I am super excited to be sharing my good friend, Alex’s story tonight. Alex and I have known each other for a long time now. We went to the same school and Alex was my maid of honour when I got married. It has been a huge blessing to have her journey through this all with me. It’s so nice having someone there to share all the fears and pain with. Anyway, here’s her story.
Tell me about yourself: My name is Alex, I’m 23. I’m a sports and exercise science student, studying at university, training to be a pilates instructor, kind of a big deal, haha! I’m in a long term relationship, been dating my boyfriend for 2 and a half years, coming up to 3 years soonish.
When and why did you think something wasn’t right? Well, I have had bad period pain pretty much since I started getting my period. But it progressively got worse, kind of as the years went by. So it was actually my mum who was the one who suspected endometriosis, she saw something on like current affair or something. She never had bad period pain as a kid, so always thought it was abnormal that mine was quite bad. She was really like, “it’s not right, it’s not normal.” I’m not sure why but my symptoms just got worse and worse, and she’s the one who pushed for the diagnosis in the first place.
Was there anything else other than severe period pain?
I was getting pain when I ran, really sharp pain. I was really into running, but every time I ran, I would be doubled over in pain and have to call mum and tell her to come pick me up. I was quite athletic at the time so it was abnormal.
How long did it take you to get diagnosed and what were you diagnosed with? So from the first moment we went to the doctor about it, it probably took around 10 doctors and specialist visits. It probably took a year and a half but that was with mum pushing hard for a diagnosis from the get go. I was diagnosed with endometriosis. So, yeah, probably around a year and a half. The first doctor we went to was really quick to dismiss it, but mum was like, “no, it’s not.” He basically straight away said it was just period pain but mum was like, “no, it’s not period pain and it’s not normal.” She was the one who was like, “what about endometriosis, could it be that?” He said, ‘could be, but why do you need to know,’ sort of thing.
Do you think that it has had an impact on your past, present and future? I mean at the time, it was definitely big news. I think I was relieved when I got diagnosed because it confirmed my pain. You know, it wasn’t just me overreacting, or having a low pain threshold, it was me having something that was significant enough to affect my life. It made me be able to understand a lot of things that were happening in terms of my diagnosis and my symptoms, like the hot flushes and the vomiting…all of that. So initially, I think I was relieved but then it turned to dread, like okay…. This is actually something that I am going to have to deal with forever and I have to plan for that. I was overwhelmed, you know, I was 18 and single and everyone was telling me it was going to affect my fertility. But you know, I think my coping strategy has just become to not give it power, not acknowledging it. Yes, there are times I think about it and that’s okay, but to not give it power over my decisions. That’s what I try to do.
Future wise, I mean, I don’t think, at the moment, it effects my future, but that’s really easy to say.
You’ve touched on it already, but do you think it has an impact on your mental health?
Oh definitely. It definitely has an impact on that. I feel like for a while I was worried the decisions I was making were because of ‘it,’ like I want to be with my boyfriend now because of ‘it’ or I want to have a career now, so that when I want to have kids in three years…. you know? I think that was messing with me because I didn’t really know what I wanted to do and what I only wanted to do because I want kids eventually. But, I kind of learnt to deal with that and decided that I would live the life that I want now and if I can’t have kids later, that’s fine. If I pushed it now, there’s no guarantee anyway.
You’ve already mentioned the coping strategy of not giving it any power, but do you have any other coping strategies?
I think it is a bit too individualistic for that. I feel like I have tried everything but nothing long enough for it to actually do anything. I’ve gone off the pill, on the pill, became immune to the pill, haha! My coping strategy to a degree is full blown denial. Like it’s not that bad and then I get my period and everything is confirmed and it really is that bad.
Do you have anything you want to say to anyone going through this?
Stick to what you know about your body. We know our bodies better than we think we do. We know when something feels right and when something feels wrong. It’s okay to ask for another opinion. Honestly if my mum hadn’t pushed for the diagnosis so hard, I wouldn’t have been diagnosed. I know I probably wouldn’t have pushed that hard but now it’s given me the confidence to actually say, “no, I know my body and I know myself enough to chase this issue.” So my advice would be to trust yourself and trust your body. Also know the facts.
If you know anyone who wants to share their story, don’t hesitate to contact me by clicking here