Getting to the other side of endo
A 14 year journey to feeling better with endometriosis
I wanted to start this month’s newsletter by acknowledging how harrowing and traumatic October has been, especially for the Jewish and Palestinian communities and those affected by gun violence. The tragic bloodshed and divisive vitriol happening across the world, here in the US, and on our screens has been unbearable.
The weight of the daily stress and anxiety is undeniable. That’s something that I hope everyone can acknowledge at least, and perhaps treat themselves with more compassion during these distressing times, extending some of that grace to others. Especially for women with chronic female diseases, that self-compassion is so important right now because stress and anxiety can cause symptoms to flare up, or affect recovery if you’re about to go through treatment or surgery. I finally let myself admit that my fibroid symptoms have been getting worse. My periods have gotten longer, more painful and intense than over the summer.
Being a peer advocate this month gave me a sense of hope. It felt grounding to help another woman by sharing what I’d gone through in the past with fibroids, adenomyosis, vaginal and uterine septums. Whether that was giving a woman space to express their truth dealing with chronic female diseases or sharing my story to help a woman figure out their next step, it just felt hopeful to help each other when the times we’re living in are about pulling each other apart. It felt safe being part of a community of women collectively learning how to thrive despite their chronic female diseases and shining a light for future women to find the path of least resistance to healing.
Cait Reeves is one of these brave women part of MyAdvo’s Peer Advocate Network. Her health story includes battling endometriosis, PCOS, polyps, a uterine septum, and Hashimoto’s. She’s been working through her chronic female diseases, especially endometriosis, since 14 years old. She was only formally diagnosed with endometriosis 7 years later, not uncommon given women in the United States on average suffer 10 years before receiving a proper diagnosis. Endometriosis affects 1 in every 10 women but the number is likely higher given it takes so long to diagnose the disease and often goes under reported. Cait’s undergone 2 excision surgeries for her endometriosis, which also included removal of polyps and the uterine symptom. She’s graciously shared her story with MyAdvo in the following interview:
MyAdvo: We met “on the other side” of your endometriosis. You’ve been able to manage your pain and symptoms post-surgeries, living for the most part without debilitating pain. Can you share what your symptoms were like before and your journey to a formal diagnosis?
Cait Reeves: I got my first period in eighth grade. Very early on I had excruciating periods lasting up to two weeks, with such heavy bleeding I would ruin my bed sheets and jeans all the time. I’d miss school, or end up laying in the nurse’s office in pain. When my mom first took me to an OB/GYN at 15, the doctor offered the birth control pill as a solution, but gave no insight into the problem. Though the pill shortened and regulated my period, I still experienced heavy bleeding, clotting, pain, and some pretty bad side-effects from the pill. For years, we rotated through a number of different pills trying to find the one that helped the most.
By sophomore year of college, my pain became debilitating. This prompted the first mention of the possibility of endometriosis by my hometown OB/GYN. This was also the first time I felt dismissed about it. I was told there was no way of knowing for sure without surgery, which she didn’t want to put me through. She advised me to take my birth control continuously to skip my period, and she ultimately had to prescribe me Vicodin because my pain was unbearable, and prescription ibuprofen was not helping. By senior year, the agony that used to present only during my period, became more and more frequent throughout the month. To the point where I would be curled up in a ball on the floor screaming and crying.
By the time I graduated college, I finally sought a specialist. I had been working with a naturopath in my hometown for autoimmune issues, who suggested I see Dr. Anthony Luciano, a surgeon who taught at UConn. I came to that appointment armed with the most descriptive language I could think of to describe my pain to a male doctor: “barbed wire or a very sharp knife is carving my insides like a pumpkin, and back pain that radiates down the back of my legs like electricity.” Seeing Dr. Luciano was the first time I felt taken seriously about my pain and the need for intervention, instead of kicking the can down the road.
MyAdvo: What are your thoughts on surgery being the only definitive way to diagnose endometriosis?
Cait Reeves: I think it depends on who you're talking to, and how experienced the doctor is with endometriosis. Surgery is the only way to confirm the diagnosis, but there are symptoms that can point to endometriosis. Since many OB/GYNs are conservative and think of surgery as a last resort instead of a diagnostic tool, what often ends up happening is a delayed diagnosis until symptoms become debilitating. In my experience, if you are extremely assertive about your pain and the other endometriosis clues are present, most doctors today will at least acknowledge the likelihood of endometriosis and be able to intervene. If you feel your pain is abnormal, seeing a doctor who is confident treating endometriosis is so important. Throughout my journey, I saw doctors who were far less confident about endometriosis and it delayed my diagnosis for years. Whereas seeing a specialist, he confidently suspected my condition and was able to recommend surgical intervention. The problem is a lot of women don't even reach a trusted specialist who can validate their experience. I found Dr. Luciano in a desperate state.
MyAdvo: So what should you look for when picking an endometriosis specialist?
Cait Reeves: Definitely a doctor whose practice focuses on endometriosis or complex gynecologic conditions. As it does for me with my PCOS and polyps, endometriosis can coexist with other conditions (co-morbidities). So having a doctor who can help manage multiple conditions can be very valuable. As far as surgeons go, I think it’s important to have someone with experience handling the most complex of endometriosis cases because there is no way of knowing the extent of your endometriosis until surgery. Researching how doctors prioritize staying current with new treatments, testing, diagnostic tools, techniques helps to identify them. I also look at the details of their training (i.e. fellowships), hospital or network affiliations, years in practice, and publications.
The field of endometriosis still has many unknowns and is constantly evolving, so I think it’s best to seek doctors who prioritize staying current with new treatments, testing, diagnostic tools, and techniques. I’ve had the most success with specialists like Dr. Elizabeth Poynor in NYC, who integrate holistic and personalized management techniques. If a doctor’s work with endometriosis is exclusively hormone management, I would keep looking. If they have a one size fits all approach, I would keep looking. Surgery and hormones can only do so much for endometriosis because it comes back, so lifestyle and nutrition make a world of a difference to manage the disease. Especially for someone like me with autoimmune diseases (Celiac and Hashimoto’s), which is commonly seen with endometriosis.
I’ve also learned that I needed to lean on more than just one doctor to manage my endometriosis: a surgeon/gynecologist, a reproductive endocrinologist, an acupuncturist, a functional practitioner, and a pelvic physical therapist.
MyAdvo: What was surgery and recovery like? And what advice would you give to women about to go through it?
Cait Reeves: I went through 2 surgeries and both were different, which is typical. Not only does endometriosis look and feel different for every woman, but it’s unpredictable in the individual as well because it can grow and regrow anywhere.
Seeing Dr. Anthony Luciano was the first time I felt taken seriously about my pain and the need for intervention, instead of kicking the can down the road. I had no reservations about surgery and I was ready with questions throughout the entire process. I asked about treatment options beyond the birth control pill, why the pill hadn’t worked for me, whether I would need more than one surgery, if surgery would impact my ability to get pregnant, how an IUD would help with pain, and why the IUD had never been mentioned as an option before. My first surgery formally confirmed my endometriosis diagnosis after a 7 year journey. The surgery was laparoscopic: 3 small incisions – one through my belly button and two near the groin area. Endometriosis was excised from my ovaries and bladder, and polyps and a septum were also removed from my uterus. The Mirena hormonal IUD was placed to manage the regrowth of endometriosis and polyps, and shrink adenomyosis. Aside from adjusting to the IUD, the recovery was pretty speedy, requiring about a week off work, with minimal bruising from the incisions.
Three years later I would need another surgery. In 2019, I started having issues with rupturing cysts, hair loss, acne, and was diagnosed with PCOS. I was referred to an amazing Reproductive Endocrinologist, Dr. Margaret Nachtigall, who helped me manage the PCOS. But by 2020, my endometriosis symptoms were raging again. The pain was different this time. In addition to the carving pain and uterine contractions, I now also felt burning, and deep, dull aches throughout the month. Dr. Nachtigall sent me to a doctor she trusted with whom she’d taught at NYU and who specialized in endometriosis—Dr. Elizabeth Poynor. Dr. Poynor listened, validated, and together we agreed that another surgery would be worthwhile.
She performed my second surgery in 2020, this time a robotic excision of endometriosis found on both of my ureters (which connect my kidneys to my bladder). This surgery was longer and more involved because the endometriosis was more advanced. It had graduated from Stage 2 endometriosis to Stage 3.
If you’re about to undergo surgery, I recommend giving yourself more time than you think, so you won’t have to stress. It’s so important to heal in a healthy and comfortable environment. I’d make sure you have someone to help you as you recover even if you think you’ll be fine on your own, in case you need help with anything. I also recommend asking your doctor how best to get in touch with them so you can keep open lines of communication to ask follow-up questions to manage your recovery in case you run into any issues. This was crucial after my second surgery because I had complications with Covid. Because there’s no cure for endometriosis, it’s also important you know your symptom management plan after surgery to keep it under control and prevent regrowth as much as possible.
MyAdvo: Since there’s no cure for endometriosis, what does that mean for you post-surgeries and treatment?
Cait Reeves: 14 years into my endometriosis journey and only as of very recently, I finally feel hopeful that endometriosis is something I can keep under control. Following my second surgery, we made a number of treatment decisions to prevent regrowth. We tried Orilissa for a few months, then went back to the Mirena IUD with supplemental norethindrone. I made lifestyle and diet changes that have helped significantly. Adenomyosis pain is more of a challenge as the only cure for it is a hysterectomy, but I’ve learned to identify triggers that flare my cramping and have ultimately cut down on those things. For me it’s things like coffee, red meat, wine, and drinking out of plastic. I’m strict about eating a gluten, dairy, soy, corn-free organic diet for my autoimmune issues, which helps keep inflammation down and has noticeably decreased my pain. My endometriosis and adenomyosis have been under control for about a year now.
I’d love to regulate my endometriosis more naturally before attempting to get pregnant. In my ideal world, synthetic hormones wouldn’t be necessary, but I am grateful for the success I’ve had with the Mirena IUD and know it’s played a crucial role.
I’m a big believer in holistic medicine and how interconnected the systems of the body are. With the help of my doctors, I’ve begun digging into root causes of my hormonal and immune dysfunction, like gut health and environmental triggers that could contribute to my endometriosis. For example, I recently learned my childhood home was water damaged and mold ridden for many years, and testing revealed high levels in my system. One type of mold interferes with immune function while another mimics estrogen, which could play a role. I also learned through testing that I have a double genetic mutation of the MTHFR gene, which means my body doesn’t detox well, so I’m especially sensitive to endocrine (hormone) disrupting products like plastics, pesticides, and other synthetic materials. It’s all super interesting and gives me hope that tackling these things head on can help. I’m trying to take a look at the whole picture now and have some excellent doctors in my corner. I do believe there’s a WHY behind the endometriosis, and I’m excited to try and piece that puzzle together next!
Cait is part of MyAdvo’s Peer Advocate Network. If you’d like to connect with her to learn more about her experience with endometriosis, join our our community here!
MyAdvo Monthly Reads
(policy, podcasts, research, trends & more to advocate for yourself)
⚖️ California passes a new law (effective January 2024) guaranteeing up to 5-days off for miscarriage or reproductive loss (failed adoption, failed surrogacy, stillbirth, or an unsuccessful assisted reproduction).
⚖️ Infertility definition gets expanded to include anyone needing medical intervention to achieve a successful pregnancy as an individual or with a partner.
📺 Bindi Irwin shares on TV what it was like living with endometriosis before going through surgery. You can also read her post on Instagram here.
📚 Biggest breakthrough in cervical cancer treatment in decades. Using a course of existing, inexpensive drugs ahead of usual radiotherapy, decreased the risk of women dying or the cancer returning by 35%. You can read the study here.
💉First person in the world to receive breast cancer vaccine shares her trial participation.