Here is a mother’s story on how she deals with her daughter having Endometriosis.
I’m a 40-something woman who has known a few women who had a condition called Endometriosis. I knew these women had occassional pain and both had difficulty having children. One of my friends was able to conceive, but miscarried several times before having two successful pregnancies. I also knew they took medication to help with the endo and had some side effects. At that time, I never gave endometriosis much additional thought.
That all changed in September 2000 when a surgeon came out to tell my husband and me that our 13 year old daughter had endometriosis. Briefly, here’s how it started:
Our family was vacationing out of the country in June 2000 when my daughter, Angela, began having severe abdominal pain a few days before her period began. Her pain level remained high and it lasted for almost 2 weeks. Until that month, she had experienced little, if any, menstrual cramping. For that reason, I just assumed it was a one time problem and treated her symptoms with Tylenol. However, the next month, she once again began having excruciating pain but that time, it started about a week before her period and continued for a week and half during and after her period. In total, she was in extreme pain for about 2 1/2 weeks in July. I called her pediatrician and he wanted to examine her.
Her pediatrician found nothing during the exam which would cause such intense pain and he told us that the pain was lasting too long to be related to her menses. He said he would consult with a pediatric gynecologist. At that time, I didn’t know that there were gynecologists who specialized in pediatric and adolescent gynecology.
The next day, Angela’s pediatrician called to report on his consultation with the gynecologist. The specialist agreed that ‘something’ was not right and he wanted Angela to have an ultrasound. That was scheduled just a few days later at a local children’s hospital. The ultrasound indicated she had a cyst in her right ovary and in the fallopian tube. With that finding, Angela then became a patient of the pediatric gynecologist.
At our first appointment, he explained there were two kinds of ovarian cysts; one was filled with liguid and usually responded well to hormonal treatments and the other was a dermoid cyst which was a solid mass that would never respond to medication. The only way to get rid of a dermoid cyst would be surgery. We were told that many women and girls had liquid filled ovarian cysts that never caused any pain because they responded to the body’s natural hormonal cycles. In other words, they would fill with blood and then shrink and the blood would be expelled during the monthly menstrual period. However, some girls and women had these liquid filled cysts that did cause pain and a low estrogen birth control pill was prescribed along with an anti-inflammatory drug (such as Anaprox) and this prescription combination controlled the pain. So, being optimistic that she had the liquid filled cyst, she was started on the birth control pill and the Anaprox.
We were cautiously optimistic as we waited to see what the month of August would bring. Unfortunately, it was a total repeat of the prior two months. She was in so much pain she just laid on the couch curled up in a fetal position with a heating pad. Again, this went on for about 2 1/2 weeks.
I was getting very concerned especially because her 8th grade school year would be starting soon and I knew she couldn’t miss over 2 weeks of school a month. So I called the doctor and explained what had happened. Though he was a little less optimistic as before, he did ask that we try to give the medications another month to see if they kicked in and began to ease the pain.
On September 1st, less than two weeks since the pain ended in August, Angela awoke with a lot of pain. I think I knew at that point that surgery was going to be required. School began after Labor Day, and she spent as much time in the nurse’s office as she did in the classroom. After many phone calls and visits to the doctor, we decided to go ahead and have him perform surgery to remove the cyst. The surgery was scheduled for September 29th. During the month of September, she did not have one pain free day.
Her surgery was performed via laparoscopy at our local children’s hospital. Our doctor said it should only take about an hour to remove the cyst and get her back into recovery and that he would be out to speak to us as soon as he finished. When he came out about an hour and a half later, he immediately told us she was ok. We then went into a small conference room to get a full report. He told us he was so glad we went ahead with the surgery because “he found a lot more inside than he was expecting”. Nothing horrible, he said, but in addition to the cysts, he discovered endometriosis in her right ovary and he found she was retaining a lot of blood in the uterine cavity that shouldn’t be there.
He then told us that any one of those three conditions (cyst, endo, and excess blood) could cause intense pain and considering the fact that she had all three, he was amazed that she was functioning as well as she had been. Because of finding endo in the right ovary, he also went into the left one to see if there was any sign of endo there. Fortunately, he did not see any but he did biopsy it to make sure. The pathology reports indicated microscopic endo was still present in the right ovary but the left one was clear.
A few days following her surgery, I began my quest to learn as much about endometriosis as I could. What I found was a lot of conflicting information. I felt confused and overwhelmed. At our first post-op check-up, her doctor recommended Angela be placed on Lupron for 6-8 months which would temporarily put her body in a pseudo-menopause state to allow her insides time to heal properly. Lupron would stop her periods but she could experience the usual side-effects of menopause such as hot flashes, weight gain, etc. I am not a medical person in any way, but although the explanation of Lupron sounded feasible, many red flags were waving in my mind. These red flags were questioning the physical changes we’d be putting on a 13 year girl who had only been having her menstrual periods for just over a year. I kept thinking this way: She has a period for let’s say 14 or 15 months, now we’re going to stop them for 6 – 8 months, and then we’re going to let her start them again. Somehow I kept telling myself this could not be good for her young body.
I questioned the doctor on the potential side effects Lupron could have on Angela and young teenage girls. The response was that research has shown only that some girls experience a small amount of bone density loss but that calcium supplements could counter that. Being optimistic, I refused to begin the series of Lupron shots until I had done more research.
Unfortunately, my research revealed that not much research has been done on the side effects of Lupron on teenagers. What I did find was that the results of lupon shots in ladies in their 20’s and 30’s were not all that positive. Many did find some pain relief while they were on the shots, but most reported that all or some of the pain returned immediately after they stopped the series of treatments. It seemed to me that quite a few of these women felt the side effects of Lupron were as bad as, if not worse, than the original endo pain they were trying to relieve. Some of these side effects were the hot flashes, weight gain, extreme mood swings, very dry vaginas and painful intercourse. The more I read, the more I decided that I did not want to put my young daughter through all that.
As I continued to research endometriosis on the web, I found two places that I personally place the most trust in. While there are many websites related to endo and I do not pass judgement on their validity or their views, I felt more comfortable with the Endometriosis Association founded by Mary Lou Balweg, an endo survivor, to try to educate and support other patients with endo. This organization provides support, educational materials, books, pamphlets, videos but more importantly, are involved in cutting edge research on endometriosis.
My second saving grace was an online support group called DaughtersWithEndo at Yahoogroups.com. Just reading the name alone gave me great comfort in my early days of reserach because I thought “I’m not alone”. There are other Moms or Dads trying to cope with the knowledge that their precious daughter has an incurrable disease. DaughtersWithEndo is a message board where parents can ask questions, share their personal stories, and lift others up when they are emotionally and phycially drained. What I found on those boards were real parents with real teenagers living with endo. Some of these parents have daughters who are doing amazingly well since their endo diagnosis. Some of them have daughters who seem not to respond to any treatment and whose quality of life is so difficult, it will bring tears to your eyes as you read and share their struggles.
For me, the greatest thing I have gotten through this board is validation for my red-flag decision not to use Lupron. While some of these young girls did find relief from Lupron, the parents have reported the same side effects mentioned above, as well as severe depression and memory loss. In many cases, these young girls became so depressed they were near suicidal. The depression led to additional medications such as Prozac and then it was like a never stopping merry-go-round. Each additional medication would lead to other problems and more medication. That certainly is not what we want for any of our daughters. The memory loss from Lupron has made school a major struggle for many of these girls who were once honor students. After Lupron, they can read assignments yet not be able to remember what they’ve read. What most of these parents have taught me, is that I should consider Lupron only as a last resort and that’s been my decision.
It’s now been almost two years since Angela was diagnosed with endo. Overall, she is doing remarkably well and I consider her to be one of the lucky ones because this disease may slow her down at times but it hasn’t completely changed her life. I credit this to our continual research about endo, our positive outlook in dealing with an incurrable disease, to her doctors, her school and our wonderful support network of friends and family. She remains on birth control pills to control the amount of estrogin in her system and we’ve found ways to help with pain. She will be starting her sophomore year of high school next month where she actively participates in the drama and musical clubs and sports. We don’t know what the future holds for her but we take each day one at a time. As a Mom, I worry somewhat about the future. I wonder if the endo will get worse, will it appear in more places, how will this affect her fertility down the road should she want children. I try not to borrow trouble from tomorrow because we’ve got enough to deal with today. We continue to educate people about endo, especially her teachers at school (with help from the nurses and guidance counselor).
Many people find it strange to hear me say, I’m glad Angela had an ovarian cyst two years ago. I say that because it led us to a definite diagnosis of endo within 3 months of the onset of her pain. Considering that it takes most women 6 to 7 YEARS on average to get an accurate diagnosis, I’m forever grateful to her pediatrician and her gynocologist.
© Bert Thomas