I have added a section to my site on endometriosis due to my
experience with this disease. I had chronic pelvic pain for
approximately 10 years before it got to the point where it was
affecting my every day life so much that I went to see a
gynecologist who immediately scheduled me for a laparoscopy the
following week. I underwent surgery in April of 1998 at which time
they removed the endometrial implants that they could find as well as a
cyst on my left ovary which was also a result of the endometriosis. I have since had
two additional surgeries which are explained below.
What is Endometriosis?
Endometriosis is a puzzling disease affecting women in their reproductive years.
The name comes from the word "endometrium", which is the tissue that lines the
inside of the uterus and builds up and sheds each month in the menstrual cycle.
If you have endometriosis, tissue like the endometrium is found outside the uterus, in
other areas of the body such as on the reproductive organs, bladder, or bowel. In these locations outside
the uterus, the endometrial tissue develops into what are called "nodules", "tumors", "lesions", "implants",
or "growths". Endometrial implants vary in color and shape. They may be as small as pinpoints or as large
as a grapefruit.
Although this condition is rarely life threatening, it can cause extreme abdominal pain, infertility, and
other problems. While some women with endometriosis may have severe pelvic pain, others who have
the condition have no symptoms. Nothing about endometriosis is simple, and there are no absolute cures.
The disease can affect a woman's whole existence--her ability to work, her ability to reproduce, and her
relationships with her mate, her child, and everyone around her. Unfortunately, this disease cannot be definitely
diagnosed without actually having a laparoscopy or other surgery to "see" if you have any endometrial lesions.
Possible Causes of Endometriosis
- Cramps and menstrual pain
- Pelvic pain
- Pain during sexual intercourse
- Trouble getting pregnant (infertility)
- Painful urination or bowel movements during menstrual periods
- Tenderness in the abdominal area and lower back
Stages of Endometriosis
- Menstrual blood carrying endometrial cells can back up through the fallopian tubes, spilling into the pelvic cavity.
- Endometrial cells might be present in the pelvic cavity from birth.
- The body's immune system may be involved. Implants may take hold because the immune system is not active enough to prevent them.
- Endometrial cells might travel through blood vessels to the pelvic cavity.
- Minimal (I): Shallow implants on ovary
- Mild (II): Shallow implants on pelvic lining and ovary. Light adhesions.
- Moderate (III): Deep implants on pelvic lining and ovary. Dense adhesions.
- Severe (IV): Deep implants on ovaries and pelvic lining. Dense adhesions on ovaries, tubes, and bowel.
What is a Laparoscopy
- Hormone therapy
- Surgery (laparoscopy, laparotomy, partial or full hysterectomy)
- Combination of both
Many times, this procedure is the best way to find and treat endometriosis. It also allows the doctor to determine the stage
of your endometriosis by observing certain factors such as the number, size, and site of the implants. This common procedure
is done in a hospital or at an outpatient center. A laparoscope (a thin, lighted tube) is inserted into your abdomen
through a tiny incision. A camera attached to the laparoscope sends an image to a video screen. By watching the screen,
your doctor can detect the site and severity (stage) of any implants. To learn more about what this procedure involves,
visit: Net Doctor.
~~Personal Update 2005~~
As is the case with a lot of women, my endometriosis gradually came back
and got to a point where I had to do something again. I scheduled an appointment
in January 2005 and was then referred to a gynecologist who performed a pelvic
ultrasound. As I said before, endometriosis cannot be diagnosed without surgery,
but there are tests which sometimes show signs indicating that the disease is present.
My doctor determined that I had a large cyst on my left ovary again, my
uterus was pushed (or pulled) to one side. These things along with a few other signs were
an indication that I had endometriosis at a stage that needed to be dealt with.
In making my decision to have another surgery and to what extent I would go, I did a lot more research on
endometriosis, laparoscopy to remove implants versus a hysterectomy, hormone therapy, etc. I wanted to choose the right
option for myself by factoring in my lifestyle, personal feelings, and age. I decided that I did not want to have a
complete hysterectomy at my age as that would result in going through premature menopause and could create different
problems. I opted to have another laparoscopy to remove all implants and to also have the left ovary removed as the
majority of my pain radiated from that organ. I also chose not to have any hormone therapy along with the surgery although
my doctor recommended it. Again, that was my personal choice due to my past experience with hormone therapy and some of the
negative side effects I have read about women experiencing due to some of these synthetic drugs. My doctor was very understanding and
wanted me to do what was within the realm of my own personal comfort zone. It is important to be informed when making these
decisions, to research your options, to listen to your doctors recommendations, but to also do what you feel is right as well.
I had a second laparoscopy performed on March 3, 2005 to remove my left ovary and to "clean" things up
again. There was a larger amount of endo discovered this time as well as some adhesions that had attached my ovary to
the side of the uterine wall. Adhesions were also the reason my uterus was "pulled" to the side as the pelvic ultrasound had shown.
Due to the additional items mentioned above, my older age, and an unfortunate allergic reaction to my initial pain medication,
my recovery took longer this time. I had some very painful and frustrating days following the surgery and had
to keep reminding myself that in the long run it would be for the best. I told myself that if nothing else, the ovary
that had caused me so much pain and discomfort would no longer be there. The frustration continued through to my second
follow up doctor appointment in June at which time my doctor reassured me that some people take a bit longer to heal
than others. I know that lot of my frustration stemmed from the fact that I simply wanted to feel back to normal again, but
having my doctor tell me that there was nothing medically wrong, helped to stem my fears and in turn some
of my frustration as well. By the following month, I was feeling much stronger and although I still had some tenderness
in several areas, I felt more myself.
~~Personal Update 2008~~
Three years after my last surgery I had another laparoscopy in addition to a hysterectomy (removal of uterus and cervix).
My symptoms came back much quicker after my 2005 surgery, I believe due to the extreme stress going on in my life throughout 2006
as I began having a lot of discomfort by the end of that year. The pain was different this time and centered largely right
in the front pelvic area around my bladder. The discomfort just gradually got worse until I again reached a point where I was tired of relying
on pain meds to get through my day and most evenings meds didn't even help. My husband and I met with the same doctor who
performed my 2005 surgery for about 2 hours in March to discuss my various options. One was to simply do another laparoscopy
to clean up the endo, two was to have a laparoscopy and hysterectomy performed, and three to do both along with the removal of
my right ovary. After meeting with my doctor and readdressing a couple of findings from my 2005 surgery, first that I had varicose vein(s)
connected to my uterus which was more than likely causing pressure and second that the adenomyosis (like endo, but within the uterine muscle)
had gotten worse, I decided that I would definitely go ahead with the laparoscopy and hysterectomy. After meeting with a genetic counselor
and my mom being tested for the mutated BRCA (breast cancer) gene to determine my risk for cancer due to a family history of breast, uterine and
ovarian cancer, I decided against having my right ovary removed as I wanted to maintain the natural hormones produced by it for as long
as I can. As you can imagine, I spent a lot of time researching, second guessing and worrying up until the time of the surgery.
But I knew that I had no choice but to do something because it was affecting the quality of my every day life. There is a lot of
information available on the internet, but you have to remember that you need to balance what you are learning with what your doctor
tells you and recommends. There are many extreme opinions on every topic and you need to find a good middle ground.
My surgery was performed on Thursday morning, May 1st and lasted for three hours. My doctor found more adhesions (some of which had attached my
bowels and my right ovary to my pelvic wall) and endo implants than anticipated which took an hour to deal with prior to
performing the hysterectomy. The surgery went well, but because I overdid the walking a bit the first night among other unrelated reasons,
I was not allowed to go home until Saturday afternoon. I did pretty good the first couple of days after I got home, but as in
2005, my system did not take well to the surgery or all of the chemicals being pumped into it and I had several set backs. I was off of
work for six weeks this time to recover and I continued to heal slower than your average person which was very frustrating for me.
I did not go back to work until June 16th for 1/2 days and then full time the following week. My restrictions were not completely
lifted until July (one month after my post op appointment). It is now September and I continue to struggle although I am much better
than I was the first 2 or 3 months after surgery. I just have to take a day at a time and be as patient as I can be with my body. I am trying a
couple of natural treatments in an attempt to help with some of my ongoing discomfort as well as to minimize my chances of getting the
endo back. One being a natural, bioidenticial progesterone cream to help balance out the dominant estrogen (which feeds the endo) in my system.
The other is called Evening Primrose Oil and can also help with hormonal balance and act as a natural antiflammatory.
There are millions of women and teenagers out there that have
this disease and deal with it every day. I have included links
to sites with a story to be heard. You can find many
more by simply doing a search on the subject. Take the time to
look at some of the guest books...many of them say more than
the sites do.
I was amazed at how many women are suffering from this disease
and that they feel and think the same way I do. Although I do
not wish this on anyone, as I continue to battle this disease,
it is comforting to know that I am not alone, insane or both.
Although I have not yet written a poem specifically dealing with endo,
I have written one that was a "result" of it. Following
my surgery in 1998, I began having problems again and was
prescribed birth control pills in an attempt to control the endo.
Unfortunately, it did not help and actually made me feel worse both
physically and mentally. During that period when I was feeling very
frustrated, I wrote a poem called
Silent Scream. The reason I decided to share this with you
is due to an entry in my guestbook from a person who thought
the poem was written about endo. I was surprised by this at first
and immediately went to read the poem again from a different
perspective. I could see how she would have come to this conclusion
especially after also reading that I had endo. Anyway, I thought it
might be fitting to include a link to it here. After reading
simply hit your back button to come back to this
If you have experienced a lot of pelvic pain and have not been
diagnosed, please look at some of the links listed below...it may be
Information and Tips
Center for Endometriosis Care
Hormone Balance and Natural HRT
Dr. Cooks Endometriosis Info Center
Woman's Surgery Group
Reproductive Specialty Center
Natural Treatment of Endometriosis
Endometriosis Awareness & Information
Listen to their Stories
The Letter From Survivors
A Woman's Battle With Pain
The Endometriosis Quilt
MENDO by John Blondin
Chinarose's Endo Awareness Site
More to come!
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