Endometriosis Awareness Month | Meet Danielle
Breaking the Silence: Danielle’s Journey with Endometriosis
Endometriosis is a condition that affects countless women, yet it, unfortunately, remains underdiagnosed and misunderstood. Today, we're sharing Danielle's story - her challenges, resilience, and advice for others navigating their own endometriosis journey. Danielle, a cherished member of our She Moves community, shows incredible strength as she navigates the challenges of Endometriosis. Her journey highlights the necessity of self-advocacy, the importance of community support, and the ongoing effort to manage the physical and mental toll of this condition.
Could you share a bit about your journey with endometriosis—how it started and what your experience has been like?
I think the most common answer for women suffering from endometriosis is that they thought the symptoms were normal, so they did nothing about it. I suffered from a very young age, but because I didn’t know any different, I assumed everyone had the same type of issues. It wasn’t until I was in my early 30s that I realised something was wrong - I had a particularly bad month of pain and mentioned it in passing to some girlfriends as a bit of a joke. One of them said, "Oh, I don’t even know when I am getting my period, it just turns up." I couldn’t believe that someone could get next to no, or no pain with their period. After this, I started talking to more of my girlfriends, and while some experienced great pain and bleeding quantities, I felt like mine was different again.
I had complained to my doctor on multiple occasions about pain before and during my period, as well as ovulation times, and been prescribed harder and harder painkillers. It got to the point where my painkillers were only dulling the pain, but I couldn’t take anything more without a hospital visit. Eventually, I demanded to be given a referral to a Gynaecologist. I was lucky to be seen a few months later and after discussing my symptoms with him, I was booked in for a laparoscopy right then and there.
I had the operation and unfortunately, I was riddled with it. The Gynaecologist had started the operation with the intention of removing what was there (if he found anything), but because of the severity of it, he had to stop as he wasn’t skilled enough to remove what I had. I was referred to another surgeon and then lockdown happened. Once it was over, I was able to get booked in for another laparoscopy and endometriosis removal. Luckily, that operation was successful, although he did mention that the endometriosis was worse than originally thought.
The recovery was horrific and to this day, I can’t believe it is expected that women are told that they can go back to work after a few days of this surgery. The first few periods after this surgery were worse than ever and it was torture. Eventually, the pain eased to bearable and then I was lucky enough to become pregnant.
After the birth of our child, I was hoping that the symptoms would subside, but they got worse. After scans and specialist appointments, my left ovary was fusing to my uterus. We tried to get pregnant again but ended up having to go through IVF, which was successful.
After the birth of our second child, I was hoping that my symptoms would subside, but again, they have been worse. I have had issues with pain and apparently there is a small amount of endometriosis now growing in my c-section scar. I have had numerous appointments with a Gynaecologist and my only option to control my pain is a partial or full hysterectomy, which I’m not ready for. In the meantime, I live with the pain and try to continue to hide it from most of the world as best as I can.
How has endometriosis impacted your physical and mental health, particularly when it comes to exercise?
I have been a very active person most of my life and there were definitely times that I had to stop what I was doing or not even attempt it because of the pain or the severity of the bleeding. My mental health is never great leading up to my period or ovulation time, because I know what pain is going to come with it. I have some strategies that I use to try and get through that mental barrier, but sometimes it all becomes too much.
Have you discovered any strategies or practices (including exercise) that help you manage your symptoms?
When the pain is bad, I can’t do anything related to exercise - I am in survival mode with two young children and a full-time job. I find meditation helps and I have a bunch of mantras which get me through the mental toughness of it all.
How has living with endometriosis shaped your relationships and what support has been most meaningful to you?
I have lost a lot of faith in a number of healthcare providers - more and more, I hear of some doctors prescribing women paracetamol to "take before sex" because it’s so painful; or like in my case, being given harder and harder painkillers instead of being referred to a specialist.
I’ve had to exaggerate my descriptions of pain in order for anyone to listen to me. Being able to open up and tell my family, best friends, and a few trusted work colleagues has made everything more bearable. Previously, I would say yes to going out but now I don’t feel as bad saying that actually, I can’t because I’m in so much pain. Not having to try and hide how much pain I’m in has been amazing. I still do, probably more than I should, but I am so grateful for the support networks around me.
What message or advice would you like to share with others in the She Moves community who may be navigating their own endometriosis journey?
If you’re in pain, it’s probably not normal. I wish I had believed my instincts and pushed harder for more treatment or even referrals. In many cases, a scan is not enough - there must be a laparoscopy. Unfortunately, they are expensive, but whatever way you can, try and push for one. Tell people! Tell people you are in pain or struggling with managing periods, etc. It’s helpful to know you’re not alone, but even when there are people who have worse symptoms than you, that doesn’t diminish what you are going through.
For more information and support, visit Endometriosis NZ 💛
Helpful links
Endometriosis NZ: Movement Plans
Endometriosis NZ Facebook Group
Women’s Health Action - Endometriosis
