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6/01/2008

Welcome to Jeanne's Endo Blog!

I would like to welcome everyone to this brand new endo blog. I am very excited about it! This is something I have thought of doing for awhile now.

I would like to start by thanking two people who have inspired me to pursue this idea of creating an endo blog. First, I'd like to thank Tracee for her generosity, moral support, and time! Tracee's blog was what first inspired me to even dream of creating a blog. I'd also like to thank my husband. He spent lots of time discussing this with me and was very encouraging. While I had privately pondered making a blog, both Tracee and Don came out and suggested it without me ever saying aloud that I was seriously considering doing it!

Also... one of my endo support group members, Alicia, emailed me to announce her new (non-endo) blog a couple of days ago. I had already made up my mind to create this by then and was very happy for her deciding to create a blog herself. Alicia has also been very enthusiastic in supporting my decision to create an endo blog. :)

So, here goes. My first real endo blog post. I guess it makes sense to start this blog by explaining my intent. My intent is to provide information that endo patients are likely to find interesting or helpful in managing their illness. As I mentioned in the disclaimer above, this blog is NOT intended to provide medical advice. I'm a layperson. I plan to share my personal experiences, any info my support group members would like me to share, info regarding alternative medicine options (of which many are unaware), any endo legislation I come across, lots of links to helpful websites, etc.

I'm am very excited about this venture. I hope we get lots of activity from people on comments to the posts. It should end up being a forum for vigorous exchange of ideas.

Finally, I should forewarn readers up front that I may not always post as regularly as I would like to be able to. So please be patient with me when these times occur. I will post as often as I'm able with the many illnesses I have. If you don't hear from me for awhile on this blog, it simply means I'm too sick to blog at that time BUT I'll be back at it as soon as I possibly can.

This should be an exciting opportunity to get endo patients connected, interacting, exchanging ideas, and empowering themselves. I believe it's SO important for endo patients to advocate for themselves. Navigating the health care system can be challenging. At some point, I hope to post tips like "suggested questions to ask your doctor in a pre-op appointment" and "what is available besides drugs and surgery?"

Please come back and visit regularly. I think you'll find this blog supportive and, hopefully, quite useful.

Thank you for checking the blog out. I hope you'll become a regular visitor!

:)


Take care,

Jeanne

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.

8 comments:

Yaya said...

Yay! Awesome! I'm so excited!!!!!! :) Congratulations! Isn't blogging fun?!

Jeanne said...

Hi Alicia! Your comment came through just great. Yay! Yes, it's fun! I can't wait to hear from some of our other support group members too! :)

Katie Cat said...

Hi,

I think it's GREAT that you are starting a new blog!!!

Love,

Katie Cat

Jeanne said...

Katie Cat,
Thank you and I love you too!
:)

Tracee said...

Congratulations Jeanne. I'm very proud of you!

I think you'll do a smashing job of supporting women who suffer from this condition.

I know you have a lot to say about it.

You have a lot of resources to share, whether for those who are newly diagnosed, struggling to get a diagnosis or trying to keep their heads up.

Jeanne said...

Tracee,

Thanks! Your help was a huge, massive help in getting moving on this. I really appreciate all of your help more than you'll ever know.

Right now, ideas are popping out of my head. I'm not worried about the well running dry for ideas anytime soon.

I really am excited! Thank you again for all the tips and support to assist me in getting started!

Jeanne :)

D2 said...

It is great that you have set up this blog. Your 16 years of experience in working with the medical community can only help others avoid some of the pitfalls you have encountered and hopefully others can benefit from the lessons you have learned.

I can’t wait to read about alternative treatments for endometriosis. I understand that there are certain cautions one should consider when considering a hysterectomy and that a hysterectomy may not end the pelvic pain, but worsen it.

I have heard that 1 in 5 women are likely to have endometriosis and that it generally goes on undiagnosed for years and girls / women surfer needlessly. While there is no known cure for endometriosis today, there is much that CAN be done to relieve many of the symptoms. Endometriosis does not just affect women. Men are greatly affected by the illness too because their significant other / wife or daughter has the illness. “When momma isn’t happy, nobody’s happy.” Hopefully this blog will help lots of girls and women find some relief from this very painful illness.

Lastly, I would encourage all women to discuss this topic openly with other women and their daughters. There is nothing shameful about endometriosis or parts of the female body! Don’t be afraid to share this blog with others. Communication is the first step in resolving an issue. Communication with other women who have the illness is great, but be sure to communicate with your doctor. It is OK to ask questions with your doctor! If something doesn’t seem right to you, ASK. The medical community cannot help you if you don’t communicate your concerns. Jeanne, this is a great way for you to initialize communications and open the door for girls and women to share their concerns with others and with their doctors.

GREAT JOB !!!

D2

Jeanne said...

I’m glad you like the blog so far! In the 16 years since I was diagnosed with endometriosis by laparoscopy, I certainly have been through some challenges. The wonderful thing I have learned is that by sharing my experiences with other endometriosis patients, I learn as much from them as they do from me. All endo patients have their own journey. By networking with one another, we can ease the journey for fellow endo patients.

Yes! I am excited about alternative medicine options too! As far as hysterectomies are concerned, it is important to make educated decisions about this major surgery. Hysterectomies don’t often achieve the results patients expected going in. Only endo patients and their doctors can make treatment decisions. Please see my post on endo links for websites pertaining to hysterectomies. There are many other treatment options besides hysterectomy. Unfortunately, I have a very close friend who had a hysterectomy and has become much sicker since. Her pelvic pain issues are different in nature now but she strongly believes that she was better off before her hysterectomy. Again, I can’t prescribe treatment options but I can share stories I’ve heard from endo patients I know.

As far as statistics, my understanding is that 5.5 million women in North America have endo and over 89 million women worldwide have endo. Yes, diagnosis happens later than it should for many endo patients. There is no cure for endo but there are many options for treatment. The drugs and surgery most doctors prescribe are just part of the picture. There is a world of opportunity in alternative medicine for the symptoms of endo. Again, I can’t prescribe treatments but our blog will certainly talk about alternative medicine options many women have had success with.

Excellent point… endo certainly affects women’s relationships. Yes, endo affects the endo patient’s family members. Chronic illnesses like endo can affect the entire family dynamic.

My hope is that this blog will provide emotional relief and support… plus it will hopefully help women learn how to advocate for themselves when interacting with health care professionals.

I agree it’s important for women to network with other patients and talk about endo openly. It’s also important for endo patients to be open with their daughters, if they have any. Endo is a genetic illness and an endo patient having an open dialogue with her daughter(s) is key. In the unfortunate event an endo patient’s daughter is diagnosed with endo, she’ll have a foundation for coping with it from day one. She’ll also be aware of symptoms to look for as suspicious of endo.

Interestingly, I have met several endo patients who were ashamed to discuss endo with others. I believe part of this is societal taboos regarding reproductive organs and I think patients’ upbringing is also a factor.

Yes, I’m hoping all who see this blog will pass it along to someone they know who has endo or who has suspicious symptoms of endo. Endometriosis is diagnosed by a surgical procedure called laparoscopy.

Yes, communication is important! Women’s communication with their health care providers is SO important. Also, communicating with fellow endo patients is SO helpful as well.

Asking the right questions of health care providers is very important. Having a partnership with your doctor(s) is key.

Thank you! I really do believe this blog will open channels of communication and give women ideas for how to effectively communicate with their health care providers.

I REALLY APPRECIATE YOUR SUPPORTIVE COMMENTS!!!

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