Visit Mendo-Men and Endometriosis
This page was last updated on Sunday, October 03, 2004.
Sign this petition for Endo Awareness
There is no known absolute cure for Endometriosis-only
treatment options that may help to ease the pain and symptoms for
variable periods of time. I have been dealing with chronic pelvic
pain for over 6 years and was told repeatedly by my old family
physician that the pain was all in my head. I now know that if I
would have shared these symptoms with a specialist, he or she
may have been able to give me peace of mind, however, it takes
many women with such pain years of frustration (some times
decades) to get a proper diagnosis.
Once Endometriosis is diagnosed, confusion and
uncertainty can follow regarding treatment or even non-treatment
options. Many treatment options can have severe side effects both
common and rare. Most doctors can give out informational
pamphlets on these treatment
options, however, if you're any thing like myself, you want to
research these things on your own as well. I now take many
medical decisions into my own hands (with the help of the internet
and my Dr's resources).
I've read many different related stories by several people
regarding the treatment of endometriosis. Some of which are
horror stories about the effects of the treatment itself or the effects
of hormone treatment on unborn fetuses, but almost all of the
personal stories that I have read are truly inspiring or moving in
As with any thing, each side effects of treatment should
be weighed against the pain. Essentially, is it worth the relief and
what relief can or will the treatment provide? I am currently
receiving Lupron Depot
injections. My Dr. has recommended that I undergo 6 months of
this treatment after I decided to give it a try. So far so good. My
pain has lessoned a great deal since I began the injections.
Although, I experience severe hot flashes, mood swings, and
chance a thinning of my bone structure, I feel that in my personal
case the risk is worth it.
My relief will be for an indeterminable amount of time
(even if for only the 6 months of treatment). Before treatment, I
was in pain for 2-3 wks out of any given month. I've decided
enough is enough.
I am no stranger to what chronic pain can do to a
person’s life. My mother has Fibromyalgia. My mother
and I share the commonality of being told that our pain is made
up. My mom went to our old family physician for leg pain and
came out with strong antidepressants! This type of behavior by
physicians everywhere needs to end.
At one point, I was even told by my old physician that he
didn’t understand why I kept coming in with all of this pelvic pain
and bacterial infections, because after all, all women experience
these things and don’t complain about it!
Worse yet, when my mother and I share these personal
accounts with other people, we are treated as if we are crazy. As if
there is not a doctor alive that would say or do such things.
In the spring of 2003, I woke up and could not see out of
my left eye. I went to a doctor and went through several eye
exams, peripheral vision tests, color tests, etc. My eye doctor
couldn’t figure out what the problem was. He could tell that
obviously my vision had deteriorated and that my peripheral vision
was abnormal, but nothing else for sure. He then, thankfully,
referred me to a neurologist.
The neurologist did an MRI of my eye and determined
that for no reason my optic nerve was swelled in my left eye. I had
optic neurosis (Apparently, I am not the only one. I found a question
posted by some one with the same problem). The good news
was that my vision would return to ‘almost normal.’ The bad news
was that this condition is often a forerunner of neurological
conditions such as MS. He explained that I have a 25 percent
chance of developing Muscular Sclerosis in the future.
Thinking back, I still some times feel like a victim of my
own body. I am legally blind w/o my glasses, have endometriosis,
have been diagnosed with multiple mental disorders such as:
chronic depression; mood swings; anxiety disorder; oppositional
defiance disorder; bipolar (determined as an incorrect diagnosis by
a psychologist); Psychosis NOS (recently been determined as
situational or environmental). I know that taking the ‘victim
stance’ does not solve any thing. As a matter of fact, it only makes
Sorry that I haven’t updated this page for a while. I have now finished my Lupron treatment. The treatment was moderately successful. It reduced my pain for six months, but did not get rid of all of my symptoms. Intercourse has still been extremely painful, but I would sooner give birth than get my period again. So, the doc put me on the Ortho Evra patch. I use the patch for four weeks out of the month instead of three and I’m only on my third week so far. I have been getting sharp pains in my abdomen though and can’t help but wonder what that’s all about. Now I will just have to wait until I am older to determine whether or not I have significant bone loss from the Lupron. I spoke with another woman recently that said that she’s gone through all the same treatments, but she’s now taking a new low hormone birth control pill and has never felt better in her life and does have bone loss from the Lupron.
I would like to say that I am very confused about my boyfriend’s standpoint on the whole issue. He wants to be supportive, but he just can’t bring himself to understand the problem or the pain. Most men that I have talked to about this are very reluctant to discuss this. They were taught that this is a woman’s problem. That is not all true. I have read reports of endometriosis being found in men as well, which will probably remain another medical mystery for some time. Besides, this can affect people in the women’s lives that have endometriosis in many ways (even their friends). Wake up! That’s like saying that I don’t care about prostate cancer because I’m not male. Make sense?
I do not advocate any one single treatment option or say
that any combo is better than the other. Each person's individual
situation has a great deal of bearing on which treatment option
they may consider. My only advice is to make sure you know what
you are getting yourself in to, what the potential benefits may be,
success rates, and side effects of any given treatment plan could be
before making a decision. I am not a doctor nor do I have any
medical background in education. I have compiled a list of related
sites that may help with personal research. Many of these sites also
have support groups, because it always makes a difference to
know that you are not alone. Every story is unique and personal
some of which are very educational and inspiring. There are many
more sites available out there. Good luck and stay hopeful.
I have received some very kind emails from readers like yourself. Some of these letters have deeply moved me, some of them have even made me shed tears for the others out there just like myself. Tears of compassion, relief of frustration. Tears of joy. I do want to thank you all for your support and kind words. I also want to thank you for all of your shared wisdom, hope, and faith. From the very bottom of my heart and soul, thank you.If you would like to sign my guest book, feel free to visit the index of this site by clicking on the “Home” button below.