My Story With Endometriosis and the Struggle to be Heard

My name is Sara. I am 26 years old. I have been menstruating since I was 10 years old. My mother got diagnosed with endometriosis when she was in her early 20s, before she had me. She had several surgeries and was told she wouldn't have another kid after me. She was on the Lupron shots and, immediately after stopping them, she had my brother, but then after that she had a full hysterectomy and several feet of colon were resected. I am sharing my story because, as women, we are failed. Failed time and time again for our pain. It fills me with rage.

Unbearable pain and bleeding started at 10 years old

When I was 10 and first started my period I remember it being god-awful. Awful in the sense that I was younger than all my friends. None of them had theirs yet and didn't for another three to five years. Awful in the sense that I bled so heavy that I would have to wear those really thick ultra-absorbent pads all the time. It was humiliating. At 10, you don't want to use tampons because they're scary. The pain would leave me wanting to be in bed in the fetal position with a heating pad and taking as much ibuprofen as my mom would allow me. My periods at the time would last anywhere from 10 to 15 days and would be extremely heavy for the whole duration. This continued for several years until I turned 13 or so. Then my cycles started to become more normal, and by normal it was still 10+ days of agony, but consistent, like clockwork.

I was 13, about to be 14, and I remember it was a couple days before my freshman year of high school was about to start. I woke up to use the restroom and went to push to go pee and felt a pop in my lower abdomen. I immediately felt like I was going to pass out. I couldn't sit up straight and could barely move without passing out. I called for help and my mom took me to the ER where they ruled out appendicitis/appendix rupture and took an abdominal ultrasound and CT. They said that it was Mittelschmerz pain, which by definition is when pain occurs on the side of the ovary that's releasing an egg. They gave me some pain meds and sent me home. When we went to see my primary care doctor, we discussed birth control and I began using birth control to help regulate my cycles and help with the pain.

Ruptured cysts sent me to the ER

When I was 15 is when I believe I got my first ovarian cyst. I felt pain and pressure when using the bathroom. I felt a pop and strained to use the bathroom. I switched birth control and went from using the pill to the Depo-Provera shot. This is when things started to go a little crazy. I bled the entire time I was on the shot. I gained almost 30 pounds. Around this time too is when I got referred to a specialist in immunology because of sinus-related issues and because my body was unable to get rid of a recurrent bacterial infection. I got diagnosed with hypogammaglobulinemia, which is a common variable immune deficiency. I spent over a year on antibiotics, which ruined my gut. At this point in time, it was hard for me to differentiate period pain with stomach pain as it was all the same for me and took over my life.

At 17, I graduated high school, got off the Depo-Provera shot and got back on a different type of birth control pill. I graduated early and began college. I was living in the dorms when I had my third or fourth cyst rupture. I woke up in the early morning hours to use the restroom, leaving my phone in my room as I thought it was only going to take me a minute. Well, like when I was 13, I pushed to use the bathroom and felt a pop and then proceeded to pass out in the dorm bathrooms. When I came to, I couldn't stand the pain. It was excruciating, I crawled back to my dorm room to call my mom to come get me and take me to the ER. I then crawled to the doors, and she took me. They discovered I had a cyst rupture that was the size of a golf ball. They treated me with pain medicine and sent me home.

The physician assistant left me feeling shamed and humiliated

During this time is when I started to see an actual gynecologist. She was top rated in my city at the time. We read nothing but good reviews from her. The first time I went in my mother couldn't accompany me, so she had handwritten a note explaining her concerns, about how she had endometriosis and several other family members have had it as well. She also stated the issues that I have had and how they are consistent with endo. I had to go to get my first pelvic exam with a P.A. who was less than friendly. She didn't explain the procedure until after she had done everything. At this moment is when I knew things for me would change forever as a young woman. The P.A. couldn't even read a chart to know this was my first pelvic exam and was harsh and shorthanded about it after the procedure. I was humiliated and embarrassed and felt god-awful. I got my first PAP smear at this time as well. I was 18.

When I was 19 is when we decided to switch birth control methods again. The pills I was taking didn't seem to be working for me anymore. I would take them as directed and, at the beginning of week three, I would start to spot. By the middle of week three, I would begin my period. I would wait until it was done and begin the next pack of pills, but the time in between my periods kept becoming shorter and shorter. I talked to my doctor's P.A. about other birth control options and she recommended that I try using a different style of birth control pills, where I take a pill consistently for nine weeks and then not take them to get my period for a week. Then I was to continue on that cycle to see if it helped bring relief. My period at this point was the same as it has always been – heavy, painful, debilitating. The pills worked for over a year and then I started to have the same issues that I did with taking the pills for three weeks. I would start bleeding before my pill packs were done and was getting very frustrated.

Years of debilitating pain and constant bleeding took a toll

When I was 20, I asked about other options besides the pill. Depo-Provera wasn't an option for me because it had me gain weight and I bled the entire time I was on it. We discussed the NuvaRing, the patch, the Nexplanon, and the IUD. I agreed to try the Nexplanon because it wasn't something I had to remember to take every day. Well, that birth control only worked for three months before I had them take it out. It made me sick. I was waking up every morning throwing up with heavy periods with big clots, and bloating but with weight loss and very painful cramps. The P.A. kept telling me to just wait it out and that it would get better, but as a young woman in her early adult life, it was affecting everything for me. My social life, my work, my relationships. It took a toll on me. Once we got it removed, I decided to try the NuvaRing. Out of all the birth controls I have used, this seemed to be the one. It worked really well until it didn't.

I was 22 at this point, still struggling with breakthrough bleeding on what seemed to be every single birth control that I used. At this point, I decided I was going to take a break from birth control for a few months, and let my body self-regulate its hormones. The three months I was off of birth control, my body felt normal, but towards the third month, the pain came back again. I was in a serious relationship at this point and decided that I should go back on birth control. I made an appointment to see my doctor to talk with her about our options. I specifically requested my doctor because, in the four years that I had been in her care, it was always a P.A. that saw me. I only met my actual doctor once. When I showed up to the appointment, it was her P.A. again, apologizing and saying that she was very busy delivering a couple newborns that day. I get it. I do. But again, I felt dismissed and not heard. We agreed to start the NuvaRing again.

A year after starting the NuvaRing back up again, I started having problems. I remember being on my period and passing an abnormal amount of clots and thinking to myself, this isn't right. Around this time too is when my period cramps stopped being in my back and lower abdomen. They started to encompass my whole vagina and the outside of it as well. It hurt to sit. It hurt to use tampons. It was all very painful. I was in the shower and had clots coming out. I called my doctor and explained to them what was going on. They didn't ask me to come to check what was going on. They told me to continue using my NuvaRing and to call back next month if it was still an issue. I had bleeding like this for over two weeks and then it stopped. At this time I switched doctors.

A new doctor and new health issues

I found a new doctor who I loved from the moment I met her. We did our consultation and we decided to move from the NuvaRing to the patch. She listened to me and explained in depth why the breakthrough bleeding was occuring. She told me that I did the right thing and that we could move forward as a team to find a plan that works for me, even if it's being on the patch for nine months and then switching back to the NuvaRing. I went back a couple months later to get my annual PAP and then, a week after getting it, I found out she was retiring and sending my chart to a new office with new doctors. I also found out at this time that I tested positive for HPV and needed to get a colposcopy done.

I spent a month trying to get a hold of my chart so I could find another office to schedule my colposcopy. I met with a doctor at this new office my other one had sent my files to, and this woman had the worst bedside manner I have ever experienced. I had this appointment scheduled for the colposcopy. They told me to take some ibuprofen an hour before my appointment and to expect to be there for an hour or so and then be able to go home. I got there thinking, I'm going to have this procedure done and, no. It was just an office visit. She explained to me what came back on my HPV and she explained the different cell changes and what they meant as far as cervical cancer. As I was about to leave her way of "making me look at the bright side" was her saying, well even if you do have cervical cancer, it's a cancer that grows slow, so don't worry. It's not like you're going to die overnight. You will be okay. Like, who the hell says that to people?

More tests revealed low iron and high white blood cell count

I scheduled my colposcopy for the week before my birthday. I got it done and, man, it hurt like hell. The results showed that I have CIN-1 Low grade changes. After that, I requested a different doctor because I refused to meet with and be seen by the woman with the worst bedside manners. This is when I met the doctor I have now. When I met with her to go over the findings of my results, we agreed to do a PAP every six months to see how long it takes my body to clear it. Around this time too is when I went in to see my primary care doctor for an inhaler because I was having shortness of breath and because of my immune deficiency. He had me get a pulmonary function test, which came back showing I had asthma. I also had a lot of blood work done and my neutrophil count came back really low.

In April, I got referred to a hematologist, who then did more and more tests to figure out what was going on. I got diagnosed with neutropenia and leukopenia with no known cause. My hemoglobin was fine but my ferritin (my stored iron) was low. I began taking oral iron every other day from May to September and it did nothing for me. I repeated my labs and my ferritin went from 27 to 15. I was becoming anemic, and we didn't know why. I then received two Iron infusions in November and may need to continue them. When they did their blood work, they found that I had a high amount of inflammation markers in my blood and referred me to a rheumatologist. Talk about doctors visits; 2023 definitely topped the chart with constantly in and out of doctors offices and tests done.

Finally, an endo diagnosis

is I am still on the patch at this point, and it seems to be working pretty well for me. I finally found a birth control that has given me no issues. Fast forward to December. It was the week before Christmas and I was at home on my day off. I used the bathroom and had pain all over my insides. Everything felt like it was on fire. I couldn't get comfortable to sit, to stand, nothing. I waited it out to see if it was gas, or if maybe continuing to use the bathroom would make it better, but i got no relief. I went to the ER, where they proceeded to run a bunch of tests. I had a rectal exam thinking it was an abscess. Nope. They gave me a CT scan, where they found that I had an ovarian cyst that was quite large – 5.7 to 5.3-6 cm on my right ovary. I followed up with my doctor, who said they normally wait to see, but we agreed to follow up with an ultrasound to check the size. The size stayed the same, but the pain got worse. Every time I used the bathroom, it caused me pain. Sex caused me pain. My period was very painful. We agreed to go ahead and schedule a laparoscopy. Well guess what? They drained my cyst and found that I had stage two endometriosis.

Was it endometriosis all along?

I meet with my rheumatologist in two weeks to repeat labs. Its looking like I may have lupus or rheumatoid arthritis, but with this new knowledge of endo, I'm thinking maybe it's been the endo all along? I'm living in a body that's okay on the outside, but literally slowly attacking itself on the inside. I am in pain everyday, everywhere. This is my story. These are my struggles.