Endometriosis-Treatment Options

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

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I wanted to share some of the treatment options I tried during my six year
fight with endometriosis. While these are my own personal experiences, they
may also be some that you share, or at least let you know how different treatments
worked for someone else.

Treatment options for endometriosis can depend on your age, and if you wish to
have more children. Available treatment options today, for most women, are only
a temporary "reprieve" of symptoms, not a cure. If you wish to have more
children, these treatment options can buy you valuable time, temporarily
relieving painful symptoms and slow down the progression of the disease so that
you will perhaps be able to conceive.

Researching endometriosis, reading other women's stories, I have yet to hear
personally from anyone that these treatments have "cured". But, as I said, they
can buy you some time, perhaps get you through to menopause when the hormone
production lessens enough that endometriosis cannot live and flourish.

Decisions are often difficult, each woman must weigh her own history, taking
into account her age, lifestyle, future desire for children, etc.

Following are the treatments that I tried to eradicate endometriosis. While
there are many more, these are the only ones I have personal experience with.
Some women report success with chiropractic, herbal remedies, massage, acupuncture,
Traditional Chinese Medicine, etc., I felt I could never get a handle on the pain
enough to try any of these alternatives.

Treatments Undergone:

Synthetic Birth Control Pill Therapy
Depo Lupron Shots
Synarel Nasal Spray
Operative Laparoscopy

*Birth Control Pills-I was put on birth control pills, the strongest there were,
when I was thirteen, the doctor I saw at that time said I had "irregular" periods
that were the cause of all my pain. (I suspect I had endometriosis, even then.
I took Ortho Novum 1/50's for the next five years until I decided after getting
married at 18, that I wanted a child, I went off of them and did conceive at age
19. The "pill" did help, my cramps and pain, while not gone completely, were
more tolerable and my periods were lighter and more regular.

I went back on the pill, after my daughter was born, at age 20, then continued
to take them for the next seven years. Then going off of them again, desiring
another child. It took two years for the pain to steadily progress to severe
again, and I found myself at age 30 going from doctor to doctor searching for
what was wrong. After being diagnosed with endo, I tried birth control therapy
to relieve the symptoms. This time it didn't work, and after three months on them
I realized they were turning me into a crazy woman ! I am generally a pretty
calm, rational person. I found myself each month being very irritable, arguing
with people, even at work. I got into a shouting/cussing match with someone at
work that I did not get along with...this is something I never did! I realized
when thinking back that this had been happening about the same time each month
and since I had been taking the pill again. That was my last time with the pill.

I worry about what kind of effect long term ingestion of synthetic hormones might
have had on my body. If you've ever read the insert that comes with a package
or birth control pills, the possible side effects are very frightening.
Some doctors have theorized that birth control/and or synthetic hormones may
cause or trigger endometriosis.

*GnRH agonists-Depo Lupron injections and Synarel nasal spray.

My experience with Depo Lupron-This was the only treatment for endometriosis
that I tried that gave me significant relief. The doctor recommended this after
pain returning within two months of my first laparoscopy. I had insurance at
this time with 80/20 coverage. Lupron shots are very expensive, that was six
years ago, and the shots were about $350.00 each then ! So my portion was $70.00
for each one. After the first month on Lupron, I felt great. These GnRH drugs
put you into what is known as medically induced menopause. My only side effect
from it was mild hot flashes. After the first month, no more period (whopee!!)
no pain, nothing ! I felt great ! It was the first time I had been pain free
since my pregnancy, and as of this writing, alas, the last time :o( At that
time, the doctor told me I could only be on it for six months because they
didn't know enough about side effects from usage after six months.

Some women cannot tolerate Lupron, and some reported feeling: depression,
irritability, hot flashes, itching, short term memory loss to name a few.
There is also the possibility of loss in bone mineral density with long term
use which may not be reversible. I found out this year that I have a 9% bone
loss in the pelvic region and 17% loss in the lower lumbar region and I have
suffered from short term memory loss for some time, both may have been due to
my time on Depo Lupron, and exacerbated by hysterectomy.

Synarel Nasal Spray-I tried this treatment for three months, I didn't like it
and it didn't help half as much as the Lupron had. First, I hate nasal sprays
so it probably wasn't a good choice for me to begin with. It was to be used
two times a day around the same time each day to keep the levels constant. Which
meant I had to carry it with me, in case I went somewhere after work. Sometimes
I would leave for work in the morning then not be able to remember if I had
used the darn stuff or not. Usually I could tell by the bitter post nasal drip
down the back of my throat after use (yuck!). A few times, I had to drive back
home and get it, like birth control, if you missed a few doses, you would start
a period (double yuck!). I didn't notice any side effects from Synarel, but I
also only used it for three months, since it wasn't giving me much relief, use
was discontinued after that.

Synarel generally has the same long term risks as Depo Lupron Injections, it
is more affordable. Side effects also seem to be similar.

Operative Laparoscopy-I had two laparoscopies, diagnostic laparoscopy is still
the only sure way to diagnose endometriosis. Perhaps in the future we can find
a less invasive diagnostic tool.

While my experience with laparoscopy was generally good, it truly did not provide
any long term pain relief or solution. I have read some women's stories that
have had many laparoscopies. Two was enough for me, one of the reasons I finally
decided on a Total Abdominal Hysterectomy with removal of both ovaries, tubes
and cervix, I did not want to keep having repeat surgeries. The effects of
anesthesia alone can stay with you for six months to a year. Surgery often
can produce more adhesions, and many women already have adhesions.

The procedure and recovery time for laparoscopy was not bad at all. They
usually do the surgery on a Friday so you have the weekend to recover. I needed
one more day both times. Afterward, my abdomen was a little sore and bloated
and I couldn't stand anything tight around my stomach. The worst thing from the
surgery for me, and this happens to some women was the gas they use to inflate
your abdomen so the surgeon has more room to move around, sometimes settles in
the chest area and causes pain. The day after my lap, I felt like I had been
hit in the chest with a baseball bat, that did go away in a day or two.
Operative laparoscopy, while they did laser and cut away endometrial growths
in the pelvic region and cul de sac and took down adhesions and ovarian cysts,
did not offer me much if any relief.

For Pain Relief:

All Non-Steriodal Anti-Inflammatories known to womankind !

Ibuprofen
Meclomen
Ponstel
Dolobid
Anaprox
Toradol
Orudius
Magsal
Darvocet
Percocet
Voltaren

The only one of these pain relievers that worked for me and that I took with
any kind of regularity was store bought Ibuprofen. I began with the recommended
package dose of 2-200mg. By the fourth or fifth year, I was gobbling up
6-200mg. Ibuprofen at a time. I generally went through a bottle of 100 tablets
a month. I'm not sure if my system became tolerant of them or the pain from
the endo and adhesions became worse. Probably both. I was always worried
during the six years of taking that much ibuprofen, what effect it would
have on my body, my liver seems so far to be fine. While it never took
the pain completely away, it took the edge off most of the time so I could function.

Most of the others, I only tried once. I remember one GYN giving me a prescription
of Toradol, it gave me less pain relief than Ibuprofen. When I went back to the
doctor, and told the nurse this, she remarked rather sarcastically, " I can't
imagine that didn't help you, why we give that to post-surgical patients!".
I often felt guilty asking for pain medication, but I was always searching for
something that would take the pain away on my worst days so I could go on to work
without being absolutely miserable. I never found it!>

I remember one especially bad time, I had moved from where I live now, for a
few years, and away from my family. I had to move back, and was in financial
trouble when I did move back. I had no health insurance, and didn't have a job
yet, and my endo was raging. I got on medicaid, went through the trials of
finding a doctor that would accept medicaid. I was not very assertive about
communicating to doctors what I needed at that time. This doctor came in, did a
one minute vaginal exam, and promptly said, "The only thing I can do for you is
more surgery, do you have any other questions?", I was in shock that he did
no more of an examination that that, I muttered something about needing something
for the pain, he left the room. I got dressed, went to the desk and told the
nurse I had asked the doctor for some pain medication, she handed me some samples
of toradol ! I put them in my purse, so upset, tears started to flow, I hurried
out to my car, embarrassed, I sat there for a few minutes then I got mad! I got
back out of my car, went back in, took the samples out of my purse and laid them
on the desk, told the nurse to give them to someone else that might be helped
by them, you see, I had already told them that I had taken Toradol previously
and that it did not take away the pain!

I had several other occasions where I told doctors what I had taken before,
what had worked and what didn't, only to have them hand me a prescription for
one of the ones I had told them didn't work !! (hello????)

One busy OB/GYN in the town where I live, as he was rushing out the door, I
asked him what he thought I could try for pain relief, he told me to ask the
nurse, she knew more about that than he did ! (helloooooo??)

As you can see, there are some treatments that will keep endo at bay, but none
of them to date are permanent solutions or cures. We can only hope and pray
that researchers continue to search for "cure".

Please visit and Support!!

Endometriosis Walk for Awareness

1999 Jeannah McElroy. Copyright

The much anticipated and long awaited:

MISINFORMED CONSENT

Misinformed Consent - 13 Women Share Their
Stories About Unnecessary Hysterectomy
by Lise Cloutier Steele
Foreword by Stanley T. West, M.D., FACOG
and Author of The Hysterectomy Hoax

Misinformed Consent is available in bookstores across Canada.

To order a copy online, go to:

www.misinformedconsent.com

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:

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Endometriosis Resources

The Endometriosis Association
Find an Endo Support Group in Your Area
Endometriosis Persisting After Castration
Endometriosis Research Center
Endometriosis Awareness Web Site
Endometriosis Treatment Program-Dr. David Redwine
Endometriosis.org
MENDO-Men & Endometriosis
Clinical Trials-Endometriosis
The National Lupron Victims Network
Dr. West on Endometriosis
Our Chance To Speak Up!-Gynecological Health Care Survey
Conquering The Silent Invader
Endo & Dyspareunia
Endo Zone
Endo-Higher Risk for Thyroid Problems
Endometriosis Awareness & Information
New, Quick and Minimally-Invasive Diagnostic Tool for Endometriosis
Endometriosis Treatment Centers & Physicians
Incisional Endometriosis
The Endo Quilt at obgyn.net
Ovarian Cysts and Endometriosis
Hidden Pain-Endometriosis
Laparoscopy