OBGYN.net: The Universe of Women's Health

An OBGYN.net Exclusive Interview
from the Endometriosis Walk For Awareness
Heather Guidone, OBGYN.net and Carla Folz, Daughters with Endo Support Group

HEATHER:  Carla, can you tell our OBGYN.net readers a little bit about your daughter's history with Endometriosis, and what you do to help her and empower your family over this disease?

CARLA:  Danielle was diagnosed with endo in '97 at the age of 15. She had been through a battery of tests before her diagnosis for 4 months prior to that. Everything from a colonoscopy to upper GI to CT scan, all which proved absolutely nothing. I had often asked them if it could be gynecological because she always complained of her pain being mostly in her left side in the area of her ovary, but I was always shot down with a, "no, she is too young for that to be a problem," and I was always very intimidated by the doctors. 

It took a visit to the ER with her being in such unbearable pain she was doubled over and couldn't straighten up; the doctor on call did a pelvic exam, (which was her first by the way) that almost sent her through the roof with pain. He thought there could be a possibility of a cyst or something else so he contacted the ob-gyn on call and spoke to him about it. He told us they could possibly do a lap the next day and would check her into the hospital that night with plans to do a lap. The doctor that was to do her lap talked to us the next day to say he would do the lap, but felt he probably wouldn't find anything anyway, but to ease our mind he "would do it."  After the surgery the doctor came out to talk to my husband Rick and I, and said he was very surprised by what he had found.  Danielle had her period at the time and the doctor said wherever there was Endo, it was bleeding out. He removed it from her left ovary and the right pelvic wall. She recovered from the surgery very well and was pain free for about 5 months, when it all started again...the pain in the left side again, the cramping, and dry heaving.  We went into the doctor again asking if he could do another lap.  He agreed and went in again only to find it on the ovary again and also behind the uterus.  He wasn't sure if it had come back or if he had missed it the first time. Again she recovered very well but a few short months after having some very depressive episodes, she would think about the fact she may not be able to have children because of the endo (her dream is of having children some day), and this would bring her down to a point where she was getting so deeply depressed she couldn't bring herself out of it.  We saw our family doctor about it and she was put on anti-depressants.

After a few weeks we noticed a little improvement and life went on.  After a few months the depression began to go downhill again and we decided to take her to a psychiatrist for treatment and also for her to see a psychologist for counseling. Her medication was changed again which did help and she started to see the counselor.  She was a great person for Danielle to talk with as she also suffered from endo and knew what she had been going through. Her life was a constant battle of ups and downs after this, and because of this her boyfriend dumped her right before Christmas and she was having trouble just attending school on a regular basis. The school district was being a problem with all of her absences even though she was keeping up her grades, but between the endo and depression, there were many times she didn't or just plain couldn't go to school.  It seemed there were no sympathetic ears when we tried to tell the doctors, school officials, and psychiatrist that she needed more help, everything she was dealing with was just way too much. We were forced to take her out of school and home school her for the remaining months of her junior year, when the school told us if we couldn't get her to school they would "physically come and drag her there." 

She had a third lap surgery in May of '99, when she couldn't take the pain anymore and was living on narcotic pain meds just to make it through the day.  Rick had to beg the doctor to go in again to help relieve her pain as we were afraid she would become addicted to the pain pills.  More adhesions and scar tissue were found with endo on the left ovary again and also on the bowel. Through all this time and the 3 laps, the doctor had tried various other treatments: continuous birth control, progesterone-only pills, and changing the birth control pill; only these had such unbearable side effects that she would have to quit. Lupron and Depo-Provera were suggested but we denied because of her age and the chances of her depression becoming worse. In October of '99 her symptoms began to worsen again, every month seemed to get worse, just when we were getting her depression leveled out and things seemed to be looking up it all started to fall apart again.

By December, she was on narcotic pain pills again because the pain was getting so bad.  In January, we went to see a new ob-gyn who suggested our only 2 options left were Lupron and Depo-Provera, and because Depo had worse depression side effects, she felt we should try Lupron.  She gave her the first shot at that visit, and told us after 2 months if the pain didn't go away we would know it was something other than the endo, because if it was endo the Lupron would work to get rid of the pain. Her pain increased as she told us it would the first 2 weeks after the shot and got so bad it seemed we were in the ER at least once a week.  She was still taking narcotic pain pills daily just to make it through the day which concerned us, as we didn't need her to have another battle on her hands. Our doctor was of no help, really, and after 2 shots when the pain was getting worse instead of better we just wanted her to help...she thought she may go in to do a lap to see what she could find, but after talking to the doctor that did the other 3 told us that she decided against it because they felt that Danielle was getting a placebo effect from the surgeries and the only reason they were helping was because it was all in her head that they would, and also she notified all the doctors in our area that she felt Danielle was becoming addicted to narcotic pain meds and they shouldn't prescribe them to her if she were to come in wanting them.  I'm sorry, but I would know if my daughter had an addiction and her only addiction was to feeling good and being able to resume some sort of normal life!!  Is that too much to ask of a 17 yr. old who already has had her teen years taken from her by not 1 but 2 terrible diseases?

My daughter has had to go through more in her 17 years of life than most adults will in their lifetimes. She has been criticized by school personnel, doctors and people in the community who judge her without even knowing what she has had to live with everyday. Her old school friends don't keep in touch with her anymore and she can't hold down a job because she doesn't know how she will feel tomorrow let alone next week or month for that matter.  Planning anything is touch and go, as we never know if she will feel ok or once getting there if we will have to leave because the pain is too much to handle. She has somehow remained a fighter through it all, but there are days when she questions if she can go on.  This is so hard as a parent to sit and watch your child suffer through so much and find it hard to find a doctor who will listen to you and do what they can to help.

HEATHER:  Carla, how do you get through it?  And what have you gained by being at the EndoWalk?

CARLA: We have found great support the last couple months by myself joining the daughters with endo group and Danielle joining the teens with endo group, (only because I forced her to, really!). The people we have met through these groups have been there for us to share stories and give advice, and we are both grateful for all of them. We were able to attend the EndoWalk and had the opportunity to meet a few of these wonderful people...it was the best time of our lives to be able to meet face to face and share time together.  Isn't it great we still can all smile through all we have been through?!  We all agree that you have to keep smiling and moving forward, we hope for a cure for this disease and will do all we can to help raise awareness and search for a cure.  Danielle was so moved after going to the EndoWalk that she is thinking of starting a support group in our area where there isn't one, which I think will help her to know there are others and to share what she has learned.

HEATHER:  Thank you, Carla, for sharing your story and showing society that our teens suffer from Endo as much as our adults, and that it is not an insignificant issue. Your courage, and that of Danielle's, is inspiring!

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