A Closer Look at Endometriosis

I had heard of endometriosis previously. I knew that it caused pain for women as well as being a culprit of high risk pregnancies, but to be honest I have been pretty uninformed about the condition until recently. I did not know the details, the potential infertility risks and the great amount of discomfort and lifestyle change that can come from living with endometriosis.

Digging deeper into the topic, I found out that endometriosis is a disorder of the female reproductive system. When endometriosis occurs, the endometrium, or the tissue that lines the uterus, is found and grows outside of the uterus. Most frequently the growth occurs on the fallopian tubes, the ovaries, and the other tissue lining the pelvis. Endometriosis can cause scar tissue and lesions, and in most severe cases it can cause a condition called “frozen pelvis” where organs are fused together. The pain is usually associated with the menstrual cycle, but not always. Approximately one third to one half of women with the condition have difficulty getting pregnant, but many with mild to moderate cases can conceive, although it may take longer and more concentrated efforts.

In an effort to learn more about this condition and how it affects women, I conducted an interview with a member of WEGO Health who is currently battling endometriosis and the effects it has on her life. AnyaJB was very kind to answer my questions and share with me about her experience.

Tell us a little bit about yourself and why you are interested in the topic of endometriosis?

I am a female in my mid 20's, and I was recently diagnosed with endometriosis about 18 months ago after having a lot of complications with my menstrual cycle.

Do you have a blog or particular sites/communities that you contribute to?

http://www.inciid.org/forum/
http://parenting.ivillage.com/pregnancy/pcomplications/topics/0,,4r...

Are there any blogs/sites that you especially like or would recommend that specifically address endometriosis?

http://www.endometriosis.org/

What do you think is the most important aspect of endometriosis that people need to know or understand?

I think people need to realize that a hysterectomy isn't the end all be all last resort. I'm in between stage 3 and 4, so mine is on the more severe end, and my doctor has been pushing me to remove everything for the past 7 months. As a young female this is very discouraging because not only would I have zero chances to conceive, I would also be on hormones for the rest of my life. I think women need to take matters in their own hands knowledge wise, and look into the several possible treatments available, both traditional and non traditional before giving up and having a surgeon take everything out. Some may argue otherwise but I firmly believe a hysterectomy should be done under extreme last resort situations.

Can you explain some of the challenges you face and your experience in dealing with the knowledge that pregnancies in your future will be considered high risk?

There's a lot that goes through my mind, originally I was never one of those people that wanted a child. I have nothing against conceiving but my attitude was more like if I can settle down with someone and its good for us, so be it, but its not like a life goal. After being diagnosed I have been thinking about it more often and it saddens me. I have realized I don't think I could go through the traumatic events of constant miscarriages or still births, so I have been semi seriously researching things I never thought I would be like surrogacy, adopting, freezing my eggs etc. Its all very overwhelming at this stage in my life.

Do you think there is a “stigma”, so to speak, or a misconception that young people can easily get pregnant and do not have to consider HRP (high risk pregnancy)?

That's an interesting question, I don't think there is a stigma per se in the health field, I mostly think that outside people are more surprised when someone my age who is otherwise healthy is diagnosed with a condition that makes them HRP.

Any additional thoughts or message you would like to share about endometriosis?

I think I pretty much covered everything I wanted to. Mainly just educate yourself before making big decisions. Its a terrible condition to have but its best to have a positive and knowledgeable demeanor towards it.

My hope is that this post will raise the level of awareness about endometriosis in our community. I hope that with the continued efforts of health activists like Anya, more compassion will result and in turn more research and solutions will come about for those suffering.

You can help this effort by sharing this post with your community, adding your story here, and also by sharing resources.

For more information about endometriosis: MayoClinic.com "Endometriosis"