The following is a
heart-wrenching story told by another lovely Endo Sister, Danielle. I recently met the Danielle through twitter, and was so happy that she agreed to share her story. Danielle has been down a long, painful path before finally being diagnosed with her illness. Please read on to learn about Danielle's struggle with bad doctors, endometriosis, and the emotional pain after her diagnosis:
Although I was diagnosed with endometriosis
in October of 2011, my struggle with the disease goes back seven years
ago. I knew something was wrong when I
started getting “stomach aches”. These stomach aches, located in my lower
abdomen and lower back and sometimes stretching up to my stomach and chest,
were all consuming and agonizing. On multiple occasions I found myself doubled
over in agony, clawing at my own skin as I broke into a cold sweat. Almost as quick as they started, the “stomach
aches” would end, and I would be left feeling rather confused as to what these
pains were. My mother took me to see a doctor, but no tests were run and the
matter was left unresolved. I didn’t think much of it, as the mystery pains
seemed to have gone away on their own accord. When I began getting my period
regularly in High School, I thought that extremely heavy bleeding, agonizing
cramps, and nausea was entirely normal. My friends often complained of cramps,
and I figured that I wasn’t experiencing anything different. My condition took
a turn for the worse around High School graduation in 2010. I recall my
“stomach aches” had returned, and I couldn’t escape this painful panging
sensation over my left ovary. I didn’t complain to my parents about the pain-
I’ve always been a tough cookie and kept from complaining about things. But as
the pain in my abdomen worsened, my mother brought me to the family doctor. The
doctor set me up for an ultrasound, as he suspected I may have had an ovarian
cyst. He also had me complete a test to determine whether or not I had stomach
ulcers, which he suspected were the cause of my mystery “stomach aches”. When the test for ulcers came back negative,
the subject of my “stomach aches” was dropped and entirely forgotten, as my
ultrasound results returned and it was clear that I had a small ovarian cyst.
The family doctor then referred me to a gynecologist, and that is when my
nightmare began.
In the weeks preceding my first ever
gynecological visit, the pain over my ovary worsened. Between periods, I had begun to bleed a
thick, heavy, black discharge. I recall being at my friend’s Halloween party,
and breaking down and bawling in his basement. I was terrified to find that my
panty-liner was soaked through with black
blood, which was different than the regular dark blood I often got before and
after my regular periods. I knew something wasn’t right, and anxiously awaited
my visit with the gynecologist.
When my appointment with the gynecologist
arrived, I was tremendously nervous. I have always been extremely private about
my body, refusing to have physicals done at the doctor’s. The gynecologist was
a very old man. What I am about to tell is entirely true and without
exaggeration: this man had been practicing gynecology since the early 1950’s.
He looked so old and so frail; it appeared that he would simply die just
standing there in his own office. It was appalling to me that a man so old was
still working! He made it very clear, though, that he had retired but was
pulled back into the work force due to a shortage of specialists. The whole
appointment started off on the wrong foot, as I was extremely nervous and
uptight. I sat there with my hands in my lap, rubbing my sweaty palms against
my sweatpants as I told the doctor about my recent diagnosis. Naturally, I
wanted to know what the next step was. The old man told me that he would like
to conduct a physical. My eyes grew wide and I shook my head no. The doctor
told me that it would be extremely beneficial to have an internal physical
done. I recall crying out that I was still a virgin and was not keen on the
idea. The old man doctor offered a different internal approach, reminding me
again that it would be extremely beneficial and help him make suggestions about
my next course of action. I grudgingly agreed. I really didn’t handle the
procedure well, and I was a complete head case by the end of it. The add
insult to injury, after the examination
the gynecologist began asking me questions about my home life. He asked if I
got along well with my brother, if my mother and I fought, and if I was happy
at home. I rudely interrupted his questions, asking him what relevance my home
life had to the cyst on my ovary. He proceeded to say that sometimes mental
stress can exert itself on the musculoskeletal system. He told me that the pain I was feeling was a mental projection, and
that I would not need treatment for the cyst. Outraged, insulted, and
humiliated, I demanded my family doctor refer me to a different gynecologist.
And that is when I met Doctor C.
Dr. C reviewed my previous ultrasound
report and suggested that I be put on a birth control pill to try and shrink
the cyst. Having stubbornly clung to my virginity for eighteen years, I had
never been on the pill, and the idea scared me. I was worried about being put
on hormones, feared they would make me gain weight, and make me moody. But alas
I agreed, and Dr. C had me put on Cyclen, and had me set up for another
ultrasound in a few months’ time. I
began on the Cyclene but didn’t notice a change in the pain on my ovary. I had
stopped bleeding the sticky black blood, but I was frustrated that the pain was
still present. My ultrasound showed that my cyst had grown since my first
ultrasound, and was about 6-cm in diameter. I was kept on the pill, and Dr. C
said we would monitor the cyst with regular ultrasounds. I had asked about a
laparoscopic surgery, but Dr. C said we would use it as a last resort and in
the meantime continue with the hormones. As the months went by, I found myself
becoming disabled with the pain. It had been bad before, obviously it was
enough to spur me to see doctors and specialists. But it worsened, to the point
where I could no longer take part in physical activity. I have always been a
very athletic girl. I am a talented horseback rider, competing in barrel racing
events in the summer and show jumping in the winter. While on the top of my
game I was clearing nearly five feet on horseback and was confident in myself
as an athlete. But I found that my pain was aggravated by physical activity,
and my gynecologist advised me to take it easy and refrain from sports, as the
cyst could rupture and cause an infection. I kissed a ski season, show jumping,
and clubbing goodbye. Another ultrasound in the spring concluded that my cyst
had grown again, but Dr. C still didn’t want to operate. I was convinced that I
was stuck with the 9-cm large cyst (it was constantly growing, disturbingly by
increments of 3-cm in all directions).
In July of 2011, I invited two friends to
visit my family and I in our cabin in the Rocky Mountains. The weather was
gorgeous, and my athletic self was dying
to go play in the mountains. I was holding off on mountain biking (my dearest
father I am so sorry that beautiful Mountain Bike you bought me has been
collecting dust- one day when I am healthy I will use it), but thought that a
simple hike would be harmless enough. We all head out to the mountains and
spent a few hours on a Saturday afternoon hiking. I felt the cyst was
aggravated, but I ignored it. We chose a more challenging hike the next day,
and I loved it. The endorphins allowed me to ignore the pain in my ovary, and I
felt so free being able to use my body again. Little did I know, I would be
paying for that weekend of hiking with the most excruciating agony.
On Monday, after my friends had driven
home, I was struck by a sudden pain in my abdomen. I cannot put into words how
bad the pain was. I managed to get myself into the bathroom, where I felt onto
the counter for support. My entire body had broken into a sweat, and my
complexion was stark white. I began to moan in agony, and my knuckles cracked as
I gripped the counter top. I began to cry, and soon panicked when I realized
the pain was getting worse rather than subsiding. I collected myself as much as
possible and made my way downstairs to find my parents. My father helped me
into the car, where I screamed and writhed in my seat as he drove me to the
hospital. The doctors at the hospital were amazing and patient, giving my
painkillers and saying soothing things. The pain began to subside, and the
nurses suspected my cyst had ruptured, or I had twisted my ovary. If this was
the case, I would need to be transferred to a bigger hospital in a city two
hours away and it was an urgent matter, so I had an ultrasound completed right
away. To everyone’s surprise, the cyst was intact. The doctors were baffled and
didn’t know what was wrong. One doctor suggested that I had “bled into” the
cyst, causing it to enlarge suddenly. That was the answer I accepted and I was
sent on my way. Upon returning home, I made an appointment with Dr. C. I told
her that I wanted surgery, and she agreed that it would be the right thing to
do. My surgery was scheduled for October, 2011. And I couldn’t wait.
When October finally rolled around, I was
mentally prepared for my surgery. I was excited by the prospect of having my
old body back. Although I was excited, I was very nervous. My father told me to
“buck up”, so I shut my mouth and didn’t make another peep about being nervous.
My father saw me into the waiting room, then left the hospital, telling me to
call him when I was done. I’ll admit, I was taken aback and hurt, but I kept my
chin up and bravely continued on. I remember being wheeled into the operation
room, which was freezing cold. I eased myself out of the rolling bed and onto
the narrow metal operating table, then a very nice woman attached electrodes to
my chest and a drip to my wrist. It was then I began to feel overwhelmed and
scared. I was all alone in a cold room on a metal table, and soon, my belly
would be cut open. I maintained my composure as I met my anesthesiologist (her
name was Dr. Sweet). But as the attendant (the nicest old lady ever) lowered
the mask onto my face, I began to cry.
I awoke to a nurse trying to slip
disposable undies over my legs in a recovery room, and I began to scream. My
face was extremely itchy, and I pulled the oxygen tube out of my nose in a
panic. I was crying, and screaming for my boyfriend at the time. I slipped out
of consciousness, then awoke in a different recovery room. I threw up, felt extremely weak, and recall my
stomach being bloated and tender. My incisions had bled through my gown and bed
sheets even though they were covered with gauze. My face was itchy from the
morphine I was on, and I wanted my father or my boyfriend to be there. A doctor
that had been assisting Dr. C during my operation came to visit me, and that is
when I learned I have endometriosis. Apparently my surgery had been
complicated, and I had been under for 4 hours. My cyst, which turned out to be
the size of a tennis ball, had ruptured during surgery and made mess in my abdominal cavity. They discovered
that I had “mid to high grade” endometriosis. The endometriosis was on my
ovaries, my fallopian tubes, the outside of my uterus, my abdominal walls, and
my bowels. I was shocked. There I
was, lying in a hospital bed literally just bleeding through my pajamas, being
told I had a disease I had never even heard of before.. I was high as a kite on
my drugs, and struggled to comprehend everything. The Doctor told me that Dr. C
would discuss everything in our follow-up appointment.
Discussing my disease with Dr. C was hard
for me. I cried during the appointment, as I learned that infertility is common
amongst women with endometriosis. This was crushing to me, as I want to be a
mom so bad. My health took a serious nosedive
after my diagnosis. I became depressed, and after explaining to my
then-boyfriend about my condition and the possibility that I may not be able to
have children, he cheated on me and left me without a goodbye of any sorts. I
developed a serious case of depression, and was prescribed a daily dose of
Prozac. I developed an eating disorder, and became extremely skinny. When my
pain worsened and I developed another cyst (once again on my left ovary) Dr. C
suggested that I have a Mirena Coil inserted. I agreed. Having the coil
inserted was excruciating. I was
still a virgin, which caused me to feel extremely miserable about having the
coil inserted. I screamed and cried during the procedure, as it hurt so much. I
even threw up in the car on the way home. After the IUD insertion, I bled
extremely heavily constantly. The amount of blood I was losing in combination
with my anorexia left my extremely weak. I was hardly over 100 pounds, and was
fainting and falling down the stairs on a regular basis. Truth be told, I was
just full out miserable. I was so pale in the face and had such dark purple
bags under my eyes that people stopped talking to me. My arms were bruised from
all the blood tests I was having, to the point where I looked like a heroin
addict. My hair was thinning and falling out, and I found no joy in life. I bled heavily and without end for six
months straight. Six months. Imagine being on your heavy period for six months without rest. The
bleeding was so heavy that one day I sat through an entire lecture and bled
through my tampon and liner and through my jeans. My whole bum was stained red
and I had to walk around the university with my leather jacket tied around my
waist. I was crying constantly, and was making frequent appointments with Dr. C,
complaining about pain and bleeding and feeling hopeless. She assured me that
it was normal to bleed for a long period of time after having Mirena inserted,
so I just shut up. During this time my mother was getting exhausted with me.
She was tired of taking me to appointments, tired of picking up prescriptions,
tired of her daughter looking so terribly sick. I remember sitting in the
kitchen one day when my father returned from work. He looked at me, long and
hard across the counter, then said “It looks like someone punched you in the
face.” He was right, the bags under my eyes made me look like someone had
broken my nose.
But in the Spring of 2012, something
amazing happened: I met my current boyfriend. I was determined that I wouldn’t
tell him about my endometriosis. I was sure he would leave me, just as my ex
had. But he noticed that something wasn’t quite right. I was always “on my
period”, I often complained of abdominal pain, and in almost every candid photo
of me since 2011 I am seen with an arm crossed over my abdomen. So I told him.
I told my boyfriend a month or so into our relationship that I had a disease
called endometriosis. He asked a few questions, and that was that. He has been
incredibly patient and supportive with me during my healing process. When my
body finally accepted the Mirena, the bleeding stopped and I haven’t had my period
in about 8 months. Although I still have a cyst and I still experience pain, I
am very grateful I no longer get my period, which is when my pain would be at
its worst. Most of the time I am pain free,
and I sometimes even forget that I have endometriosis. But the disease
makes sure to remind me that it is alive and well- I cannot handle any vigorous
movement. Any twisting motion causes me agony, as the lesions gluing some of my
insides pull apart. Sometimes, even something as simple as sitting down or
getting up out of my seat has me frozen as I’m overcome with pain. I recall
chasing my boyfriend’s younger brother around outside last summer. I sprinted
after him, then collapsed onto the lawn, gasping for breath. The agony in my
abdomen was unreal, like someone had stuck a vibrating cheese grater in there.
I cried and clutched my belly and prayed for the pain to subside. One of the
biggest struggles I have with endometriosis is the problems it causes with
intimacy between my boyfriend and I. I did lose my virginity to him, and while
I do love him and enjoy sleeping with him, sometimes I simply can’t as the pain
is unbearable. I’m ashamed to say that I feel like less of a woman because of
this. It has made me anxious and insecure, and endlessly frustrated. But I am
reminded that my boyfriend is kind, patient, and gentle with me. For this I am
incredibly thankful. I tried the
medication “Visanne” and it seemed to help to an extent. I will be picking up
my prescription for Visanne and then begin a regular exercise routine.
In the end, I am extremely thankful that I
have been diagnosed with endometriosis at this young age. Because of this, I
can work on preventing the spread of the legions, thus increasing my chances of
having a family. It also gives me peace of mind, knowing that endometriosis is
the cause of my mystery “stomach aches”, the reason why I had to be rushed to
the hospital in July, and why going to the bathroom during my period was excruciating. To learn that there was a
reason why I was hurting was such a relief. I cannot express how thankful I am
to have found this support group, my lovely endo sisters. To know that I am not
alone and that we are all here for each other is incredibly comforting. A lot
of people brush us off. Because we have an invisible disease, many don’t
understand the impact it has on our lives. To know that we have each other and
to continue to raise awareness is so important.
-Danielle
Thank you for sharing you story Danielle, endometriosis affects so many aspects of our lives. Endometriosis is not just a pelvic disorder - many other medical conditions can arise from endometriosis. I pray that you were able to overcome your eating disorder. Thank you for helping to raise awareness on endometriosis.
If any of my readers are experiencing eating disorders or depression due to endometriosis, please reach out to me. I will help you find help.
xo Heather
