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“We Must Do Better”: An Anonymous Endo Story

“We Must Do Better”: An Anonymous Endo Story

For confidentiality reasons, the author has wished to remain anonymous.

In every bag, I carried Advil. I had to make sure I had it in case I got my period. From age 12 or 13 onward, I had debilitating cramps. In the 80’s, 90’s and 2000’s, every doctor (primary care, pediatrician, gyn) told me to take Advil. And lots of it. They recommended 4-6 Advil every four hours (this sometimes adds up to over 20 pills in 24 hours!). I just thought I had bad cramps.  I never had particularly heavy periods, and my period was regular as rain. I went on the pill for several years in my 20’s as I was in a committed relationship, and, although my period was lighter, cramps were no better. At no time did anyone ever mention endometriosis.

Here are some other symptoms I had:

·   Back pain starting in my late teens

·   Tipped uterus

·   Frequently tired (although also had several stressful jobs)

·   Stomach issues throughout my 20’s

·   Repeated UTI’s in my 20’s

·   Pain with sex with new partners

·   Spotting in my late 30’s

·   Fibroid discovered in my mid 30’s

·   Egg freezing in my late 30’s that did not go well

·   MTHR gene mutation identified in my late 30’s

·   Unexplained abdominal pain in my 40’s

·   Ovarian cyst in my 40’s 

I have always been very healthy. I rarely get sick. I exercise almost every day—run, yoga, dance, ski, hike, etc. I meditate. I don’t smoke. I eat really well. I do drink, but not excessively. 

I started seeing a naturopath and chiropractor at age 30, who somehow solved the UTIs and the stomach issues with some supplements and dietary changes. Again, no mention of endometriosis.

At age 29, my older sister was diagnosed with breast cancer, and I was not in a committed relationship, so I went off the pill. The doctors did not want to increase my risk for cancer by keeping me on hormones, and I saw no point as I had to use condoms anyway.

In 2014, when I was 39, I froze my eggs. The procedure was not available until I was about 37. It did not go horribly, but it did not go well. They froze six eggs. (Note, they saw 12-14 follicles, took out eight and froze six, that’s generally how things work). It was EXPENSIVE, around $15,000 for one round. They blamed a not-so-great cycle on my age, and shrugged. “Sometimes this happens,” they said. I probably had (at least) 10 ultrasounds during this time. No one saw, suspected, or looked for endometriosis. They didn’t question me about my back pain or painful periods, and only glanced at my GYN records. My right ovary was not really cooperating, and they didn’t know why. They said it was “being lazy,” and again, sometimes this happens. Later, doctors would find a large endometrioma on my right ovary. For the egg freezing, they actually triggered me earlier than they wanted to as my estrogen levels were so high. When they retrieved the eggs, they were surprised there were so few. Another red flag—often patients with endometriosis have high levels of estrogen that do not match the number of follicles they have growing. Later, I gave them some feedback on my experience and suggested ways to improve it. 

At age 41 (Sept 2016), I did look into what I should do about my frozen eggs, and considered doing another round. The fertility doctor did mention endometriosis in passing, simply because I had painful periods. (No other reason). I looked at her like she was crazy—"don’t you think someone would have figured that out by now?” I asked. 

In the meantime, I started going to a new person, based in Boston, for a Mayan pelvic massage due to back pain and painful periods. One of her areas of expertise is endometriosis. She was the first and only person to say: “I really think you have endometriosis,” because she could feel the scar tissue when she massaged me. She also mentioned that this much Advil and period pain was not normal. I give her credit for being an advocate, and for correctly diagnosing me. She has been amazingly supportive.

In August 2019 I was diagnosed with an ovarian cyst, after having unexplained abdominal pain. In January 2020 I went to the ER with severe abdominal pain, which they never found the cause of, but attributed to the cyst. I even asked about endometriosis and they shrugged me off. Then the pandemic hit , and my ultrasounds were put off multiple times. The pain on my right side was uncomfortable and came and went. Icing it seemed to help. I was bloated all the time. I even had a colonoscopy again in July of 2020, as the doctors suspected an intestinal infection such as CIBO or Y-pylori, both of which were rare. I had an MRI on my right hip, in case it was my back or psoas that was acting up again, but all they saw was the fibroid and the cyst on my right ovary. I finally had an ultrasound in August of 2020, where the radiologist diagnosed me with suspected endometriosis. The cyst on my right ovary was not a run of the mill cyst, but rather an endometrioma, which had probably been growing for a long time, potentially even when I froze my eggs. 

I was flabbergasted and flummoxed. Endometriosis diagnosis at age 44 (almost 45?) Why had no one caught this? 

I researched “best endometriosis doctor in Boston” online, and asked around, and made an appointment with the Boston Endometriosis Center. Both my new GYN and the doctor at the Brigham suggested that I have a more sophisticated, more accurate ultrasound at Diagnostic Ultrasound Associates. They diagnosed me with endometriosis on the spot. It was practically everywhere: on my uterus, behind my uterus, on my ovaries. Scar tissues and adhesions everywhere. The doctor read the report and diagnosed me with stage IV endometriosis.

The doctor suggested several options. One was to go on medication, one was to have surgery, and one was to just wait it out. Due to the family history of breast cancer, and the fact that I had never had any diagnostic surgery, we decided that I should have surgery. They wanted to make sure the cysts were not malignant. I talked to two surgeons and they both agreed on the same plan: do a “survey” of my entire pelvis, remove all the endo, remove most of my right ovary as it was covered in an endometrioma, and remove the fibroids. Preserve my fertility if possible. I decided to go with the surgeon at the Brigham as he was the nicest (“you are 45 but I am going to treat you like you are 25 and want to have five kids!”) seemed the most qualified, and they could do the surgery before the end of the year. They would do laparoscopic deep excision surgery. Although they were pretty sure it was an endometrioma on my right ovary, they were somewhat concerned about ovarian cancer due to the family history.

Despite having surgery during a global pandemic, the surgery went well; they did not see any new endometriosis, and they saw exactly what they saw in the ultrasound and the MRI, with the exception of the fibroids being a cluster instead of one big fibroid and one smaller one.  The adhesions behind my uterus were also worse than they thought. My recovery was difficult, but short. I did not stay overnight in the hospital. Pain was bad but manageable, and I was able to resume most of my normal activities after about a week. And I will be able to use the frozen eggs if I want to. The plan is to monitor the endo, and for me to go on a progestin-only contraceptive to slow the growth and to relieve my pain. My pain is significantly better, although not entirely gone. 

It took around six years for my diagnosis, although I had symptoms from the age of 12, and the symptoms did not get worse until my late 30’s. Perhaps the birth control in my 20’s helped.  

One note about equity and privilege. First of all, I have health insurance. Good insurance. And, since I met my deductible, my insurance paid every cent. Second, I’m a white woman who grew up in Boston in an educated, upper-middle class family. I had every advantage in the world. As an adult, I lived in New York, San Francisco, and Boston with access to the best medical care in the US. I have a master’s degree, and I am persistent, not shy, and I ask a billion questions. I also tend to do a ton of research. I have a huge network and tremendous social capital. And still, I was overlooked, told that I was being paranoid, and even though I asked about endometriosis multiple times, they still didn’t diagnose me. If that happened to me, what happens to women who don’t speak English, or who don’t know how to ask questions, or who are afraid to ask, or who don’t have access to the best medical care and insurance? This is a failure of the medical community and a symptom of systemic sexism and discrimination. We must do better. We must raise awareness. We must increase access to diagnostic testing. There is no reason why I and other women like me had to suffer for so long. I am glad I am on the other side of the worst part, and that now I am just working to keep the endo at bay. 


 

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*Patient stories submitted to EndoFound.org are the views of the patient and not necessarily those of the foundation. All testimonials are from real patients, and may not reflect the typical patient’s experience, and are not intended to represent or guarantee that anyone will achieve the same or similar results.