What It's Like to Battle Endometriosis, Freeze Your Eggs, and Face Infertility At 28 Years Old (and Single)
I sat in a hospital gown with my feet in cold stirrups, waiting for my doctor to come in. Having my feet in stirrups was second nature to me at that point. I'd been battling endometriosis (a painful disorder where tissue similar to the tissue that normally lines the inside of your uterus grows outside of your uterus on other organs or structures in the body) since I was 14 years old (though I was only recently diagnosed), resulting in many trips to the ob-gyn.
But this time was different. I was here because all my doctors told me that if I wasn't ready to get pregnant within the next year (and wanted to increase my chances of becoming a mom), I needed to freeze my eggs. I was 28 years old, newly single, and—at the moment—totally alone.
I spent months preparing for this appointment, doing everything I possibly could to improve the success of my upcoming egg-freezing cycle.
The doctor came in and began the ultrasound. I winced, bit my lip, and took deep breaths each time he moved; my insides were on fire from my endometriosis. He kept apologizing for the pain and I told him it was okay between each gasp. Then came the bad news: I didn't have enough egg follicles to start a cycle. My heart sank and a lump instantly rose in my throat as I tried hard to hold back tears.
I left the appointment and walked through the streets of Midtown Manhattan, surrounded by people hurrying to get to where they needed to be. I walked in a trance. The tears I wiped at the doctor's office came back, and they were streaming down my face. No one seemed to notice, and for that I was grateful—I felt like no one would understand anyway. I tried to get as much of my emotion out before I walked into the office because I didn't want my colleagues to know what was going on in my personal life. I just wanted to feel normal. They didn't even know I broke up with my boyfriend of two years, and I definitely didn't want to tell them about my health issues.
I told myself to just push through it—I'd be ok. But I had no idea what was to come. But to better understand that, it helps to know where this journey started.
First Getting Diagnosed with Endometriosis
In March 2016, I was on the tiled bathroom floor at work, trying to find a position that would alleviate some of the twisting, stabbing pain scorching its way through my body, but nothing made it better. I was crying, it was hard to breathe, and I had a meeting soon.
I felt like I was going to pass out from the pain. You would think that, at this low point, I would have realized that the pain I'd been experiencing every month for 11 years wasn't normal—and that I would demand to know what was wrong. Instead, I took six Advil, like I usually did during the first four days of every period, and tried to go on like nothing was happening.
Over the years, I'd been told by doctors and the women in my life that periods are painful and I just got the short end of the stick. When I started becoming sexually active and sex was painful, I got an ultrasound, was told that everything looked normal and that "you might just be one of those people who can't enjoy sex." Imagine what it was like to hear that at 21 years old. No one had answers for me. (Related: Doctors Ignored My Symptoms for Three Years Before I Was Diagnosed with Stage 4 Lymphoma)
A month after the bathroom floor episode, I started bleeding and bled every day for a month. That's when I knew, for sure, something was wrong. That's also when doctors started taking me seriously. After weeks of getting tests and seeking answers, I finally got a phone call. At last, the doctor gave me a diagnosis: she said that I had very advanced endometriosis, stage IV, and needed surgery as soon as possible. (The stages of endometriosis are defined by where the disease grows rather than by severity of symptoms; if it grows in deep areas and has adhesions, it's considered to be stage IV.)
For some reason, my immediate reaction was to ask: "Does this mean I can't have children?" I was 25 years old.
"Unfortunately, endometriosis is one of the leading causes of infertility in women," she said. "I can't say for sure, but given the extent of the disease, there's a chance you won't be able to. We'll know more after surgery."
I hated her for this. I hated her for telling me this news as I sat alone at work in a stairwell. I didn't know how much I cared about having children until I found out I might not be able to. Yet, as scary as it was, I was relieved that after 11 years of pain, I finally had a diagnosis, was being treated seriously, and was hopeful that surgery would help.
About 1 in 10 women have endometriosis. But it often takes 8-10 years for a woman to get diagnosed because of the stigma placed on women to deal with severe pain. For years, women can often have their pain dismissed as being "normal." Many gynecologists also don't know how to properly diagnose or treat the disease, which makes finding effective treatment challenging.
The surgery revealed that the disease was on several organs including my bladder, intestines, ovaries, ureters (the tubes that transport urine from the kidneys to the bladder), and uterus. My surgeon also told me that because she was able to remove all of the disease and my fallopian tubes weren't blocked, I shouldn't have any fertility problems. While the surgical recovery was brutal, it completely changed my life. After years of debilitating pain, I was totally pain-free. For the first time, sex felt amazing and I didn't need to take days off work during my period—I could actually leave the house without being heavily medicated on painkillers and married to my heating pad.
I thought my issues with endometriosis were over—and they were, at least for the next few years.
Back for More
About three years after my surgery, in May 2019, I noticed some of my pain returning. After a surgical consult, I found out that my stage IV endometriosis grew back, and that I needed to get a second surgery. (Note: There's no total cure for endometriosis.) I was really upset when I found out it came back, but it also validated the pain I was beginning to feel again. I knew surgery worked the first time, so I was hopeful and willing to go through it again.
Before I underwent the second surgery, though, my new surgeon—Andrea Vidali, M.D., a surgeon at Braverman Reproductive Immunology and Endometriosis Surgical Center—encouraged me to get fertility testing to check the condition of my eggs.
ICYDK, women are born with about 1 million eggs, in the form of ovarian follicles—you never get more eggs than the amount you were born with, according to Extend Fertility—and from that moment on, you start losing them. Typically, at ~35 years old, the number of eggs (your ovarian reserve) begins to decline at a more rapid rate until you eventually reach menopause. However, if you have a condition (such as endometriosis) you could see a decline earlier than 35 years old (though this varies from person to person). It's unclear why infertility is more common in women with endometriosis, says Lauren Bishop, MD, Fertility Specialist at Columbia University Fertility Center. "Possible causes could include the quantity or quality of eggs, or problems with the fallopian tubes or uterus. Fortunately, there are treatment options that have been shown to be very successful in helping women achieve their goals of having a family. Egg freezing can be an excellent option for some patients, especially prior to surgery which could further impact their future fertility." (More here: What Ob-gyns Want Everyone to Know About Their Fertility)
If we found out I had a low ovarian reserve, my doctor told me it would be best to freeze my eggs before my second surgery. That's because the estrogen in the hormonal injections used for fertility treatments makes endometriosis flare up and grow—if I had the surgery and then found out afterward that I needed to undergo fertility treatments, my endometriosis might grow back, and I didn't want to risk that right after surgery.
Two days after my fertility test, the fertility doctor called me, and said, "Unfortunately, I don't have good news. Your anti-Müllerian hormone (AMH) and (follicle-stimulating hormone) FSH, which measures the number of eggs you have, are reflective of someone who is around 38 or 40 years old. If you aren't planning on getting pregnant within the next year, I strongly suggest you freeze your eggs now. Every year, a woman's ovarian reserve continues to decrease so now is the best time for you to preserve your fertility."
Within the next year?! How many years do I have left to get pregnant? For a brief moment, I wanted to call my ex and say, "Babe, let's try to get pregnant now." We had just broken up two months prior and having kids and building a family was something we discussed often when we lived together. But I quickly reminded myself that that wasn't my life anymore, and I chose to leave it for very good reasons. I didn't make the call. I decided that I needed to face this on my own and never look back.
I saw other fertility specialists to get more opinions and be sure that egg freezing was something I really needed to do. I wasn't thrilled about the idea of sticking myself with needles every day filled with hormones at a cost of $10,000 - $15,000 per cycle, but I knew I would regret it if I didn't freeze my eggs now. (This range includes the cost of the egg freezing retrieval, all doctor's appointments, medications, anesthesia, and egg storage for one year. Though, of course, these costs can vary. It's up to each person how many cycles they decide to go through based on the number of eggs they want to store and how many they retrieved each cycle, as well as other personal or financial factors.) Thanks to a company benefit, a large portion of my expenses were covered. This was huge—if I didn't have this company benefit, I'm not sure if I would have been able to afford even one cycle on my own and I may not have had the choice to preserve my fertility. (See: Women Are Risking Bankruptcy for IVF and Surrogacy)
As nervous and scared as I was, I wanted to do everything right so that I could get through this chapter of my life.
Undergoing My First Egg-Freezing Cycle
First, let's jump into the basics of the egg freezing process. Each menstrual cycle, a different number of ovarian follicles activate. These follicles don't represent all of the eggs you have left in your body, but rather they represent what's visible that month, according to Extend Fertility. For example, if you have 15 follicles one month, that doesn't mean you only have 15 eggs in your body—you could have hundreds of thousands of eggs. During a regular menstrual cycle, your follicles prepare for ovulation, but only one egg matures and is released from the ovary. During an egg freezing cycle, hormonal injections prompt the eggs inside of your activated follicles that month to mature so that your body can produce multiple eggs in one cycle. (Your AMH and FSH blood tests along with your follicle count ultrasound can give an idea of about how large your ovarian reserve is, though these tests aren't always 100 percent accurate.)
When you're ready to begin an egg freezing cycle, you go to your fertility clinic on the second or third day of your period. During this appointment, they check how many follicles you have on each ovary and blood test to check your hormone levels. If everything checks out, you're instructed to do injections and return to the doctor's office for another ultrasound and blood test. Usually, you need to go to the clinic every two or three days, and then you have your retrieval within 10 to 14 days after you began the hormone injections. On the day of your retrieval, you typically undergo anesthesia and when you wake up, your doctor reports back on how many eggs they retrieved. They watch your eggs overnight in a lab to see if any of the immature eggs become mature eggs, and the next day, they tell you how many mature eggs they retrieved. (Only mature eggs can be frozen because immature eggs cannot become embryos.) Of course, this is just a summary—the process looks different for every single patient.
In October 2019, once my doctor felt my follicle count was high enough (I had 15), I was approved to start my first egg-freezing cycle. The first time I had to inject myself with hormones alone in my apartment was nerve-wracking. It felt unnatural to stick myself with a needle (and three times a day, no less). Plus, some of the injections burned and made my skin break out into a small rash.
That said, I got used to it pretty quickly. I continued to work full time and most people at work didn't know what was going on—I bought oversized sweaters to hide my bloated and bruised stomach (a side effect from the hormonal injections) and tried to remain hopeful and calm. I did every injection by myself, but I also had an amazing support system around me; my best friends and family were there for me every step of the way.
After 14 days of injections, it was finally time for my retrieval. My doctor and I decided that my goal should be ~15 mature eggs because that's how many frozen eggs most fertility doctors recommend (if you're under 35 years old) to increase your chances of having at least one child. When you're ready to use your frozen eggs, only a certain percentage will survive the thawing process. Of those, a certain number may fertilize and form embryos. Of those, a certain number of embryos may be implanted in your uterus and begin to gestate.
After my first retrieval procedure, my doctor told me that they retrieved 11 eggs and that he would let me know later how many of those eggs were mature.
The next day, I got the call: Only four of my 11 eggs were mature. My doctor said he didn't know why this happened, other than my endometriosis. He strongly encouraged me to do a second cycle because four eggs were not enough. I was in bed listening to his words and I broke down.
Once I found my strength again, I decided to go through another cycle. At this point, it was almost the holidays.
Fortunately, all of my bloodwork and ultrasounds looked promising—I even had 17 follicles this time. The retrieval went well, and they were able to get 12 eggs. I was hopeful until my doctor called me the next day and asked me to come into the office. My heart started beating out of my chest.
The next day, he had more bad news: They retrieved 12 eggs, but only five were mature. Again, he wasn't sure why it happened, other than my endometriosis potentially playing a role. He didn't recommend a third cycle because he said my body needed to rest.
My heart broke. I was angry that doctors didn't have the answers.
During both cycles, I thought a lot about my future daughter. I thought about how I was fighting hard for us to have a good and happy life together, and how my actions were shaping our future—like how instead of choosing to marry my ex, I left a toxic relationship so she would have a healthy relationship to look up to. Or how I was doing this so I could hold her in my arms when she takes her first breath. I imagined her coming to me in her twenties with a broken heart or when she felt like her life was falling apart and how I would tell her about this year that changed me, to remind her of where she comes from and how strong she is. I would tell her how much I loved her before I ever met her.
Eventually, I picked myself up. I let myself feel proud for making it through two egg freezing cycles with nine frozen eggs and giving it my all.
All the while, the hormonal injections intensified the pain of my endometriosis. I could almost feel it growing inside me. Now, I was ready to tackle surgery. (Related: Lena Dunham Had a Full Hysterectomy to Stop Her Endometriosis Pain)
Going for a Second Surgery
About one month after my second egg freezing cycle, in January 2020, it was time for surgery. It was 3.5 hours long and the disease wasn't only on my reproductive organs—it was also on my appendix, near my kidneys, and my bladder. My ovaries were stuck to my uterus and abdominal wall. They operated on 10 different organs that day. The good news is that my surgeon was able to excise all of the disease.
Thankfully, he told me he believes my chances of getting pregnant have increased now that the disease was removed. He believes I'll be able to get pregnant naturally or through IVF or other fertility treatments when I'm ready.
This is common: Many people with endometriosis see their AMH levels increase after a successful endometriosis excision surgery, according to Extend Fertility. Surgery not only treats the pain associated with endometriosis, but it can also increase your chances of conceiving naturally, as well as through IVF or other fertility treatments.
The challenge is that since people lose eggs every year and the disease could eventually grow back (there's no way to know right now if it will), it's impossible to know how many years I have left to conceive—I could have 12 more years or three and I won't know until I'm ready to try. As my fertility doctor once told me, "Women who have even just one egg left in their body could still conceive; so much about conceiving is luck." (Related: Everything You Need to Do In the Year Before You Get Pregnant)
And, of course, there's always the chance that my endometriosis will grow back as it did after my first surgery. That's just another uncertainty I'll have to live with for now.
I want other women who might be going through a similar journey (egg freezing, endometriosis treatment, or struggling with fertility on their own) to know that they're not alone. It's a hell of a journey, but you may come out of it stronger and maybe even a louder version of you—so that you can also give a voice to those who still aren't ready for theirs to be heard or for those whose voices are being silenced or dismissed.
In spite of everything that happened in the last year, during my egg-freezing journey, I was able to take my career to the next level and excel at a job that I love. I moved to a new city (NYC from Tel Aviv), developed a steady workout routine, and learned to love how I feel in my body. After living in New York City for the last almost two years, I'm relocating back to Tel Aviv this month with my company to begin a new chapter. I also made new friends who are like soul sisters to me—they offered to come to doctor's appointments, and even offered to do my injections for me if I was too afraid.
This journey changed me and I've become the best version of myself. I created a beautiful life in the midst of chaos. For that, I'm thankful, but also proud.
Does this resonate? Feel free to contact the author, Jess Katz, by email.