Strategies for Fertility Preservation with Endometriosis

Key Takeaways:

• Egg freezing typically has better outcomes when performed before cystectomy.
• Clinicians should discuss egg freezing as a proactive measure before the disease or surgery causes further damage.
• People with endometriosis often feel overwhelmed by the pressure to conceive immediately. Clinicians should validate the "dual burden" of pain and infertility and offer mental health support.

Endometriosis affects approximately 10 percent of reproductive-aged women, and approximately 30 to 50 percent of people with endometriosis may face infertility. For clinicians, managing this condition often requires navigating the complex issue of treating chronic pain while trying to preserve fertility.¹

This "dual burden" can weigh heavily on people with endometriosis, who often feel they must choose between their physical health and their future ability to have children. By implementing early fertility preservation strategies, clinicians can help patients navigate these difficult decisions.

This article shares some of the data around fertility preservation for those with endometriosis, as well as patient insights from Health Leaders in the Endometriosis.net community.

Assessing ovarian reserve and surgical risks

The impact of endometriosis on ovarian reserve is well-documented. Endometriomas (ovarian cysts) alone are associated with lower levels of anti-Müllerian hormone (AMH), a key marker of ovarian reserve.^2-4

Furthermore, the surgical excision of these cysts can reduce ovarian reserve even further. Recent meta-analyses indicate that surgical removal of endometriomas may result in a significant decline in AMH levels post-operation. This drop is even more significant after the removal of bilateral endometriomas. This effect is seen regardless of the experience of the surgeon or surgical technique because the primordial follicles surrounding the cyst are inadvertently damaged.^2-4

This clinical reality creates a painful dilemma for patients with endometriosis. The need for surgical intervention to alleviate debilitating pain often clashes directly with the desire to protect ovarian function. One Health Leader described this conflict as "living in hell," noting:

"I am at a crossroads where I need to make a decision VERY soon on whether to pursue egg retrieval followed by a big surgery to clear out some of my stage 4 endo…with no guarantees. I wish my urge to be a mother was as strong as my need to give my body some peace."

When counseling patients, it is critical to evaluate AMH levels and antral follicle counts before any surgical intervention. Guidelines from the European Society of Human Reproduction and Embryology (ESHRE) recommend that clinicians discuss fertility preservation options with women who have extensive ovarian endometriosis before performing surgery.^2,4

Egg freezing: timing and techniques

Egg freezing is a viable strategy to preserve fertility before the disease or its treatment causes further damage. Data suggests that freezing eggs before undergoing surgery for endometriomas yields better results than freezing after surgery. Women who undergo stimulation and retrieval prior to cystectomy typically have higher egg yields and require fewer stimulation cycles.^1,5

However, the conversation around timing must be handled with sensitivity. Patients frequently report feeling rushed by medical professionals to "get pregnant immediately" after a diagnosis or surgery, regardless of their life circumstances. One patient shared their frustration:

"I remember coming out of anesthesia from my laparoscopy procedure to address endometriosis. The doctor told me that if I wanted to have kids, I needed to do it as soon as possible. That wasn’t exactly the information I wanted when I was single."

One patient shared that after finding a blocked fallopian tube, her doctor:

"advised to try to get pregnant as soon as possible before things could get worse...I am now trying to seek any natural treatment as I am also off the pill since I am trying to conceive after just getting married."

Instead of blanket advice to conceive, clinicians can consider offering egg freezing as a proactive medical intervention. This allows single people, or those not ready for parenthood, to preserve their biological potential without the immediate pressure to find a partner.⁵

Navigating patient counseling and psychosocial impact

The psychological toll of endometriosis is profound. Research shows that women with endometriosis experience high rates of anxiety and depression, which are often exacerbated by fertility concerns.⁶

Women living with endometriosis often battle a variety of pain, including pelvic pain, dyspareunia, and dyschezia, which can all affect quality of life. Anxiety and depression are common in this population, which is only exacerbated by the possibility of infertility and the pressure of balancing symptom treatment with fertility preservation.⁶

The fear of infertility can complicate romantic relationships and dating as well. Patients often struggle with when to disclose their potential infertility to a new partner to avoid "taking someone's dream away."

"How can I explain to this man that I want kids so badly, but that the ability to have kids was taken from me?"

Clinicians should validate these fears and provide referrals to mental health professionals who specialize in infertility. Standardized assessments, both of quality of life and disease burden, should be incorporated into visits to fully understand the impact of the disease on patients.⁶

Both generic tools like the Short Form-36 Health Survey (SF-36) and specific tools like the Endometriosis Health Profile-30 (EHP-30) can shed light on a patient's symptoms as well as track them over time. For patients with fertility concerns, the Fertility Quality of Life (FertiQoL) may be the best assessment. These questionnaires offer providers more information to select endometriosis treatment and can identify patients who would benefit from further psychological support and resources.⁶

It is also important to acknowledge the grief associated with miscarriage, which is common in this community but often met with silence. Validating a patient's loss can be a crucial step in their healing process.⁶

Despite the challenges, many people with endometriosis do go on to have children, either naturally, through assisted reproductive technology, or adoption. Sharing stories of hope can be powerful. As one community member encouraged others:

"Please do not ever give up on having children...Keep fighting and keep going."

A holistic approach

Strategies for fertility preservation with endometriosis require more than just technical expertise. They demand a holistic approach that considers the clinical risks to ovarian reserve alongside the patient's emotional well-being and life goals. Clinicians may find more success by employing an interdisciplinary approach, involving pelvic floor physical therapy, psychological counseling, and sexual counseling to better meet their patients' needs.⁶

By discussing egg freezing early – specifically before surgical intervention – and validating the complex emotions surrounding infertility, clinicians can empower people with endometriosis to make informed decisions about their reproductive futures.