If I were you I would make a cup of tea and this is going to be a long one… (also please don’t judge my poor grammar, or if this generally doesn’t make sense, I am just spouting feelings here and hoping they mean something to someone)
I wanted to talk about Poly (my nickname for PCOS to make it sound a little friendlier) as I am reading more and more about it recently and as people document there first thoughts about things, any newly diagnosed girls might read it and be absolutely terrified and it doesn’t have to be that way.
I also wanted to talk about Poly with other sufferers or friends of sufferers to discuss other journeys and build a support system. For me I have had the argument in my head for months about whether to share it, I had this over arching desire to talk about it, but its so personal to me, my husband and our family so I wanted to let it settle in and get our heads around it.
I think its important to share it as when you are first diagnosed you can feel like a broken girl, however the more you read about how many woman out there also suffer (1 in 10 woman) you start to feel normal and begin to regain some control. Okay, you have this thing but lets break it down and work it out, lets talk to others etc. The more we talk about syndromes and fertility, and the more we realise my god we are so not alone, the less taboo and scary it becomes.
PCOS is also still so unknown to so many people, there are no cures unless you have a specific issue and only then, medication a temporary fix. People talk about diets and reflexology and other things that work for them but there are no definitive answers or magic fixes.
I wanted to start sharing my journey so that:
- New PCOSers will not be terrified, because this is not the end of the world I promise, its just a minor bump in the road.
- I can find other PCOSers to start talking too as I don’t actually know or have anyone to talk to other than reading posts on forums.
- To document things such as diet and lifestyle to see if it has any impact to my symptoms (I once read that mood swings are a big one and I always assumed that I was just a little hormonal at times, but lets blame PCOS!) and also to share things that I found helpful.
My personal journey: Diagnosis
It all started when I began getting anxious about irregular periods and my fertility, being newly married this wasn’t at the forefront of my mind, but it was certainly a new consideration. I began to worry that with irregular periods I wouldn’t know when I was ovulating so decided to start getting to know my body. As I began paying more attention I learnt that I actually didn’t ovulate which then hit a cord. I would talk to people and my doctors and they would all tell me, oh it’s completely normal and try and calm me down but I had a serious niggle that my body wasn’t working as it should.
I had three doctor appointments all told the same thing “nothing we can do” until I saw someone new, Dr Scott (or Dr Great Scott as he is now known in the Clarke household) he started off telling us that this happens to everyone and we went home but later that evening he called me saying he would like to run some tests on me, he told me he would be checking for PCOS and thyroid. Thyroid had already crossed my mind as it runs in my family but I couldn’t match the symptoms up to me and PCOS, no weight gain, no acne etc just irregular periods.
That week I was called in for bloods and the following an ultrasound. I received my bloods back before I even had my ultrasound and was told PCOS was looking likely. I started to get my head round things…
I was terrified for my ultrasound as I was told there could be a chance it would be internal, however they managed to see everything they needed to just from my tummy. The technician confirmed then and there that my ovaries were “polycystic” no doubts at all. When I heard this I very nearly cried, I just suddenly felt so emotional with fear for my poor little ovaries, but more so relief. I was scared for what this meant but I also thought “thank god” I knew something was wrong and was so glad I listened to my gut!
A few weeks after my diagnosis (by the way for anyone waiting for results, there are a lot of ‘maybes’ and ‘looks like’, this is completely normal from what I gather, even doctors are still trying to get their heads around it!) I was referred to my gynaecologist to talk about what this meant for my family. My appointment was in early December 2015. My gyno is another lovely doctor who asked me and Rich a few questions and told us that he would like to run some tests and see us again in 12 weeks. He wanted to know my hormone levels and whether or not I do ovulate. My next appointment is in 6 weeks this Wednesday, I was supposed to provide blood tests from 2 cycles, but as every PCOSer knows this is easier said than done and my last cycle was a record of 48 days, so will only manage to provide bloods for one. I am hoping this doesn’t postpone things but am prepared to have to book another appointment once I have had 2 cycles.
Living with PCOS
I am still in the very early stages and trying to adjust and get my head around things, there are obviously sad days where I read hundreds of blogs and forums and wallow in self pity but mostly I am trying to upbeat and understand what this means for me and my family.
When I met my gyno, I was half expecting to be told to lose weight as I had read that on forums, he said that he wouldn’t recommend that as I am perfectly in my BMI and that Christmas was on its way so to enjoy. However I am constantly reading everywhere that a good diet is key so I am trying to see what works for me. Despite me saying multiple times in this post that I am virtually symptomless apart from irregular periods, this may not be true, there are certain personality traits that are symptoms that ring true with me such as exhaustion and mood swings, I also have come to realise as I come more in tune with my body I suffer with quite bad pelvic pain.
I want to learn where PCOS stops and where I start… am I moody or is PCOS a factor? I have picked on this particularly as I never used to be moody but stopped taking my pill and bought my first home at around the same time and I want to know if my new mood swings are because owning a house is damn hard (this is always what I assumed) or because my hormones are no longer regulated by birth control. I want to know if a healthy diet and good exercise will actually enhance my life (obviously I know this is a must for a good life, but you get what I mean).
As there is no definitive, do eat/don’t eat list, lots of people talk about no sugar, no dairy etc but no one actually knows for sure what works so lets document it and see!
What to Expect From this Blog
- Food diaries along with how this affected my mood and cycle
- Probably some emotional posts about my whole process
- Doctors appointments and what to expect
- Posts and articles that I find helpful and other things that I learn
- Hopefully a support system! (gush – how sad do I sound!!)