Dear Mary Lou,
My daughter, Tamara, is 14 years old and was
diagnosed with endo in 1996 when she was 12. She is currently a member of the Association
so this application is to renew her membership…She would be especially interested in
receiving newsletters relating to teenagers. Vol. 17, No. 4, 1996 was especially of
interest to her.
Please let us know if an Association teen newsletter
is available. It is going on 2 years since her diagnosis and she feels little to no relief
from the various medications tried. We continue our search and try to remain optimistic.
Some days that is very hard.
Thank you for the work you do for sufferers of endo.
Tamara did her Grade 8 public speaking project on endometriosis this year.
Kathleen, Saskatchewan
P.S. Tamara’s Grandma is sending a donation
which she wants to see used for further development of the teen support/education program.
__________
Dear Correspondence Network:
My name is Bryce and I am seventeen years old. I was
operated on five weeks ago for stage 3 endometriosis. I am interested in the teen
correspondence network.
Thank you for your assistance.
Bryce, Illinois
__________
Dear Endometriosis Association,
…I am 21 years old and am looking for someone my
age who has endo and complicating health problems associated with it.
I also want to say thank you all for being there and
the research you have done. When I was diagnosed I had never heard of endometriosis. The
doctor I saw at that time never explained the seriousness of this disease. Needless to say
as time went on and the pain increased I found another doctor who explained it better.
Then I found out about the Association. At first I didn’t have the money to join*
until last October when things were at their worst. I ordered The Endometriosis
Sourcebook and Living with Endometriosis. (Editor's note: The "Living"
book is no longer in print.) They both helped me to deal with this disease and to know
that I was not alone. My only regret is that I didn’t find a doctor who took me
seriously when I was 13 years old and on narcotic pain relievers that just took the edge
off. I was 19 before my doctor decided maybe something was seriously wrong…I believe
that taking Synarel now is just prolonging what will eventually happen later in my life. I
have come to terms that I will eventually have a hysterectomy…I am determined to hold
out a little longer since I want children. However, if it comes again to where my life has
to stop, that’s where I draw the line.
Again, I am grateful for what you are doing and
hopefully we can get the doctors to take seriously a 13-year-old in pain.
Dawn, Pennsylvania
*The Association budgets for gift memberships for
those unable to afford dues and a few members donate dues for others. For teens and young
women, family members are often happy to pay their dues for them. It’s something they
can do to help! So ask your family or friends if you find yourself unable to join or ask
about gift memberships.
__________
My daughter Gwen was recently diagnosed with
endometriosis after spending the last 3-4 years trying to find a doctor who would take her
pain seriously. She is just 19 yrs. old and was told over and over, "it’s just
menstrual cramps." We knew that wasn’t correct but had no idea until recently
what it was. Unfortunately her condition is now fairly advanced, she is in almost constant
pain along with other problems. We have finally found a doctor who understands this
disease and takes her seriously.
I hope and pray we can get her condition under
control. At 19 yrs. old her life has basically been put on hold, between the pain and
complications she basically cannot function normally most days.
She was a full time college student and now she
can’t even manage to sit through her classes. As a parent, as her mother, it is unbearable
to watch my child in extreme pain, afraid, depressed and frightened. A client of mine who
has endometriosis loaned me her copy of The Endometriosis Sourcebook which is how I
found you. We (Gwen and I) were so thrilled that there was somewhere to turn for support
and information. I can’t tell you what it meant to us to find the EA! My 15 yr. old
daughter, Colleen, was just diagnosed with endo. Colleen was showing signs of the same
nature when Gwen was the same age. I’m beginning to feel like we’ve entered a
nightmare.
If you could also include 50 of your free brochures
we will make sure that they are made available at our doctor’s office. If there is
any other way that Gwen, Colleen, or myself can help we would be happy to do that. It is
obvious this information needs to get out to women urgently. Gwen’s doctor told us
that had her condition been correctly diagnosed 3 years ago we would have had a lot more
options. Because of her age she wasn’t taken seriously. This began at age 15-16, and
even though I was there with her trying to convince the doctors this wasn’t
"just menstrual cramps" we still were basically ignored and treated like crazy
women. The medical profession’s ignorance of this disease angers me terribly and if
we can help change this and get the information to women before they wind up in my
daughter’s extreme condition we would be more than happy to help.
Again, thank you for being there, and thank you for
all your time and hard work. When we got your information packet it was like a lifeline of
hope!
Linda, Michigan
It is heartbreaking letters like these
that have prompted the EA to start several new programs for girls and teens with
endometriosis, from pre-teens to early 20s. Hard as endometriosis is for an adult woman,
adults are likely to have more maturity, independence, and perhaps the life experience and
skills to help them cope to some degree. Girls and teens usually do not have these, making
them particularly vulnerable to the cruelties of this disease.
Thanks to the assistance of freelance writer Christel
Wendelberger, we have been able to update our teen brochure, adding graphics and making it
more acceptable to mid and older teens. Our first teen brochure, in pink, has been used
since 1986 and will continue to be used, in a slightly revised form, for pre-teen, middle
school, and early teens. Members are invited to distribute the teen brochures to area
schools, Girl Scouts, Planned Parenthood clinics, etc. Call Nancy Williams at (414)
355-2200, 8:30 – 5:00 CST, or e-mail Nancy with your request.
Christel is also editing TeenSource, our new
teen bulletin, which will be issued quarterly. Each four-page issue contains features
especially geared to teens: a personal story of one girl’s struggle with endo, a
write-in advice or contact request column, an Advice from the Experts piece oriented to
teens, and a glossary of terms used in the bulletin. We’re looking forward to the
feedback of young women on TeenSource.
Because teens frequently wish to be in contact with
other teens and their issues can be so different than the issues of older women, we are
also establishing a Teen Contact Network. This network will operate like our
correspondence networks. The teen member simply lets us know that she would like to be in
contact with other teens, and her name is added to the list. The teenagers then make
contact with each other in any way they wish—by mail, phone, fax, e-mail. To
participate in the Teen Contact Network, contact Pam McClendon at headquarters.
Finally, we are establishing a Big Sister Program.
Some teens with endometriosis do not have parents or relatives who understand the disease
(although we urge these families to learn about it because of the tough decisions and
support the teen needs). In addition, an experienced woman with endo can be a tremendous
guide and role model for a teenager. Some Big Sisters will be in the same communities as
their teen "little sister"; others may not be but will maintain contact with
their "little sister" by phone, e-mail, mail, fax. In either case, we believe
the coping tips, health tips, ideas on finding good medical care, and most of all, the
listening skills of the Big Sister will be tremendously helpful to the youngster and her
family. To participate in the Big Sister Program, contact Tina Wagner, Support Program
Coordinator, at headquarters.
Because we are aware of so many families with
endometriosis and because coping with this disease is a family challenge, we have
established family memberships. Family membership includes a full regular membership with
all the benefits of membership, including the international newsletter, as well as all the
parts of the teen program—the teen quarterly bulletin, teen brochures, Teen Contact
Network, and the Big Sister Program. Family membership is $50 (the regular $35 for the
regular membership plus $15 for the teen membership). We strongly recommend that family
members of girls and teens be members and participate in local meetings, contact networks,
read the high quality educational materials available from the Association, and keep up
with new developments. A teenager cannot possibly navigate the complex waters of
endometriosis treatment alone and needs informed parents and guardians to assist her with
this. For that reason, teen memberships will not be provided separate from family
membership.
Unfortunately, we have not been able to complete a
videotape on teenagers and endometriosis and are still pursuing full funding for this.
Anyone with leads, let us know! We are also considering adding a teen chat room to our
EA-facilitated chat rooms.
Together, we can help the next generation so they do
not suffer the way we did!
Home Page
