April 11, 2024

Lindsey Howard’s Endometriosis Journey

This is a firsthand account submitted through SWHR’s Share Your Story portal, as part of SWHR’s Women’s Health Perspective series.

I was diagnosed with endometriosis after laparoscopic surgery to remove two very large endometriomas in the winter of 2018. I consider myself lucky that I had physical evidence on my ultrasound of the pain I was enduring before, during, and after my period. I know many women who had many clean scans before someone took them seriously enough to do exploratory surgery. Prior to surgery, my symptoms consisted of heavy bleeding, nausea, constipation, constant pain/pressure around my abdomen, and—my personal favorite—painful explosive diarrhea (only at the most inconvenient times, like on a very populated hike in Iceland, on the side of a mountain while rock climbing, or at the dog park). But the worst of my symptoms occurred while I was pregnant and after my daughter was born.

The biggest gaslighting statement an OB-GYN ever said to me was, “Pregnancy will cure your endometriosis.” This was said to me before I was pregnant and before I had three surgeries post-partum. Relying on this myth, my OB-GYN surgeon left endo tissue on my ovary and told me I would live a normal life and another OB-GYN brushed off my right-sided pain as possible fused organs from my first surgery and never did an ultrasound to confirm a very large endometrioma that was there.

Six weeks postpartum, I was scheduled to have my fallopian tubes removed. While my surgeon was operating, she found bilateral endometriomas, filmy adhesions of bowel on the bilateral side walls, and endometriosis on the posterior uterus. It turned out my extreme discomfort during pregnancy was for good reason! My body was fused together, restricting my body from making space for my growing, healthy baby.

But my postpartum endometriosis journey doesn’t end there. Two months later, I was in the emergency room for a ruptured cyst and suspected appendicitis. Then, three months after that ER visit, I was back in the operating room for an oophorectomy and appendectomy, which confirmed that I had endometriosis in both organs (the ovaries and the appendix).

What was supposed to be the most beautiful time of my life (pregnancy) was one of the hardest. Endometriosis took away precious time with my daughter. During the first six months of my daughter’s life, I was battling severe postpartum depression, struggling with appendicitis symptoms, and trying to find specialized lactose-free baby formula during a nationwide formula shortage because my body couldn’t produce breastmilk.

After my third surgery, my pain was still there—just not as intense. Fast forward a year later and my pain gradually got worse again and my fatigue was difficult. After doing my own research and joining several Facebook endometriosis groups, I learned about the surgery techniques of excision versus ablation. My previous three surgeries included only ablation. Luckily, I found a well-respected endometriosis surgeon who was experienced in minimally invasive excision surgery. She listened to my whole journey, took my pain seriously, and spent the time to help me feel like I was not crazy. We decided to have a total hysterectomy because my family was complete. This was going to require a longer recovery, but if this was going to give me my life back, then I thought, let’s do this! It took my surgeon 5.5 hours to cut through all the cement-like adhesions and excise 21 spots of pathology-confirmed endometriosis from all over my pelvis area. Some endometriosis spots were deep, infiltrating my bowel. After surgery, it took me a month to process what happened because I was still in shock that my pain had been validated.

I am more than six months post-op, and I can report I now have energy that I haven’t had since middle school, and I don’t have diarrhea anymore. Though there is a possibility of my endometriosis (and my symptoms) coming back, I haven’t felt this good in decades.

Never doubt your pain, never stop advocating for yourself, and never give up because there will be someone who will listen and help.