Despite a Percocet, I kept tossing and turning, trying to fall asleep. I was still recovering from a recent surgery to remove a cyst (approximately 5cm) near my right ovary. I was not aware that the cyst was caused by stage 4 endometriosis. I decided to create a journal to record my journey of living with such a painful condition. This was back in February 2020.
I don’t remember having my period without experiencing horrible and painful cramps. Vomiting and diarrhea were also normal. What I do remember is my mother dealing with the same excruciating pain. She used to tell me stories about her sister dealing with debilitating cramps every month as well. I recall stories from some of my aunts about how miserable they felt when dealing with painful periods. I always told my gynecologist about my cramps. For some time, he suggested OCP (oral contraceptive pills). He also instructed me to take pain medication three days prior to my period to help ease the cramps. I also did yoga and limited exercise. I even tried acupuncture to help ease the pain. Some months were easier than others. I was never told about the possibility of having endometriosis given painful periods were common in the family. I assumed the pain was normal.
I first learned about endometriosis in medical school in the early 2000’s while doing OB/GYN rotations. Not much was mentioned about the condition. I only learned about chocolate cysts and painful periods. It never crossed my mind to consider that I had endometriosis. By the time I completed my residency, I had a new gynecologist and moved to the United States. I was 29 years old at the time and continued having the same debilitating periods. My doctor recommended the same treatment as before.
I tried having kids, but was never able to. Several times I discussed this matter with my gynecologist. I had blood work and ultrasounds done but the results were normal. I was advised to keep trying for a year and to consider other options if I was not able to conceive. The logic behind the matter was that if I had my period every month, then it meant I was ovulating, so there should not be any problems. I even experimented with a specific type of acupuncture designed to increase the chances of fertility. For good or bad, the relationships I was in ended, so I never inquired on why I could never conceive.
2016
I started having this stabbing pain on my right lower quadrant radiating to my back. Most of the time, it would happen mid-cycle. It would last for about 3 days. I was taking ibuprofen around the clock in hopes of finding some relief. I went to the emergency room and had imaging done. The results showed a small ovarian cyst on my left ovary. I would get that pain every three to four months. I didn’t pay too much attention to it and thought it was related to ovulation.
June 2019
I experienced an unexpected and severe epigastric pain. I ended up in the emergency room. I was told it was my gallbladder and a 6cm complex cyst was also found on my left ovary. My gynecologist ordered a ultrasound. While having the ultrasound the radiologist told me that there were no cyst on my left ovary, but something that could not be identified was seen on my right side. The radiologist explained the possibility of an ectopic pregnancy. I remembered crying, since this was the closest I was to a pregnancy, and was ectopic. Once this supposed ectopic pregnancy was ruled out, my doctor recommended an MRI. The results revealed inflammation on my left fallopian tube that self resolved and two endometriomas of about 2cm each on the right side. I felt like I found the reason behind such horrendous periods and why I wasn’t able to conceive. For some reason, I was not surprised—besides, pain had become my normal. I explained to my gynecologist how the cramps were getting worse. Once he looked at the results he suggested contraceptive pills. I was 40 years old.
August 2019
Just two days prior to my gallbladder surgery, I felt severe pain on my lower right side; a stabbing pain that radiated to my back. I had never experienced a pain so traumatizing. I had to resist the pain since I was told by the surgeon not to take any NSAIDs prior to surgery. Despite surgery, the pain continued with the same intensity as before. The pain caused vomiting. I wentent to the emergency room and had another ultrasound that showed inflammation on the right fallopian tube. Antibiotics and pain medication were prescribed. The pain continued.
The gynecologist put me on an additional round of antibiotics. He suggested laparoscopic surgery, but since I just had my gallbladder removed, I would have to wait. I was also told to continue taking the OCPs, but I didn’t. My brain associated the pain with the new pills. The pain eased a little, but never went away.
I went to Puerto Rico to meet with my first gynecologist. After another ultrasound I was told the pain was an hemorrhagic cyst on my right ovary and that it should go away by itself in two weeks. A month later, the pain persisted. This time the gynecologist recommended a new medication for endometriosis called Orilissa. At first I was excited about this new medication. I headed straight back to my gynecologist in Miami to get the new medication in hopes that this was the solution to my crisis. The directions were to take this new medication for three months. Side effects included hot flashes, depression, suicidal thoughts, and bone loss, among others. Not knowing which was worst, the pain or the side effects, I hesitated. Finally I prayed and started the treatment. One night while working the night shift I had a hot flash. My first reaction was to laugh about it. I even told my partner about the possible side effects in case he noticed anything out of the ordinary. Later I learned that he was overwhelmed when the side effects intensified. He felt helpless and was not sure what to do. Two weeks into the treatment, I remember crying for no reasons and the pain was still there. I was not able to have sex due to the pain it caused.
Out of nowhere, my health insurance told me they would no longer cover the costs associated with the medication. That call was a relief. I stopped taking the pills that week, and that was it. I was able to make it through October and November with not much pain. I went back to my gynecologist for a follow up. Everything seemed stable and I was able to manage the pain by only taking acetaminophen. At the same time I was also seeing an acupuncturist. I also tried herbs that are supposed to help.
December 2019
The pain resumed. I went back to the gynecologist and after another ultrasound the results seemed stable. I was prescribed a different contraceptive pill. The pain quickly became worse, to the point that I was unable to work. I had to cut short a shift. I started 2020 with another ultrasound.
A 4 cm lesion near my right ovary was detected. Possibly an endometrioma. A colleague recommended getting a second opinion and even considered laparoscopic surgery.
I decided to start my quest for a second opinion. I sent my results to a new gynecologist. At this point, the pain was a 20 out of 10. I was literally drinking my own tears. The pain was unbearable.
February 2020
I called my gynecologist and explained my situation. A few hours later, I was in his office. The news was not good. I needed surgery right away. No food or liquids after midnight, therefore no pain medications until surgery. The next afternoon I was in the surgery room. Surgery went well and the throbbing pain was not present anymore. Once home the pain I had before surgery came back. Same intensity, radiating to my back and my right thigh. It felt like a screwdriver was being turned aggressively inside my body. The pain was gut wrenching. Four days later I was back in the emergency room. This time I developed a hematoma near my right ovary. According to my GYN, it should have resolved by itself, and the pain was to be expected. He also suggested trying Lupron. The pain lasted for another three weeks.
April 2020
At this point I decided to see an IVF (in vitro fertilization) specialist. I was 41 years old. The chances of getting pregnant were 60% due to my age, recent surgery, and severe endometriosis. He suggested using progesterone while on the Lupron to ease the side effects. Because of my age, it was not recommended to freeze my eggs. The alternative was to get a sperm donor and fertilize the eggs. By this time, sadly, I was no longer with my partner. This was something I didn’t want to do on my own, so I gave up on the idea. I did two rounds of Lupron. The first round caused hot flashes, but I was able to manage them with a little portable battery fan that I would take to work. I did not care if people made fun of me, it really helped a lot!
The COVID-19 pandemic was ongoing, so every time I put on my PPE I sweat bullets. Definitely not a nice feeling. On the second round of Lupron, my joints started to hurt, on top of hot flashes, hair loss, and daily headaches, among other side effects.
September 2020
The pain returned, again. Back to the gynecologist. This time he suggested getting a second opinion and referred me to an endometriosis specialist. After careful consideration, I decided to have the hysterectomy. At first the doctor was hesitant about the procedure since I haven’t had any children. I explained to him how pain was my normal and this was my only way out. I asked myself: what quality of life am I living? What can I give to a child, if I’m in pain most of the time?
The Surgery
On surgery day, my doctor asked me the same question: are you sure you want to proceed? With tears in my eyes, I said yes. I had the hysterectomy plus excision. A non-endometriosis cyst was also removed from my right ovary. My two ovaries were left intact. I had to stay overnight in the hospital. The day after, the ARNP came to my room. He had assisted my primary surgeon during my surgery. He assured me that I made the right decision. I had two myomas, plus multiple lesions on my bladder, ureters, and sigmoid colon.
Today is Day 14 after the procedure. I’m sore still, but I’m doing fine. I’m still processing the fact that I don't have a uterus anymore and won’t be able to have kids. I cried every single day since I made the decision. This was something I wanted. But now I have to accept the fact that it will not happen as I planned. I cheer myself with the fact that I’m not going to miss my period nor the cramps at all.
If you read this, you might be wondering, if she’s a physician, why didn’t she try more alternatives? The answer is that we underestimate our own symptoms. We wait until things are about to explode and out of our hands before we admit that something is wrong. I kept going. I don’t know how many Toradol shots I got while working, and the numerous times the nurses manufactured a hot pack with hot water and diapers. That’s how we, Endo Warriors, are. We keep going.
Yadira Ramos was born and raised in Puerto Rico. Currently, she worsk as an emergency physician in Florida. She's entertaining herself these convalescing days by crocheting and reading.
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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.
