Natalie’s story
“It makes me feel very restricted having to organise things like this as it’s almost a quarter of the month where I try to avoid planning things.”
“I thought it was normal”
Natalie has been struggling with life-altering periods since her early twenties. It’s been an experience that has got worse over time. “I didn’t know it was a period issue, at least not to begin with, because it didn’t start as badly as it is now. Now I’m at a point where I basically can’t do anything for four days a month. When I was a teenager, they weren’t as bad. Looking back on it, they were heavy but I didn’t really know what was heavy and what was light. It’s not like you see other people’s periods and it wasn’t really talked about, so I just didn’t know. I remember my mum would give me the specific nighttime products for heavy flow and I remember leaking a couple of times in school, but I thought that was normal. My mum also had slightly heavier periods, so looking back on it, she may have made me think it was normal because she probably thought it was.
I wouldn’t say that they massively disrupted my life like they do now, I wouldn’t be stuck at home for days at a time. But when I was at university, I got moments of dizziness, not always on my period, just randomly, so I got a blood test that showed low iron and low haemoglobin levels. I got a letter saying my iron was low and was given a prescription for iron tablets. At that point, there was no discussion about why my iron would be low. You tend to think it must be diet related, I know now that it’s usually not, but at the time that’s what I thought.”
A trip to A&E
Natalie’s symptoms started to get significantly worse in her mid-twenties. “My periods were very painful for the first few days, and I always had to wear bigger products, but I remember all of a sudden feeling like I couldn’t stand up for very long periods of time, and my heart rate would suddenly get really fast. I wouldn’t even be doing anything, just sitting at my laptop, and I’d suddenly get an increased heart rate. You obviously tend to think the worst with something like that so I phoned the GP and he said I had to go to A&E to get checked, as I couldn’t afford to wait for weeks for test results with such symptoms.”
It was the hottest day of the year and Natalie was there for eight hours. During this time, she was given a blood test and an ECG which showed no immediate risk of heart attack, but no other investigations. “They looked at me like I’m young and healthy so why would I think I had a heart problem? The first doctor who checked me in did refer me to gynaecology but I waited for seven hours to see the consultant and when I did she said ‘oh you’re not actually bleeding right now, I thought this was an emergency’ and she sent me back into A&E. After eight hours I left. I had the blood-test to check my iron levels and no one was interested in looking at what else could be causing my symptoms. The GP looked at the blood test results the next day and my haemoglobin and ferritin were quite low so he wanted me to go back on the iron tablets.”
“I just carried on”
At this point, there still wasn’t any real investigation into whether Natalie’s symptoms could be caused by a gynaecological problem. “My GP did ask about my periods, and I said they were worse than when I was a teenager, but my hormone levels from the blood test looked good, so we didn’t discuss a scan or anything. He did say that I could go on the pill at this point. I didn’t really understand why I would do that if my hormones seemed fine and he said it was just to ‘fine tune’ them. I knew that the pill had its own side effects, and I didn’t want to risk introducing any more issues, so I took the iron, and I did feel a bit better.”
Natalie took iron for a couple of months, but her symptoms, such as dizziness and the rapid heart rate did rear up again during this time. “The GP said I could take the iron for longer, but we wanted to avoid taking it forever, and at this point I really wanted to just get to the root of the problem, especially as symptoms were still reappearing. I was referred to a cardiologist to investigate the heart palpitations, and I had to wear a heart monitor for two weeks. The cardiologist reviewed my results and could see that my heart rate was fast, but couldn’t find a reason for it, so this is when we had a conversation about being stressed. I remember saying that I’ve been stressed before, and I know how it usually shows up in my body, and this didn’t feel the same. It was frustrating to still have no answers and to feel like it was being put down to stress.”
“I still have so many questions”
Eventually Natalie went back to the GP and specifically asked to see a gynaecologist. By then, it wasn’t only the heart palpitations having a negative effect on her life, she was also experiencing heavier bleeding and increasingly painful periods. “I was staying in for three days each month, experiencing intense pain and tiredness, which I knew couldn’t be normal. I know everyone suffers with their period at least a little bit, but I knew that this wasn’t right, and I really wanted to do something about it. Even though my periods were regular, I had reached a point where I had to plan my life around them. Like I wouldn’t make any plans for at least five days each month, and planning a holiday abroad would have to be a week, nowhere near my period. You start to question yourself, like ‘does every girl do this?’ I didn’t know.”
Natalie saw the gynaecologist in a very rushed appointment, where she had a small polyp removed and was sent for an ultrasound. “I remember the people doing the scan saying that there was a possibility I had endometriosis and adenomyosis. I hadn’t really heard of those conditions before but they said that everything would be explained in my follow-up appointment with the consultant. I tried to not think the worst but I was quite worried. The follow-up was a couple of weeks later. She was running really late again and had tried to call me to rearrange our appointment to a phone call, but I’d missed it because I was driving. I felt like she was annoyed with me for being there in person when she wanted to change it to a call, but we rushed through the in-person appointment anyway. She explained that I possibly had endometriosis but that it wasn’t too advanced yet. She said that she was going to give me three treatment options (the pill, a copper IUD or tranexamic acid) and then discharge me, and if it got worse in the future I could ask my GP for another referral. Ideally of course I’d have wanted to be followed up with over time, not just discharged immediately.”
Natalie felt confused about her options, which were exacerbated by conflicting advice from her GP and consultant. This left her feeling worried and unsure about what treatment might work for her. “I’m the type of person who needs to understand how things work and I’m obviously curious about what I could be putting in my body. I didn’t feel like the different options were properly explained to me, but I did try the tranexamic acid for a period. It did temporarily help to reduce my bleeding, but it didn’t feel like a long term solution, and neither my GP nor the consultant presented it as one. I knew it wasn’t a cure for my condition, and I still had so many questions.”
After these investigations and appointments, Natalie still hasn’t been given a clear diagnosis. She has been told in person that she potentially has endometriosis, but her NHS scan notes refer to adenomyosis, which she thinks is more in line with her own understanding of her symptoms. “I just don’t think the condition has been explained to me fully. It’s supposed to be a progressive condition, but I have no information about how to stop it progressing or slow it down.”
“It makes me feel very restricted”
Natalie has been left managing her life around her periods in a way that causes her limitations and anxiety. “It makes me feel very restricted having to organise things like this as it’s almost a quarter of the month where I try to avoid planning things. I also do feel like I’m inconveniencing people who I make plans with sometimes, and if they don’t experience similar issues, I feel like they don’t completely understand or they may think that I’m just extra sensitive to pain and can’t ‘stick it out’ like others do. So I do feel quite paranoid that people may think I’m oversensitive. Luckily, my closest friend and my mum are understanding. Sometimes it is awkward explaining to male family members why you may not be able to attend something though! And if I do attend something, there’s always the anxiety about leaking or that I’ll be quiet or low energy if I’m in pain”.
“As always, you get busy with life and time passes so I’m still arranging my life around my periods. I’ve looked at more natural solutions like diet and generally living a healthy lifestyle but I would say that it’s getting progressively worse. I feel like I’ve only been offered a plaster for symptoms rather than trying to get to the root of the problem. I also want to understand the science behind my options more. Why is it always ‘just take the pill?’”.
Now, Natalie is looking into supplements and other alternative solutions, and after visiting her GP again, she has now been referred to a specialist endometriosis clinic.
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