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I started the pill Levlen for contraception (had never been on anything before, had just started doing the deed with my partner and my other chronic illness has medication that means I CANNOT get pregnant). I started taking this, and was getting extreme pain in between my periods that i had never experienced before (my periods were always willy nilly showing up whenever they wanted or just not bothering, but i never thought about it). I went back to my doctor, and told him, and he wasn't to sure, suggested I was still adjusting, and if i was ok to, just keep giving it a try. So I did until the pain got so bad I ended up at my local emergency department, in 9/10 pain, with no explanation, and no one could work it out. I stayed the night, went home the next morning with nothing more. Had another appointment with the GP and I said I wanted to come off the pill because my mood swings were horrific and the pain, and he agreed. My next period was the worst of my life; I'd always had painful periods but this was next level. After this, halfway through my cycle, we went on a hospital tour (just sounds more fun that way) to my local hospital, still no clue. Went into Adelaide, spent hours in the waiting room, finally got taken back and spent 2ish hours waiting for anyone to see me. When they did, i was labelled drug seeking and it was just anxiety, but here's a referral to a colorectal surgeon. The next night was another hospital in town were endo was suggested, but they couldn't do anything, and sent us home at 4 in the morning. The last night was back to my local hospital were endo was suggested again (by the sweetest doctor), but again they couldn't do anything. A few weeks later we went and saw a womens health GP, who said yep, sounds like endo, I want you on this pill, and within 3-4 days, I went from sad and in pain to playing my beloved hockey again. We used the referral to the colorectal surgeon who did an endoscopy/colonoscopy and found nothing, but he then sent me for an MRI which found my endo and adeno. Got a referal to the gyno and booked my surgery for the 6th of feb 23. Surgery went well and i was diagnosed with stage 2 endo on my ovaries, bladder and pelvic walls. After the surgery though, I had an acute pain crisis where my body just didn't like anything that had been done, and rejected the Merina that had been put in during surgery. I spent 3 weeks total in hospital, and had seizures and all sorts, and have PTSD from it all.
I just celebrated 1 year since my surgery. I was so anxious and I cried a lot, but I got a tattoo of a single line rose to signify just keep going, wrote my emotions on leaves and threw them in the ocean so they're gone forever, and had a nice lunch with my mum. My partner took me out for dinner and we watched the sunset and i cried all over him because it was just what i needed to get through the day.
How long did it take for you to receive a diagnosis? How old were you when symptoms started? How old were you when you received a diagnosis?
I only took 7 months. I was 18 and 5 days (cool birthday present). I never put it together, but I've always had weird periods that just don't show up. I went 4 months without one when I was 14 and went to the doctor, and she made me do a pregnancy test which scared the shit out of me.
What were your initial symptoms? Do you feel they've progressed or gotten better over time? What symptoms do you currently live with?
I think my symptoms are progressing because it's already starting to grow back. I live with intense pelvic and back pain, nausea, fatigue, bloating.
What was your experience with healthcare professionals during the diagnosis process? Were there misdiagnoses or misunderstandings? Did you experience any dismissive attitudes regarding your symptoms?
The day after my lap when I was still asking for pain relief, I just got told to have a shower and you'll feel better. My gyno is also very dismissive of me.
How do your symptoms/pain affect your overall wellbeing? Have you experienced any challenges in communicating your struggles to others?
I have a lot of health anxiety, and I'm so worried about it coming back. I've communicated it to the people that want to listen.
How is your support system? Do you feel supported? Do you feel that your family and friends try to understand and support you?
I have a great support system.
How is the quality of your medical care now? Have you found that medical professionals that you trust? Or are you still searching?
Still trying to find the right people. But my GP is amazing, he's been there through all of it and is just amazing.
Are there areas (relationships, work, hobbies) that have been particularly affected by endo?
I've realized who my real friends are, by the ones that are there for me and stick with me when I'm in pain. I have lost a few people, but I still have my best friend and she is amazing.
What strategies or treatments have been effective in managing your pain? Are there specific activities or lifestyle changes that have helped to alleviate symptoms?
Heat pack and weirdly deep heat.
What strategies or treatments have NOT been effective in managing your pain? Are there specific activities or lifestyle changes that you've made that didn't help to alleviate symptoms?
Ice does nothing. And people keep telling me to use it.
Are there any misconceptions about endometriosis that you've encountered?
Birth control stops the growth. Even my gyno said it, which is part of why I don't trust her (she's also just rude).
