Creating space and taking your time
🪞Reflections from MyAdvo Peer Advocates on egg freezing with endometriosis
2023 was exceptionally hard. I truly felt like I couldn’t catch a break. A year ago I fractured my spine in a boat accident. I went through major back surgery in January, recovery through February, then caregiving for my grandfather until he passed away in March, followed by more deaths in our family—a lot of grief and trauma concentrated in the first half of this year. All I wanted was for things to go back to normal.
Towards the end of summer, I started feeling fibroid symptoms. Symptoms I hadn’t felt before like needing to pee often or like I couldn’t ever empty my bladder (actually didn’t know these were symptoms before speaking with some of our peer advocates). My cycles were becoming longer, heavier, and irregular. And yet, I struggled to realize (read: accept) that my body and mental health were still reeling from the beginning of the year. I remember thinking when I got out of surgery in January, “Ok, how do I get back to normal?” But it felt like every time I would get up, I’d be tripped up again and land further than where I last started. Now that the fibroids were beginning to act up, I was asking myself: When do I need surgery? Can I hold off until right before I’m ready to get pregnant? What should I do about insurance knowing I’ll need it for surgery? I thought I’d be making a comeback in the back half of 2023, but to be honest, I just couldn’t keep up with the speed of my own life.
Does that resonate with any of you? When all you want is to “get back to before”—enter any chronic female condition: fibroids, endometriosis, adenomysosis, PCOS etc. That constant feeling of your health getting in the way and that utter lack of control. It wasn’t until this month after going to a functional medicine practitioner and speaking with some of our Peer Advocates, that I was able to accept that I was still going through it and that “going back to normal/before,” wasn’t going to happen.
When you have a chronic female condition, it’s so easy to beat yourself up that you can’t get back to the lifestyle or aspirations you had before symptoms or diagnosis. It’s especially defeating when fertility is at play. For this month’s newsletter, I wanted to understand how to think through the conundrum of getting through treatment and then trying to catch up on your life. I spoke with two of our Peer Advocates with endometriosis, Cait Reeves and Paola Galeano, to understand their perspective. You'll see that there is no right answer, but a common theme coming out of our conversation is acceptance of living with a chronic disease so you can thrive. In Cait and Paola's cases, planning for future children and taking the time you need to enjoy a pain-free body can coexist. As women with chronic female conditions, we learn to balance so many decisions all the time. I think back on this Sunday breakfast with Paola and Cait to remind myself why creating space is so important when life with a chronic female disease is a balancing act.
So, my 2024 New Year’s intention (yes, intention, not resolution because this is about adopting a new mindset) is to give myself more space—more space to take time with my changing body.
Endometriosis & Fertility
Cait and Paola both had two endometriosis surgeries and were advised to freeze their eggs. The stats say that between 30-50% of people with endometriosis may experience infertility (Source: Mass General). While Cait went through egg freezing, Paola decided she wasn’t ready.
For Cait, her doctor recommended freezing her eggs before 30, and they decided together it was best to wait until after her second endometriosis excision surgery (read more about her endometriosis journey here) to not aggravate the existing endometriosis. A big consideration was exactly when to freeze her eggs after surgery. Cait wanted to give her body time to recover, knowing the toll egg freezing can take, even more so for women with chronic female conditions. She also needed to plan financially, ultimately leveraging Carrot Fertility through her employer’s benefits. Before getting started, Cait worried the hormones she’d inject would trigger endometriosis regrowth when she had just gone through successful excision surgery. She approached her doctors with these questions and learned she could keep her Mirena IUD during the process, the only birth control that can go uninterrupted during egg freezing. This offered her peace of mind as the Mirena IUD had been working as her first line of defense in preventing endometriosis regrowth after surgery.
Cait underwent a single round of egg freezing in 2022 with NYU Langone, a year and half after her second endometriosis excision surgery. She did not have any endometriosis regrowth or pain that she knows of. However, she did experience pain flare ups due to her adenomyosis (a separate condition from endometriosis). She was able to manage the pain with heating pads and pain relievers until her hormone levels returned to normal a couple weeks after the procedure. Cait also developed Ovarian Hyperstimulation Syndrome (OHSS), a rare complication of egg freezing/IVF treatment when ovaries have an exaggerated response to the injectable hormones and grow too many follicles (Source: Mayo Clinic). It is more common in women with PCOS but not fully understood why it happens. Cait’s case was mild-moderate and resolved within a week, requiring followup ultrasounds and monitoring to avoid any further complications. In the end, the whole process of egg freezing was difficult and draining even if it was worth it for Cait. She needed to take into consideration her PCOS and adenomyosis in addition to her endometriosis and was thankfully working with a doctor who helped her think through what to apprehend and mitigate for.
Paola went through her second endometriosis surgery in 2021 with an excision specialist at Maiden Lane Medical in New York. The road to her second surgery was bumpy. Her first surgery was actually performed as ablation rather than excision. A big difference between the two surgeries is that ablation uses heat to remove the top layer of endometriosis tissue but that means there may be deep infiltrating endometriosis leftover. Excision removes all the lesions and related scarring (Source: Maiden Lane Medical). The difference between these surgeries was something Paola had to learn on her own while her endometriosis progressed to Stage 4.
When it comes to fertility, Paola grew up with the notion that getting pregnant would eventually help her endometriosis pain. It wasn’t explicitly shared with her as a “medical cure,” but it’s how her mother and aunts understood it as they also suffered from endometriosis pain, although they were never diagnosed. This isn’t an uncommon rationale. In fact, some healthcare professionals incorrectly recommend pregnancy as a way to manage or treat endometriosis (Source: BMC Women’s Health). Paola now knows through her almost 20-year journey with endometriosis that pregnancy won’t do anything for her endometriosis. Instead, her journey has made her appreciate and prioritize her body in a way that she describes as “spiritual.” She’s extremely aware of the toll preserving her fertility, pregnancy, or postpartum would have on her body and is deliberately choosing to enjoy this pain-free moment in time.
Deciding to Preserve Fertility
Paola shared how brutal her recovery was from excision surgery. It took her over a year and was complicated by additional health issues. These included a ruptured cyst and managing an abnormal pap smear that ultimately led to a Loop electrosurgical excision procedure (LEEP). When her doctor, similarly to Cait’s, recommended egg freezing, Paola just didn’t feel ready to take on more at the time:
My surgery was planned for March, and she [her doctor] was like, ‘Listen, I know that it's a lot, but I really need to bring the topic of egg freezing up to you. Do you want to do this? We can talk through it.’ I was just so overwhelmed with everything that was already going on that I was like, ‘No, I feel horrible. I've heard from my friends how hard it is on their bodies. I can't begin to process going through what my friends are going through and doing this.’
It opened up a conversation with her doctor about what pregnancy and childbirth may be like post-surgery. She was told there was a chance that she may not be able to have a vaginal birth and only be able to deliver via C-section, depending on how much of her cervix would need to be taken out as part of the excision surgery. This was extremely difficult for Paola to hear:
“I still want it on the menu. I don’t know that I want to order it right now, but I don’t want to take it off the menu.”
After her endometriosis surgery, she was reassured by her doctor that the amount of tissue excised did not necessarily jeopardize the potential for a future vaginal birth. However, after receiving abnormal pap smear results confirmed by colposcopy, Paola had to get a LEEP where more of her cervix was taken out. This is when her doctor shared that she may not be able to carry a baby to term and have to be induced prematurely around 8 months due to a shortened cervix.
Family Planning Post-Surgery
I resonated a lot with Paola and Cait’s take on family planning while managing chronic female conditions: Can we just enjoy our body? It can feel impossible at times to buck against the “biological clock” when you have a chronic female condition, especially when so many of your decisions to heal also impact fertility. Paola shared a beautiful reflection on how there was escapism in her pain from the trauma of suffering and not being validated since 14 years old. Now that she feels her body is relatively stable, she wants to crack open who she is and spend time discovering herself before having children:
“It's like a level of acceptance…like everything is a gift. I am now embracing it [endometriosis] so much. You see who your friends are. I feel really grateful that I have this window now. I'm feeling the best I've ever been. I'm happy. I feel like I get to enjoy life right now and that feels nice to have life experience before having kids, to fully know who I am.”
Knowingly putting your body through something like egg freezing to plan for the future becomes mentally and physically triggering when you’ve just gone through so much to rid your body of pain and exhaustion. Accepting, even welcoming, a moment in time when you can enjoy yourself despite your chronic female condition is precious.
Similarly, Cait has taken the space she was able to create to make her body feel better post-endometriosis surgery into her family planing timeline. For her, it’s also about prepping herself to feel strong before getting pregnant, knowing that in addition to endometriosis she is also working through other autoimmune health challenges:
“I want to explore all of this and try to see what makes a difference before I have to go there. I’m not going to be ready to try to conceive for the next few years, so I’m going to try and dig a little bit more and see what I can uncover. I feel really hopeful about it lately.”
What I appreciate the most about Cait and Paola is their optimism while acknowledging how difficult it is to thrive with a chronic female condition like endometriosis. Our MyAdvo breakfast discussion this month very much influenced my New Year’s intention of creating space for myself to just be, so there’s clarity, intention, and power when making large life decisions like becoming a mother.
With that, I want to thank you for following MyAdvo’s journey this year! Look out for more ways to get involved in our January newsletter!
Here’s to a compassionate and empowered 2024. Happy New Year!
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