Endometriosis Awareness Month: Endo Storytime

Updated: Jul 12

Storytelling, be it by word of mouth and in written form, can connect us to our coll

ective consciousness.

Through sharing our stories, we can learn to evolve. We can then form meaningful heart-centred connections.

What is essential in our storytelling is how we frame the story. I chose to frame my story in a way that empowers me and other women. A friend said to me recently, ‘there are always three sides to a story. Your truth, the other person’s truth, and the actual truth.’

Storytelling is then one person’s account or experience, that is their truth. So I chose to tell my truth and my story through the lens of self-love, vulnerability, empowerment and clarity. Our perception of our story, be it positive or negative, shapes our reality. I don’t know about you, but I want to form the existence of joy, healing and love.

I was diagnosed with endometriosis last year and had surgery to have it removed. The surgery went well, the endometriosis isolated to the back of my uterus. I was lucky. The physical recovery was smooth. Although, I found the emotional turmoil from the change in my hormones after the surgery, for lack of a better word "brutal". My hormones were raging, but this trying time served me well. It showed me where I needed to heal and I began to heal the emotional and physical wounds.

At the time of my diagnosis and post surgery, I was so angry that my endo diagnosis came after having perfect embryos transferred (PGD tested) via IVF. I am not alone in the late diagnosis of endo for women in IVF.

I was angry at my clinic, and at my first fertility doctor, and I was angry at myself. I was angry that I wasn’t the best advocate for myself in the IVF process. I have now forgiven this self-betrayal. I’ve healed and forgiven it all. Here is the part of the story that is best to remain in the past. The lesson from my endometriosis diagnosis and IVF experience is to help women find clarity in IVF and any diagnosis that puts up a barrier to conception. Infertility is a symptom of endo. There were no other symptoms of endo for me.

When I hear women speak about their crippling endometriosis symptoms, I felt like a fraud. I never had any symptoms. My menstrual pain is worse (but not crippling) now post my endo surgery. So the questions that come to me are; is it normal not to have crippling symptoms? What’s normal? Aren’t we all made differently? Don’t we all experience pain physically in different ways? Can we say for sure what is normal without knowing and experiencing someone else’s menstrual cycle?

We can’t! Looking back it is so frustrating that when I went to see my first IVF doctor, there was minimal discussion about my period, my cycle and my lifestyle. Yet, when I visited Caz Butler from the amazing Angea team last year. Caz polarised this experience. Before acupuncture and cupping, Caz asked me many questions about my cycle, my body, my lifestyle and the overall circumstances of my life. Caz was curious and wanted to understand what was going on with me from at a physical and emotional level. Shouldn't this process be mirrored for IVF specialists? I'm sure there are some specialists that are curious. But, shouldn't they all be curious?

I am not a victim of the IVF process. It has taught me many lessons on patient empowerment and the importance of being assertive in the medical system.Your doctor is not God and doesn’t have all the answers. That said, I will also not let the IVF industry off the hook. There is a real lack of curiosity going on in this space about getting down to the underlying cause of infertility. IVF treatment should not be a band-aid for infertility.

The toll that IVF had on me was massive. I had to seek out support and pay for it on top of treatment. This is the reason why Together We Wait is alive today, because women in IVF need the support that is accessible and affordable.

That's my endo story. So please darling share your story and gain your power. Lets get curious and find clarity in endo together.

Join the Together We Wait Community and receive support in IVF by connecting with other women in IVF. Be a part of creating connections and finding clarity in the IVF process. Invest in forming empowering connections with women that understand.


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