Guest Post: Dealing With Stage 4 Endometriosis And A Solo Journey To Motherhood
Guest Post Submitted by Sabrina of @IVF_BABY_E
“From navigating infertility as a happily married couple, to doing it on my own… a journey I never thought I would face”
My TTC journey started in November 2019. I had already been taking prenatals since April of that year. I was excited about the idea of having a baby in 2020. That excitement quickly vanished when I found out I had a polyp and would need to wait until February 2020 for surgery to remove it. This wait felt forever. How naïve of me. If only I knew then what a whirlwind this would all be. In February I underwent the surgery and to everyone’s surprise, the polyp had disappeared on its own.
I underwent an MRI where an endometrioma (an endometriosis cyst) was observed. The ultrasound tech, unknowing this was news to me, asked me what my plan was about the endometrioma. She told me I had an advanced stage of endometriosis. I didn’t believe her. I thought there was no way. I had spent the better part of the last decade asking doctors if I had endometriosis. I was told time and time again, no I didn’t. I went to my car, googled endometrioma, and started to bawl my eyes out. “Endometriomas are the second most detrimental health condition to a woman’s reproductive system.” Ah f*ck!
Endometriosis is characterized by the presence of tissue similar to the endometrium, located outside of the uterus. These fragments are different structurally and behave differently than the endometrium. It can cause pain, infertility and organ dysfunction due to inflammation, and invasion into structures of the body and scar tissue. It affects approximately 1 in 10 individuals assigned female at birth, and takes an average of 7 years to diagnose. Excision surgery is the golden standard, and there is no cure.
Fast forward to May 2020 and I was at my first fertility clinic. A lot of testing was done to check my hormones (E2, LH, FSH, etc). Everything looked fine until they checked my AFC (antral follicle count - the number of follicles that are seen at a baseline. A baseline is done between days 3-5 of your menses). Mine was lower, and one of my ovaries was fused to an organ, making it hard to access. Multiple more visits were had, including visits to the hospital, multiple MRIs and CTScans, countless ultrasounds and blood work. In the meantime, I met with an endometriosis surgeon and had my first consult in September 2020. Due to Covid-19, the wait for surgery was long.
I realized my fertility clinic wouldn’t be the best for me, so we parted ways and I found a new one 5 hours away. In December of 2020, I met with my new RE. We had a plan. I would do an egg retrieval, wait for my endo surgery, and then do a frozen transfer. My husband and I were on the same page (or so I believed). They did more tests, and again, another road block. My AMH (the hormone that predicts how many eggs are left in the basket) had dropped drastically. There was no explanation other than that my endometriosis was aggressive. My first egg retrieval was cancelled. And then again. Finally, after our third try, it was a go. I primed my body with estrogen, testosterone and progesterone for 25 days, and then did injections for 16 days. I did approximately 50 injections in those days and about 12 blood tests.
The day after I turned 34, I went in for surgery for my egg retrieval. They retrieved 7 eggs, 5 of which were mature. I received news that 4 highly graded embryos made it to blasts (fertilized eggs go through the motion of dividing until they turn into blastocysts typically between days 5-7). I was shocked. I cried, many happy tears. We then had to wait another 3 weeks for PGT-A (this stands for preimplantation genetic testing for aneuploidy), AKA they wanted to know how many of those blasts were chromosomally normal. To give a little bit of background, approximately 50% of embryos are normal in your 30s. And that is exactly what we ended up with. Two perfect little embryos back in the freezer.
On June 8th, 2021, I went by myself to the hospital for my endometriosis surgery. I was scheduled for a 2 and a half hour surgery, which turned into 4 and a half hours. The disease had spread and was far more advanced than my surgeon had anticipated. My pelvis was obliterated, my bowels twisted, my ovaries were stuck to other organs, I had my appendix removed, and endometriosis scar tissue was found on my diaphragm. Imagine waking up and getting this news by yourself! This is a day I’ll never forget. I was diagnosed with Stage 4 + endometriosis. I’ll forever be thankful for my surgeon. He removed all of the scar tissue and adhesions, except my bowels and diaphragm. I will need a bowel resection down the road and the lesion on my diaphragm will have to be removed with a thoracic team present to mobilize my liver. Only about 1% of individuals who undergo excision surgery are found to have diaphragmatic endometriosis.
My husband and I spoke and decided it would be a good idea for me to take the summer to recover from surgery and get stronger again and we would do a transfer in the fall. Summer came and went and I was preparing for our first embryo transfer. Then, on the day before my baseline visit for transfer, my husband dropped a huge bomb on me. One that would forever change the course of my life. He no longer saw the big picture between us, the last two years had been too difficult, and he no longer wanted to have children. Blind sided by this news is a huge understatement. In my heart, I truly felt like I was in a happy marriage. Yes, I was aware that the last couple of years were far from perfect, and doctors’ appointments consumed our every thought, but I thought this was just a season and we would be able to get through it. I truly did. I never thought I would be separated, let alone heading into a divorce.
So where does this leave me now? Having children has always been very important to me. I’ve decided to embark on this journey as a “Solo Mama By Choice”. The road ahead won’t be an easy one, it won’t look as I always envisioned it. In my heart, I know that I’ll be ok. I have fought with every fiber of my body for the past 24 months.
This journey has taught me a lot. It has taught me to be a more compassionate woman, to advocate for myself and for others, to be a voice in the infertility and endometriosis community. I have found my voice. I continue to share my journey so that hopefully no other woman going through this has to ever feel alone. We don’t often talk about how difficult infertility can be on couples. We hope to be the ones that come out on the other side, stronger than ever. Unfortunately for some, it doesn’t work out that way. And for me, this is my reality.
I’ll end on this note. There is nothing that I can’t do, I am stronger now than ever. Finally, one day my baby will be old enough to know how badly they were wanted and how much they were loved before they were even here.
- Submitted by Sabrina of @IVF_BABY_E
