Yahoo Lifestyle 
Endometriosis: Woman's 12-year battle for diagnosis
It’s an all-too familiar story among women. You go to the doctors complaining about various painful and debilitating symptoms, only to be fobbed off.
For Dominique Ribeiro Da Silva and Helene Hill, who met via social media after advocating for Endometriosis and Polycystic Ovarian Syndrome (PCOS) awareness, finding hope and determination amidst the pain of their diagnoses, is an experience they wish to share in the hopes of helping other women find the help they need.
And it even led to an exciting new business venture for the pair!
The long road to diagnosis
So, how long does it take for someone to be diagnosed with Endometriosis? For Dominique, it was a painful 12 years.
“It was a hell of a ride that’s for sure,” Dominique tells Yahoo Lifestyle. “From my first period, I had issues. Irregular bleeding and heavy bleeding to the point of flooding within an hour.”
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But doctors weren’t interested in Dominique’s concerns. Like so many women with severe and debilitating menstrual issues, cries for help often fall on deaf ears.
“One of the biggest hurdles to getting a diagnosis was definitely being heard,” she explains. “I didn’t feel as if many doctors wanted to listen to me when I said I was unwell, or in pain. I was always dismissed and told it was in my head or that period pain was normal. I actually was referred to a psychologist before they even sent me for an ultrasound!? Bizarre!”
Sadly, Dominique’s story isn’t unique. And while she was going through her own personal hell, Helene was suffering the same painful and debilitating condition.
“I originally had some suspicions when I was 17 and had horrible periods to the point I was throwing up,” Helene explains. “But I was put on the pill and honestly forgot about it until I was 24. I then had a cyst rupture about 3 years ago and from there on was in and out of hospital for weeks before finally being diagnosed. I was then lucky enough to have surgery within 3 weeks of diagnosis as my Endometriosis was so severe and my pain so constant."
Since then, Helene has endured 3 laparoscopies and is going in for her fourth in this month.
“It took months after my cyst rupture of doctors not believing me, telling me I had appendicitis or I was coeliac and even suggesting I was allergic to my pre-workout for them to finally find the answer to my pain. Those few months of constant pain and not knowing what was going on were the scariest for me personally, and being diagnosed was such a relief even though there is no cure.”
Still not being heard
Unfortunately, according to Dominique, not much has changed in the hospital system since being diagnosed.
“I actually had a recent hospital admission where I ended up discharging myself. I try and avoid hospital at all costs and use pain medication at home because there’s nothing worse than going to hospital and being told your pain is normal, when you know it’s not. It can be very triggering!”
Helene adds: “So many ER trips I was told it was just a painful period, they refused to do any scans and just told me it was normal and there was nothing they could do other than give me pain meds and send me home. It was only when I started standing up for myself and fighting for my care did I find answers, and doctors started actually helping me. I have also had instances where cysts have ruptured and the doctor, without even knowing any information, is just telling me I’m having a period (which scans and blood tests later revealed wasn’t the case) and this has unfortunately happened on quite a few occasions. I, like Dom, try to avoid hospital now and only go when I am absolutely desperate.”
Fighting for Fertility
Sadly, many women who suffer endometriosis and PCOS face a long battle when it comes to fertility.
“It’s been a disaster,” says Dominique. “I don’t ovulate naturally and have extremely irregular periods, so natural conception just hasn’t happened for my husband and I. I also recently lost my left ovary, so that’s not great either. My partner and I have done a few rounds of IVF now, and all have failed before transfer because my uterus just does not want to cooperate.”
Helene commiserates. “My partner and I don’t want children right now, however me being the planner I am, I need to have my future sorted for my own mental sanity. My most recent Endo surgery in March of this year was specifically to preserve my right ovary so that I could freeze my eggs and give myself a fighting chance in the future. I thankfully now have completed two rounds of egg freezing and have my back-up plan locked and loaded. In saying that, in my upcoming surgery I will be having my left ovary and both Fallopian tubes removed, which will unfortunately make it physically impossible for me to ever conceive naturally. I’m sure my Endometriosis, PCOS and Adenomyosis would’ve made it quite difficult for me to conceive naturally regardless, however losing my tubes and ovary takes away this option completely, which I am still coming to terms with.”
Pain Management
When it comes to managing pain, Dominique says heat packs, pain medication and rest can help. She also finds acupuncture and light exercise helps her pain too, while Helene cites her pain specialist as her best friend.
“I have had multiple nerve blocking procedures and ketamine infusions,” she says. “I also rely on my pain medication and my favourite Spoonie Society heat pack, of course. I have also recently started my journey with medical marijuana and am trying to explore that as an option to help relieve my pain.”
The Spoonie Society
Among the pain of such debilitating conditions, Dominique and Helene have found offering help and hope to others by way of their business, The Spoonie Society.
What is a “Spoonie” you may ask?
A Spoonie is a disability metaphor used to give a visual representation that signifies the decreased amount of both mental and physical energy available for activities. These activities can be as simple as washing your hair to going into the office, and represent both essential and productive tasks.
The Spoonie Society prides itself on their Melbourne made products which include heat packs, hand warmers, diaries and migraine masks in stunning prints. $1 from every sale is donated to charity with each month being a different charity.
And Dominique and Helene have some sobering advice for anyone who suspects they may have Endometriosis or PCOS.
“Advocate for yourself,” warns Dominique. “You know your body best, so if you suspect something isn’t normal, it probably isn’t! Even if you get a “no” at first, keep punching for a diagnosis!”
Helene agrees. “You know yourself best, better than any professional, so fight for answers and fight for the help you deserve. Know you are not alone and there are amazing communities of people going through something similar. There is no shame in reaching out for help and having a solid support network to help navigate the shitty situation that is chronic illness.”
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