Endometriosis~One Woman's Struggle

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WITHOUT THE AUTHOR'S PERMISSION

Pete Hueseman, R.Ph., P.D.-Compounding Specialist
My source for bioidentical hormones

March has been declared Endometriosis Awareness Month in many states!

Please visit the Endometriosis Association's
website and help support them anyway you can.

The Endometriosis Association

My story, as are most stories of endometriosis sufferers, a long one.

As far back as my memory will take me, my endometriosis story starts at
the age of thirteen, when I began having excruciating cramping every month
with my periods. I'm talking about the double you over make you sick at your
stomach pain, that extended across my entire lower abdomen, and down into
my thighs. I don't think I or my mother knew what to do at that time, neither
did any doctor, we often ended up at the emergency room, its a little foggy
today, but I know they gave me Darvon for the pain. I don't really remember anyone
saying why this was happening. After doing that a few times, I went to a gynecologist.
He determined that irregular periods were the cause for all my pain and put me
on the strongest birth control there was, Ortho-Novum 1/50's at the age of 13 !!
I guess that's all they knew to do "way back then."

I stayed on the Ortho Novum for six years. I married at eighteen and wanted a
child, therefore went off birth control. Within eight months, I became pregnant
with my wonderful daughter, Tiffany. My pregnancy went wonderful, no morning
sickness, I felt great until my eighth month, when I very suddenly developed
appendicitis and had to have my appendix out at 10pm one night after spending
the entire day vomiting and my family doctor at that time telling me I probably
had the Asian Flu! to go home and call him later if I wasn't feeling any better.
That was quite an experience!

Things weren't as bad, the six years I was on birth control, monthly pain was
diminished quite a lot. After the birth of my daughter, I resumed taking
birth control pills for another eight years, again, monthly pain was kept at a
low roar. In retrospect, I believe I had endometriosis since the tender
age of thirteen. I did have "bad" months again, with excruciatingly painful cramping
and pain, severe diarrhea and back pain, after going off the birth control,
until I became pregnant. I remember one day in particular, it was the first
day of my period which was always the worst, being in such pain, having such violent
diarrhea that I could do nothing afterward but lay on the bathroom floor in a cold
sweat, curled up in a ball until I had the strength to get up. I believe the birth
control basically kept the endo "at bay" all those years I was on them.
I also believe that I was estrogen dominant and I often wonder what 12 years
of taking strong synthetic hormones might have done to my body.

THE BIG TROUBLE STARTS.....!

At twenty-eight, I wanted another child, again, I went off the birth control
pills. I did not become pregnant and by age thirty I was back to having the
same excruciatingly painful cramps and pain that I'd had before, along with
severe pain in the middle of the month associated with ovulation, it was
always on the right side and it was a very sharp, stabbing pain, lasting
anywhere from two to fourteen days, bloating and constipation also began
mid-month and lasted up until the first day of my period, along with back
pain, pain with intercourse, and increased pain
and pressure when my bladder
was full. This started my long journey into trying to obtain accurate diagnosis
which took a total of five gynecologists and two years!

THE SLOW DESCENT INTO HELL....

The first OB/GYN I went to at age thirty, found nothing upon examination
but a "pelvic mass", he gave me no explanation of what might be the cause
of all this new found pain and symptoms but to return in one month for follow
up on the "mass". Diagnosis was Pelvic Mass and Chronic Pelvic Inflammatory
Disease. Returning in one month, the "mass" was still there, determined to be an
ovarian cyst which had decreased in size. I was prescribed Anaprox for the
continuing pain which did absolutely nothing to help. I made another appt. to
come back in three months for follow up on the "mass". The Anaprox did
nothing to touch the pain, and being uneducated at that time about reproductive
disorders and mechanisms, the doctor conveyed that this was something I just
had to live with. Another ultrasound three months later revealed the "mass"
was gone. I tried working with taking the Anaprox, it was then, after trying every
other thing OTC, that I met my friend-Ibuprofen, which did help more than
anything I'd tried. So, I tried "living with it" for a year, becoming increasingly
frustrated with this doctors lack of response and concern of the pain I was suffering, I changed doctors.

MY FIRST LAPAROSCOPY...

I could literally write a book on the next six years after that, I began in 1991
seeking diagnosis of what was wrong with me. I knew it was more than just Chronic
Pelvic Pain, I will for my readers sake try and condense it. My treatments,
diagnosis over the next six years are a site to behold: An Overview-

* 10/91-Visiting OB/GYN in quest for diagnosis, treatment and and relief
from pain. Under this doctors care from 10/91-7/92

1. Pelvic Ultrasound

2. Ortho-Novum-which I could no longer tolerate, turned me now
into a "crazy woman". Diagnosis-Chronic Pelvic Pain.

3. Pelvic Sonogram and Urinalysis, sent for various bladder tests, cystogram
to rule out a bladder problem. (The Urologist said he saw a bladder diverticulum??
this was never really addressed any further??).

4. I finally start going to the library reading all gynecological diagnostic books
I can find to try and determine with all my symptoms in mind, what I might find
that matched my symptoms, the match was endometriosis.

5. Upon my next visit with this doctor, I hesitantly ask, not wanting to sound
stupid, did she think based on my symptoms that I could have endometriosis.
She replied that my symptoms were not "classic" endometriosis symptoms, it
was then that a diagnostic laparoscopy was decided upon.

6. The operative findings-one blocked fallopian tube, ovarian cysts, adhesions and
minimal spots of questionable endometriosis. The diagnosis-Chronic Pelvic
Pain with Questionable minimal endometriosis. Ovarian cysts were aspirated,
adhesions from the ovary to the tube taken down and minimal questionable
spots of endo were "noted" (no mention of removal of these!?) Laparoscopy in
and of itself is a fairly simple procedure, the worst after effects of it were
bloating and sometimes you will get pain where the gas that is used to inflate
the abdomen to give the surgeon room to work around and a better view settles
in the chest area. This happened to me, the next day, my upper chest area was
very sore, I had the "lap" on a Friday and was back to work on Tuesday.

7. In the short span of a month after my first laparoscopy (hereafter known
as "lap"), the same familiar pain was right back. Not a wonder since as I read the
operative report today, no endo was removed. It was agreed post-op that if I had
any further pain, I would return to the doctor and that I did. We discussed
my options being a trial of Depo Lupon Shots, Synarel, or Birth Control pills.

8. The "option" of Depo Lupron did not work, it helped tremendously while I
was on it (six months), I actually felt so good, I had a bit of a panicky
feeling in the sixth month knowing I would be stopping it. As it turned
out, rightfully so, symptoms the same as before, returned within two months.

Those symptoms being: severe pain and cramping with periods, began 1 day before
my period and lasting 1-2 days after the first day. I still have vivid
memory of that severe pain that would cover my entire abdomen, lower back and
halfway down into my thighs, bloating beginning 1-2 weeks before my period
began, pain mid-month with ovulation, a very sharp pain that was always on
the right side, just out from my hip bone that would last anywhere from 2 days
up to 14 days. That pain was so severe it just the jarring of walking or sitting
was excruciating. Pain with intercourse, constipation from mid-cycle until 1st
or 2nd day of period, pain during the two weeks before my period when
my bladder was full or I needed to have a bowel movement.

9. This takes us through 1992, then I moved, began a new job and had no insurance.
I "lived with it" and tried to manage the pain best I could with Ibuprofen, at that
time I was taking 800 mg just to take the edge off.

10. 1994, having health insurance again, and being worn down by the continued
monthly pain and symptoms, I again go in search of another physician to help me.

11. Between 1994 and 1996, I saw three more physicians. The first did a one
minute vaginal exam, I was so tender and sore, he could barely get that done.
He promptly told me all he could do for me was more surgery, did I have any
other questions? It turned out he was right, but I was very put off by his
instant judgment after a one minute exam, not even knowing my history well,
or me as a patient. Didn't go back there! The second tried me on birth control
therapy, which I told him did not work well for me before. Then we tried the
GnRH drug-Synarel nasal spray. That didn't work either, I had to stop it after
three months. I didn't go back to that doctor either, I knew more about
endometriosis than he did. Then on to a third who recommended another laparoscopy.
I finally consented as there was not much else to try at that point, and the pain
and symptoms were only getting worse.

12. Laparoscopy #2 findings were extensive adhesions right lower quadrant near
the cecal area and abdominal wall, left ovarian cyst, possible endometrioma.
Left paratubal cyst. Scattered endometriosis, gun-powder like lesion on the left
uterosacral and left cul-de-sac and on the right uterosacral. Third degree
retroverted uterus. Recovery again was fairly quick, a few days. I even got
pictures and a video to keep :o) Relief, unfortunately, didn't last long at
all, within a few months, I was right back to the same pain level. The doctor's
cheery voice in the video said I should expect 100% complete pain relief...wrong!
I thought at the time that was a pretty large claim, but hoped anyway! This doctor then
talked about Depo Lupron again, but knowing that was a very expensive and very
temporary reprieve, I declined.

Frustrated, feeling very alone, not knowing what to do next, once again I went
back to Ibuprofen and just trying to cope. The doctor did offer me B-12 shots monthly,
I was very tired at that point. That was the day, while waiting for the nurse
to finish up with my chart, I saw out of the corner of my eye, a thick pamphlet
on Hysterectomy, I got one for reference, thinking I might need it sometime in
the future, really knowing in the back of my mind that it would be my final
treatment for endometriosis some day.

Which brings us to: My Hysterectomy Story
that I am in the process of writing...

Endometriosis Resources

Endometriosis Association

Find an Endo Support Group in Your Area

Endometriosis Tied To Other Disease

Signs of endometriosis should be taken seriously

Endo Magazine

OBGYN.net
The Endometriosis Zone

Dr. David Redwine-Endometriosis Treatment Program

ERC-Endometriosis Research Center

Endometriosis & Xenoestrogens

PCBs, Dioxin and Endometriosis

Alternatives to Hysterectomy: Endometriosis

Empty Arms-Endo in the UK

MENDO

Men and Endometriosis-support

Endometriosis Persisting After Castration

ENDOMETRIOSIS: A NEW PICTURE OF THE DISEASE IS EMERGING

A Woman's Guide to Endometriosis

Endometriosis Treatment Centers & Physicians

Ovarian Cysts and Endometriosis

Reproductive Medicine-Endometriosis-Dr. Stanley West

Women's Health Interactive

Women's Health

The much anticipated and long awaited:

MISINFORMED CONSENT

Misinformed Consent – Women’s Stories
about Unnecessary Hysterectomy by
Lise Cloutier Steele
Foreword by Stanley T. West, M.D., FACOG
and Author of The Hysterectomy Hoax

The U.S. Edition of Misinformed Consent is now
available through amazon.com

To order a copy online, click on the book below:

The U.S. edition of Misinformed Consent will be released in
early 2003 by Next Decade, Inc. of New Jersey.
For more information, go to:

www.nextdecade.com

My own hysterectomy story is proudly included in Misinformed Consent

How You Can Help

Hysterectomy Newsletter

**Request copies of my FYI newsletter by email, subjects listed on the Newsletter page.

NEWHysterectomy *Connections*

Compounding Pharmacy Listings-U.S.

Compounding Pharmacy Listings-CANADA-UK-OTHER

Monthly Interview Page

Monthly interview featuring a women's health related website and interview
with the site's owner or representative.

*December 2000-Pete Hueseman, R.Ph.,P.D. of Bellevue Pharmacy Solutions

*September 2000-Dr. Daniel Bivins and Hormonetesting.net

*July 2000-Dr. Joe Collins-Your Menopause Type.com

Research & Data Collection

Let your voice be heard!

Research & Data Responses

Hysterectomy, HRT & Endometriosis Resources

Recommended Reading

In Association with-© Amazon.com

Great books: Dr.John Lee, Dr. Elizabeth Vliet, Dr. Jonathan Wright, etc.

Hysterectomy - Pre Op & Post Op Advice

Natural Hormone Replacement

My Quest For Natural Hormone Replacement

HRT Resource

Hysterectomy-My Plea

Hysterectomy & Endometriosis Questionnaire

An opportunity to share your experience-let your voice be heard.

Hysterectomy Experiences

Hysterectomy Experiences 2

Hysterectomy Experiences 3

Hysterectomy Experiences 4

Hysterectomy Experiences 5

Hysterectomy Experiences 6

Hysterectomy Experiences 7

Hysterectomy Experiences 8

Positive Hysterectomy Experiences

My Endometriosis Story

Endometriosis Treatment Options

Endometriosis Experiences

Endometriosis Experiences 2

Endometriosis Experiences 3

Recovery Journal

Recovery Journal 2

Recovery Journal 3

Recovery Journal 4

Recovery Journal 5

ABOUT ME...

On This Day....

July 17th, 2002, marks the 5 year anniversary
of my Total Hysterectomy or TAH/BSO

Please visit my tribute: On This Day

You can also help support my work through shopping at "My Store" at amazon.com

Last Updated: 01/10/10
© 1999 Jeannah McElroy. Copyright

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