Hithaishi’s endometriosis story

Transcript

My name is Hithaishi. I'm 33 years old and I'm here today to talk about endometriosis. When I was a teenager I think you are told as a woman you will have pain when you have your period and I thought nothing of it. It was only when I had a conversation with some friends and they found out that I had been bleeding for two weeks they asked why are you bleeding for two weeks?

And I still didn't think anything of it. My period has always been very heavy from the moment I started having them. I was on in university when I got to final year uni I thought ... I remember one lecture, I was sitting in the lecture theatre trying to tear the pages out of my notebook just so I wouldn't scream out from the pain that I was having that day and to try to stop myself from crying in the middle of this very crowded lecture theatre.

So that day when I had that kind of experience I thought, no this isn't right. Something needs to change. So I started asking my parents if I could see and doctor and we went and saw a gynaecologist. I don't even think endo was on the radar of the doctors for a long time. I think first it was looking at irritable bowel syndrome and then when they weren't satisfied with that they put me into hospital for a week and did a whole bunch of tests and they came up with abdominal migraine.

I kept going into emergency with intense pain that couldn't be treated. They tried to treat the migraines but that wouldn't get rid of the pelvic pain. And so I kept going into emergency needing medication and that's when you get accused of drug seeking because you are constantly needing high doses of very intense pain relief. So at that point I decided no, I need to take this, I need to take control of this.

And I decided to see a naturopath who was really the only person at that time who was actually listening to me and I made lifestyle changes to my diet and things like that. This was even before the endo was diagnosed. When I was about 23 I went into emergency with another flareup of pain and I was rolled back into the emergency room and I overheard the doctor telling my brother, who's also a doctor that they need to investigate psychological causes.

And my brother said in response, no you need to continue to investigate organic causes. I can assure you sister's not in need of psychological intervention. And then he persisted and he said, what about her relationships? Is she in a safe relationship with her partner? And I overheard all of this. And then finally my brother said, no, you're going down the wrong track. You need to investigate something else.

And they said the only thing we haven't done is a laparoscopy. The doctor said we found spots of endometriosis. And I remember her saying there's a few spots, spot, spot, spot, spot, but I don't think this is endometriosis. This is more stress-related and you're in a very stressful career so you need to change careers in order to control this. And I didn't really understand because I'd heard of endometriosis because of at university.

But I didn't know too much about it so when she said, this doesn't need treatment you take their word for it. So I left that appointment without needing a follow-up, without any follow-up treatment. And unfortunately in that time it gave it a chance to grow and spread and come back. And so three years later I needed another laparoscopy and finally I was officially diagnosed with endometriosis in 2011.

I wasn't aware that there were specialists in endometriosis and so I decided to do my research and found a doctor that I could go and see. Because at that time we were, my husband and I were deciding to start a family. In my experience my endo presented with more gastroenterological symptoms. And I've had friends who have endometriosis that don't have those symptoms. One of my friends, she would have blackouts, she would faint just randomly.

And I think that's an important thing that women need to understand is that if you know one person with endometriosis you know one person with endometriosis because it's such an individualized condition. It will present very differently from case to case. I have a very good, close network of support so my brother, my parents and of course my husband who's been unbelievably supportive.

To have a few people that you can really rely on and to vouch for you and stand up for you is really important. After having my baby the pain that I've experienced so far has been a lot better actually. I think I had to become my own doctor in all of this. I don't have a medical degree but after having a decade of being in and out of hospital and being in and out of doctor's rooms you start to learn a lot about the field.

And so you need to trust your instinct and you need to educate yourself when you do have any kind of chronic condition especially endometriosis because unfortunately a woman's pain isn't always taken seriously.