Hey I’m Hannah, I’m 28 years old & my diagnosis of endometriosis took 16 long years. I was age 8 when I was hospitalized for the first time, my appendix randomly burst & I’m now told by my specialist that it was very likely endo that chewed through it - I’m not surprised! I was in
pain for days & not believed, then finally admitted and told if I hadn’t come in I’d have been dead within 48 hours as the bile was starting to shut down my organs. This was just the start of my pain being passed off as ‘nothing’ & the moment I lost all faith in the medical system.
I spent 2 weeks in hospital & from then on was in and out of hospital, A&E, doctors and specialists constantly for severe abdominal pain, heavy periods, migraines, debilitating bladder pain and a plethora of other related symptoms. I finally got an interstitial cystitis diagnosis via urology in 2017, but at the time was still far down the wait list for a diagnostic laparoscopy. My quality of life was awful, struggling to work let alone hold a relationship or friendships because I was so unwell all the time.
In 2019, 3 years after my referral, I finally got a laparoscopy booking & they found a large ovarian cyst + deep infiltrating stage 3 endo. I unfortunately got a surgeon who wasn’t a specialist & did a poor job, so 3 months post op was in excruciating pain again. At the time I was confused and upset as I didn’t know enough to know that under-knowledged surgeons like this even existed. I tried everything under the sun over the next 2 years to try & keep pain at bay - diet, meds, physio, exercise, supplements and more.
In august last year I was ready to give up, I was at my wits end & ended up finally being able to have another surgery which I was privileged to have under insurance this time, with one of the top surgeons in NZ. He found severe stage 4 deep infiltrating endo, a large hernia in my belly button as a result, a large cyst, and a lot more mess, after being told by so many doctors ‘it can’t possibly have grown back!’ I’m now 6 months post op & recovering well but it has sadly not been the be all end all of my pain & I’m reminded that while a good surgery helps, it is not a quick fix. My left ovary is already immobile & I already have a significant endometrioma cyst on my right ovary. I still have to work hard every day of my life to stay on top of this aggressive illness in every way & some days it still absolute crushes me.
My story and very long journey of 16 years to diagnosis is why it’s so important to me to advocate for this illness as the time it takes to be diagnosed is just not acceptable and the lack of research on how to live with this is appalling at best.
I just want to say if you’re going through this long journey to diagnosis; hang in there, I believe you! Your pain is real. And you’ve got this. You’re stronger than you think. ❤️