This is a firsthand account submitted through SWHR’s Share Your Story portal, as part of SWHR’s Women’s Health Perspective series.
A handful of years after freezing my eggs, four surgeons told me the same thing: the estrogen in egg freezing hormones may be linked to the deep pelvic pain I was experiencing, and I likely had endometriosis and adenomyosis. How could this be possible? I had never had period pain prior to egg freezing or suspected I had endometriosis. My uterine scans came back fine from testing, and I had never even heard the word adenomyosis before, let alone how to pronounce it. The only known risk that had been explained to me before undergoing egg freezing, or that I saw in my own research, was ovarian hyperstimulation syndrome, which happens at the time of egg freezing, yet I had sailed right through that process. I was unaware it was even remotely possible to experience side effects from egg freezing years later.
I support egg freezing for the autonomy and choice it affords women, but as it becomes more commonplace, it is necessary to increase research on its potential long-term effects on women’s health.
That there is scant research on egg freezing and its potential impact on conditions such as endometriosis, unfortunately, came as no surprise to me. As of 2023, Deloitte reports that only 2% of the $41.2 billion in venture funding that went to health innovators went to women’s health. Government investment in endometriosis, let alone adenomyosis, also pales in comparison to investment in other diseases, which is shocking considering endometriosis affects one in 10 women between 15-44, and this is likely an underestimate. The National Institutes of Health (NIH), the largest source of biomedical research funding globally, allocates nearly $48 billion USD annually to the study of various diseases and conditions. Despite the NIH’s expanding budget over the past decade, only 8.8% of NIH research spending from fiscal years 2013 to 2023 targeted women’s health research. And for comparison, in 2022, the total U.S. funding for endometriosis was $16 million (0.038%).
As employers increasingly offer coverage for egg freezing, and as fertility policies and coverage in the United States become more complicated, it will be increasingly important to study the potential impacts of egg freezing on women’s health. There is so much we don’t know. Some women may be at risk of pelvic pain, fertility challenges, misdiagnosis, and potentially other linked health challenges when they go through the egg freezing process with undetected endometriosis.
Other women may not. But the fact that every endometriosis surgeon I consulted years later seemed to share similar conclusions, while no research is being done on the issue, caused me to grow concerned.
So, I did my own research. Endometriosis is a common and underdiagnosed condition when parts of the uterine lining grow outside the uterus, most commonly on the reproductive organs, while adenomyosis is a condition where this same endometrial tissue grows into the muscular wall of the uterus; both conditions can cause pelvic pain, and both can preclude getting pregnant and/or bringing a baby to full term.
The challenge with endometriosis and adenomyosis is that women may not know they have either or both conditions when they start egg freezing. It currently takes up to 10 years on average to diagnose endometriosis, and the only way to confirm it is through laparoscopic surgery, the gold standard to diagnose endometriosis.
Estrogen levels rise dramatically during egg freezing to as high as 60x normal baseline levels on average to produce multiple eggs, and because endometriosis is considered an estrogen-dependent disease, the estrogen imbalance may be a contributing factor to the significant pelvic pain women may feel after egg freezing. Across the various opinions I received regarding my care, all my surgeons agreed that they see a lot of pain cases like mine either soon after or years after egg freezing.
We need better research to detect endometriosis and adenomyosis predictors earlier in a woman’s life, and ideally in less invasive and costly ways. We also need longitudinal data to explain if there’s a link between the egg freezing process and exacerbated endometriosis and adenomyosis, especially as the number of egg freezing procedures are rising. We need more data on the impacts of high exposure to hormones, specifically estrogen, on women’s reproductive health and pelvic pain. We need more research dollars going to longitudinal studies on endometriosis, adenomyosis, and the potential link between egg freezing and these diseases. Right now, there is no cure for endometriosis, and the only “cure” for adenomyosis is hysterectomy. More investment in research can lead to better care, prevention, and women and families making more informed reproductive decisions, and ultimately, thriving women contributing to their families and society with greater well-being.
Egg freezing has been positive and life-changing for many women (myself included!), and certainly plenty of people do it without negative side effects.
This is not a call to stop egg freezing but it is a call to increase research around it, so women are aware of any potential side effects, and so those side effects, once identified, can be addressed.
Had I known I had endometriosis, the doctors would have likely changed the course of treatment for my egg freezing, similar to how breast cancer patients freeze their eggs. Quite a bit is being done around medical egg retrieval for endometriosis patients, but they need to know they have the disease first. The hormones I took to prolong my career and earning potential may be the very thing that stymies them, as endometriosis has a direct effect on a woman’s ability to work. It may also complicate bringing a child to term. Studies show that women with endometriosis and adenomyosis can have more challenges bringing babies to term. These conditions correlate with a higher risk of miscarriage, early birth, and preeclampsia, among other conditions.
At 41, staring down a few more precious reproductive years, I dream of a day where there’s early endometriosis detection; long term, inclusive research on the side effects of egg freezing and robust investment dollars supporting this research; and safer alternatives for women to freeze their eggs, potentially with new technology.
My hope is for more clarity on any long-term side effects – and for doctors, patients, researchers, and funders to support this much needed research so that other women can possibly avoid the pain I have experienced, both physical and mental, which also affects their partners, families, friends and colleagues who care about them.