then went on to tell me I had it, and that I needed to make another appointment to come in and speak to my doctor about the specifics and what action to take next to help manage it. He booked me an appointment then - but it wasn't for another two weeks. So I then spent the next two weeks researching PCOS, getting myself very worked up about it and what I had to do to manage it before I finally saw my Doctor.
She told me I had a mild version, and the best thing to do would be to eat healthily and do exercise - so basically lead a healthy lifestyle. When I asked her about the insulin part of PCOS and the types of foods I should or shouldn't be having, she was quite unspecific and just said have a balanced healthy diet. So, that's what I did.
Then, we went to see a specialist a few weeks ago, and he told me that I really needed to focus on what I was eating, and digesting. Because due to the insulin issue, my body can't break down sugars as well as normal, and also high GI carbs wouldn't digest as they should which would then cause weight to go on again. In order to manage and balance out my hormones - I had to get my weight and diet in order. Which is what I've been doing ever since - which I'm planning to write a whole other post on in terms of diet and food. But as part of this consult, he also told me that for my height, my BMI was high, and that I needed to loose about a stone to be considered in a healthier limit.
It's essentially a vicious cycle with PCOS - your hormone levels screw up your insulin resistance so you put on weight very easily, and makes it super hard to loose it - but the additional weight screws up your cycle and hormones even more. So it's something you need to manage for the rest of your life pretty much. There are drugs to help manage, and you can go on the pills etc, but for me I really want to manage this naturally as I just feel it'll be better for me, and so I don't become reliant again on the pill to keep things in check.

I've had a few people asking me how I felt about the diagnosis, and I'm not going to lie - I felt absolutely crushed after that initial call. Honestly, I knew it was coming because they wanted to talk to be about the results, but I remember sitting there after the call and just crying because I didn't know the full extent of what it meant. And as any normal human does, I had googled the shit out of PCOS and was fully aware that it made conceiving harder, would probably involve a lifestyle change and would be a lot of work. For me, the hardest part was telling my husband - I just felt like I had massively let him down. We've always said we want a family, so what if this meant that I couldn't give him one? He was amazing, so supportive and has been the whole way through, but it was always my biggest worry with this - and still is. But also, I just felt like less of a woman. Feminists will hate me for this - but evolution-wise, as a woman you're body has been crafted and made with the sole intention of producing babies. But something in me meant that may not happen, and I didn't quite know how to feel. I just felt like less. And that feeling is still there, that doesn't go away - and it's something I'm still working on, but I think it's totally normal.

Thankfully, I have a friend who also suffers, and when I spoke to her about it, it massively helped because it made me feel like I wasn't alone or overreacting. She felt exactly the same as I did at that time, and even my husband said he could tell I felt so much better after I spoke to her than I did before. So it really does go to show that talking to someone who understands, really does help.

I have come to terms with my diagnosis - which is why I feel comfortable sharing it. I hadn't really told many people I had it because I felt a bit ashamed, but also I knew it would then bring up questions around fertility issues - which I wasn't ready to answer. I'm still not really because that is super personal and not something we've really approached yet. Even though I've come to terms with it, I still have my down days, the ones where I feel less, or useless. My cycles have definitely improved since sorting out my diet, but they're still not perfect and honestly that causes a lot of anxiety for me a lot of the time. Just to be clear - I don't suffer from anxiety, and I know people who do so I would never try to say I have the same - but it does make me anxious. For example, we're going on holiday in a couple weeks - will I be on my period for it? Who knows? It's a bit of a guessing game which is a massive pain, but again - something I'm learning to deal with. I'm so lucky to have a great support network that are always there for me to talk about it, but it can feel lonely at times. I do have my down days, but I also have good days where I'm like it is what it is. That's totally normal.

This is part of who I am now, and although it feels like a huge part now I know that'll reduce in time. And the more I can manage it, and control it, the more comfortable I'll feel with it. And I just want to reiterate - it really helped me to have someone else I knew who had it and understood, so please reach out - email me or message me on here - if you want to talk about. You're not alone!

Much love, Lisa May x

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