The newest Endo Journey post is written by Dominica. Dominica has been on a very difficult path while trying to be diagnosed. Please read on to learn about Dominica's life with Stage IV Endometriosis:
My story actually starts in 2006. But before we get into
that, let me tell you about the symptoms I was having but never actually known
what was going on. Growing up I never had bad periods. I didn’t have my first
period until I was 16. They always seemed normal, lasted about 5 days, no
bloating, no PMS, no painful bowel movements, medium flow, and since I had
never had sex there was no pain to connect the two with endometriosis. It wasn’t
until I was 23 that I started experiencing painful sex.
Looking back, this was
more than likely my first symptom. I had been told that I had a tilted uterus
so I just kind of figured that was it. I grew up never openly discussing issues
such as this so I never brought it up to my Gyn. That subject was just something
I didn’t share with anyone. I didn’t even tell my boyfriend at the time. It got
to the point where I just couldn’t stand the pain. Now, I had been seen by a
Gyn twice and everything was always fine. Since I did not have any insurance I
had to use the Indian Health Services. In order for me to see a Gyn there I had
to get on a waiting list and sometimes you had to wait 4-6 months just to get
seen. Crazy right? I decided it wasn’t worth the wait and I could deal with the
pain. I know. I was pretty naive. Around this time my periods started getting
heavier. They started lasting from 7-10 days and the pain? It got to the point
where I couldn’t move. I would stay in bed the first two to three days of my
period because it was just too painful to walk, to sit, to do anything. 2nd symptom? I would get so sick I
couldn’t even eat because nothing would stay down. I also started feeling like
there was a mass, in my right side. It’s hard to explain but I just knew
something was there. It hurt when I laid on my right side, and as soon as I
laid on my left, I felt some pressure being relieved on the other side. I dealt
with this until I was 25, or until 2006.
I got married in March of 2006. We had come home from our
honeymoon and I went back to work.
At this time I still hadn’t gotten any
insurance, I was working part-time at Michaels and was planning on getting on
my husband’s insurance as soon as possible. That weekend, after we got home, I
had some terrible pain in my right side. I had a fever and felt like I had the
worst stomach ache ever. I headed to the ER at the Indian Health Services in
Phoenix. When I got called in, at first they thought it was appendicitis. But
after doing an ultrasound they ruled
that out. Next, I had a doctor come in and do a vaginal exam on me. I told him EVERYTHING.
He then left, not saying much, and moved me to a different room. This time a
lady came in and asked to do another exam. I went over all my symptoms again
and then she left. Uh? No one told my why they were even doing a vaginal exam. They
ran some tests and came to the conclusion that I had some sort of bacteria in
my intestines. I got admitted, staying in the hospital for 4 days. I was
released and went back to work.
I continued to have all my “normal” pains and
continued to work and try to live a regular life despite the pain. In September
my pain was now a constant thing. I would be working and all of sudden have a
sharp pain would cut across my lower abdomen. I remember standing in places for
a few seconds until it passed, then continue working. By this time I was a
Department Manager and being on my feet and lifting big boxes was routine. So,
the pain was pushed aside. It was at the end of September, I was at work doing
my normal daily routine and something happened. It was like someone had stabbed
me in the right side. I belted over in pain and could not move. The pain was
excruciating. I was in the middle of the aisle, with customers around and my co-workers
staring at me. I started to cry. One of the gals I worked with ran up to me and
offered to take me to the ER. I couldn’t even walk out the front door but I
made it. Once I got to the ER I was admitted very quickly, put on Morphine, and
taken for an ultrasound plus a CT Scan. Again, they thought it was my appendix
but results came back negative. After reviewing my ultrasounds I was told I had
some very large cysts on my ovaries.
The result of my pain? According to them my
ovary had flipped. The pain I was feeling on my side was all making sense to
me. I knew something was there! I still didn’t know what was causing everything
else. I found a Gyn to go to, since I had insurance now I didn’t need to go
back to the Indian Hospital. My visit didn’t go well. My new Gyn told me I was
fine. He couldn’t feel the cysts and sent me on my way. I was frustrated. How
can one doctor tell me they see cysts and he not ‘feel’ any? I went back to
work and vented to my Manager about what had happened. That was when he
suggested I go to Mayo Clinic. I called right away.
It is now October of 2006.
The day of my appointment I was pretty nervous because I had no idea what was
going to be done. I was tired of ultrasounds and exams and just wanted some
answers. We went through the normal questions about how I was feeling. I did
mention to her that I was having very painful periods and pain during sex. Now
that I think about it I don’t think any red flags went off for her that I had
endometriosis. After the questioning she pulled up the results of my
ultrasound. I had a 6.5 cm cyst on my right ovary and a 4.6 cm cyst on my left
ovary. That was when she brought up surgery. I freaked, I was not prepared for
that.
I’ve never had surgery, I’ve never had a broken bone, and I had never
been hospitalized for anything serious except for the 4 days at the beginning
of the year. As I was sitting there she
then proceeded to tell me that the surgeon was actually next door meeting with
his patients and she wanted him to take a look at my ultrasounds. I gave her my
consent and she left. When she returned it was agreed by both her and the
surgeon that I needed to get in as soon as possible. I said, “Let’s do it.” I
was scheduled for surgery the 3rd week of November.
A few days later
I got a phone call. Guess who it was? The Indian Hospital in Phoenix. Guess
what they found? Mind you it’s been about 6 months since I was hospitalized
there. Yup, cysts showed up on my ultrasound and I needed surgery. I remember
laughing at the doctor on the phone. He must have thought I was crazy. To
think, that if they had found that out earlier I could have avoided all the
pain I went through the previous month. I told the doctor, “Yea, I know. I’m
already scheduled for a surgery but thanks anyways.” Because of the largeness
of my cysts I was put on a waiting list with Mayo Clinic in case anyone had
canceled a surgery. Lucky me, I got a call saying they could get me in sooner.
Of course I accepted.
The day of my surgery I got called back to my room, changed,
and waited. The doctors who were going to be in my surgery came into my room
and introduced themselves. My surgery was to last only an hour. My husband was
told to leave, wait in the waiting room and he would see me in an hour. I don’t
remember much after that. When I woke up my husband was sitting next to me. I
was in and out for more than an hour. When I was finally able to stay awake, my
husband told me my hour surgery turned into a 5 hour surgery. It wasn’t just my
cysts they had found but something called Endometriosis.
Recovery from the surgery took me four months. After
recovering I was finally able to go into my Gyn at Mayo to discuss this disease
called Endometriosis. This was when I learned I was diagnosed, at 25, with
Stage IV Endometriosis. See, I knew I had Endometriosis but this was the first
time learning what stage I had. Ok. So now what? My Gyn then told me she wanted
to put me on the birth control. This would help with the cysts and
endometriosis. I was hesitant because I wanted to have kids and pointed that
out to her. That’s when she told me my chances of having any kids were about
5%. I was devastated so, I agreed to go on the birth control. I stayed on the
birth control for about 1 1/2 years. During that time I had become depressed
and started having anxiety attacks on a daily basis. I withdrew from my
husband, my frens, and my family. I was always sad and wanted to be left alone
and just didn’t care about anything.
I had this disease that was affecting my
quality of life and I didn’t know what to do or where to turn. That was when I
decided to go off the birth control. And there was some small hope that maybe;
just maybe I could get pregnant despite the endometriosis causing infertility.
So far, I wasn’t having any major symptoms of endometriosis. I was still having
long periods, and the pain wasn’t so bad. Every time I tried talking to my
doctor she would suggest that I go back on the birth control and I just did not
want to. She then suggested if I wanted to get pregnant then I should go see a
fertility specialist. She gave me a name and I went. I remember that after my
surgery I was told to go back in 2 months later so they could do a dye test on
my fallopian tubes to see if they were blocked. I put it off because of
everything else that was happening to my body after the surgery. This was one
of the first tests my Fertility doctor gave me. I was fearing for the worst and
preparing myself for bad news. It was the most painful test I have ever taken
to this day.
The result of the test showed that my fallopian tubes were clear
and open. Good news! I was told that they could probably do a successful IVF
but the cost of it all put a stop to it then and there. So I went on my way.
In
2011, my symptoms started coming back. Painful bed ridding cramps during my
period, pain during sex, and those random pains shooting across my pelvic area.
This time around I knew what the cause was. But with no cure or medication to
reverse the effects of endometriosis I just figured I was on my own. My Gyn
doctor was no help to me and the fertility doctor was not an endometriosis
specialist. I just figured I made it this far and I could handle it. At the
beginning of 2012 I started having pains in my right side again. I knew right
away what it was. Without a doubt my cysts were back and getting to that size
where I could feel them. Not again. I decided I needed to do something. I had to change everything. My outlook on
what was handed to me, I needed some positivity in my life, and I sought out
counseling to help deal with my infertility. I then found a doctor who
specialized in Endometriosis in AZ. I called and setup an appointment. I was
actually excited to be going to a doctor’s office because I felt like I could
get good help this time around.
Since seeing her I have learned so much more
about my Endometriosis and exactly what it is doing to me. She explained it to
me like no one has ever been able to. I’ve done my regular Google searches and
looked at pictures and read articles but no one ever sat me down and told me
the severity of my Endometriosis. I learned, 5 years later, that my
Endometriosis was so severe that when they did my surgery I should have had a
hysterectomy. What?! But because of my age they chose not to. No one ever told
me this! I even learned that they
diagnosed me with Pelvic Inflammatory Disease. No one ever told me this! I
would think my own doctor, who I followed up with after my surgery would have
shared this information with me. She then gave me a copy of the notes from my
surgery, which I had never seen before. This was my first time seeing
everything that went on. Every time I requested my records I had only received
my labs and images and blood test results. I read that they removed fibroids
from my uterus. And I was never told. I also read that I was supposed to go in
three months after for a second look lap. I was never told this either. I was
angry that I was never told or given this information and I was angry at myself
for not asking. In that past year I have learned so much about what I need to
ask and how I need to ask for things. It has been trial and error at the
expense of my well being. I have accomplished so much in one year than I had in
the previous 5 years just living with my Endo thinking I couldn’t do anything
to help myself.
Today, I feel like I am finally on the right track; that I
am doing something right for myself. It’s made a huge difference on the days
when I just want to throw in the towel and waste away. Fighting the depression
has been a big struggle BUT knowing that I’m in control of how I handle it has
been a great tool for me. So far I still depend on my pain meds to get me
through my first couple days of my period. I take Xanax for my anxiety attacks
when things get the best of me. I do feel exhausted all the time but I don’t
get much sleep. I’m working on that. I deal with being anemic due to my
long/heavy periods. In light of all that, I am now a foster mom. I figured if I
can’t have my own kids at least I can be a mom to those who need one. It’s so
hard to see women have kids and not take care of them when I want one so bad
and can’t have any. That’s another topic for another day. But I really wanted
to take a negative and turn it into a positive so becoming a foster parent was
part of that. As for my plans for the year, I have been directed by my current
Gyn to seek out surgery and have been looking for a surgeon.
I’m hoping to get
my second surgery before summer time is here. I am doing my best to have a positive
outlook on everything that has happened to me. It has not been easy, but some
days it’s possible. I believe that whatever the doctors have said is
impossible, God can make possible. I am not giving up faith on having kids or
being endometriosis free. That is my hope and I am not letting go. Hold on
tight ladies! Hope can give us strength. We can all get through this together.
Thank you for sharing your story, Dominica. You are very strong, and I hope that you are able to have the children you truly deserve. It takes a very brave, kind, and loving person to become a foster parent and I wish you the best!
If you have a story you would like to share, please leave a comment below!
xo Heather
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