Fellow endo sisters Laurie, Jenn, and Leigh have created a new in-person support group called the Ottawa Endometriosis Support Association!

From their website:

The OESA meets approximately once a month in a women only setting to offer support in a peer environment. We do not offer medical advice or act as a referral service for treatment. Our members meet to share their struggles and triumphs with a disease that often causes social isolation.

The members of the OESA acknowledge that our friends and family are also greatly impacted by their loved one’s struggles with endometriosis so from time to time we do host open events in a social setting where friends and family can feel comfortable to mingle and get to know other people who have had endometriosis touch their lives.

The OESA’s members are diverse in cultural and socioeconomic backgrounds, we strive to maintain a positive environment for our members and encourage them to stay informed and to advocate for themselves and their health care.

Please visit their site at http://www.ottawaendosupport.org/

Endometriosis sisters J and S posted a website on their social networking pages, which I want to share here.

The site is called  Fight Like A Girl, and was launched in April, 2010, according to the domain’s whois information, so it’s pretty new on the web. I like the site because it appeals to young women who are battling serious illnesses, including endometriosis. Some of the other illnesses covered on their site include cancer, diabetes, lupus, chronic fatigue syndrome, and fibromyalgia. There’s more, so check out the site today!

To quote directly from their website,

“The Fight Like A Girl Club was formed to provide a place where women battling cancer and other diseases, survivors, and loved ones can come together to share stories, experiences, hope, and encouragement with one another, a place where you can come to relax and devote time to yourself, a place where you feel accepted and cared about, a place to soothe your soul with meditations, poems, and inspirational quotes, to release your fears and anxieties through sharing and writing, to put your problems on the backburner while playing games and puzzles, to request Prayer from others who truly care, a place to CLAIM YOUR POWER!”

“Our mission is to provide a loving, safe, and nurturing environment where women battling cancer and other life-limiting diseases, survivors, and loved ones can come together to share stories, experiences, advice, encouragement, and hope with one another. Men are warmly welcomed, as well.”

“Our vision is that through sharing and connecting with one another, each of us will discover and claim the Power that is already within us.  Through cultivating and bringing together all of our ‘individual’ Power, we will create a ‘collective’ Power that will defeat cancer and disease once and for all.”

This morning I read a three-day old story on NPR, entitled “Patients Turn To Online Community For Help Healing“.

In that segment, three websites were plugged: Microsoft’s My Health Info, Google Health, and Patients Like Me.

I decided to check these sites out. I was thwarted immediately upon reaching Microsoft’s My Health Info page, because it wanted me to install Microsoft software called Silverlight (because they hate Adobe Flash for some reason). Nope, sorry, I won’t do it right now, thanks anyway.

Next, I checked out Google Health, and signed up. I shared the site with my female cousins who I suspect also have endometriosis. The site seemed alright at first…until I wanted to upload my medical files. Apparently I can’t just upload scanned documents – I have to go through some third party website, register there, and upload my medical documents there…or something. Another thing – while I can send email notifications to share my info with people, there doesn’t appear to be a forum or community to discuss my condition.
So I was not impressed with Google Health.

Lastly, I checked out Patients Like Me, and was thwarted at the sign-up page, because they do not have Endometriosis listed as a condition I can sign up to talk about!

Their website registration page has a sentence which reads, “Our current communities are for people with ALS/Motor Neuron Disease, Anxiety, Bipolar, Chronic Fatigue Syndrome, Depression, Epilepsy, Fibromyalgia, HIV/AIDS, Multiple Sclerosis, OCD (Obsessive-Compulsive Disorder), Parkinson’s disease, and PTSD (Post-Traumatic Stress Disorder).”

I noticed the “Don’t see your condition? Request it here” link, and clicked through to fill out the request form to add endometriosis to their website.
Then I signed up on their site, anyway, choosing “Mood conditions (depression, anxiety, bipolar, OCD, PTSD, etc)” from the drop-down menu.
Endometriosis very often leaves me severely depressed, so it’s relevant.

So far, the Patients Like Me site seems like it’s doable. There’s a quick glance in chart format as to my mood and health, and there are forums for people to talk about their issues. You can search people with your same condition and find them in your geographical part of the world to really connect with.

Hopefully they’ll get that Endometriosis community going soon, because I really like the way they tie in symptom tracking and forum communities in one website!

In the meantime, for emotional support, check out the many sites I have listed on the right sidebar of this website, under “Online Support and Advice”.

For symptom tracking, check out the three sites listed in the left sidebar of this website, under “Symptom Tracking”. They are CureTogether.com, ReliefInSite.com and MyMonthlyCycles.com. I personally find ReliefInSite and MyMonthlyCycles the most helpful in tracking and more importantly sharing info about how endometriosis affects me, but CureTogether’s awesomeness comes in collating information from people who share their symptoms, and churning out reports and also a book to educate others! Register with one or all three if you wish!

Two days ago, I was told about another online support group out there, so I want to make mention of it – it is called MDJunction. It stands for “Making A Difference” Junction.

I joined today.

I belong to a number of online support groups for endometriosis, and I check in when I can. I hope to see you there!

A new endometriosis support group has sprung up in the Greater Boston, Massachusetts area. Please check them out at greaterboston_endo · MA!
This support group was formed under the Endometriosis Association’s blessing.