My Story

My fiancee and I (I look like I am from Jersey Shore after a  really bad spray tan)

Hello and welcome to my story. I have come to realize that a lot of people out there have a story like mine. I want to start with explaining my medical history. I want to use this blog as a way of explaining what I am living through. I hope to find ways to help living with endo and share them. I have trolled the internet for hours reading up on Endometriosis. I recently made a decision to fight through everything and to try to start returning to ‘normal’. I no longer want to let this disease dictate what I can and cannot do.

16-18

My history with endometriosis started when I was a junior in high school. I had suffered from heavy cramping during ovulation and during my period, but I had thought this was normal. My junior year in high school I started having what I now call ‘severe episodes’ of pain. They always occurred either late at night or very early morning. The pain also happened right before I would get a full blown heavy period. The episodes would always start the same. I would wake up in the middle of the night with mild pains. Usually I would go to the bathroom to see if I had gotten my period. Within five minutes of being awake I would suffer severe pain. I can’t tell you how many times I nearly gave my parents a heart attack. The pain was so severe I would yell for help, usually vomit, I would be burning up and incoherent. The very first time it happened my parents rushed me to the emergency room. I fought them because sitting still hurt and I preferred to pace when I could. The pain usually lasted 10-15 minutes. Afterwards, I could easily sleep for a full day. At the ER they did a physical and said I was fine. These episodes happened every 3-4 months. After the second trip to the ER my parents were told that the pain might be psychological. I will never forget how angry that made my parents. Endometriosis is in my family. I have a maternal aunt and cousin who have it. My mom started to believe that I might have endometriosis. She took me to an OB-GYN but would not allow them to do a vaginal ultra-sound because I was still a virgin (even though I was a teenager and was dating, everything about that area of my body caused me pain, I had NO interest in sex). My aunt had also told my mom that a vaginal ultra-sound cannot diagnose endometriosis. My mom asked for a laparoscopy and the OB-GYN said no. My mom was also in contact with my childhood doctor in Ireland (side story we moved to the US when I was 13). He had been my doctor until we moved. He was working on arranging a surgery in Ireland. Luckily for us, a surgeon who was researching endometriosis heard about us (my OB-GYN had just moved into a hospital building). During one of my many OB-GYN visits he came in to meet me. He was willing to perform the surgery. They operated on me Freshman year of college. I had chosen to go to a community college because I did not know how I would function away at a university with these episodes. My surgeon found endometriosis. He removed what he could. My OB-GYN’s office sent us an apology letter when they heard. I was told at 18 to stay on birth control and have children at a young age.

26 (almost ten years later)

Summer 2011

I lived symptom free for a long time. I religiously stayed on birth control. I did get lazy and did not maintain a relationship with an OB-GYN. During Summer 2010 I thought I had food poisoning twice. My doctor tested me for gastric problems like Celiac. By the end of the summer I was also incredibly fit. I usually bounce between 130-150. I was at 125, doing yoga and zumba and feeling great.

Thanksgiving Morning 2011

At 26 I lived with my fiancée (boyfriend at the time). He works at night. Looking back now I can recognize the fact that all the signs were there, I just wasn’t looking for them. By Thanksgiving I had very low energy. I did not work out anymore. When Pat came home from work on Thanksgiving morning he woke me with a kiss. It was at about 7 in the morning. I immediately ran to the bathroom and started screaming in pain. The only word I could make out was Mom. Pat called my mother frantic and determined to take me to the ER. Once he explained to her what was going on she knew right away that the endo was back. She talked him through the next twenty minutes. He got me painkillers, a cold cloth, stayed close in case I would pass out. When I came to (became coherent) I felt pure dread. I had lived without this for so long, why did it have to come back? I spent most of the day sleeping and feeling weak. Just like before my period came right after the pain stopped. My lower stomach felt like I had finished 100+ push-ups. I felt muscle soreness until the following Monday. My only happy thought was that I had a confirmed diagnosis this time. I found a doctor close to where we lived. His website said he specialized in fertility treatment and endometriosis care. I went to see him and he did a full physical. He promptly put me down to schedule a laparoscopy.

January 2012

My boyfriend proposed (imagine the excitement). At this point I was having problems with intercourse. Directly after I would feel incredibly nauseous. Also, on Christmas Eve morning (exactly a month after Thanksgiving) I had another severe episode. This one was not as horrific because I had prepared myself. The surgery went well. They found endometriosis in my ovaries and my fallopian tubes. They told me my fallopian tubes had been blocked for a long time. My doctor said he did not see any permanent damage. And he told me if I want to have a family I need to start it within the next five years. I was then put on continuous birth control.

February – June 2012

From the start I had problems with the birth control. Continuous birth control is supposed to repress your period. And yet I seemed to get mine every week. I bleed a lot. My doctor had me come in every two months for blood tests and a checkup. I told him that I didn’t feel like the birth control was doing anything. If anything, it was making me more nauseous, giving me heart burn, and causing cramps. He told me to double up my pills when I bleed. By the end of May I was feeling very dis-heartened. I also was starting to have issues with intercourse again. Right after, I would feel cramps. I categorized these cramps as moderate because I could function. They were painful enough to keep me awake.

June 2012

My fiancée and I went on our first vacation together. It was a family vacation for a wedding. On the third night of our vacation I had borderline severe cramps. I was able to walk them off and they went away pretty easily. These happened during intercourse. That happened on a Monday. On the Saturday (the last day of our vacation). We happened to be staying at a house with my mother. At three in the morning I woke up in intense pain. I had by far the most severe pain episode I have ever had. I vomited and nearly passed out. Afterwards I was exhausted. When we got back to the States I called my doctors office. A nurse told me it takes up to 6 months to get used to birth control. She told me to wait and  see if it happens again. Also, right after that pain I had a full very heavy period. All this happened while I was still taking the continuous birth control every day.

July 2012

Same story. Severe pain happened again. I didn’t go back to ‘normal’ after the vacation. I started having mild-moderate cramps every day. Intercourse had become a nightmare. The severe pain happened on a Monday morning. My fiancée and I had tried intercourse. Before we could even start I rain to the bathroom in pain and vomited. At that point I decided to go see my doctor. I got his last appointment on the Tuesday. He did a vaginal ultrasound and a pelvic exam. I really liked this doctor. But not after that visit. He focused on my nausea and vomiting. He said his ultra sound showed no abnormalities and the birth control should have been controlling my endometriosis. He said I have adenoymyosis (endo in my uterus) but that wouldn’t cause this. He informed me that endo is a chronic disease which causes chronic and not severe pain. When I told him my aunt who has endometriosis would get these severe pains too…he calmly informed me that in his 32 years of practice he hadn’t come across endometriosis causing this pain. He told me the pelvic area is complicated and I need to see another doctor i.e. gastrologist. My heart broke. The nurse on the phone a month before had talked about other treatment plans. I had looked online and heard about Lupron and Danazol. After literally crying for two days I decided to suck it up. I went online to the endometriosis associations website and found a doctor they recommended. I called his office and was told his first available appointment was the first week of August. I decided to wait.

This week (August 2012)

Since June I have been able to have pain free intercourse twice. I have mild/moderate pains every day. I am losing sleep and have absolutely no energy. To be honest I feel like I am becoming depressed by this which is frustrating. I can’t control what endo is doing to my body, but I want to start controlling how I react to it (emotionally). My new doctor was very skeptical at first. He did a full examination and told me there are treatment options from here. Lupron, Danazol or a new experimental drug. We are waiting on my old doctor to send my records over. I even went to his office and was told I have to wait. My new doctor asked me questions about endometriosis that no doctor has ever asked me before. He seems very knowledgeable and has had many published articles about treatment options. My fiancée and I would like to wait until we are married to have children. Which means I need a year. A pain free year would be amazing.

I started this because I honestly believe I am losing myself to this. My spirit is broken and I am physically exhausted. My relationships with friends and family are starting to suffer. Every day after work I just want to go home, take painkillers and go to bed. It is like I am letting this horrible disease define who I am. In the next few months I have set a few goals for myself: 1. Start exercising again 2. Start eating better 3. Take control of my body 4. Take control of my thoughts.

I hope what I figure out with this mess will help others too <3