Warning: This post contains themes of women’s health, specifically Polycystic Ovarian Syndrome, fertility and Diabetes. If this upsets you or make you uncomfortable, please do not read on, as that is not my intention. I am not a medical expert and do not have professional knowledge in these fields, this is simply my own experiences and my point of view, if you have health concerns please contact your GP.
Last week, I asked my IG community if they were interested in hearing my story and experiences dealing with PCOS and Type 2 Diabetes. I was met with an over whelming response to do this blog post as well as many private messages from women reaching out about their own experiences or asking for advice. As mentioned above, this is only my story; my experiences, how my body works and the struggle I have been though.
Polycystic ovary syndrome (or – PCOS) is a complex hormonal condition. ‘Polycystic’ literally translates as ‘many cysts’. Women with PCOS commonly have high levels of insulin, or male hormones known as ‘androgens’, or both. The cause of this is unclear, but insulin resistance is thought to be the key problem driving this syndrome.
PCOS is relatively common and affects 12 to 18 per cent of women of reproductive age (between late adolescence and menopause). Almost 70% of these cases remain undiagnosed. To be diagnosed with PCOS, women need to have polycystic ovaries and be displaying some of the most common symptoms: irregular menstrual cycles , amenorrhoea (no periods), excessive facial or body hair growth (or both), acne, scalp hair loss, reduced fertility (difficulty in becoming pregnant), obesity, sleep apnoea or mood changes – including anxiety and depression..
In January 2016, I visited to doctor with concerns of my missing period, at 23 and having been on the same contraceptive (the pill) since I was 16 this missing period had me slightly concerned (yes, I originally went to the doctors wondering if I was pregnant). After confirming that a) my period had been absent for at least 3 months and b) I was not with child and c) I had put on a substantial amount of weigh in the last 6 months (around 20kgs) my GP took me through a list of questions and discussion that I can now see revolved around the symptoms for PCOS.
Had I been struggling with my weight? Did I have excessive hair growth? Hair loss? Acne? How were my sleeping patterns? Was I moody? My strongest responses were to weight, hair growth, and sleeping patterns (maybe I was moody, but I just put that down to my no nonsense attitude and intolerance for people’s bullshit). From this initial appointment I had months of doctors appointments, specialists appointments, x-rays, ultrasounds, blood tests, more poking and prodding then I have ever experienced before. And by June, after numerous visits to an Endocrinologist it was confirmed that I did infact have PCOS and that this condition needed to be monitored and supported with medication. Two weeks later I was diagnosed with Type 2 Diabetes.
If I am honest, the diabetes diagnosis hit me harder than the PCOS initially. I specifically remember getting an email from my Endocrinologist at about 10.30pm at night confirming that I had diabetes. Boom. Diabetes. I was 23. Doctors assured me that I had Diabetes due to my PCOS and the effect that condition had on my insulin, that I was only ‘just’ diabetic, and that it was a easily manageable condition in my case.
I’ll admit it was nice to finally have answers to a lot of things. Although this wasn’t the end of the poking and prodding, particularity because of my Diabetes diagnosis there were more specialists to see and groups to attend. I went to a group on how to manage my diabetes in the first month, once a week, and I remember sitting there every week surrounded by people at least 40 years older than me just thinking “I shouldn’t be here”. I also started seeing a podiatrist (foot specialist), which then resulted in me seeing a HEART specialist, as we discovered the blood flow in my legs wasn’t ideal. On top of this I was seeing a Diabetes Educator, an Exercise Physiologist and a Dietitian. So by August, I was taking Metformin (for diabetes and PCOS managment) and Crestor (to open up my veins and promote blood flow). Due to the concerns about my blood flow it was recommended I go off the pill (to avoid encouraging blood clots), and find another type of contraceptive. Under the guidance of my GP & Endo specialist (Note: I do not have Endometriosis but PCOS can effect fertility in a similar way) I had day surgery to inset the Mirena into my uterus to manage my hormones and use as a contraception.
The Mirena is quite a common form of contraception and you only have to switch it over every three years, winning right?! Eh. I am not so convinced. While it didn’t seem to cause me any extra trouble with my cycle (still no period since 2015), it did give me a huge bout of acne. Being some one who had never struggled with acne before (beside the random teenage pimple), this is something I really struggled with, like ‘didn’t want to leave the house’ struggled with. I have gone from some one with very clear porcelain skin, to someone with red angry skin across my entire chin, lower cheeks and jawline, and it has scared that way. Unfortunately the type of breakouts I have had don’t seem to be innocent teenage pimples, rather angry hard boulders that sit under the skins surface and scab all across my face. I’m not putting this reaction 100% down to my Mirena, but also, I am. (More on this later).
Oof, are you still with me?
If you are, the next place I went was a Natroupath. There is a lot of conflicting information online with just about everything, and of course this was no different, but I personally am I believer in natural remedies coupled with medicinal so I wanted to give it a try. I went through the process with a Natroupath of trying to re-balance my system and improve my gut health for about 3 months, and I will admit many of the herbs I was drinking and vitamins I was taking did seem to be improving the symptoms like hair loss and my sleeping habits and energy levels. However, at one stage I was taking about 40 tablets a day (and this was quite a costly experience). This just wasn’t a solution for me. I couldn’t keep taking that many tablets and believing that they were all improving me THAT much, so I finished up with the Natroupath in hopes of seeing both how and if it had helped my body by comparison. Granted now that I am taking no herbal remedies I have been able to notice that a few things definitely did help (particularly with the sleep and energy levels), so I am in the process of looking into those again on their own.
In April of this year I took off on a 2 month holiday around Europe (which was amaze by the way). How is that relevant to my story, you may ask? Wellll. Remember the weight that I stacked on earlier? Yeah. Well it hadn’t been budging. In fact, working with a Dietician and Exercise Physiologist still hadn’t helped it budge. There had actually been times when I had put on MORE weight. Women with PCOS typically find it very easy to put on weight, and very hard to lose it (see earlier about my reference to insulin), and this had definitely been a massive struggle for me. The only thing, that I had found successful in trying lots of different diets and meal plans (under my Dietitians guidance), was meal replacement shakes. 3 shakes a day, equal to about 600 – 800 calories a day, was the ONLY thing my body was responding to in my weight loss effort. And if you have ever done any research on nutrition, that’s just a tad (about 1000) calories under the recommended intake. (Please note I am not in any way condoning this method for weight loss, I myself only do it for a week at a time under the guidance of a qualified dietitian.) But, I digress, the other thing that helps me lose weight… Europe?!
Yep, you read that right, I went to Europe for 9 weeks and came back 9 kilos lighter. Now trust me, if I could cruise through Europe drinking every second night, eating pasta and pizza till I exploded and having gelato every day for the rest of my life I definitely would. But alas, that is not my life, and those nine kilos have crept back on (plus 3, sigh). But really, the major change in my lifestyle when I travel is my activity level, I did a lot of walking the streets of beautiful European cities and climbing coastal Italian mountains, and I find this is the biggest thing that helps me lose weight. Exercise all day = weightloss… I’m working on it.
The other difference in this time was that I was very poor at taking my medication, and when I returned, my blood work was surprisingly promising (I have a diabetic test kit at home that I use for emergencies if I am feeling unwell, and I get blood tests about every 3 months at the moment). Because of that it was agreed that I could stop taking my doctor prescribed medication and I have been off all forms of medication for 4 months and just had my Mirena removed yesterday.
The next step for me is to go back to my specialist and check my blood again to see how my body has reacted to being off medication. The biggest change I have seen in getting rid of the medication is that my hair has started falling out A LOT. Luckily there is still some left on my head for now and this will be something I talk through with my specialist next visit. I am now also (with the Mirena out) putting no hormones into my body, which is something I would like to continue in hopes that my body will be able to balance itself out on it’s own after being on contraceptive for so long (since I was 16) and encourage fertility (in the future, calm down Mum). For those curious, because PCOS can effect your fertility due to it’s involvement in the menstrual cycle, I do very much want a family, and it was very scary (probably one of the scariest parts) to think that this might be effected by this condition. I am currently looking into more traditional therapies like acupuncture and Chinese herbs as this is another route that has been recommended to me and can be particularly useful in assisting fertility and preparing the body to reset itself.
My weight is a constant struggle for me and I am constantly battling my own demons to try and over come that and make progress. For me, this blog is a big part of that journey, of showing that I’m not of less value because of my size or struggles. I hope that to anyone going through a similar situation, this story helps you feel just a little bit less alone. Again, this is just my experience, this is what I have done and the results I have had, every single person is different and you may find something that made me worse makes you better! I am very lucky that I have found a wonderful team in my doctor, endocrinologist and dietitian (although I have stopped seeing her as frequently) and am happy to share these with anyone who is wondering. In any case I hope that this little insight into someone else’s condition can help you handle yours, and if this blog has sparked any questions in you, always feel free to get in contact with me and I will help in any way I can.