Endometriosis and IVF: My Personal Experience

Trying to conceive (TTC) is challenging for many. Did you know that 10 percent of women in the United States struggle with infertility a year? I am one of them. In this post, I tell all about my journey getting pregnant with IVF. This personal post details my personal experience with endometriosis and IVF and the process that lead to my current pregnancy. If you have any further questions about IVF, please seek a medical professional.

If you are in the process of getting pregnant with IVF, please know you are not alone. Feel free to send me a DM on Instagram, @coco.on.fifth, or an email at chanel@cocoonfifth.com, I’m happy to chat. I can also refer you to some great Facebook groups that I found helpful throughout my journey. Lastly, a book I highly recommend to anyone going through this is called It Starts with the Egg. I took many of the recommended vitamins in the book, but you must consult your doctor before you add those to your list.

Prioritize your Fertility

I want to start by saying, if you think you want to be a mom, please keep your fertility in mind. Age does matter. Whether you are single, dating, in a long-term relationship or married, I recommend you talk to your doctor ASAP. Many people will tell you, “you have plenty of time.” If I knew that I had a low Diminished Ovarian Reserve at age 30 (I am 34 now), I would have planned things very differently. Knowing what I know now, I would have asked for a fertility blood panel at an earlier age. Although this probably would have been out of pocket, it would have been worth it.

Every person is different and there are many different causes for infertility. No matter your situation, knowing your egg reserve early on is key. Getting pregnant with IVF is not for everyone, but it’s a great alternative to consider if you are having a hard time conceiving.

My Story Begins with Endometriosis and IVF

It was a sunny day in July and I was looking forward to my appointment with a Reproductive Endocrinologist at NYU. I did no prior research other than a quick Google search to learn more about her experience, but she came very highly recommended by my OBGYN. I thought this would be a quick appointment to let me know everything was ok. Little did I know…

We were in the middle of the Covid-19 pandemic, our vacation was cancelled, we had not seen family in months and we were ready to start our little family. To give you some background, after getting off the pill I was having very irregular menstrual cycles. After a few months of trying to conceive naturally, I decided I wanted to get checked to make sure everything was okay. I met with my fertility doctor and she was amazing! I was very lucky that my OBGYN recommended her. She understood where my husband I were at in our lives and provided me with a plan specific to our needs. The plan included trying naturally with ovulation monitoring, with the assistance of a few medications if needed (I can’t exactly remember what it was, but it did not include any shots).

After my chat with the doctor I proceeded to do bloodwork and an ultrasound for an antral follicle count. This might sound foreign to some of you, as it was to me, but this helps determine how many resting follicles you have in each ovary. It’s also a good indicator of what your ovarian reserve is, meaning how many eggs you have. Note: you are born with the amount of eggs you will have in your lifetime and they decrease with time.

Immediately after the ultrasound, my doctor said I should consider IVF because my follicle count was low. She said I have a condition called Diminished Ovarian Reserve (DOR). We were just waiting for my bloodwork results for confirmation. My brain just blanked out at that point and I started to cry. What does it mean? Will this mean I won’t be able to have babies? Will they even get one egg after doing IVF? I had so many questions.

I headed home, cried, and then told my husband about the news. We quickly scheduled a call with the doctor the next day because I could not articulate or remember most of what she told me. Everything happened fairly quickly. The clinic was very organized in calling the insurance, sending over the medicine protocol for my IVF retrieval treatment to the pharmacy and scheduling the mandatory orientation for us to begin the process. Then the process really began…

This Was My Experience With Endometriosis and IVF

Three IVF retrievals. One retrieval gave us one genetically normal embryo (we decided to test all embryos). The second retrieval did not give us any embryos to send for testing. The third retrieval gave us three genetically normal embryos.

Two IVF transfers. Since my hCG hormone (the hormone that detects pregnancy) never reached the necessary level, the first transfer was unsuccessful. The second transfer was successful and I am currently pregnant with our little miracle.

Two Biopsies, one that would test for traces of endometriosis. After the first transfer failed, my doctor knew I wanted to do every test possible to prep for the next transfer. We only had three embryos, so I did not want to run the risk of another failed transfer because of something I could have prevented. I know there are many factors that can cause a failed IVF cycle, but if there was something that could help increase my chances for success, I wanted to do it. Take note that not all clinics support these particular biopsies. Some clinics believe you can get pregnant without them and do not support the science behind them. They were not invasive based on the treatment plan my doctor created for me and it got me pregnant without having to try multiple transfers. Needless to say, I am all for them.

Endometrial Receptiva Analysis (ERA)

I had read about a particular biopsy called Endometrial Receptiva Analysis (ERA). ERA tests how many days of progesterone you need before a transfer. The prep work includes taking medicine the same way you would for a transfer. The day of the “transfer,” you do the biopsy instead of actually transferring an embryo. My doctor agreed ERA would be a good course of action since the process is pretty straightforward. The results came back negative, no need to do anything different.

ReceptivaDX Testing

This biopsy was new to me. I had no idea ReceptivaDX Testing even existed, but once the doctor explained it to me I knew I had to try it. This biopsy tests for any markers of endometriosis, a leading cause of failed transfers. I have always had painful menstrual cycles so I knew there was a high chance the results would come back positive. I was right and, after the test, I received a positive result.

IVF and My Endometriosis Diagnosis

To be clear, I did not get a Laparoscopy. If you are not familiar with this, it’s a surgery that allows doctors to view inside your stomach and remove tissue caused by endometriosis. After going through the testing that i’ve gone through, I’ve learned endometriosis can be hard to diagnose. I always complained about painful periods and constant pain throughout the month. When I would bring it up to my doctors not much attention was ever given.

I never pushed for more testing and honestly just learned to live with it. I remember one time going to the ER because I had such bad pain on one side of my groin. Two other times I had ultrasounds to make sure my ovaries were okay because I was suffering from so much pain. The ultrasounds concluded that everything was normal. I thought about endometriosis during the beginning of my IVF journey but never really pushed for further tests.

After the first transfer failed my doctor recommended the ReceptivaDX biopsy. This tests for markers of Endometriosis and ranks you on a scale from 1-4. I came at a 2 from the scale. This is not a biopsy that is widely supported by the medical field but I strongly believe the results with my treatment for it helped me get pregnant. You can still get pregnant and have a successful pregnancy with endometriosis, depending on the severity.

However, after all the work it took to get our embryos I did not want to take the chance. I believe there is such thing as Silent Endometriosis and I think I fall in this category. My doctor and I plan to further explore this after my baby is born.

Lupron Depot Shots

Lupron Depot Shots are a very common way to treat endometriosis and they do not require surgery like a laparoscopy surgery. They happen to be very controversial and, if you Google it, it can look quite scary. The medication comes in different doses. My doctor prescribed me the smaller dose: one shot a month for two months. One of the big concerns taking this medication is bone density loss. I was told this is not a concern for short-term use.

Overall, my body reacted okay to this medication. I had hot flashes and some aches but they went away. The worst part was waiting around for two months!

The Cost of Getting Pregnant With IVF

Whether or not you have good insurance, getting pregnant with IVF is expensive. Depending on the amount of cycles, you could end up paying out-of-pocket. Our insurance covered one round of IVF, but we paid for the other two. Medication was covered for the first round of treatment, but we ended up paying for the other two rounds. The medicine is expensive, so I recommend you call around to your local pharmacies that carry fertility medication and compare prices. I also got some of my medication through Freedom Pharmacy. On average, treatment in NYC can cost around $14k-$20k, not including medication. Here is a non-profit organization that helps families financially with infertility, giftsofparenthood.org.

Thank You For All Your Support

From my family, to my close friends, to the medical staff at NYU Langone Fertility Center (especially my wonderful doctor), and the friends I’ve met as a blogger, I am so grateful for all the well-wishes and advice I’ve received during this time. At first, I did not speak to many about my experience with endometriosis and IVF, but as time went on, I started to open up. There is so much information out there surrounding IVF, but there is something special about hearing experiences from the people that you know. My husband and I are expecting our little bundle of joy in December 2021 and we cannot wait! You can view my announcement post here.

If you enjoyed this post about my experience with endometriosis and IVF, you may enjoy my related posts about motherhood like “Must-Have Maternity Essentials for New Moms” and “Bump-Friendly Dresses for Before and After Your Pregnancy.”

Photos were taken by Carolyn from Tesora Photography.

Note: This post is based on my personal experience with endometriosis and IVF, for any medical advice please consult your doctor as I am not a medical professional.