ENDO Messages for October, 2006: Sciatic Endo, hip leg back pain, a very new site for us to build

Sciatic Endo, hip leg back pain, a very new site for us to build - a place to chat

From: Angela (anonymous@obgyn.net)
Thu Oct 19 07:41:49 2006

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Hi Ladies

A few weeks ago some of us agreed to get together online.

I have created a place for us to do just that!. 'Us', who have hip and leg issues possibly due to, or diagnosed as being, sciatic nerve involvement in our endo. Of course all women with endo are welcome, but this site will focus on rare manifestiations of endo. If anyone with or without sciatic endo has even the tinyest bit of info about sciatic endo, even just a sentence about it in a book or something - please let me know!

First:

This site is called UncoEndo - go visit it to find out why!

http://www.freewebs.com/endometriosis

It is a new website to highlight our issues for our own benefit and future sufferers benefit.

http://uncoendo.proboards88.com/ is the forum I have linked to it. We can start talking, comparing notes, sharing and commiserating.

Its for -women with sciatic endo, -who have undiagnosed hip and leg pain -who might face the prospect of sciatic endo in the future. It's also for their families.

There is very little there at the moment, on either site - I made it all last night (and it needs a good edit already!). But I am determined to build a web presence for women who suffer with sciatic endo. I have a bit of content ready to go, some links to put on there and of course the endo survivors letter will be there!

There is a lot to do though.

I need your support. I need you there as cheerleaders - pom poms in hand - telling me what to do and how I am going. If you can bear to, I need you to actively contribute. Your experience, your knowledge, your time, your effort. Fancy being the forum mod? What about researching and writing articles or doing book reviews? All suggested content will be considered. Just send me a query. This isn't 'my site'. I am the kind-of editor/contributor. It is for everyone with this condition. Help with creating this site will be embraced!

I know NOTHING yet about sciatic endo - only that it has almost ruined my life and is hard to discover as the cause of hip/leg pain.

I need to know what you know about this disease already. Even anecdotal evidence will help.

Also, what sites, books and organisations do you want to tell people about. WHo has info about sciatic endo? let me know. Lets do this together.

There are not many of us with sciatic endo. Endo itself is much more common than pregnancy, but my experience with sciatic endo is that it is a mega-invisible symptom of a still-too-invisible disease. Its a particularly nasty symptom which needs early intervention. So we need to gang up! For our sake and the future generations sake.

Here is the thing - I am a chronically ill woman, not very web savvy and have three small kids, a course to do, work to do and a house to run. So if I sound like I have about as much time to commit to this project as you do - great! Come join in... Many hands make light work!

Even if you just cant contribute, come over and get some support - you will be contributing just by saying 'I have that too!'. Its nice to know we aren't alone. I thought I was completley alone with these symptoms for a decade!

** Please also Excuse - AND POINT OUT TO ME - all typos, poor english, erroneous information on the site. **

Sincerely

-- Angela

--
Angela
long time endo survivor

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