STORIES FROM A
MOM'S HEART
The following are excerpts taken from real Mom's (hopefully soon we can get some from Dad's) who are going through the agony of helping their daughter manage this insidious disease called Endo. These have been extracted from the DaughtersWithEndo message boards.  DaughtersWithEndo is an online support community where parents can share their experiences from finding a doctor, to getting a diagnosis and to the anxiousness of awaiting more surgeries.  The online group willingly shares information about the types of treatments that work and have not worked for their daughters.  The group is very candid about side effects of prescribed medications.  The group members also get to share in the happy moments of their lives when a daughter with endo starts feeling better or when one goes off to college for the first time.  The one thing the group members NEVER do is criticize others about how they manage their daughter's care.  For we have learned that what works for one, will not work for another.  Though most of the members have never met face to face, we are like a real family who truly understands the varied and wide range of emotions that a family with endo goes through.

You, too, can join this message board and become a member of DaughtersWithEndo.  Just go the Resource section and link to the site.

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You wouldn't believe some of the things we heard on our long quest for a diagnosis. The "best" thing was a doctor told my daughter she was a burden to her parents and friends because of all the symptoms she was experiencing.  She has had stomach pains all her life...but the pain returned with a vengence when she was 10 years old...just before getting her period.  That was when we started our journey with a multitude of doctors in search for a diagnosis.  She was finally diagnosed by a lap at the age of 16 and spent 2 1/2 years on the couch, losing most of her teenage years to this disease.  She went to her prom with accupuncture needles stuck in all her pressure points but she still looked so pretty.

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She can be fine one minute and in horrible pain the next.  She has gained weight from all these medicines and we know how that affects them as well as ourselves.

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We ran into a bit of an obstacle unexpectedly with one of my daughter's teachers at school and so my husband is lining himself up to battle it out with her...and she'll lose.  She had fallen behind in her classes last semester, what with the severe problems she was experiencing for those months before surgery, during her surgery and her recovery.  She was working on her make up work and had touched base with the teacher to work out a schedule for completion. Out of the blue, the teacher told her grades had to be turned in today and she would get zeros for all work outstanding.  Her grade will be a D.  My daughter didn't take it well, and so, here we go. . .at the scrimmage line again.

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My daughter was such a healthy child when she was younger, but after about the age of 16 her overall health has gone to hell. After she had her lap, she went on Lupron (this drug throws your system into a pseudo-menopuasal state and is standard medical protocol following a lap). She was pretty much pain free for 6 months. Although she did suffer from the side effects such as hot flashes, night sweats, weight gain, headaches, memory loss and most of all depression. But after the treatment, the pain returned with a vengence. How much does surgery really help? It seems so many girls are in just as much pain afterwards.

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