March is Endometriosis Awareness Month!

Endometriosis is a very nasty disease that impacts around 8.5 million North American women and 176 million women worldwide. It has a lot of awful symptoms, like infertility, pain with intercourse, painful urination and bowel movements, and extreme abdominal pain. It's hard to live with. It takes 8 to 11 years on average to diagnose. It's hard to treat. It can bring on depression and anxiety in the same way any chronic disease can. To be perfectly honest, endometriosis sucks.

When I first realized there was a problem and started having some major health concerns, I lost pretty much every friend I had. Whether it was because hey couldn't relate, or they didn't understand, it doesn't matter. What does matter is that when I was in the most need of support from them, they bailed. The sad part is, this seems to be pretty common.

You can't be as social as you used to be. It's no fun seeing someone you care about in pain. It's not like other diseases, with set treatments and cures, so it can often seem to someone on the outside that you aren't doing anything about this disease that they can't even see. The same can be said of the many doctors who still believe that women are just meant to feel pain, doctors that won't listen to us about our symptoms or our pain, that brush us off as drug addicts when we say we need help managing this pain that makes it difficult to live our lives.This isn't an excuse for their behavior at all. I say this to highlight just how difficult it can be to live with this disease. I say this to highlight how alone you can feel.

Thankfully, the Internet allows for plenty of resources to turn to. Online support groups, blogs about personal stories, informative articles, and research all exist out there in the ether of the Internet. They are there if you look for them, so even if the people in your physical life aren't there for you, I bet you can find the beginnings of a support structure online.

It's scary to go out looking for yourself when you feel out of touch, though. Maybe you don't know what this disease you're living with really is. Maybe you don't understand how medication impacts it. Maybe you don't get why you feel searing pain in your low abdomen when you walk by a heavily scented store. If you want to get more educated about endometriosis, the resources out there for it, different treatment options, and a whole gold mine of other knowledge, I'd say turn to these three books. They've helped me a lot, and when I can't seem to communicate with my family about what's going on, I can just hand them my copy and tell them what chapter I want them to read.


The first two come from the Endometriosis Association and Mary Lou Ballweg:

'The Endometriosis Sourcebook' and 'Endometriosis: The Complete Reference for Taking Charge of Your Health' are both books available for sale on Amazon.com. I have also seen the latter in stores such as Barnes and Noble, and they are affordable. Brand new, 'The Complete Reference...' is $18.95. They contain a collection of articles from various sources that discuss what endometriosis is, and the role of several variables on the disease, from hormones to nutrition to surgery. There are also resources and discussions of how depression can impact it, different medications and treatments, and even articles meant for spouses, family, and friends about how to be supportive. One of my favorite parts is a cartoon series called 'Joe with Endo', a comic that can help men understand the challenges of endo by having a male character, Joe, going through the challenges. Switching the roles can be a powerful tool in helping people put themselves into the shoes of others, and this cartoon does that very well.

The next book that I have found very helpful is 'The Endometriosis Natural Treatment Program: A Complete Self-Help Plan for Improving Health and Well-Being' by Valeria Ann Worwood and published in 2007. It goes in depth with helping women find ways to properly track their symptoms, and ideas on how to organize the information. There are lists of resources in the book, and also plenty of information about nutrition, supplements, exercise, and alternative methods of health care that include massage, chiropractic, acupuncture, etc.

There are SEVERAL books on endometriosis, so this is by no means a comprehensive list. These are just the ones that I have used the most personally. There are others I would like to check out, but just haven't had a chance to yet.

If this is something you or a loved one is dealing with, do your research in alignment with working with your health care provider. Be open and honest with your symptoms and discussion of what you have found in your research and what you would like to talk about. Discuss methods of health care you're interested in, and be your own advocate. Look for support structures and support groups, either in person or online. Below is a list of different websites that can help:

The Endometriosis Association

Endo the Pain

Endometriosis: The Global Forum

There are also several groups on Facebook, so don't stop with just these three options above!

I believe we can find a cure within our lifetimes so that our daughters don't have to live with this horrible disease. Let's find a cure for all our EndoSisters!