Long Road to Diagnosis: Aroha's Story
By Aroha Liebhart
March is Endometriosis Awareness Month, and at QENDO we are #explainingendo by sharing your stories, practical articles for your endo toolkit, and inspiring women who will empower you to live your best life, even with endo. Aroha shares her long road to diagnosis in the hopes of empowering others to speak up about their own experiences.
“Sixteen days, sixteen days, OMG, I haven’t had my period in sixteen days!”
Those words are my clearest memory of being a teenage girl going through puberty. You see, aside from the debilitating pain, and the heavy flow of it all, the thing that affected me most was the fact I would usually have no more than a dozen days between periods, with bleeds that would usually go on for over a week! However, that day, dancing down the hallways at my boarding school, gloating that I had had a sixteen day reprieve, I certainly jinxed myself. The very next day I started a period, one that didn’t stop for over a month.
For the next thirteen years I battled the ups and downs of being a woman. My pain was normalised by society, my bleeding was deemed ‘not that bad.’ I got to a point where I thought, maybe they are right, maybe this is all in my head. I tried almost every different pill out there, I used Depo-Provera, I tried Implanon, a Mirena, natural therapies, the list goes on and nothing helped, anything that did only offered temporary reprieve.
It ultimately went to shit when I was 18 or 19 and I had my first laparoscopy after bleeding for almost two months straight on my third round of Depo-Provera. The surgery came up blank, but still my doctor at the time told me he thought I definitely had Endometriosis, and if I wanted to have children, I should do it soon. He was obviously completely ignoring the fact I came to him in a military uniform. They inserted a Mirena and I was sent on my way. Two weeks later I found myself in the Emergency Room on a public holiday, with my dad, I was humiliated out of my mind because my body had expelled it.
Following that I started trying all sorts of OCPs again and the hormone rollercoaster continued. I sold everything I owned and I moved to the United Kingdom, but, within a year, my health was back to being hellish. Sex would bring on bleeds that made me mortified, and my partner’s rooms would look like murder scenes as I would rock myself in the bottom of a shower until the bleeding would stop. I needed help and I needed it fast, but nobody was taking me seriously. I moved back to Brisbane and I started working HARD to find a solution. Turns out I had a condition called Cervical Ectropion and I had CIN III cells which too needed to be removed. So, I had another surgery. Still, no signs of Endometriosis or otherwise, but they continued to tell me “it really must be endo.”
Fast forward five years, the ups and downs ongoing, I’m in the shower having sex with a new partner and bam! The pain sears through me, the bleeding starts, no, no, no, not this, not again! I ended up in agony on the bathroom floor, but I convinced him I was okay. I went to the gym the next day and continue to prep for my weightlifting competition. I flew home to Rockhampton. I played a game of touch football and continued to train for three days. Day four saw me crying in pain and I was still only able to wear yoga pants over the bloat. My Coach, my boss and my friends all begged me to go to hospital. In Emergency they ran all the tests, they made me nil by mouth, my phone died and I couldn’t tell anyone what was going on. I was 25, alone and scared. “It’s an Ectopic Pregnancy or a bleed and you’re still bleeding internally, we need to operate and we need you to sign this form giving permission to take an ovary out if we need to. You should really contact someone.” My world crashed. My family got through to me, my wonderful partner flew to be by my side. Turns out I had a 47mm cyst that had ruptured and around half a litre of blood in my lower abdomen, but still no sign of endometriosis – I did get to keep both ovaries though!
Fast forward another twelve months and it has been the biggest year of my life. My health disintegrated following that surgery, but this led to people FINALLY taking me seriously and now I have an amazing team of professionals by my side. I was given a scan following that surgery and was told that I had suspected Adenomyosis, my Gynaecologist convinced me to try the Mirena again and it has finally settled down. I have been diagnosed with PCOS and a chronic pain condition called Pudendal Neuralgia. I am juggling to manage my conditions with anti-depressants, daily pain medications, regular Exercise Physiology and Pelvic Floor Physiotherapy, massage, heat, a TENS machine, nerve pain anti-depressants and nerve blockers. My next step is to start to work with a Naturopath and return to my Psychologist, but I know, even though it costs my family a large majority of their financial resources, I will come out on top.
The journey has been long, and it has sure been bumpy, but I have finally got answers, and the justification I needed in order to prove it wasn’t all just in my head, that I wasn’t a wimp experiencing what every other woman does and just not handling it well. It’s cost me years of my life, relationships, lovers, thousands of dollars, but I am still here, smiling and fighting hard. I learn more about my conditions and the plight of women every day and I am bringing some beautiful people into my orbit with this energy. So, it might be my biggest challenge, but I truly believe, my health will prove to be my biggest saviour too. The one big lesson I have taken away is; if you are hurting, don’t stop fighting, fight to be heard, fight to be seen, you deserve your health!
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