The Long Road to Stage 4 Endo

Last updated: October 2021

Like many others here, my story begins with painful periods. One of my clearest early menstruation memories is walking between classes in junior high and clutching my abdomen while leaning against the wall, unsure how I was going to make it to my next class. It was too embarrassing to talk about it with anyone except my best friend, and we both assumed I needed to take more Advil. On another occasion, I started bleeding in the middle of shop class. I could tell the crotch of my pants felt wet and my heart sank. I did the best I could to not draw attention to myself, and I even went to my next class, because I knew I’d be seated the whole time. I was too ashamed to ask for help and instead kept a keen eye on the clock, waiting impatiently for the bell to ring so I could bolt for home.

When the pain became unbearable

My periods didn’t start keeping me at home until my early 20s. I asked my gynecologist why I had such intense pain and rather than doing any kind of exam or investigation, she suggested I change birth control pills and start taking 600 mg of ibuprofen a few days before my period started “to get ahead of the pain.”

Things worsened in my mid-20s with recurrent yeast infections and pain that kept me in bed for a couple of days during my period. I missed out on gatherings and work, and one time my partner and I camped in our living room to try to take away the sting of missing out on the actual camping trip we’d planned. It was at this time that a friend recommended acupuncture. The practitioner I saw asked me to stop eating gluten and dairy and we started regular treatments. This was a game-changer that stopped the yeast infections and some of the more onerous symptoms around menstruation.

The pain came back

But the effects only lasted a few years. I began to get a dull pain in the left side of my pelvis that wouldn’t go away, and seemed to worsen with stress and my period. I didn’t have it checked out for a couple of years because I was scared it was cancer and surgery terrified me. Eventually, the pain became too awful and my periods kept me in bed for days, so I saw a new gynecologist. Her bedside manner was terrible. She scared me by saying she needed to do a vaginal ultrasound right away. The procedure was painful and frightening, and the doctor told me I had an ovarian cyst that might be cancerous and she needed to remove it right away. She scheduled me for surgery the following week.

I didn’t know what to think and I had little time to prepare, but I agreed to the surgery. The surgeon found endometriomas on both ovaries. This was in 2009 when ablation was the norm, so she drained both cysts and burned away what disease she could see. She sent me home with pictures of my burned insides and told me I should go on birth control. Recovery was hard and took a couple of weeks. I felt isolated and scared. Because I knew that birth control made my heart race, and caused other uncomfortable symptoms, I decided not to take it.

Seeking alternative treatments

Three months later the pain returned. I went to a different gynecologist who had better bedside manner. She did an ultrasound and discovered that another endometrioma had grown and it was the same size as the one I’d just had removed. We scheduled surgery just six months after my last surgery. She drained the endometrioma and suggested birth control. I tried being on birth control for three days and had horrible heart palpitations, so I went off of it and started research into alternative treatments.

I did everything: diet changes, more acupuncture, NAET, supplements, cranial-sacral massage, naturopathic doctors, energy work, shamanic healing, and dreamwork. Some things helped ease my anxiety, which surely had an effect, and my symptoms lessened. During this period of time, I graduated from grad school, got a divorce, and traveled through Europe for six months. For some of the time in Europe, I even stopped getting my period, which felt like a huge relief!

It was happening again

Things went along with relatively few symptoms until I moved to Vermont in 2016. My health started to decline and in 2019 I had several ovarian cyst ruptures. The first one sent me to the ER in the worst pain of my life. After an ultrasound and a CT scan, it was confirmed that I had endometriomas again. I’d been seeing my PCP for annual exams, so I found a gynecologist who could help me navigate this new twist. She ended up being a bad fit. For one, her office was homophobic and didn’t even acknowledge my wife, who accompanied me to the appointment. The doctor wanted to put me on Depo Provera to see if that would lessen symptoms. The only other alternative, according to her, was a hysterectomy. I chose a wait-and-see approach and I did not start the Depo.

After I experienced recurring ovarian cyst ruptures, I began researching and found Nancy’s Nook on Facebook. I finally learned about excision surgery and decided I wanted to find someone to perform that for me. Luckily, there is a gynecology office here that is queer and trans-friendly and has a doctor on staff who is skilled at excision (I am queer and nonbinary and I wanted to find a doctor who would affirm my gender identity as well as my sexual orientation). When I met with her, I knew I’d found the right doctor. She was patient, empathetic, and understood my reluctance to try birth control. We scheduled an MRI to try to see what was happening. It turned out I had large endometriomas on both ovaries, and my uterus was tethered to my rectum by adhesions.

Getting surgery during a global pandemic

We scheduled surgery for March 2020. Then the pandemic hit. I was supposed to have surgery in March, but it ended up getting pushed until July. I was scared to be at the hospital in the middle of a rise in cases, but I also couldn’t continue living in pain. During the surgery, which was assisted by a gastroenterology surgeon, the doctors found that I had stage 4 endometriosis with bowel, rectum, and pelvic sidewall involvement. Both of my tubes and one ovary could not be saved because the disease had infiltrated them too intensely. We had agreed before surgery to save one ovary if we could, to avoid surgical menopause. My surgeon was able to save a remnant of my left ovary.

Recovery took six weeks. And just as I thought I was out of the woods, the familiar pain started up again in the left side of my pelvis. Two MRIs and a CT scan later, it was discovered that an endometrioma had returned, as had more endometriosis. During the last surgery, my doctors had discovered a lesion on my rectum that they didn’t feel confident enough to excise. I decided I needed another level of expertise, so I consulted with a doctor in Boston. I chose him to do the surgery, and in May 2021, I traveled to Boston for my fourth endometriosis surgery. He removed my remaining ovary fragment and excised extensive disease that he said had become dangerous because it was getting close to some of my nerves.

Where I am today

It is now October 2021. My endometriosis symptoms have quieted down with the exception of slight pain in my left side and endo belly. I am seeing a pelvic PT to help with the pain. In January I was diagnosed with a rare disease, Mast Cell Activation Syndrome, which has almost certainly been playing a part in the severity of my endometriosis, and I’m trying to learn everything I can about how the two interact. I’ve been managing the symptoms for MCAS this year, which I believe were worsened by the two surgeries. I have not been able to return to work full time and I struggle with dizziness, nausea, fatigue, and GI symptoms. So although the endometriosis seems to be managed, I am still struggling. It is my hope that I will never need another surgery for endo, and I am going to dedicate some of my time to raising awareness about endo, especially for those who are nonbinary, trans, and part of the LGBTQIA+ community.

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