Number of women suffering from endometriosis on the rise
There's been an increase in Australian women reporting endometriosis symptoms and more patients are being diagnosed at an earlier age. The rate of hospitalisation for endometriosis has almost doubled in the past decade with the biggest increase in those aged 20 and 24.
Transcript
00:00 I was diagnosed at the age of 26 after suffering about 13 years of chronic pelvic pain and
00:10 misdiagnosis. So when I was about 13 my period started and I received some really serious
00:18 and debilitating symptoms from back pain to pelvic pain and a lot of stomach upsets as
00:23 well. So my mum took me to my GP and the GP said this is just a normal part of becoming
00:30 a woman and growing up. And I didn't know anything else. So we took that at face value
00:36 and through my teens the pain got worse. However, I was put on the pill and that did mask the
00:43 symptoms until I was about in my early 20s when my symptoms then ramped up further and
00:51 I started getting really severe back pain and I was put on different medications and
00:59 diagnosed with UTIs constantly until I received my diagnosis at the age of 26.
01:07 So Alethia, is your case fairly typical do you think in that it took years for you to
01:12 get a correct diagnosis?
01:13 Yeah, unfortunately it is very typical. Endometriosis is a very individual disease. However, it
01:25 does affect women very similarly in the fact that we get misdiagnosis constantly and the
01:34 years between beginning symptoms and receiving a diagnosis can be upwards of 20 years sometimes.
01:42 Why isn't it recognised more by the medical profession since so many people have it?
01:48 That is a question that struggles to be answered but I think it's to do with the fact that
01:54 this is a woman's condition and those who identify as gender diverse and we get these
02:03 periods monthly and it's just part of being a woman and I've heard that from medical professions
02:11 right through that this is just part of being a woman and until more of us speak up about
02:17 the condition and speak about our experiences, the medical professions really need to understand
02:25 that this does affect more than just the reproductive organs.
02:30 And how has it affected you, Alethia, both in your work and also in your personal life?
02:35 Yeah, it's been a struggle. It's definitely impacted my working life. As I said, I was
02:43 put on the pill when I was a teenager and into my early 20s when I was at university
02:48 but when I started out my career, I was impacted by these really incredibly painful symptoms
02:58 and it affects relationships as well. Fortunately, I have a really supportive partner and now
03:05 fiance who's been with me through that whole diagnosis and up until now and having a family
03:13 that really supports me as well is incredibly important but I know lots of women and girls
03:19 are not that lucky and they feel extremely isolated at work and at school and in study
03:27 as well.
03:28 So as the Endometriosis Australia Ambassador in Australia, Alethia, what's your advice
03:34 to young people who are maybe at the early stages of a diagnosis or who are sick but
03:39 can't get a diagnosis?
03:42 That's a really good question. My advice would be just keep pushing. You know your body better
03:48 than anybody else and you know how you feel and you know if something is not right. My
03:55 advice would be to go to your GP and ask for a referral to a gynaecologist who specialises
04:02 in endometriosis. There is a list on the Endometriosis Australia website. You can find it there.
04:10 You can ask for a referral to a specialist in your area. There are also lots of peer
04:18 groups and support groups on social media. You can also connect with people on there
04:25 to find you know that solidarity that's suffering this condition. You aren't alone.
04:32 And finally, what is treatment like? Is there a standard treatment?
04:36 So what we say the gold standard treatment is excision surgery. So that's where a surgeon
04:43 goes in who specialises in endometriosis, goes in and finds the disease and cuts it
04:48 out from the roots and that gives the individual the best chance of the disease not growing
04:57 back. For myself, I've had four of those surgeries since 2015. The disease does grow back for
05:05 me but if you can find that specialist and get that excision surgery, you have the best
05:12 chance of it not reoccurring.
05:14 [BLANK_AUDIO]