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| 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
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