We all have similar stories when it comes to our endometriosis journeys. However, we have also had very different experiences with (in)fertility.
Endometriosis (also known as endo) is a chronic, debilitating disease where tissue that is similar (not identical) to the uterine lining forms lesions, adhesions, and nodules outside the uterine cavity. It affects #1in people assigned female at birth.
Currently, there is no cure nor a definitive cause for endometriosis. Endo may cause pain, fatigue, bowel and bladder issues, heavy bleeding and infertility. (It is believed that endometriosis can have a negative effect on egg quality. Scar tissue from surgeries can lead to issues with the uterus. Endometriosis adhesions can cause the fallopian tubes and ovaries to become blocked). Some people with endo may have difficulty becoming pregnant. Others may have complications during pregnancy, which include miscarriage.
Infertility is an issue that many are not comfortable talking about. It is a private ordeal that often requires difficult conversations about intimate details. We want to share our struggles with (in)fertility from the perspective of two people living with endometriosis.
Endometriosis Events came to be when we met at an event a few years ago. We talked and bonded over our similar diagnoses, frustrations and hope. We noticed there was a void in the endometriosis community. People who looked like us, POC, were continuing to be marginalized, ignored and silenced. Realizing we weren’t alone, we knew we had to do something.
Our first event was a brunch in Toronto for endo warriors and our supporters. It was an amazing launch to what would become a way for our community to meet, network, bond, heal, learn and have conversations around endometriosis. We brought together endo patients, medical professionals and people who wanted to learn more in a space where they could feel comfortable.
There is always room to share and negative experiences of pain and lack of treatment are all part of these journeys, but we want endometriosis patients to have moments where they can feel encouraged and empowered. Through our events, we endeavour to do this.
“I could not believe how expensive options for fertility preservation were. However, freezing my eggs, in advance of a possible hysterectomy during surgery, was the choice I made. The choice, which was best, at the time, given the information I had and where I was in my life”. – Leah
Faced with my third surgery, I was told I may have a hysterectomy in the event my surgeons could not control my bleeding. I was not at a point in my life where I was ready to completely ignore my desire to have (a) child(ren). I had looked into adoption and other options for parenting, including surrogacy, but there were barriers, which made these options less likely for me to pursue. I opted for egg freezing. This would allow me time to explore and make the best choice, while not being forced into an immediate, life-changing decision. I went through counselling and pre-screening blood work, ultrasounds and a painful sonohysterogram to see with what we were working. My egg count (AMH levels – anti-mullerian hormone) was on the lower end, but with a protocol in place, we proceeded with hope. I had completed the procedure after weeks of injections, early morning visits to the clinic and lots of TLC. In the end, I was able to freeze some viable eggs. I did not yield a lot, but I was happy that I still had options available for me to explore in the future. My work benefits covered some of the expenses associated with the medications, but it was still a hefty bill. I do not regret my decision and I still have my eggs frozen.
A hysterectomy is not easy to face for anyone. And it is important to note that a hysterectomy is NOT a cure for endometriosis. However, in some cases, people with endometriosis have a hysterectomy – either as recommended by their doctor, by choice or during surgery when there is no other option. Regardless as to why people with endo find themselves in this situation, we have a lot of physical and mental healing ahead of us.
My journey started in 2017 when I had a laparoscopy excision surgery. I had both my Fallopian tubes removed due to the severity of endometriosis. Prior to surgery my doctor informed me of the possible outcomes that may occur during surgery. I was aware that there was a chance I could have my organs removed. I just didn’t think it would actually happen.
“It was a weird feeling. I was happy that all the adhesions were removed, and I was looking forward to having less pain, but at the same time I was sad that I had my Fallopian tubes removed”. – Tami
After healing from my surgery, I started seeing a fertility doctor to look into the process of egg freezing. Although I was fortunate to be put on a waiting list to get some funds for IVF, everything was extremely overwhelming and there was a lot of information to process.
I did several AMH tests and ultrasounds. The outcome of freezing my eggs did not look promising and on top of that it was very expensive. I also looked into adoption and surrogacy, but that was also very costly.
“I felt overwhelmed and stressed. I was mad at endometriosis for putting me in this situation and upset that I was going through this process by myself. I didn’t have a partner by my side and it made me feel alone”. Tami
This journey was definitely challenging. I decided to take a break from my fertility appointments and focus on my mental health.
In 2022, I made the difficult decision to have a hysterectomy due to my painful heavy periods that would last 20-30 days, and daily nausea. During the hysterectomy, the surgeon was only going to remove my uterus and try to save my ovaries. However, due to the number of adhesions on both ovaries they had to be removed.
“The removal of my ovaries brought back the same feelings I had in 2017 when my Fallopian tubes were removed. I was sad and in complete shock”.
Endometriosis and (in)fertility are complex.
“Although I never had a chance to revisit egg freezing, I’m on a new journey, with my fertility doctor, exploring other options such as surrogacy and adoption. I look forward to focusing on my health both physically and mentally”. Tami
Tami Ellis and Leah Haynes are the co-founders of Endometriosis Events. Endometriosis Events educates youth in schools, facilitates a virtual monthly support group for those with suspected or diagnosed endometriosis, and hosts events to raise awareness for endometriosis. For more information visit endometriosisevents.com | follow us on Instagram and Twitter @endoevents | or email email@example.com
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