A frequently asked question and the beginning of my Endostory is, "when did you start having pain?".

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It all started when I was 11 years old and went home from school sick one day. I woke up from a nap in pain and covered in blood and realized I was just having my first period. You always remember your first. Little did I know, this would be the beginning of a long, painful, and bloody battle.

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So what was wrong? Society told me "nothing, you're just having your period". Okay, I think, so this is just a normal part of being a woman. I expected it to be painful and uncomfortable as my body was growing and using new muscles, but this was a new level of pain for me, chronic pain.

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Growing up I would constantly call my parents to come pick me up from my friend's houses as "my stomach hurt" again.  It was around 16 years old when I felt like there was always something wrong with me; nausea, cramping, bloating, painful periods, diarrhea, constipation, low back pain, and I felt tired all the time.

 

So, with all kinds of symptoms came all kinds of diagnoses and came all kinds of medications. They treated my pain, they treated my brain, they made me feel like I was insane. They even had to treat all the symptoms caused by taking all the different kinds of medications and hormones that they prescribed to me in the first place. I was questioning my food, water, sleep, and exercise, while balancing my medications and my mentality. But then the stomach pains got worse.

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For quite some time I had been having stabbing pains in my abdomen which then radiated through my back and down my legs. At times it felt like I was sitting on a rock, if I was even able to sit at all. I tried all kinds of pain pills, hormones, ice, heat, chiropractic, physical therapy, massage, stretching, baths, yoga, meditation, acupuncture, and diets, but I only found temporary relief, if any at all.

 

My doctor suggested I try taking birth control pills continuously, which did help alleviate some of the pain associated with my periods, but I still had daily chronic pain. I tried all sorts of pain killers and ended up taking the maximum daily dosages. I would scare myself if I did not remember to write down what, when, or how many pills I had taken. No matter what I did the stabbing pains were still there.

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It got to the point that I could no longer sit at my desk at work. The pain was so severe I felt like I was unable to function and take care of myself properly anymore. My family doctor had scheduled a pelvic ultrasound but before we could go over the results I found myself in the hospital in crippling pain. It was the New Year's weekend and the hospital was extra busy. Sadly they sent me home with more pills which I was already regimented on.  

 

I didn't eat or sleep for 2 days. I remember having a bath in the middle of the night and taking some pain medication but I was unable to keep it down long enough for it to help. My husband found me sick on the bathroom floor the next morning and took me back to the hospital.

 

I could barely answer 10 when asked my pain level. My husband insisted we would not leave until someone helped me. This time I was given a bed and put on a wait list for emergency surgery. The doctor held my hand while I was in tears because the examination alone was beyond painful. So, they did another ultrasound and found I had a baseball sized cyst on my ovary. Time to operate. The doctor was able to remove the cyst through laparoscopic surgery but then informed me that they found out I had a disease which is called Endometriosis. Happy New Year.

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Endometriosis! It sounded really horrible but I finally felt like I had validation. I wasn't just sick, sore, and tired all the time, I had Endometriosis. I also learned that it is listed as one of the most painful conditions and that there is no cure for this disease. They say it wont kill you but the pain is so severe you will wish you were dead. 

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Lucky for me the doctor that performed my surgery took me on as a patient. We tried all kinds of remedies from hormone pills and Lupron shots, to pain medications and even more surgeries. I was diagnosed with Stage IV Endometriosis and my doctor told me that this disease can not only cause pain but can cause infertility too so if we wanted to have children we needed to start trying right away. Then came the serious talk with my husband. Do we want children, do I want to be in pain during the process, and what other options do we have? The doctor wanted us to have the best chance we could at having children so I endured more pain and more tests.

 

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I had a sigmoidoscopy, a HSG test, more ultrasounds, and a MRI. We were then scheduled with an Endometriosis specialist at BC Women's Hospital in Vancouver. After several meetings we finally had a surgery date.

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The surgery went very well and they were able to remove lots of the endometrial tissue and scar tissue. They separated my uterus from my ovaries and bowels, removed a nodule (my sitting rock), and ended up removing my appendix too, (who needs that anyways). As soon as I was healed from the surgery we decided to stop taking birth control and start trying for a baby.

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After almost 2 years of trying to conceive on our own, we were referred to a fertility clinic. My husband and I both passed our fertility tests! 6 weeks before our appointment with the specialist we found out we were pregnant. We kept our appointment, met with the doctor, and got to see and hear our tiny miracle's heartbeat on one their sensitive machines. I have my daughter's first recorded heartbeat tattooed on my wrist.

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A common myth is that pregnancy is a cure for Endometriosis. I wouldn't quite say it cures it but not having periods while being pregnant was a bonus.

 

So, after a long day at work I fell asleep, only to be woken up in the middle of the night to my water breaking. My husband made the long drive down to the hospital and wheeled me into the labour room just in time for the nurse (not doctor) to delivery our baby. Our daughter was born premature at 33 weeks. After spending some time in the Victoria NICU she was happy, healthy, and ready to come home.

 

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As our little girl grew we decided to try for a sibling. And after a few months of trying we were pregnant again. We were very excited and knew the risks but we still informed our family and friends that our daughter was going to be a big sister. Then one day, while I was at work, I had a miscarriage. I tried to find comfort that it was early in the pregnancy but I still tear up thinking about the future I envisioned.

 

So, even though we were devastated, my husband and I tried again. Not long after I had the miscarriage we became pregnant again. This time we were reserved and did not share the good news. I was guarded and pessimistic and found I wanted to protect myself from the inevitable hurt. But the baby was strong and growing. Finally, my hopes for the family I had dreamed about were coming true. I took care of my body and the tiny baby growing inside.

 

 

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I went in for a follow up with the doctor after one of my routine pregnancy ultrasounds and she asked me to sit down, took both my hands, looked me in the eyes, and said "there is something wrong with your baby".

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I could not fully process what she said to me after that because all I could hear was the same sentence over and over again, "there is something wrong with your baby". My fears came true and I was crushed. I felt like the world was collapsing and I couldn't breathe. I just put one foot in front of the other and knew we couldn't make any assumptions or make any decisions without having all the information.

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So more tests. I had an amniotic fluid test where I imagined them popping me like a balloon, (I didn't pop). And although we were clear for the common screenings, each test seemed to bring more bad news. It was the worst rollercoaster ride of my life. There was something wrong with the baby's eye, okay we can live with that. Then there was something wrong with the baby's heart. My heart broke. Not only was I dealing with pregnancy hormones and chronic pain but the stress and heartache of the situation was too much. I reached my low. I knew I had to pull myself up again, so I decided all I could do was love. Love my baby, love my body, and love the time we had together, how ever long it may be.

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My water broke 1 month early and they rushed me to the hospital by ambulance this time. My mom comments about the smile on my face that day as I knew I was finally going to meet my baby. The baby was breech so I was prepared for a cesarean section. I received an epidural and had to lie down with my arms secured to the sides. With my husband holding my shaking hand, the doctors delivered our baby girl. Hearing her cry was the best sound in the world. It was in that moment that I could finally let it all go. Then we saw her, our sweet, tiny, healthy, baby girl. My husband held her close so that I could see her and she could touch my face. All I could do was love her.

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Because of complications from my Endometriosis, the c-section was more difficult than they prepared for and I was put under so they could stop the bleeding and complete a full surgery. The typical 1 hour surgery ended up taking 4 hours instead. I found the cesarean section was much harder and took a lot longer for me to recover from. I did find we were veterans in the NICU, so our newborn baby was home sooner than the doctors had predicted. 

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Once again the pain started to increase. Down my legs, around my hips and through my back. I would try ice, heat, stretching, baths, breathing exercises, diet, chiropractic, yoga, massage, acupuncture, and all kinds pills but nothing really seemed to help. 

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I met with the specialist who performed my Endometriosis surgery and we discussed options. We felt my only option at this point was a full hysterectomy. I was one of the "lucky ones", while although I had chronic pain, I was still able to have children. My journey was over and it was time to take this ticking time bomb out of my gut. The doctor scheduled a hysterectomy for 6 months after my daughter's birth in order to give me enough time to heal but not enough time for the diseased material to start building again.

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So I was tested and scanned in preparation for the big surgery. I even received colostomy bag markings and instructions. I finally had a full hysterectomy at age 32. The doctors had tried performing it first through laparoscopic surgery but the damage was too extensive so they opened up my c-section scar instead. I woke up from surgery and one of the first things I asked was if I had a bag, to which my husband calmed my concerns. He said my first words were "I am alive", which I was also very worried about. The doctor said "you made us work girl" as the 4 hour surgery took over 8 hours to complete because they found my insides were cemented together.

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So, that brings us to now, I have 2 beautiful little girls, a loving husband, and a very supportive family, but I still have chronic pain. My doctor said there is nothing more they can do for me and I told them that I started drawing a chronic pain comic and we laughed and laughed.

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Endometriosis is a condition where the tissue that normally grows on the inside of the uterus grows on the outside as well. This debilitating disease can cause very painful lesions, cysts, and scar tissues that can bind the pelvic organs together and can even spread to the lungs and the brain. It can cause chronic pain, infertility, digestive issues, and a number of system shut downs and flare-ups. There are no known causes and no known cures and it is hard to diagnose without using the visual aid of surgery.

 

 

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I am an Endometriosis survivor and an Endowarrior. To all the people who are fighting battles that we cannot see, please know that we are not alone in our fight. Find strength in pain, remember to love your body, and just keep breathing.

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Thank you for taking the time to read my story! 

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Alisha Winder

 

Endomyline Publishing