Pressing for Change with Danielle Halcrow
By Danielle Halcrow
My name is Danielle and I am 24 years old, originally from Wellington but now living in Palmerston North, New Zealand.
I was diagnosed with endometriosis when I was 20 years old, I had dealt with fatigue, painful periods and other symptoms from the age of 16 but I never got any answers for it, in fact most people thought I was faking it and endometriosis never came up. I had never heard of endo or PCOS or anything along those lines. I was on the way home from my course one afternoon when I got quite an intense burning and stabbing pain in my lower abdomen, it was bad enough I had to pull over till it subsided a bit. Later that night the pain hadn't gone so I went to after hours, I had an ultrasound which showed quite a substantial cyst on my left ovary. I was then referred to see a specialist through the public system at the hospital, which I went to with my mum and all that came out of that was me getting given the Depo-Provera injection and getting told I was depressed and I was then referred to see a counsellor.
While I was waiting to be seen I had blood tests, ultrasounds and saw doctors, none of which could really give me any answers, and you are unable to see endometriosis on a scan, only a laparoscopic surgery can diagnose it with certainty. I was told they could refer me to the hospital again to see the specialist but I honestly didn’t want to go there again, I felt it would just be pointless after the last visit and I would be told the same thing as last time. So i went to my counselling appointment, in which she told me I was fine and she really didn’t need to see me again. The counsellor I saw said it’s not the first time girls or women with suspected endometriosis had been sent to her and she recommended that if I had medical insurance that I should go to see a specialist at the private hospital in lower Hutt, so tha't’s exactly what I did.
Within just a few weeks I was sent in for surgery to have the cyst removed and have an exploratory laparoscopic surgery. Unfortunately surgery was somewhat hard in terms of recovery as my body didn’t react well with the anaesthetic, I was in recovery for hours, in need of oxygen for the day afterwards, high risk of blood clotting and needed to stay in hospital for a couple of nights, rather than just the day. This was the same for all my subsequent surgeries as well.
I felt much better after surgery, but 8 months later I was back again in for more surgery, this time the endometriosis had spread to my bladder, bowels, pouch of Douglas, pelvic lining, uterine walls and appeared to be heading toward my kidneys. Which meant more keyhole incisions and more invasive surgery around my organs.
Since then, I have had another two surgeries to manage the pain. I've trialled a lot of birth control options however unfortunately my body is far too sensitive to the hormones, and I just end up getting really sick. My most recent surgery which was September 2020, I had the Mirena inserted to see if that could help, but 6 weeks on after surgery I still had heavy bleeding, cramps and unbearable back pain, so I made the decision to have it removed. Since then, I haven't had much pain at all. The surgeries have definitely helped a lot as far as keeping the symptoms under control. My main symptoms/side affects personally are chronic fatigue, sensitivity to foods, low immune system, low blood pressure, bad cramps and back pain, nausea, extremely painful periods, pain during sex and sciatica. So I do believe I made the right decision when saying yes to the first laperoscophy to actually find out if it was endometriosis causing the issues with my body. Even though it sucked to find out that’s what was wrong with me and I would be stuck with it for life, I actually was so happy I had an answer, I was not crazy or depressed and making it up, I was actually sick and I can get treatment now.
Another thing I would like to mention that can be so valuable is seeing a counsellor. I never intended to speak to one for my endometriosis. I recently had some bad things happen in my life which lead me to seeing a counsellor, and whilst talking to her I ended up opening up about my endometriosis and the mental and emotional affects it has had on me. It was extremely helpful and I really do recommend it if you are struggling.
I’m hoping raising awareness for this disease will lead to doctors and specialists getting more educated on it. I couldn’t count how many times I’ve ended up in ED with excruciating pain and nurses/doctors etc just don’t have enough training on what’s going on, or half the time even know what exactly it is. During the lockdown I actually ended up in ED all by myself as my partner wasn’t allowed in, I was extremely lucky to get a nurse whose partner actually has endometriosis and that nurse told the doctor on at the time that I should be having a scan to check for cysts, which the doctor did thankfully. Another instance I was in hospital for well over a week due to pain and low blood pressure, i had a debilitating cyst that was draining itself and rather than removing it they just kept me in hospital while it finished draining and went away. It has stopped me studying, going out, going to work and living a normal pain free life. So it isn’t something I believe should be taken lightly.
I really hope my story can really push other people to get checked. If you have symptoms, pains or things just don’t feel right to you, then it most likely isn’t. Push to get the right tests and treatments, and if one doctor/specialist won’t take you seriously, then do what I did and find one that will. A lot of people don’t understand this disease because it’s invisible to the eye, but don’t be discouraged, you are brave and strong and there are people who feel your pain. You’ve got this!
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