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8/08/2008

Endometriosis Blog: SEVENTH Anniversary Of My Local Endometriosis Support Group!!!

On August 8, 2001 we held our first local endometriosis support group meeting.

Prior to the meeting, I had done various things to create awareness about our new group.

I hung fliers in various places (the library distributed it to every library in the county and even hung them up for me!), notified the nearest city's major newspaper to have my group added (for free since we are a nonprofit group) to their health calendar, distributed brochures to my doctors' offices, & called women whose contact information I had gotten from The Endometriosis Association (which I was able to obtain by applying to be an Endometriosis Association support group leader, getting approved as one, and agreeing to keep women's contact information completely confidential.

When I called the women on the Endometriosis Association list, I received a warm welcome. I told them about the new group and asked them if they'd like to be added to my email mailing list. Most said yes.

I used email (with a distribution list to save time and send one email to the entire email mailing list). I used email to send meeting times, location, and directions to our meeting place.

Once I had made calls to everyone on the list, I had about 23 women signed up for the notification emails. Today my email mailing list has grown to 42 women. Many support group members don't generally make it to meetings but like to get the emails to stay in the loop about endo. Occasionally I send out info on endometriosis research and links to endometriosis sites.

In the last 7 years our group has been busy:

+ Our support group was featured on the local news

+ We (some group members) emailed a major newspaper that had written false and misleading comments about fibromyalgia

+ We shared information regarding hormone replacement therapy

+ We shared information about local physicians

+ We learned of a national news story regarding disability claims

+ We shared information about other local support groups that serve the needs of our endometriosis support group members (an infertility group, an interstitial cystitis group, and a fibromyalgia group are all available in our area)

+ I emailed a link of a radio program regarding interstitial cystitis for those group members who were interested (an excellent radio program!)

+ I passed along online newsletter from the Interstitial Cystitis Association

+ We shared information about making medical exams easier (especially pelvic exams)

+ We shared information about physical therapy for pelvic pain... (Contact The National Vulvodynia Association (http://www.nva.org/) to see if your area has this type of specially trained physical therapist

+ We learned of a website about adhesions

+ We shared information about medical research studies being conducted in our community (for endometriosis and fibromyalgia)

+ We shared information about the dangers of some health & beauty products (for everyone!) - but especially women with endo (see the following website for more information: http://www.cosmeticsdatabase.com/splash.php?URI=%2Findex.php)

+ We learned about a "last resort" surgery called presacral neurectomy from a group member who had the surgery

+ We merged 2 support groups

+ We got local TV stations to agree to air endo public service announcements

+ We generated awareness about endometriosis in our community

+ Occasionally group members even brought snacks to meetings!

+ We held a fundraiser and gave 100% of the proceeds to The Endometriosis Association (with the money we raised earmarked specifically for endo research)

+ We learned that many group members have vulvar vestibulitis or vulvodynia and that many group members get terrible migraines

+ We shared information about breast cancer (melanoma, ovarian cancer, and breast cancer are more common in endometriosis patients than in women who do not have endo)

+ Some group members signed a petition objecting to "drive through mastectomies"

+ We learned of 2 websites... one about alternatives to hysterectomy and the other to support women who had gotten a hysterectomy

+ We had guest speakers speak on nutrition, relaxation techniques, Chi Nei Tsang, acupuncture, endometriosis (a gynecologist gave a fantastic presentation!), environmental concerns specific to endometriosis patients, etc.

+ A group member shared a recipe book that might be helpful for endometriosis patients

+ We organized an email campaign to FDA - to request labeling and eventual phase out of PVC and DEHP from medical devices

+ Group members supported each other during difficult times (such as surgeries)

+ We shared info with each other regarding infertility HMO coverage

+ We donated a copy of The Endometriosis Sourcebook to a public library

+ We connected group members who had similar symptoms to one another so that they could support each other and exchange information

+ We learned of a study showing that chronic pain can alter the brain

+ We discussed co-existing illnesses extensively since many support group members have other illnesses besides endometriosis (ones related to endo)!

+ We shared information regarding a drug recall that impacted some of our group members

+ We shared information on books that group members found helpful

+ We supported patients who experienced miscarriage and infertility

+ We discussed prescription treatments, surgical options, and alternative medicine modalities

+ We created a website with information pertaining to the local support group (directions to the meeting location, a meeting calendar, links to relevant websites, etc.)

+ We shared links to news stories we'd seen on TV or in print

+ Patients have gotten connected with each other between meetings to discuss one patient's vestibulectomy (while another patient was trying to decide whether to have this surgery)

+ We LISTENED to each other!

***UPDATE***

RELATED (PREVIOUS) POSTS LINKS TO THIS ARTICLE INCLUDE:

Monday, July 28, 2008 Endo Blog: What Is “Self-Help”?? What Are The Health Benefits Of Volunteering? Why Join/Start A Support Group??

Monday, August 4, 2008 Endometriosis Blog: Self-Help Groups, Support Groups, and Volunteering Follow-up

Tuesday, August 5, 2008 Endometriosis Blog: My Personal History As An Endometriosis Patient

Thursday, August 7, 2008 Endometriosis Blog: How Finding The Endometriosis Association & Participating In Endometriosis Support Groups Helped Me & Made Me A Volunteer!!



I'll end this post with a quote regarding support & self-help groups:

"Mutual support groups, involving little or no cost to participants, have a powerful effect on mental and physical health... The psychological and physical health importance of this diffuse community is striking... The self-help movement, both in face-to-face and virtual arenas, has tremendous therapeutic potential."

From American Psychologist feature article "Who Talks?: The Social Psychology of Illness Support Groups" by K. P. Davison, J. W. Pennebaker, & S.S. Dickerson, (55) 2, pp. 205-217, 2000.


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

8 comments:

Yaya said...

Jeanne,
Congratulations! Thank you for being a wonderful advocate for women with endo. I'm so glad you started a support group and that it is still intact! You are an awesome leader and deserve to be recognized!!!!
Alicia

Jeanne said...

Alicia,

Hi there! I see we're "insomnia buddies" again. (As I start to write this it's about 4:00 am) Thank you for your kind words, as always!! You always have something positive to say! :)

Before I start this reply to your comment, I would like direct readers to my medical disclaimer at the top of my blog’s homepage.

To be perfectly honest with you, I'm not looking for any recognition at all.

I have sent an “anniversary report” to my support group each year (in August) from the beginning of the group in 2001. I think it helps put things in perspective and highlight the group's accomplishments from working together.

My reasoning behind listing our group's accomplishments is to:

+ Give examples of what a support group can accomplish when they work together as a team. This may give other existing support groups (or future ones!) a “roadmap”, so to speak. There are so many benefits to participating in a support group. Since many on the local email list have never taken part in an in-person meeting, I think it helps to give details about what we accomplish besides our monthly meetings... (which are the core of our support group).

+ Show that a relatively small group of determined, passionate women can make an impact and let their voices be heard.

+ To demonstrate (again through some examples) how support group members support each other.

+ I wanted to give a bit of background of some possible ways to prepare for starting a group. There’s no sense “re-inventing the wheel” when there are organizations and fellow Group Leaders out there who are more than willing to help one to start a new group.

+ To give specific ideas to women thinking of starting a support group in their area that might make them feel less overwhelmed or apprehensive about the idea. A support group is what the group members make of it! People get out of it what they put into it.

The more active participants (this can be either in-person participation OR those unable to attend meetings who still provide feedback by email or phone), the stronger the group becomes. Group members’ needs can be best met if they are properly identified!! Feedback is so important!

+ I believe it was important to include concrete examples of the support, information and research regarding endometriosis... BUT IT’S ALSO IMPORTANT to emphasize that there are many co-existing illnesses too!

We talk a great deal about co-existing illnesses because so very many of our support group members have multiple illnesses that doctors and scientists believe are somehow related to endometriosis.

+ It’s important to me to spread the word about other support groups that may benefit endometriosis support group members. (See below for support groups and organizations that have helped our endometriosis support group members with endo and with other chronic illnesses).

For endometriosis resources, contact:

The Endometriosis Association ---
http://www.endometriosisassn.org/

Endometriosis Research Center ---
http://www.endocenter.org/

CureTogether (a medical research organization researching endometriosis) ---
www.curetogether.com

For example for infertility support groups, see if RESOLVE has a group active in your area at one of these websites):

http://www.resolve.org/
http://infertility.about.com/od/organizationsbooks/a/RESOLVEgroup.htm

For fibromyalgia resources, contact:

The National Fibromyalgia Association ---
http://www.fmaware.org/

Fibromyalgia Network --- http://www.fmnetnews.com/

For interstitial cystitis resources, contact:

The International Cystitis Association ---
http://www.ichelp.org/

I also found this resource online that may be helpful to irritable bowel syndrome sufferers:

Irritable Bowel Syndrome Self Help and Support Group
http://www.ibsgroup.org/

Chronic illnesses often exacerbate or provide the initial trigger for multiple types of depression. Seeking professional help (psychotherapy and/or psychiatric treatment as needed) can be very helpful. In addition, here are some resources that may be helpful:

NAMI (National Alliance on Mental Illness) ---
http://www.nami.org/

DBSA (Depression and Bipolar Support Alliance) ---
www.dbsalliance.org/

National Mental Health Association ---
http://www.nmha.org/

RELATED (PREVIOUS) POSTS LINKS TO THIS ARTICLE INCLUDE :

Monday, July 28, 2008 Endo Blog: What Is “Self-Help”?? What Are The Health Benefits Of Volunteering? Why Join/Start A Support Group??

Monday, August 4, 2008 Endometriosis Blog: Self-Help Groups, Support Groups, and Volunteering Follow-up

Tuesday, August 5, 2008 Endometriosis Blog: My Personal History As An Endometriosis Patient

Thursday, August 7, 2008 Endometriosis Blog: How Finding The Endometriosis Association & Participating In Endometriosis Support Groups Helped Me & Made Me A Volunteer!!

The benefits of self-help and support groups cannot be overstated.

Jeanne

My Endo Journey said...

Thanks for this post! I wish we had a group in town. I don't have the time to lead one.

Jeanne said...

"My Endo Journey",

Thanks for the feedback! :) You may want to investigate to verify that there is no group near you.

When I was diagnosed in 1992, The Endometriosis Association informed me of the first group I went to. They also helped me find the 2nd one. When I moved back to my hometown, I attended the initial group again.

Then when I got married and moved about an hour away from my hometown, I called EA and they told me there was no endometriosis group in my "new" (closest) city.

There must have been some sort of confusion or miscommunication because once I looked into forming my group, I discovered there WAS (!!) an EA support group in my "new" city (granted it was a bit further than I felt like driving for meetings). The group had existed for over a decade too!!

So if you have called somewhere and been told there is no group, it may not be accurate information!

Also, most doctors aren't well-versed, I have found, on what support groups are available for endometriosis (and other chronic illnesses). Many women finally find our group and tell me, “my doctor has told me for years that there was no endo group near here”! Imagine my frustration when we’ve been on TV news and in newspapers but there are still women out there who can’t find our group and who go to docs who tell them there is no group!! The needless suffering burns me up.

Another place you could call/check online with for local endometriosis groups is The Endometriosis Research Center. They have groups around the U.S. too.

If you dig deeper and verify that there is definitely no endo group in your area, there is no rule that you must meet monthly. I know from reading your blog that you are very sick and that monthly meetings might seem very overwhelming. I've heard of some groups around the country meeting much less often (i.e. quarterly).

It might be something to consider. I don't know what I would do without my local endo support group!!! I have learned so much... not just about endometriosis but about co-existing illnesses. I have interstitial cystitis, fibromyalgia, and irritable bowel syndrome (among many other diagnoses, I'm afraid!)... I didn’t always have all of these co-existing illnesses. I wonder if I could have somehow prevented some of them if I had learned things sooner than I did! The endo support group has provided me with more info than any other one source!

I have learned a great deal from fellow group members about these co-existing illnesses as well. I went undiagnosed with IC for many years. Doctors blamed my pain on endometriosis but it was really interstitial cystitis (at least in part).

This is just one example of how co-existing conditions can often get missed. Networking with fellow endo patients helps the patient find all the best resources in the local area!

One thing I have done over the years is try to have a Group Co-Leader when possible. I've had 2 Group Co-Leaders. One did it for a few months and the other did it for a couple of years until she stepped down recently to focus on more pressing health issues. I have been Group Leader the remainder of the time.

If you can find a Group Co-Leader to assist you, you can cover for each other on meeting nights when one of you is just too sick to attend. You can help each other with other things too!

The amount of time it takes to lead a group is really very much up to you!! You can customize it to fit your schedule. I DON’T mean to sound "pushy" on the subject and you may feel you literally don't have a moment to spare. I just know that the time “pays for itself” for me. The time I invest in the endo group saves me time and energy (plus needless pain)! I can’t recommend trying it highly enough. You could always step down if it doesn’t work out.

Again, I really don’t mean to sound pushy. I know what it’s like to be VERY sick! I have MANY other illnesses besides the ones I mentioned previously. I am disabled and those are just the tip of the iceberg. I used to work 80+ hours a week in my 20s. I’m 39 now and too sick to work outside the home. I have learned my lessons of pushing myself too hard in work/career and trying to meet family and friends’ expectations of me. With both the support group and blogging, I control the amount of time I spend. If I’m too sick, I can just back off. I learned the hard way what happens by working too many hours. I didn’t take care of my body properly and now I’m paying the price. (You only get one body)!

I don’t mean to suggest that you are making the same mistakes I did. By recognizing you don’t have time to lead a group, you may be engaging in good self-care!! Only you can decide what’s best for you and your situation!

The thing is that every ounce of time and energy I spend on my endometriosis support group ends up helping me in the long run!! I swear to you that I don’t know what I’d do without the fantastic network of local “endo friends” that I now have locally… who “get it”. I have made so many friends through the support group that I can talk with between meetings when I need extra support or information!

Sure there are months where I'm TIRED and IN PAIN and "dragging myself" to meetings. I have to say, though, that I've never had a meeting in 7 years that wasn't worth the time and energy to get there! They are always worth it to me!

Studies show that support groups and self-help groups are GOOD for patients' health. Also, studies how that volunteering has health benefits! (See my other posts about this very topic ---

RELATED (PREVIOUS) POSTS TO THIS ARTICLE INCLUDE:

Monday, July 28, 2008 Endo Blog: What Is “Self-Help”?? What Are The Health Benefits Of Volunteering? Why Join/Start A Support Group??

Monday, August 4, 2008 Endometriosis Blog: Self-Help Groups, Support Groups, and Volunteering Follow-up

Tuesday, August 5, 2008 Endometriosis Blog: My Personal History As An Endometriosis Patient

Thursday, August 7, 2008 Endometriosis Blog: How Finding The Endometriosis Association & Participating In Endometriosis Support Groups Helped Me & Made Me A Volunteer!!
-----
Anyway, if you don’t have a local group and don’t have time to lead one… I’m glad you have the blog and online community with which to exchange information and support!!!!!

Thank you for posting your feedback! I know from reading your blog that you have been through some major adversity. You are a strong woman and you should be proud of the hard work that has gone into your blog!!!

I’ve certainly had my share of adversity! I try to share my experiences with other patients (particularly younger ones who are pushing themselves too hard like I used to). I try to help people learn from my mistakes!

Also, again… I truly do get at least as much (if not more) out of the group as what I put into it).

Thanks again for the comments. I hope you are feeling better!!!

Jeanne

P.S. Alicia, who commented earlier on this same post, has become a close friend of mine outside of the endo support group!! If it weren't for the group, we never would have met! Having friends who truly understand chronic illness is VERY comforting!!!! :)

EdinNJ said...

Dear Jeanne,

Congratulations on helping some many people over those 7 years, and also giving others the opportunity to help others too. Best to you in your continued good works!

- Ed
American Self-Help Group Clearinghose
St. Clare's Hospital, NJ
www.selfhelpgroups.org


"Alone we can do so little;
together we can do so much."
- Helen Keller

Jeanne said...

edinnj,

Thank you for your kind words.

One of the main points I am trying to get across to people is that investing the time & energy to participate in (or lead) a support group or self-help group benefits the health and well-being of those participating.

I don't know what I'd do without my local support group... The support and information I've gotten there is more than any one source outside of the group!

My fellow support group members are a wealth of information!

Thank you for commenting on my blog!

Our group is wonderful because in addition to having newer group members who are "learning the ropes", we have more experienced group members who are "giving back" and sharing their knowledge with others.

I especially appreciate the group members who "give back" by sharing their experiences with others --- even when they themselves are feeling better and could be spending their time elsewhere. It's so great to see things come full circle!

By the way, I love the Helen Keller quote. It's so true that there is power in numbers and that by pooling our knowledge and working as a team we can benefit so much more than going it alone.

Jeanne

Mckay K said...

Congratulation on seven years of leading your local endometriosis support group Jeanne!

Obviously there are days that you don't feel like going, but you pull yourself together for others.

The work you do is so very important. The lives you touch without ever knowing it is what makes this blog so crucial.

Keep up the GREAT work!

Jeanne said...

Mckay,

THANK YOU for your kind words! I really appreciate your support!!

There have been meeting nights where I honestly didn't know how I was going to make it (!) but once I got there the effort was well worth it!!! I'm fortunate enough to have a supportive husband who drives me to meetings on months when it's not safe for me to drive (due to medications making me drowsy). He just hangs out during the meeting and reads or something. Clearly this enables me to attend meetings I would otherwise have to cancel. The only meetings I cancel are for blizzards/unsafe driving conditions, months without any “yes” RSVPs (months that look like they’ll be “no shows”), or once when our meeting location had a power outage on meeting night.

When I had my last surgery (in January), I asked my group members if anyone would be willing to facilitate the meeting in my place. I not only got a volunteer to do that but she offered to do a presentation that month! (She is a chiropractic student who is well-versed in nutrition/supplements and alternative medicine and she had presented to our support group one other time).

Having regular commenters like you really makes this blog more useful & informative!!! People like you make this blog better because you have such thought-provoking and insightful comments. You have been through a great deal of adversity and have obviously learned a lot along the way! Your wisdom and support really add to this blog immeasurably!!

Keep up the GREAT work on your own blogs!

Chronic illness blog:
http://livingwithachronicillness.blogspot.com/


Blog about Mckay’s Koi Pond & Garden:

http://blog.myspace.com/index.cfm?fuseaction=blog.ListAll&friendID=123987592

You are helping so many people with the thoughtful words you write on your blogs, with posting comments on so many others’ blogs, and by sharing your beautiful garden as well! :)

Jeanne

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