Members' Monday - PCOS, Anemia & Struggle for help.

Every Monday is a chance for us to share one of our reader's health story. Today is all about one reader's story with Anemia, PCOS and her journey for diagnosis. Her stressful journey to get a diagnosis and to be listened to by the Doctors, actually resulted in her life changing in a way she wasn't expecting. Reading her story, really highlights just how much we need proper women's health education, for women and for the medical industry. We will keep striving for change!

My periods had never been regular since I started them. I would get them months apart but we didn’t learn enough about it at school for me to not know that it wasn’t normal or that I shouldn’t have been in as much pain as I was, I knew they were supposed to be uncomfortable so I just accepted it. By the time I was 16 I was only getting my periods a couple times a year but when I did get them, the pain was so bad and I would get really dizzy and would usually have to avoid leaving the house whilst I was bleeding, because I didn’t want to risk passing out away from home or on my own. I went to the doctors to discuss birth control and had a conversation about my period, how irregular they were and how they affected me physically. This started the process of me being diagnosed with anemia and PCOS. Once diagnosed, my doctor at the time essentially just had the attitude that I just had to deal with it and it happens, they could give me some iron tablets for the anemia and that was pretty much it. No surprise that doctor was male. 

So I just went on with my life, then when I was 17, I got really sick and was having a lot of abdominal pain, my sister a year earlier had been having the same issues and turned out she had gallstones, there is a genetic predisposition to it in the women in my family; side note my sister almost died because doctors didn’t believe that there was anything wrong and that it was probably just bad cramps. Anyway, as my sister had just had surgery for gallstones not too long ago, I was pretty sure I knew that it was the same issue, they ran blood and urine tests to rule out pregnancy or any other factors that could cause any issues. After 3 or 4 trips to the GP they finally accepted that it was probably down to gallstones, so they started treating me for gallstones.

Throughout this whole ordeal I hadn't gotten my period, but I hadn't thought anything of it because I wasn't regular anyway and in total I ended having 6 pregnancy tests done through the GP, a mix of blood and urine ones. So, I finished a round of medication they had given me and they wanted to do another set of bloods and another urine test, just to do the usual rule out tests and check everything was still as normal, but I got a call the day after from the GP saying there had been an issue with the urine sample. I could either come in and do another or just take a test at home if I was worried about it. I wasn’t worried because I'd had 6 in the past few months and some of them were blood ones, if it was going to show up it would have. I bought a home one anyway just so I could tick the box off at the next appt and it came back positive.

At this point, I had turned 18 and was about a month or so away from packing up and moving to London for University, so it was a big shock. I went to the doctor and they sent me for a scan and it turned out I was 5 / 6 months pregnant. I’ve spoken to my doctors about this and they can’t really give me an answer as to why it didn’t show up on the previous tests but they can only guess that the issue with my gallstones had masked it, I did end up having surgery to remove my gallbladder three weeks after my son was born. 

So after my son was born, my periods weirdly became super regular, every four weeks like clock work. The pain was even worse than before and my anemia got worse, so I had to have a stronger dose of iron tablets and I switched to a female doctor to start discussing ways to help with managing it. The main thing that she suggested was trying hormonal birth control. I tried the pill but it made me feel really nauseous and just didn’t agree with my body, so my doctor suggested the implant to see if that was a better fit for me.

I had the implant fitted and it caused me to gain a lot of weight in a really small amount of time and my periods went all over the place. They were still painful but weren’t regular anymore and would last longer, so I went back to the Doctors and my hormone levels were all over the place but they said to give it more time to let my body adjust, the issues just got worse. After a year, I had it removed and then the doctors told me to give it time to adjust to not having it. It's been two years since I had it removed and in that time I have had 3 periods. I’ve been seeing my doctor about it for the past year now and she just describes it as my body just not reacting well to hormonal birth control, there isn’t enough research into women’s health for them to understand why it can affect some women so badly. I have blood tests every 8 weeks to monitor my hormone levels and to try to figure out what the next step is. The only thing I really know is that I cannot have hormonal birth control. 

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