Endometriosis & Fertility: Getting a Diagnosis & Seeking Care

Of the many titles I hold in my personal and professional life, the title of Endo Advocate was the only one that I didn’t raise my hand for. Although I didn’t volunteer to have an incurable chronic illness, I have done everything in my power to bring awareness to this awful disease. As much as this condition has taken from me, I have also gained a community of women like me who are battling Endo, researchers, and healthcare professionals who are using their specific talents to support finding a cure. 

My Endo story began when I was a child but I was not diagnosed with Endometriosis until age thirty-one. After twenty years of terrible pain and other physical symptoms of the disease like nausea, fatigue, and extreme bleeding, I switched Doctors and found a Doctor who sent me for an MRI. The MRI signaled potential Endometriosis and within two weeks, I was preparing for my first laparoscopic Endometriosis surgery. Although I had prior uterine surgeries for polyps and cysts, this was the first uterine surgery I had to confirm Endometriosis and after close to eight hours of surgery, I was properly diagnosed with Stage 2 Endo.

My story is not rare as on average it takes an average of eight years for a woman to be diagnosed with Endometriosis. Endometriosis is a painful condition in which tissue that is similar to the inner lining of the uterus grows outside the uterus. It often affects the ovaries, fallopian tubes and the tissue lining the pelvis. Endometriosis growths may be found beyond the area where pelvic organs are located and in my personal experience during surgery, my Doctor found Endometriosis near my bowels and kidneys.

Endometriosis has not just affected my physical and mental health, it has impacted my career and relationships. Endometriosis has prevented me from certain activities like traveling, exercising, working and eating & drinking certain foods that cause painful flares. Almost every decision I make revolves around pain management and planning for when or when not I will be able to participate in an activity. 

Endometriosis is a full body disease and although painful periods are a main symptom of Endometriosis other symptoms can include:

• Abnormal bleeding
• Heavy or irregular periods, bleeding between periods, or spotting.
• Painful urination.
• Painful bowel movements.
• Chronic pelvic pain that lasts six months or more.
• Painful periods that may start a week or two before your period, and can feel dull or severe.
• Pain during or after sex.
• Excessive bleeding. 
• Infertility.
• Fatigue.
• Diarrhea.
• Constipation.
• Bloating.
• Nausea.
• And others.

Endometriosis can be very challenging to manage so it's important to find a care team that diagnoses the disease sooner rather than later, learn as much as you can about Endometriosis and its impact on your Fertility. This is my biggest regret in having a delayed diagnosis. Had I known sooner that between the factors of age, environment, multiple surgeries and the progression of Endometriosis my dream of becoming a Mother was at this high of a risk, I would have looked into Egg Freezing at a much earlier age.

One of the hardest parts of understanding Endometriosis is how different the experience is for each woman battling the disease as well as their personal goals of family planning. For me personally, receiving the diagnosis left me filled with grief. It was an emotion I had never navigated as I felt like my dreams of Motherhood might not be possible. I sat in that grief for years, not knowing what the best options were for me as my Doctor has made me aware that the disease is progressive with age and my symptoms could get worse. 

It has now been four years since my diagnosis and I have been able to navigate my symptoms with my health team, make both diet & lifestyle changes to manage my symptoms and educate myself with resources from Spring Fertility to ensure I have increased my chances at Motherhood. I spent a lot of time debating what the right path would be to take for me but I have found that even if I have to continue to have more Endo related surgeries that given the statistics of less than an 18% chance of getting pregnant naturally, that egg freezing would give me the freedom of choice and options when I decide to become a parent. I am very grateful for the opportunity to learn about my body and the science behind the egg freezing process, so I can make an educated decision and reclaim control over my goals for building a family on my terms.

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At Spring, we often hear stories like Kelly’s from patients with endometriosis, and understand that an endometriosis diagnosis can bring with it fear about future fertility and the ability to get pregnant. We are dedicated to providing family-building support and treatment options and work closely with OBGYNS, endo specialists, and surgeons to help those patients safely achieve their dreams of parenthood. If you have been diagnosed with endometriosis, the first step is to schedule an initial consult to talk with a fertility specialist and understand your options based on your unique medical history and current reproductive health.