Sick but Strong: Understanding an Endometriosis Patient

The worst feeling; when your body betrays you, holds you back and prevents you from living the life you worked hard for and being unable to control it.
Researchers said that 1 out of 10 women suffer from endometriosis. Most of the patients’ symptoms are either taken for granted or disregarded. Some are told that the symptoms are natural effects of the menstrual period while some are referred to as saps of modern hysteria.

Endometriosis is a painful condition that occurs when the cells and tissues that lines the uterus grows outside of it. It is often found on or around the pelvic and abdominal areas. Rarely, endometrial cells and tissues are found in other body parts like the heart and brain. These cells and tissues may grow and form patches, nodules, adhesions and scarring on the organs, may have the same menstrual changes similar to what’s inside the uterus. They also bleed during menstrual period and cause severe pain.

In women over the age of 25, endometriosis can make it difficult to get pregnant. This may be because the endometrial cells release chemicals that may cause inflammation that may interfere with fertility and affect the development of the embryo in its early stage.

Pain is the number one cue of endometriosis. As in severe pain. Pain before, during and even after a period. Pain during and/or after sex. Abdominal, back and/or pelvic pain. Pain when passing urine and moving bowels. Pain in the legs and thighs.
Heavy bleeding with or without clots. Irregular bleeding with or without regular cycle. Bleeding longer than normal and before period is due.

Increased abdominal bloating, tiredness and lack of energy, anxiety and depression due to ongoing pain and reduced quality of life; taking days off from work or school because of inability to function normally. These are just few of the symptoms but don’t explain what it really feels like.

I am Jogie Rodriguez Torres, a 23 year old dreamer and achiever from Negros Oriental-Philippines. I am sick but strong.

I started suffering the pain during my first menstruation when I was 12 in 2006. Since the very 1st flow I never had a regular cycle. I started to see a doctor about it when I was 14 and was diagnosed of simple hormonal imbalance. The doctor offered birth control pills to stabilize the hormones which my mother immediately disregarded as an option. So I lived with multivitamins and iron supplements.

Even with the pain, I tried to live a normal life: an active and outgoing high school girl. I ended High School as a valedictorian and was awarded with several academic and special awards but the pain still persisted specially in my 1st year in college when I quit from the dance troupe and dropped my usual activities that served as my exercise. For short I started becoming dormant.

Later in college, I became a loyal hospital patient. From July 2011 until May 2012, Holy Child Hospital became my 2nd home. No month passed by without at least a 3-day stay there. They focused on my chest pains and forgot all about the abdominal pain that I was still feeling. I was earlier diagnosed with Hyperventilation Syndrome but later concluded as Mitral Valve Prolapse. I was also diagnosed with Costochondritis which the doctors concluded as the reason for the constant pain in my thighs and legs. I was also diagnosed with depression and a psychiatrist took care of that. There was also a whole week when that I was not able to move my left body. It was not paralysis, as per my neurologist, my nerves didn’t handle the stress well.

Luckily with my MVP, it didn’t worsen and with the help of my specialist and therapist I learned how to slightly manage it. I still kept on complaining about the abdominal pain but they never gave it any attention.
With the never ending pain, I survived college. I held my dreams in my hand, got employed before graduation. A degree holder of Bachelor of Science in Tourism but with that success of course the pain was part of.
It was only 2 years of having 2 jobs irrelevant from my degree that I heavy-heartedly accepted my fate; I will never ever have the career I worked hard for due to my weak body. I have dreams but I have to put them aside. It will be forever be in my heart. I don’t exactly know what I want but I know I don’t have it now.

After graduating from a prestigious University, trying to live a happy-go-lucky life, the pain never faded a single bit. It got worst during the late weeks of January 2016. I suffered several episodes of severe pain and ended fainting in the office. Came May 2016 when I decided to see a Gynecologist. She thoroughly examined me and then later referred me for a trans-vaginal ultrasound. The results came after 3 days but the OB was out of town so I had to let another OB read it.
She told me that I had a 3cm ovarian cyst in the right and multiple follicles in the left but she emphasized that it was nothing serious. I followed all her plans. She provided several pain relievers, medicines and injectable hormones to “stop” the menstruation-initiating hormones. It would have prevented my menstruation, pain and to reduce the cyst’s size. With all those medicines and vitamins, there’s no change.

July 2016, after 2 months of massive medications, still the same. I was still frequently rushed to the clinic or hospital. One day, I visited my OB and the moment she saw me she got angry and told me I was overreacting. She again increased my dosage but it seemed to be useless.

After 2 days, the episodes occurred several times in one day and I dropped on the floor. It was already the 8th day of my heavy bleeding, the total opposite of what my OB told me. My partner rushed me to the hospital. They asked the same old questions and heard the same old answers. They were supposed to contact my OB but my partner refused and decided to consult another gynecologist. He got to choose from a long list of unfamiliar names but thanks God he was able to choose a good one.
My new OB continued my injectable hormones, pain relievers, other medications, vitamins and even prescribed herbal food supplements. Weekly visit to her clinic continued due to continuous pain. I was in that point when I can’t even understand myself. I only came to work for 1 to 2 days in a week.

The last 2 weeks of August I spent most of the time either in bed or in my doctor’s clinic complaining about the unmanageable pain. I didn’t want to talk to anyone except her. She told me it would be better if she do the surgery to remove the 6cm cyst and it would surely relieve me from all the pain. She told me that she wouldn’t be able to help me out if I won’t help myself but I still refused the surgery.

September 6, 2017 I was unconsciously rushed to the hospital again. My doctor insisted on the surgery and maybe it was the severe pain that made me concede. It had to be done immediately but was delayed due to my heart-failure issue. I had to undergo 2D-Echo again and had a daily visit to my cardiologist for monitoring. I was given my clearance on the 11th of September but I had to sign a waiver that both my cardiologist and orthopedist had to be present during the surgery.
I was scheduled for the surgery on September 14, 2016 but was already confined on the 13th for the necessary preparations which started at 5 in the afternoon. I was later advised to rest and take nothing, not even water after 8pm. I thought it was easy job but having no water was really very difficult.

In the next morning, they made me take a bath at 5am. After that, I mentally prayed the rosary without the Holy Rosary itself because I was not allowed to touch anything anymore. I thought I was ready but when it was time to bring me to the Operating Room, I decided to quit. My ever supportive mother and partner tried to calm me down and motivated me. I was crying unlimited tears from my room all the way to the OR.

The whole team prayed over me before starting. Preparation time was over and I had to face it. Shot of anesthesia was injected in my spine then another shot of God-knows-what was injected in my IV. After a minute or 2, my sight tripled then I drowsed off. I was woken up 3 times during the procedure because my pulse rate kept on going beyond normal.
I just looked at my beautiful OB smiling down at me then my eyes closed again. The next time I woke up, the 2-hour procedure was already finished and I was already being brought to the recovery room where Mama and Paul were waiting. I just smiled at them and went back to a long and dreamless sleep.

The planned Laparoscopy to remove only the cyst ended up with Unilateral Salpingo-Oophorectomy and Adhesiolysis. My right ovary and Fallopian tube were removed without me knowing and my left ovary and pancreas were scrapped because adhesion and scarring started in the area.
The moment I woke up, I was already in my room. Mama was beside me but Paul was already gone because Papa was around (there’s a separate weird story about this 2 men in my life.) I was too hungry to think about it. I asked for food and water but I was unfortunately neither allowed to eat nor drink anything for the next 12 hours.
After a month, I decided that I was fully recovered and ready to go back to work. I can still feel the pain; I can’t decide if it was my incision or it was still the usual pain.

2 months after the surgery, the pain was still constant. I frequently went to my OB so she decided to do another trans-vaginal ultrasound. It was then found out that a 3cm cyst was found in my left ovary. The doctor explained that as long as I have an ovary, endometriosis in my body would be alive. It was on that day that I decided that I was over with all the useless medications and get on with my life.

No one would really understand the physical and emotional pain of endometriosis patients, not even the most expert and specialized gynecologist. Only a woman with the same fate will.
Researchers say that the cause of endometriosis is still unknown, same goes with its treatment. Pain-management medicines and organ removals are the only choices. I don’t want any other part of my body removed.

On the 14th of this month, its exactly gonna be a year after my surgery, everyday I still wake up tired, stay up with pain but I go to bed with hope.

All that’s left for me right now is hope. I hope for a world where illness is not equated with weakness. Where people would understand the pain and believe that I am a strong woman because of every pain I’ve dealt with and won over.
Endometriosis patients are said to be prone to depression but with my supportive family, partner and friends, that’s too far from reality.

I am no longer scared of my betraying body. In fact, I listen to it when it speaks to me, to respect the strength of its voice and the truth of my own. I survived 10 years of pain, well, I will surely be able to survive another 50 years of it. And a baby, I want it badly.