I Froze My Eggs After Getting Diagnosed With Endometriosis In my 20s

Age: 30
Location: New York, NY
Occupation: Senior manager in technology
Household income: $110,000

Every single month, I’m in excruciating pain for the first three days of my period. It’s gotten worse each year since I got my first period at 14 years old. Now, at 25, I can’t take it anymore. About a month ago, my cramps were so bad that I was on the bathroom floor at work, close to passing out from the twisting and stabbing pain in my pelvis, abdomen, back, and legs. I’ve bled every day since then. Up until this point, I’ve gotten no answers from doctors — just birth control and heavy painkillers, which haven’t helped. But now, they’re paying attention and running tests, including ultrasounds and an MRI.  

Finally, I get a diagnosis. The doctor tells me that I have endometriosis, which means that tissue similar to the tissue that normally lines the inside of the uterus is growing outside my womb and may have implanted in other organs, such as my ovaries, bowel, bladder, and fallopian tubes. I’ll need surgery immediately. Googling the disease leads me down a path of worry. Will sex always hurt me? What if I can’t have kids? What if this pain never goes away? Why did it take this long for doctors to listen to me!?

Cost: $150 total. $50 for my latest pack of birth control pills, $20 for a heating pad, and $20 copay for each of four doctors' visits. All the ultrasounds and the MRI were covered by insurance. 

After three and half hours of a laparoscopic surgery to excise my endometriosis, I learn that my endometriosis was in stage IV: I had deep implants and adhesions, and the disease spread to several organs, including my bowels, near my kidneys, and my bladder. But the endometriosis did not block my fallopian tubes, so my doctor tells me that I shouldn’t have any issues getting pregnant when I’m ready. Even though I’m only 25 and single, I cry with joy from the news. Being a mom one day is very important to me, especially coming from a big family with sisters. As the granddaughter of three Holocaust survivors, whose grandparents lost their parents and siblings in the death camps, I feel passionate about having children as a sort of redemption, after what was taken away from my family. 

Although the surgery recovery is brutal and I’m in pain for three months, by June I feel better and am pain free for the first time in 11 years. It’s life-changing. 

Cost: $0. Insurance covers my entire surgery. 

I’m 28 years old and newly single — after ending a two-year relationship with a toxic ex — when I start feeling some pain again. I decide to go to another endometriosis surgeon who is renowned in his field, Andrea Vidali, MD, of Braverman Reproductive Immunology & Endometriosis Surgical Center in New York City. After doing a physical exam and ordering an MRI, Dr. Vidali tells me he believes my endometriosis has grown back and that I need to have another surgery. 

Though I tell him I’m nowhere near ready to have a baby, Dr. Vidali strongly suggests running fertility tests, and notes that I may want to consider freezing my eggs before the surgery since endometriosis can impact fertility. I’m completely caught off guard. I schedule an appointment with a fertility specialist and they run a lot of tests. But I’m naively not nervous at all. I trust that what my first surgeon told me is true, and I won’t have any fertility problems. 

Cost: $20 copay. My health insurance covers the initial diagnostic fertility doctor visit, though nothing after that. 

A few days after my fertility check, the doctor calls me with more bad news. Apparently, I have the number of eggs he’d expect to see in a person who’s 10 years older than me. He recommends freezing my eggs as soon as possible, since I’m not trying to get pregnant in the next year. I begin crying on the phone. I get a second, third, and fourth opinion in the next few months, and all of the other doctors agree that egg freezing is my best option if I want to increase my chances of having biological kids. 

Dr. Vidali and I discuss whether I should freeze my eggs before or after my next endometriosis surgery. There’s a concern that if there are cysts on one of my ovaries that need to be removed, the surgery could affect my ovarian reserve, or egg count, negatively. Plus, the estrogen hormones from an egg retrieval cycle could cause my endometriosis to grow back. But there’s also a downside to doing the surgery after the egg freezing: The presence of endometriosis can affect egg quality. It’s a big dilemma, but ultimately I opt do the egg retrieval before my endometriosis surgery.  

Luckily, my company helps pay for egg freezing and other fertility treatments through a benefit called Carrot Fertility, which is separate from my health insurance. They’ll cover 90%, up to $20,000 in my lifetime, for all fertility treatments. But this is still a big investment and a lot to put my body through. If I didn’t have this company benefit, it would have been hard for me to afford treatment on my own. 

Cost: $125. That includes $80 in total for copays for each fertility doctor diagnostic visit as I get different opinions, and $45 for all blood tests, ultrasounds, and doctors visits with my fertility specialist. (Without my company benefit, the latter would have cost me $450.) 

On the third day of my period, I go to the fertility doctor’s office to do a blood test that will clear me for beginning the cycle of fertility drugs I need to take before my egg retrieval. I’ll have to inject myself with drugs every night around 9 p.m., and will start taking an oral medication too. 

But after a (painful) intravaginal ultrasound, my doctor has bad news. Even though I had 15 follicles (which release eggs) the last time we checked, this month I only have six. This means he can’t move forward with the egg retrieval cycle, and we’ll have to try again next month. A wave of anxiety takes over. I wonder if it means my fertility is rapidly decreasing every month. Tears silently run down my cheeks and all I want to do is scream, but I contain myself. My doctor says this could just be “a fluke.” He assures me that if next month my follicle count is similarly low, they’ll run more tests. 

I sob the entire 15-minute walk to work after the appointment, but then pull it together because I don’t want any of my colleagues to know what I’m going through. Even though I have a huge support system, I feel so alone since I don’t know anyone else like me who is going through what I’m going through.

Cost: $20, for my copay.

November 2019
My first egg freezing cycle 

A month later, it’s time to try this again. This time, I have 15 follicles and the doctor approves me for an egg retrieval cycle, and I’m set to begin the course of fertility drugs. When I start my injections, I have a brief moment where I feel bad for myself. Most people go through this with a partner, and are ready to have kids. Meanwhile, I’ve decided to do the bulk of the injections on my own in my apartment. I try to remind myself there is a power and strength in that. 

Two weeks and more than 30 injections later, it’s the day of my egg retrieval. I go in for the procedure and my parents are with me. I’m feeling super-bloated because of all the hormonal injections I’m taking. I wobble like a penguin as I walk. I hope that this will be the only cycle I’ll have to go through, because it’s so expensive and it’s taxing on my body. I feel exhausted, and my endometriosis is flaring up, but I also feel positive and proud of myself for making it this far. 

I wake up from the procedure and I immediately ask them how many eggs I got. My doctor tells me that he got 11 eggs and that he will call me back to let me know how many of those eggs are mature. I feel disappointed that I didn’t get my target number of 15 to 20 but I try to remain positive. 

The next day, though, my doctor calls me and tells me news that shatters my heart in an instant. Only four of my eggs are mature. He says that if we increase my medication dosages, I may have a much better outcome with a second cycle. The four mature eggs they retrieved will be frozen and stored in a special facility until I'm ready to use them.

After a week of letting myself sulk and feel everything I'm feeling, I gather my strength, and decide that I will go through one more cycle and egg retrieval before my endometriosis surgery. I’ll make it through the pain and flare ups until then. 

Cost: $1,182 total. The actual costs of the procedure, prep, medication, and egg storage is $11,825.37.  Due to my company benefit, I get reimbursed for 90%, but only after the procedure is completed. I need to borrow about $12,000 from my parents to help me pay for everything up front. I am very grateful that they are able to help me. 

I begin my second cycle. This time, my company benefit is running out, so I decide to apply for drug company savings programs like Compassionate Care and ReUniteRX for my medications. I also ask my clinic if they can offer me a special discount for this cycle since I am struggling to pay for this all on my own — especially because I’ll also have to pay for my upcoming endometriosis surgery. They offer me a small discount, which makes a difference. I am taking higher doses of medication this cycle, and at a check-up my doctor tells me I have 17 follicles this time. Things are looking good, and I trust in the process.

After two weeks of taking injections, it’s time for my second egg retrieval. When I wake up from my procedure, my doctor tells me they got 12 eggs. I feel happy with this number and I wait for the call to find out how many of these eggs are mature.

But when the phone rings, he says only five of them were mature. The doctor says this could be because of my endometriosis. He doesn’t suggest going through another cycle because my body needs to rest. My five mature eggs will be stored with my four mature eggs from my previous cycle in the same egg storage facility. With nine frozen eggs, my fertility doctor believes I will have the chance to get pregnant through IVF in the future. He also tells me that I may be able to get pregnant without medical intervention, too — there are so many unknowns.

My surgeon says I should prioritize pregnancy within the next two to three years if I can. This is stressful, since I’m still nowhere near ready to try to get pregnant — I don’t even know if I will find the right partner in time for that. I wonder if I should consider becoming a single mom in a year or two. 

Meanwhile, I’m grieving the loss of a potential baby I never knew in a way I can’t explain to anyone. I feel like I have no right to grieve since these weren’t even embryos, and I wasn’t even trying to get pregnant. Still, I thought a lot about my future daughter and how much I already love her during both cycles. I daydreamed about conversations we would have when she was grown up and going through something challenging, and how I would tell her all about how hard I fought for her, and how strong she is. I love her fiercely, and I’m so afraid I will never meet her. 

Despite these fears, I let myself feel really proud that I made it through two egg freezing cycles. Now, I’m ready for endometriosis surgery which will hopefully take away my physical pain.

Cost:  $2,434.45. Without the Carrot benefit, the procedure, doctor’s visits, and meds would have cost $10,532.02. 

It’s the day of my endometriosis surgery with Dr. Vidali. The surgery lasts about four hours. He excises endometriosis — again, stage four — from 10 of my organs. Luckily, he was able to remove all of it. He believes that the endometriosis created a toxic environment for my eggs, and that’s why they were struggling to mature. It’s possible that if I do another cycle after my surgery, it could yield better results. But I don’t want to risk the endometriosis growing back from the hormones, and I can’t afford another cycle right now since I maxed out my company benefit. 

The surgical recovery is brutal once again. I experience excruciating pain for two or three months, but finally my body heals and I begin physical therapy. I also begin seeing a psychologist who specializes in women’s health issues so that I can start to emotionally unpack everything I’ve been through in the last year. During the cycles, my focus was on powering through to the next step. Now that I’m on the other side of these procedures, I feel ready to talk about everything. She helps me heal.

Cost: $5,020. $5,000 for surgery with my out-of-network benefits. The hospital fees are covered by my insurance. Plus, a $20 copay for a weekly psychologist visit.

Total Cost: $10,651.45 total. $8,951.45 for all treatments and procedures and $1,700 for 17 months of egg freezing storage. I’ll continue to pay $100 a month until I use the eggs, which can be stored for 10 years. If I didn’t have my Carrot benefit, the total cost would have been close to $30,000.

Reflection: 

To this day, I haven’t been able to find anyone else who is young, single, and found out she had fertility issues when she wasn’t trying to actively conceive. It’s heartbreaking to feel alone through these losses, but I feel empowered to share my story to help others. Going through all this has taught me a lot about resilience — something I really needed during the COVID-19 pandemic over the past year.

Although I’ve thought about doing another egg retrieval cycle, I’m going to wait for now. When I get to a place where I’m ready to have children, I’ll reassess. Until then, I’ll live in the moment and can look back at everything I went through, feeling really proud of myself. I'm grateful for my support system, and even for my fertility journey, which has helped me discover what I truly want in life.