Survivors of Endometriosis
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Visit Mendo-Men and Endometriosis

This page is dedicated to the resources and support for any one learning about and/or dealing with Endometriosis in their lives.



I have personally been battling endometriosis for quite some time now. I was finally diagnosed in August of 2003. Many women that have been diagnosed with this, often know much personal frustration as it is hard to diagnose and even harder to cure.


This page was last updated on Sunday, October 03, 2004.


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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 some way.

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 things worse.

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.




Endometriosis Research Center

Endometriosis.Org

Endometriosis Association

Center for Endometriosis Care

Endometriosis and Infertility

Some Treatment Options for Endometriosis

One Woman's Story of Her Endo Treatments

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