Battling Endometriosis: One Warrior Mama's Story

 

This week is national infertility awareness week and we want to share an incredible story by a warrior mama.  Tiffany Roe, Clinical Mental Health Counselor, teacher, speaker, and podcaster has experienced more than her share of period problems.  What started with painful cramps, became a stage four endometriosis diagnosis, a terrifying two week hospital stay, severe scarring on her fallopian tubes, and eventually a miracle pregnancy.  We sat down with this inspiring Utah-based mother to hear her story.

OM: When did you discover you had endometriosis and what were the first signs?  Were you already trying to conceive at the time? How long were you trying to conceive before you realized you were showing signs of infertility?  

TR: You know, I always just thought periods really sucked. They were powerfully painful and hard to get through my entire life. I got the message that I just had low pain tolerance and what I was experiencing was normal. It’s crazy to me that I didn’t find out it was a serious and debilitating disease called endometriosis until I was in my 30’s.

On September 10, 2013 I woke up to age 30 and the light switch of wanting a baby was turned ON. We passively began trying to conceive. We were both busy professionals and my partner went in and out of being ready to start a family. It was something we wanted but it’s not like we were doing ovulation tests or timing my cycle.

My cycle started having blatant issues in 2014. Throughout 2014 I had three bouts of the "flu." Each time it hit, I was starting my menstrual cycle. I had excruciating pain in my abdomen that caused me to vomit for 1-2 days. The weird thing about this "flu" was that I would be in pain for 5-6 days following the initial vomiting. I could hardly walk, I would be hunched over due to throbbing and ripping pains in my pelvic region. By the third time this happened the thought occurred to me, "Why does this always coincide with my period?"

Fast forward to January 2015. I was at work and was fine. Then out of the blue I started having the abdominal pain that was becoming a little too familiar. I went outside of the rehab facility where I work and proceeded to vomit violently for what seemed to be hours. I had my boss and coworkers holding me and supporting me during some very painful sensations. They were able to drive me to an instacare. I was carried in and put in a wheelchair. The pain didn't make me pass out, but I don't have a strong memory or consciousness of what really happened. The instacare gave me pain meds which helped tremendously and told me to go to a gynecologist, which miraculously I was able to get into the next day.

With the assistance of someone, I walked into the gynecologist. I was hunched over, my belly was greatly distended, and in great pain. They did a transvaginal ultrasound and I was told, "You have several masses covering your ovaries, we're going to send you to the hospital to get this checked out."

That was it. Can I say to all doctors, don't effing say the word "mass."

During the hospital's transvaginal ultrasound, the pain was brutal. The radiologist said she was pretty sure I had endometriosis as well as blood filled cysts called endometriomas on my ovaries and that's what was causing so much pain. (Now I know that endometriomas indicated advanced endometriosis.)

So this started several gynecologist appointments which all ended the same. They could never confirm they were cysts or that it was endometriosis because the only way to officially diagnose that is through surgery. They didn't recommend surgery because it could damage my ovaries and it only has a 50% rate of keeping cysts away (meaning half the time they grow right back). They said we could do birth control to manage the "endo" but since I wanted to have children, we really didn't have any choices to help my condition.

We we're told to "keep trying to get pregnant" because there is nothing you can do. My personality is pretty proactive so I read a lot and decided what I could do was control inflammation, so I started a really strict anti-inflammatory food regimen to control pain. (Disclaimer: I am in recovery from an eating disorder and don’t recommend restrictive diets for people, especially people in recovery. This was a desperate measure to see if it would heal a disease threatening my ability to have children. I was working closely with my therapist to make sure I was safe. In retrospect, I’m not sure if it helped considering how this story unfolds.)  I drank apple cider vinegar, did acupuncture, energy work, therapy, exercised, ate fish oil, coconut oil, overdosed on essential oils, prayed, meditated every day, did mindfulness and deep breathing, and cut down on work and stress. My endometriosis symptoms went dormant for 15 months...

But I still had negative home pregnancy tests. Each month we endured  a fresh grieving cycle of hope, faith, excitement, grief, anger, pain, mourning, hope...

We started seeing a reproductive endocrinologist (RE) after 12 months of negative pregnancy tests. She told us to keep trying. Which is unusual because 12 months is the definition of infertility. But my 12 months were a little stressful. In 2015 my mom got diagnosed with cancer and I was diagnosed with rheumatoid arthritis and ankylosing spondylitis. On top of endometriosis.

Because of my rocky year, my RE thought maybe we just needed to "try harder" for six more months to make sure we covered our bases.

What's so crazy about this is I scheduled an appointment in May to talk to my RE to say, "Okay, six months is up, let’s do assisted reproductive technology to help us get preggo; something is wrong!" We never got to that appointment. I’ll tell you about the hospital in a bit.

How did this affect how you felt about yourself?  How did your partner handle it? What are some ways you can recommend others communicate with their loved ones about this issue?

It’s hard to describe how this made me feel about myself. I experienced anger, depression, fear… a lot of fear, comparison, resentment, and a “fight this” mentality. I felt like my body betrayed me. I felt like a failure as a wife and woman.

My partner was super supportive. He never blamed me. He supported all of my extreme attempts to control my disease. He was steady. Down the road we discovered we both had factors contributing to our infertility. I think at that point he internalized more of the type of pain I was experiencing.

It took a toll on our relationship. We both got depressed. The longer we tried to conceive and weren’t able to, the more hopeless we felt. The more we wanted to isolate. We didn’t want to talk about it. I would get triggered easily when people around me were getting pregnant so easily, and he wouldn’t be triggered. Often when I was most vulnerable and hurt, we’d end up fighting. It tested every emotional capacity.

The best advice I have for other couples is to validate each other. When one is down, support the other. Support each other in the boundaries they need to set up to feel safe. All emotions are okay. Hate all pregnant people? That’s okay. Hate all babies? That’s totally okay. Can’t stand to attend showers and celebrations? Perfect. Just being allowed to go through the emotions is so important. If you’re going through infertility, you have the right to take care of yourself and honor your emotional experience. Set up rules with your family. You’re allowed to say, “Hey, if I’m triggered or upset, I’m just gonna leave. Please don’t take it personally, or try to chase me. I just need to be able to go if I need to go.”

Can you walk us through your health breakdown and the traumatic experience you had when you were hospitalized?

The rest of this story is traumatizing, miraculous, a blur, and still something I haven’t processed. On May 16th, 2016 had some cramps that subsided with some ibuprofen and rest. Then that night they got BAD. It felt like the flu symptoms that became all to familiar in 2014. I vomited all night, had cold sweats, my belly became swollen and distended. On May 18th, 2016 I asked my family to take me to the ER. I knew something was wrong. In ultrasound they found 7-8 mm cysts on my ovaries.  They indicated that they thought there might be fluid in my fallopian tubes but said it wasn't an issue and sent me home. On May 20, 2016 I went back to the same ER again because my pain was unmanageable. I vomited up all pain medication and the pain was getting worse (this had never happened before). I was sent home and was treated like a drug seeking addict. The funny thing is I had plenty of pain meds at home, ya'll. I just couldn't keep them down and was suffering.

On May 23, 2016 my mom came to town and took me to my infertility doctor because I knew something was wrong and the hospital wasn’t helping me. I was still in excruciating pain. I couldn’t eat. I couldn’t keep down pain meds. I was unable to sleep due to the pain. They gave me IV fluids and did blood work. My doctor personally called us within an hour and said I had a dangerously high-level infection and told us to go a larger hospital immediately. She told us I would die if I didn’t get help now. I was septic. She said it was very serious and time was running out. My sister tried to negotiate a way for her to harvest a bunch of my eggs so we could have kids real quick, and the doctor said, “I don’t think you understand, she won’t make it. Get her to the hospital.”

I was admitted to the hospital and didn't leave for 16 days! Tubo-ovarian abscesses (TOA) are one of the late complications of pelvic inflammatory disease (PID) and can be life-threatening if the abscess ruptures and results in sepsis. It consists of an encapsulated or confined 'pocket of pus' with defined boundaries that forms during an infection of a fallopian tube and ovary. That’s what I had.

I received massive doses of antibiotics as the first line of defense, which didn't work to treat my tubo-ovarian abscesses. They then went in and drained them. I was still sick and infected. Surgery was the last step. On May 31, 2016 I went into surgery after having received a blood transfusion, being on a food tube for almost two weeks, and having not responded to lesser interventions. I was told that I would likely lose my ovaries. I went under hoping only that my life would be spared, and my ovaries left intact. After surgery I found out my fallopian tubes were destroyed by the infection and filled with scar tissue. They saw stage 4 endometriosis all over my pelvic region, bowels, ovaries, and told me the only way I could get pregnant was through In Vitro Fertilization. However, I still had my ovaries. I also finally felt relief from the pain.

For 16 days I fought for my life and won.

Who was your support during this time and what helped you recover?

My partner slept at the hospital every night. He brought my dogs to snuggle me. My niece and nephew stayed a few nights. I had family, in-laws, and friends visit every day. I had neighbors and community members praying for and visiting me. Their cards, texts, calls, and tears were everything. I was never left to feel unloved. When I finally went home after 16 days of hell, my neighbors had planted a garden for me. We had meals delivered. A friend cleaned my house. It showed me how good people are.

 

You talk a lot about body issues in your work. Does this condition help shape the way you feel about your own body?  

It just changed everything. My body is badass. It’s been through a lot and today I sit and write this story as a distant memory. I have no evidence of this story other than a 7 inch scar on my lower belly and two drain hole scars on my belly and butt. My body ran 4 miles today and ate food easily. It digested with no pain. It slept well last night and worked today. I’m ALWAYS grateful for my body. Weight fluctuations, cellulite, stretch marks, and imperfections are skin deep. What my body can DO is everything.

How did pregnancy help you connect with your physical form?

You gotta understand, literally less than 2 months after the hospital, I started in vitro fertilization. I was still numb from the surgery and emotionally traumatized. I got pregnant on our first round (that’s a whole other story for another time). I just had gratitude. I was so stoked to be pregnant. It was all I wanted. I just lived in a state of awe and acknowledgment that my life and pregnancy was nothing short of a miracle. I appreciate my body. I am grateful for her resilience. Do her systems work perfectly? No. Do I treat her with kindness and compassion? I try. Every day I felt my body change, holding and nourishing a life, growing a human, and it was just pure joy and gratitude. I was able to practice body-love in a totally new way. It’s not about what you look like, it’s about respecting, trusting, accepting and loving your body for what it can do.

We are so grateful that Tiffany had the courage to share her story.  If you want to find out more about Tiffany and the work she is doing with women to help them love their bodies, find their purpose, overcome bad hurtful thinking patterns through Cognitive-Behavioral Therapy, Mindfulness, Dialectical Behavior Therapy, and Acceptance & Commitment Therapy, check out her practice, Mindful Counseling Utah or give her a follow @mindfulcounseling