I will be held hostage for the next 48 hours. I will not be able to eat, drink, or communicate properly. My body will be tormented and I will have excruciating pain that will bring on fever, nausea, and vomiting. I will be held in one room and will be limited to movements. I will cry and scream out for help but nothing will change the state I'm being held in.
No one can help me.
But also no one is doing this to me.
It's my body.
My body has turned on me completely. Almost punishment because I am without a child. Every time my monthly cycle starts either a few days before or after, my body becomes Iraq and the Taliban starts a full-blown attack inside of me.
I feel twisting, stabbing, pulling, pinching, throbbing, and cramping. I don't even know if these are the words to describe the pain I feel. I use various over the counter medications and other soothing mechanisms. This provides limited relief to just take the edge off so I can at least function and get around.
I have no insurance so going to the emergency room is always the last resort. That's if they even help me with the pain. The doctor may say I'm seeking narcotics; with that look, they give when they say, "Nothing is wrong, all labs are within normal limits, and nothing remarkable is showing on the CAT scan or Ultrasound". This sounds all too familiar because before the internal brutal attacks started with about 20 years of "Diagnosis: Abdominal pain of unknown cause".
This has been my normal.
And this is my story.
From my earliest memory till the time I was nine I was sexually abused. This was full penetration. I had a history of UTIs growing up that turned into kidney infections. There were exams done by any medical personnel that proved sexual abuse but nothing was done to protect me. The reason it stopped was due to my parents separating and my mom leaving her home with the kids.
Far beyond physical pain
However, while in the home I also suffered physical and emotional abuse. When that wasn't happening I was constantly pushed around by my siblings whether being tickled, or wrestled. I did not feel like I had any control over my body. Through all of these things, I developed a nervous condition. I was always nervous, jittery, and anxious. This nervous condition often left me with stomach aches that continued far into adulthood.
I was 15 the first time I can really remember one of my worse stomach aches; it was a few days before my cycle. I was out with friends and we were at a fun center. There were games, food, and laser tag. Things were just about to begin when I got this feeling of sharp cramping that I had never felt. I had to quickly get home and I just remember feeling weak, sick, and in pain. Within a few hours, the vomiting started and the pain got worse. I fell asleep with my stomach feeling like it was being twisted but by the next day, it was over.
For the next 24 years
Stomach pain becomes a part of my daily life. Most days it was manageable but a few times a year the pain was absolutely dreadful. After seeing different doctors I was eventually was diagnosed with IBS, gastritis, anxiety, depression, and PTSD. I was told multiple times that when in an anxious state, stomach issues manifest in the form of pain, diarrhea, and constipation. I was told all the things about eating correctly, limiting alcohol, staying healthy physically and emotionally. But no matter what each year I would still end up in the emergency room during these awful painful stomach attacks. And each year they would continue to say, “Stomach pain was of unknown cause”, and for me to follow up with my primary care provider.
My first two pregnancies each resulted in a blighted ovums; something that brought me further into depression. I eventually had two beautiful healthy daughters, but I also had 2 additional miscarriages. I felt so low trying to understand why my body would not work properly. Sex was also very painful at times. Positions like doggy were not enjoyable. I was told by a gynecologist that my uterus was tilted. She believed it was due to the sexual abuse and that was a big reason why certain sexual positions were not comfortable.
NOT normal pain
In August 2019, I was on my cycle and I started having the most intense pain. It felt like pulling, twisting, punching, and gripping. I don't even know if these are the right words to describe them but it felt like an attack. This was not like the "normal" pain I was used to having. This pain made that pain feel like I was wearing a cold wet sweater. Annoying but bearable. This was war. The Taliban had fully entered me.
When I went to the emergency room, I felt the doctor was not listening to me. He kept pushing in the direction of pregnancy and or sexually transmitted diseases. I told him there is no way I could be pregnant. I was not sexually active and I just had my womanly exam which came back normal. When the pregnancy test came negative, I then got blood work, a CAT scan, an ultrasound, and a pelvic exam. He was fully aware of my history of sexual abuse, miscarriages, and stomach pain. After all, came back "Within Normal Limits", I was sent home once again with the diagnosis of "abdominal pain of unknown cause”.
No one was listening to me
I was frustrated, annoyed, and hurt. I felt like no medical personnel was listening to me. This could not be it in life. I was overweight, but I cut out red meat, pork, and other processed foods. I stayed away from sugary foods and stayed active. I was a full-time massage therapist so although I did have work to do, I was doing okay in that area.
For the next ten months, my body started having these full-on attacks. The first three months, it was two days before my cycle, I would have the most intense pain one could imagine. I would often be left in the fetal position holding a hot towel on my stomach. I would use Ibuprofen, cannabis creams, over the counter pain patches and place them on my stomach. It would hurt to move, cough, or laugh. My body temperature would rise; I would feel nauseous, then start vomiting. Over the next two days the pain was cut in half and by day five it all stopped.
I did my research
Three months after that I only had pain during my period. Two months after that I was back to normal, no more attacks. For the next three months, five days post-period, I started having cramping. During this time, I researched; and it was then that I began learning about Endometriosis. The more I researched the more it made sense to me that I have it. I literally fit the description to a ‘T’. I was shocked by how not one of my doctors had ever brought this up to me. I even worked in women's health for four years. All I knew about Endometriosis was that it caused painful periods. But my periods were never very painful. But looking back, all my "intense stomach pain" was near and around my start date. I was flabbergasted as to how I slipped through without the proper diagnosis.
I learned 1 in 10 women suffer from Endometriosis, as well as 30% of sexual child abuse survivors. I read about the high percentage of people who are misdiagnosed, the miscarriages that occur, and the pain associated with it. This was literally me. I remember during the ultrasound when the technician pushed down on my C-section scar that I felt an intense pain shoot through me.
Endo in c-section scar
I started researching and found out there was a form of endometriosis that happened inside the C-section scar. As I started feeling my scar and intense pain shot through me. It only lasted a few seconds but as I massaged it was evident how tight that scar tissue was. I was convinced that this was a problem. The month was now February and I still had not seen a doctor. Partly because of insurance but partly the jumping around of the pain was throwing me off. I wanted to see if I kept massaging the area, maybe the pain would just stop.
For three months there was hardly any pain before or during my cycle. But in March, five days post cycle, I started having cramps. They were not horrible but it was not pleasant.
In April the same thing happened. Five days post-period I started having cramps again. It was a Saturday night when I started feeling them and by Sunday night I was sobbing into the phone talking to the ER nurse. I was frustrated. Technically I have not been diagnosed with endometriosis but I needed to understand if the pain I was having is normal for worse cases of this condition or am I at risk of something completely different. It felt like something was being pulled. Was my uterus about to rupture? Is this my appendix or is this normal pain for this condition? Sure enough, I am not given any advice other than to come in.
Pain that sent me to the ER
I decided to take some Ibuprofen and lay down. By the time I woke up in the morning the pain became worse. I felt nauseous, fever, and chills. I go into the emergency room and of course, this is all during the COVID pandemic. When taking my vitals my BP was 190/110, my HR was 110, I had fever, chills, and the pain was unbearable. After being in there for 10 hours (6 hours just waiting for an ultrasound) my test came back as follows: Elevated WBC and both the ultrasound and CAT scan showed an infection on my fallopian tube and ovary: Tubo-Ovarian Abscess. I was admitted to the hospital for the next two days. I had IV pain meds, antibiotics, medication for nausea as well as other meds. Then I started vomiting. This was the worst of the worst. When the doctor came in to see me she was not convinced that I had endometriosis. She was pretty sure this was an infection from PID and that my periods were just getting worse because of age and hormones. She went over my options but said as long as my condition improved, surgery would have to wait. The options we discussed would be removing my right ovary and fallopian tube, a full or partial hysterectomy, or trying a few medications.
This time my ultrasound showed something completely different
I did get better. By Wednesday I was ready to go home with instructions to return in two weeks. When I returned the ultrasound was repeated. This time the Dr. told me that it looked completely different than the previous ultrasound. This time there was no abscess on the fallopian tube, but only what it appears to be an endometrioma on the right ovary that appeared to be “chocolating” on the ultrasound. She was now convinced that I have endometriosis, however, because of the extreme difference in the ultrasounds, she would not know what exactly was going on till she operated. She did explain to me that where the endometrioma was and the way it appeared was that it was fusing together with my ovary. She explained that they would try and do their best to just remove the cyst but there was a good chance that the ovary would be removed as well. I was still certain that the other part was due to my C-section scar. She felt the rope-like material that was inside me but she thought it might be mesh from hernia surgery I had in the eighties. That brought on a whole new issue that I would have to go see a general surgeon. I am still not convinced of the latter.
The news to this put me in a whole different state of mind
I became so angry. I was pissed at the man who sexually violated me for a big part of my adolescents. I blamed every doctor and healthcare provider that I have ever encountered. How did this go misdiagnosed for so many years? I just kept thinking this was the reason I had my four miscarriages and if they would have found this out much sooner, how different would things have happened for me. I cried for three days straight. I spent hours on end researching this topic and it quite evident what this was.
Two days before surgery, 5 days post-period; I had another attack. Excruciating pain, vomiting, and unable to move. I couldn’t laugh or cough because it hurt so badly. On the day of surgery, the pain was cut in half but I was extremely tender and sore. I was prepared for the worse but tried my best to stay calm. After surgery, I was told that what should have been just a few openings through my stomach actually turned into me being cut open as if I had a C-section. What should have been day surgery turned into me being admitted into the hospital. What should have been a week recovery will now be a 6-week recovery. The good news was my right ovary was saved. And the cyst, which was the size of an orange, was removed.
Researching & arming myself with information was critical
The next day my doctor came to my hospital room and told me she was impressed with all my knowledge and that I pretty much self-diagnosed myself correctly. She said the stage of endometriosis I had was severe and the back of my uterus was severely scarred. My options would vary from medication to hysterectomy. Although I am one year to 40 I still want another child. We also spoke about the differences in the ultrasounds. She believed that blood did get stuck in my fallopian tube causing an infection, however, she still was unsure why the ovary looked so different between the two.
Today, I am still recovering from the surgery. I am thankful that I finally got the answers I so desperately needed. I will be starting the medication Orilissa in the next few months if the attacks continue. I hope to push off surgery but I am okay if this is the direction that I have to go in. I am committed to helping not just women, but everyone learns more about this. This is something that affects our whole lives. It can keep us from work, important events, being intimate with our partners, and have a huge effect on mental and spiritual.But there is hope. There is treatment and I am committed to being part of that.
Do you know what your endometriosis phenotype is?