Although I strongly object to the use of Lupron to treat Endometriosis, I wanted to share this news story anyway because I am happy to see Endo being talked about in the news. The more often it’s talked about, the better the eventual likelihood that people will acknowledge this illness and treat women who have it with more respect and compassion.
Endometriosis symptoms often ignored
Endo is in top causes of infertility in women
Updated: Thursday, 26 Mar 2009, 6:58 PM EDT
Published : Thursday, 26 Mar 2009, 4:08 PM EDTAlyssa Ivanson
FORT WAYNE, Ind. (WANE) – Anywhere from two to ten percent of reproductive age women have a condition called endometriosis, according to the National Institutes of Health.
The U.S. Department of Health and Human Services cites around 5 million women in the United States have endometriosis, also known as endo, making it one of the most common health problems for women.
Endometriosis is when menstrual tissue that’s supposed to be in the uterus gets inside the body cavity.
“It has its own period every month and that’s what causes pain because it shouldn’t be inside. It should be coming out,” Dr. Geoffrey Cly from Northeast OB/Gyn said. “The [endo] cells get into [the body tissue] and it swells and trys to have a period. It causes a blister inside on those surfaces.”
If left untreated, endo can cause infertility, and is a leading cause of women infertility. Many women live with symptoms for years before seeing a doctor, including me.
It wasn’t until I had a painful bump on my belly button for more than a year that I went to see a doctor about it. Dr. Cly thought it looked like endo had started growing in my belly button, but the only way to know for sure was to have surgery.
“You had endo up much higher than most endometriosis,” Dr. Cly said.
It didn’t take long in surgery for Dr. Cly to know I did in fact have endometriosis, and a biopsy of the cells confirmed it. I had endo growing on my abdominal wall and bowel. Luckily, I didn’t have any on my tubes or uterus, so I should be able to have a family one day.
“It was nice [that is showed up in your belly button] in a way because we were able to get in and get it early so there isn’t any major damage,” Dr. Cly said. “Without that sign, you may have not known for a while and there might have been damage on the tubes or overies.”
Now I am controlling my endo with hormone shots and birth control to keep it from growing back too quickly.
“The best thing now is to stay on top of it. Depo Lupron treats it and knocks it out, and then we’ll limit periods after the Lupron wears off,” Dr. Cly said.
My endo will grow back eventually. There is no cure. You can only try to control it. Dr. Cly said I should have children in the next few years… to that I say… “I’m getting married in October first! Then we’ll see.”
“Start thinking of moving in the direction of having a family sooner instead of waiting three to five years because that gives the endo more time to try to cause more problems,” Dr. Cly said.
I chose to share my story because when I was going through my diagnosis I found many women didn’t know what endometriosis was. It is a common women’s health issue and because it can lead to infertility if not treated early, I felt it was important to help educate men and women by talking about my experience.
Feel free to ask me questions. Send me an email or message me on Twitter!
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5 users responded in this post
hi im a long suffering woman who has endo. and i just wanted to thank you for putting the surgery u had out there it is important to us woman who suffer severely with the disease i just wish that it was more talked about we see commercials all on the tv for like cancer and other similar diseases i say similar because endo. from researching this disease and having been diagnosed with it since i was 13/14 had my first surgery at15yrs old and my second surgery at 18/19yrs old..but i meant to say is that endo. likes to ”mimic” other diseases and it is a true fact that when woman are diagnosed with a autoimmunilogical disease then there is a statistic not shure of the top of my head..but that a fact that a woman is mostlikely to have another disease/disorder in her body i myself am trying to find out if i have one of the other linked diseases..they are known as…..ruematord arthritis,fibromalaygia,lupus,and allergies,and others but ive been having more issues with my endo and ive been on pretty much every birth control out there and guess what they all stink..lol especially the lupron now in ure video u said that u i think were going to or considering the lupron …please listen to me and take my opinion as a genuine concern not just for u but also for other woman..i did use lupron after my second surgery and it seemed to help ok but this is what i recently discovered in researching my disease about lupron and this is a true story u should also pick up theses books..i’ll tell you when im finished ….i read in a book about a woman who was questioning the ”minor side-effects” of the treatment of lupron ..and may i also mention also that lupron wil stay in ure body an additional either 6months or a year i think depending on the treatment…..but getting back to what i found in the book is the woman wanted to see and she asked her doctor about her bone density..now her doctor said that she doesnt need to be so worried about but this is what he discovered after she requested a bone density scan….her doctor was shocked and he said that if he knew then what he new after the test he would of never recomended the treatments of lupron…her tests of her bone scan came back as the bone density of a 65yr old woman and her age at the time was ONLY 29YRS OLD!!!!! so i am a alot more interested in my health now more than ever i have alot of pain and im still looking for relief and i wish people would take this disease more seriously and not just say ”tough it up” or stop complaining”its normal to endure menstrual pain” IT IS NOT NORMAL!!! my favorite response that i even got from a specialist of reproductive fertility and disorders…..”maybe u need to see a pyschologist/therapist” meaning ”ITS IN YOUR HEAD”….this is sad to me and now im a 25yr old who is still suffering and at this point longing for some pain relief and who ever says that lupron/hormonal therapies r what RELIEVES THE PAIN WELL THEY R PROBABLY RIGHT ABOUT THE ESTROGEN PART BUT THE PAIN RELIEF IS WRONG!!!! I ALSO DISCOVERED THAT IN ONE OF THE BOOKS IS THIS THAT ….research is discovering that there is endo. that is also microscopic tissues and is blind even too the naked eye so when having however many surgeries or by even getting a hystorectamy it still can be present and also ..aside from that i would like this to be noted that just because there is howevermuch endo found it doesnt mean that we should be discriminated to the pain cause a woman who has just very ”little endo” can be in a whole lot more severe pain than a woman who is classified as stage 5 4 3 2 or 1..it is important that people start recognizing this disease as severe as or just as important than arthritis so any way these are the names of the books …
”Living well with Endometriosis..What your Doctor Doesnt Tell you… That You Need To Know”-By author Kerry-Anne Morris *She is Founder of the UNVEILING ENDOMETRIOSIS PROJECT
”Endometriosis for Dummies”-By DR.Joseph W. Krotec *Who did my last endo surgery!! he is a blessing to me in my life and i wish him the very best..he was the only the only one who truely cared for my endo.. !! -& Author Sharon Perkins,RN
”Endometriosis the complete Reference For Taking Charge of Your Health”-By Author Mary Lou Ballweg & the endometriosis association.. **this is the book i found the story of the lupron inccident**
..i hope that u can read this and mabey contact me and maybey help people like me who are still suffering every day from this horrible-painful disease.
-Diana-
Oh wow. Yeah, Lupron is bad, bad stuff. I hope you got off of it! But at the same time, I hope you were able to find relief in another, healthier form. Thanks so much for telling your story. I’m sorry it took so long to get your comment approved – I’ve not had time to maintain my website in over a month and I’m just getting back to it, now.
[...] Endometriosis symptoms often ignored [...]
Your story was very supportive and educational. For the past five years, I suffered from lower abdominal pain, extreme exhaustion, and menstrual bleeding. Through ultrasound, uterine fibroids were discovered but past doctors only recommended a “watchful eye.” While my symptons progressed, my intuition told me it was time to find a new doctor who was serious about finding a solution to my chronic condition. The grace of God led me to Dr. Geoffrey Cly who found a fibroid the size of a baby’s head in my uterus! He saved my life and confirmed that women don’t have to live with reoccuring pain, staying with doctors who use the “watch & see” method. And educational stories like this bring to light the importance of women taking control of their health options to find the best solutions.
Hi Jessica,
The story was actually that of Alyssa Ivanson who is a reporter in Fort Wayne, Indiana.
http://www.wane.com/dpp/about_us/personalities/Alyssa_Ivanson_415577
I’m sure she’d love to read this from you directly! Her email is: alyssa.ivanson@wane.com