Endometriosis Flare-Up: My Endometriosis Story

You might wonder why I recommend and follow an anti-inflammatory diet.

In this article, I share my story (the condensed version) of eating an anti-inflammatory diet with endometriosis and kidney cancer and resources for learning more about endometriosis. 

As a dietitian, I’ve spent almost 20 years learning about nutrition in undergraduate courses through my master’s in nutrition and continuing education courses. 

I gained real-life experience:

  • working with critically ill patients needing specific nutrition
  • teaching to-be dietitians at the college level
  • helping parents overcome nutrition obstacles with their children
  • my husband’s and children’s health issues
  • my health conditions

In all these experiences, the benefits of foods or diets with anti-inflammatory properties repeatedly helped.  

Every person is predisposed to some degree to chronic diseases based on our genes and normal life wear and tear. 

Eating anti-inflammatory foods and other methods (sleep, exercise, support systems, stress management) helps our broken bodies perform their best. 

Eating certain foods won’t eliminate or cure a condition entirely, but it can reduce the progression, control the symptoms, and allow you to thrive. 

My Endometriosis Story

Like many women with endometriosis, it took about ten years to receive an endometriosis diagnosis. I first sought treatment related to infertility. I was also diagnosed with PCOS (which I won’t touch on at this time). I was hopeful that treatment would lead to getting pregnant. 

Endometrial Ablation

In my 30th year, I had my first and second endometrial ablations. At that time, I was unaware that endometrial excision was the gold standard of care, not ablations. 

My husband has explained the difference with a simple analogy. An endometrial ablation mows the endometrial “weeds,” whereas an endometrial excision digs those “weeds” up from the root, reducing their chance of ever growing again. 

Mowing weeds temporarily solves a problem, but the weeds grow back quickly.

Image with analogy of treating endometriosis either mowing the weeds or digging the weeds up by the root.

The surgeon said endometriosis was everywhere (ovaries, intestines, and pelvic cavity). The scar tissue had pulled my organs into positions that would never allow me to get pregnant without surgery.

I was put into a medication-induced menopause after my first ablation using the drug Lupron (also called a GnRHa). After this, my endometriosis flared up within four months, requiring another endometrial ablation and six months of menopause again. 

The dangers of treatment using Lupron were downplayed when recommended for my treatment plan, but I knew from my response and the little I read I wasn’t going to use Lupron a third time. 

I prioritized low-impact movement (walking, weight lifting, and spin bikes), eating an abundance of fruits and vegetables weekly to reduce inflammation in my body from this condition, quality sleep, and no excess sugar or processed foods. 

I knew from my education and professional experience that nutrition does help.

Getting Pregnant With Endometriosis (Success Story)

After the second ablation, I got pregnant naturally before I knew I was out of the medication-induced menopause. We were shocked and excited. 

Due to the severity of my endometriosis, this surgeon warned me to seek a specialist for major endometrial surgery and hysterectomy after having children. 

Pregnancy and breastfeeding do not cure endometriosis and should not be recommended as a treatment plan. However, there can be a hormonal improvement for women with endometriosis. I was able to get pregnant and deliver two more babies. 

I nursed my babies almost continuously from age 31 to 36 to help suppress hormones naturally, among other benefits for myself and my babies. My endometriosis symptoms improved, and I continued with an anti-inflammatory diet and lifestyle.

Endometriosis Flare-Up

Once my third child was finished nursing in August 2022, my endometriosis was completely unregulated and progressively worsened.

Non-Surgical Treatment

I worked with a pelvic floor therapist, employed my dietitian skills, worked with my local midwife, and still noticed major issues impacting my family and quality of life. 

Here are two of my favorite books that helped me understand the whole-body effect of endometriosis and effective treatment, including anti-inflammatory foods. 

I would have a painful monthly flare-up if a single factor was out of whack. It was a delicate balancing act. Flare-ups were triggered by small changes like switching my caffeine intake to 1 cup less one day or sleeping poorly due to a sick child (of which our household had over 22 illnesses in five months). 

I had migraines for days that would leave me unable to open my eyes, nausea, and inability to work or care for my kids. I relied heavily on medication to function on those days (not ideal and a Band-Aid solution). I’ve always had a high pain threshold, but this was often debilitating.

I was in pain, and none of my typical life remedies worked. My husband urged me to consult a top excision specialist in Houston, Texas. 

Nancy’s Nook website and the related Facebook Group were invaluable to learn more about endometriosis and research-based treatment and surgeons.

Surgical Treatment

I contacted a top endometriosis excision specialist in Texas and got the first available appointment…three months later to make a plan.

After my long-awaited appointment, the surgeon required an extensive CT scan of my pelvic area to plan what type of surgery and surgeons to involve. 

I had to wait another three months to get onto the schedule (end of January 2023), but I was impressed with his thorough planning and the time he spent explaining treatment routes. 

The surgeon confirmed in early March 2023 that I needed surgery for:

  • endometriosis excision, with likely deep infiltrating endometriosis (“deep weeds”)
  • bowel endometriosis and appendix endometriosis
  • along with a hysterectomy surgery due to adenomyosis

I scheduled this complex surgery for June 2023. 

The scans caught the bottom parts of my kidneys, and the surgeon noticed a small growth on the right one and sent me to a top-ranked kidney specialist in Houston. 

Kidney Cancer Diagnosis: Providential Curve-Ball

This specialist ordered a renal mass CT (scan) “just to rule out anything, but he fully expected it was a normal cyst and I would never see him again.” 

Two days later, on the Thursday before Easter 2023, he called to share that the mass was 80% likely cancer (nickel-size). He wanted to schedule surgery ASAP. 

Usually, no symptoms are present with this type of cancer until the late stage. The surgeon was confident this was early stage and contained due to its size and location. I was thankful for endometriosis pain (allowed by God) severe enough to seek medical care. 

In this instance, my dietitian self remembered that eating lots of anti-inflammatory foods can slow cancer progression. I wondered if my eating habits had helped in some way. 

I remember teaching my upper-level college students that over 30% of adults will get cancer at some point. I could remember the slides on the screen and some possible benefits of vitamins and minerals found in foods (compared to supplements) in slowing cell replication before cancer is even detectable. 

Kidney Cancer Surgery

Eight days later, I underwent a robotic-assisted right partial nephrectomy (cutting out the mass and surrounding kidney tissue) and liver wedge resection. The removed liver section was a surprise and instantly alarmed me when I woke up after surgery. 

My follow-up for biopsy results, cancer staging, and physical check-up was several weeks out. I couldn’t lift, push, or pull over ten pounds—quite a restriction with three boys (2, 4, and 6 years old). 

During this time, my family and church family helped our family tremendously. They lovingly accommodated my wish for anti-inflammatory meals. I asked for a Mediterranean Diet high in fruits and vegetables and low in dairy and incorporated whole grains, beans, and protein with some comfort food and sweets mingled in. 

We had delicious and nourishing meals for four straight weeks! I could focus on healing and spending time with my husband and boys.

In early May, we learned that the tumor was kidney cancer, was removed entirely, and that the liver biopsy was just a normal, benign tissue (the surgeon wanted to be safe, so he removed it). 

The surgeon was amazed at how fast I healed and released me. He strongly encouraged me to undergo endometriosis surgery eight weeks later based on the damage he saw and shared with my endometriosis surgeon. 

I will have scans yearly to monitor the kidneys. My kidney surgeon stated that the tumor’s type, size, and stage indicate a low recurrence rate. 

Preparing for Endometriosis Surgery and Hysterectomy 

Anti-Inflammatory Diet for Endometriosis

I prioritized my health, sleep, exercise, and nutrition for the next eight weeks. 

My goal was to eat at least 30 different plant foods each week. I ate cruciferous vegetables (broccoli is my fave) almost daily and started drinking more green tea. I wanted to give my body a variety of phytonutrients, vitamins, and minerals

I increased my movement as much as possible, even if I was helping my boys pick up their hundreds of golf balls in the backyard.

Endometriosis Excision Surgery

On June 28, 2023, I had a 4.5-hour surgery that included:

  • a complete hysterectomy (leaving one good ovary to prevent menopause and maintain some hormonal levels for heart health)
  • appendectomy (appeared to have endometriosis growing on it)
  • endometrial excision in the whole pelvic cavity
  • shaving the exterior of my intestines to remove bowel endometriosis
July 4, 2023 – 6 days post-op celebrating with fireworks. My mom and aunt came for kidney surgery and my in-laws came for this one.

I am now 13 weeks post-op. We had family and church family help again this time around. I was under a ten-pound weight-lifting restriction until 11 weeks, which was challenging for my functional life and mental health. 

I love to be outside and active. The second best is sitting outside, so I made do, even when it was 110 degrees. 

I can tell my endometriosis-related issues are mostly resolved. I am not fully healed from the extensive surgery, but progressing well. 

This physician shared that if I had waited 3 to 5 more years for endometriosis excision (my plan), he would have likely had to remove much of my intestines, requiring a permanent colostomy bag, among other anatomy issues. 

I get to build my strength and endurance now that Texas’s weather has turned cooler. I still eat an anti-inflammatory diet and have begun to have the mental and physical energy to try new recipes and anti-inflammatory foods and spices like turmeric. 

Takeaways

This last year, I focused on all aspects of health to prepare for the endometriosis surgery and then with recovery afterward. 

I didn’t know I was preparing for kidney cancer removal or such an extensive endometriosis surgery, but I was so thankful that I had. 

I am thankful that God created foods with anti-inflammatory properties built within them to slow diseases and created people with the capacity to develop medicine and complex surgical treatments.

I read many accounts of women who have been miserable and unable to live life due to their endometriosis. 

A large study of 1,418 women with endometriosis found that the women lost an average of 10.8 hours of work weekly, mainly due to reduced effectiveness or productivity while working related to their pain. Many women struggle to seek, afford, or have time to get recommended medical care for their endometriosis. 

My endometriosis felt well-managed (or tolerable) for most of my life compared to the average woman with endometriosis. I credit my diet and lifestyle for this difference.

God used a disease that I hated to ultimately save my life . Using the miserable to bring about something wonderful. My goal is to see others benefit from trustworthy nutrition with practical application so that more good may come.

I hope you will be inspired to follow an anti-inflammatory diet and lifestyle to help you prevent, manage, and slow the progression of your medical conditions. 
You can read more about simple swaps to get started with an anti-inflammatory diet or a free printable food list to help make shopping and meal planning easier.

Let’s get UNstuck and stay UNstuck!

2 thoughts on “Endometriosis Flare-Up: My Endometriosis Story”

    1. Sarah Bullard, MS, RDN

      Great! You’re welcome. It helped me to start trying some new foods,too. I have been using more tomatoes, onions, and green tea.

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