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Real Stories: Stage 4 Endometriosis & Adenomyosis with Hannah

READING TIME

5 min

1. Let’s start with the classic: What’s your worst, funniest, or most awkward period story?

My “worst” period story..... Honestly how could there be just one!! Every month feels like the worst. My husband calls it the “crime scene” and he’s not wrong lol. Every time I change a tampon, the toilet looks like it could be submitted as evidence hahahaha, It’s messy & exhausting!

2. What have you demystified about your female body that you wish you knew when you were younger? 

I used to think two things about my body that turned out to be completely wrong 1. Periods are supposed to hurt & you just push through! 2. Women get pregnant just like flicking a switch.

3. Have you been diagnosed with a women’s health condition 

Yes: Stage 4 Endometriosis, Adenomyosis, and secondary infertility.

In my twenties is where my real health story began. Every month around my period I’d get this sharp weird pain in the right-hand side of my back. My periods became heavier and completely unruly, and weird pains started cropping up everywhere! 

For years, I brushed it off partly because I had a crippling fear of needles. Any time I saw a GP and they ordered blood tests, I just didn’t go. It wasn’t until after I had my first child that I was finally okay with the idea of blood tests and decided to really push for answers.

But this was during Covid, which meant phone consults with doctors who didn’t know my history. I was told it sounded like IBS, prescribed Voltaren, and told to go on the pill (even after saying I was trying to get pregnant with my second child and that the pill made me depressed.) It took three more appointments before I finally convinced a GP to refer me to the gynaecologist I wanted. By then, I felt like such a nuisance, constantly advocating for myself.

Once I got to the gynaecologist thankfully covered by private health insurance it was like night and day. He took me seriously immediately, could tell on the internal scan he did that I had an endometrioma and adhesions, and booked me in for surgery on the spot & just two months later, I was in theatre.

The surgery turned out to be worse than expected. I woke up with three diagnoses: Stage 4 Endometriosis, Adenomyosis, and secondary infertility. That meant IVF became our next step. (I've shared my story on my Instagram account second_time_struggles if you're interested in this!) 

4. What was your diagnosis experience like?

Frustrating with the GP, being told my symptoms were not typical of endo and that it was hard to be diagnosed so was just given things to mask the pain rather than get the the root cause. But as I said above night & day with the gynaecologist! 

5. How has your condition changed your daily life?

When I was good post surgery, I was good. But as time passed, symptoms crept back in. Right now, I’m in the thick of it again. Day 1 and 2 of my period, I avoid leaving the house, it’s like visiting the Huka Falls lol and the pain can make me feel sick. On top of that, I’ve developed iron deficiency anaemia from losing so much blood each month. Five weeks ago, I had an iron infusion and before that was figured out, the fatigue, heart palpitations, and brain fog were on another level.

6. What symptoms made you think something wasn’t right with your body?

Looking back, the biggest red flag was that back pain! And like I said, My GP said it wasn’t typical for endo, so that doubt almost had me believing maybe it was just IBS or food-related symptoms I was experiencing.

7. Have you tried anything that has helped you manage your symptoms?

CBD oil, plenty of sleep, Panadol, Voltaren, magnesium, wheatbags, Nurofen. They don’t “fix” it but they help me get through.

8. What’s one thing you wish more people understood about women’s health?

One thing I wish more people understood about women’s health? That “bad periods” aren’t just something you put up with. Pain that stops you living your life is not normal, and dismissing women’s symptoms delays diagnoses that can change everything!!!!!!

9. If you could tell younger you one thing about your body, what would it be?

If I could tell my younger self one thing about her body, it would be: listen to it, even when other people try to talk you out of what you know deep down. And for the love of god, don’t let fear of a needles stop you from getting answers!!!!

10. When your body feels hard to live in, how do you take care of yourself?

When my body feels hard to live in, I go back to basics: I rest without guilt (hard when you have 2 children) heat my wheatbag until it’s smouldering, and remind myself that pain is temporary, I’ve been through worse days, and I’ve always made it out the other side. plus having a super supportive hubby who just gets it helps like he'll never know.

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We’d love to stay connected

We’d love to stay connected