Source: .houstonchronicle.com<\/p>\n\n\n\n
Doctors told Alison Landolt that getting pregnant might solve her endometriosis. Or maybe menopause would solve it. Or even a hysterectomy.<\/p>\n\n\n\n
They prescribed her continuous birth control. But when that stopped working, they shot her up with\u00a0Depo-Provera, the brand name for depot medroxyprogesterone acetate, a hormonal medication that contains progestin and is supposed to prevent ovulation.<\/p>\n\n\n\n
When that didn\u2019t stop the unbearable pain she felt in her pelvic region, doctors recommended she go on\u00a0Lupron, a hormone suppressant that stimulates estrogen production but can cause brittle bones and osteoporosis. Landolt said no, but she was growing increasingly desperate.<\/p>\n\n\n\n
\u201cOne day, I woke up, and I was not functional anymore. I had to leave my career behind and move back home and live with my parents because I was so debilitated,\u201d Landolt, a former psychotherapist, said. \u201cThere were days I couldn\u2019t get out of bed. I would be out grocery shopping and stop in the middle of the store, doubled over in pain. I had no energy to function because this is a battle that really takes a toll on you.\u201d<\/p>\n\n\n\n
Though the definition is debated by medical professionals and patients who suffer from it, endometriosis is a disorder in which tissue that would normally line the uterus grows outside it. The tissue can be found on the ovaries, fallopian tubes or the intestines, according to the Mayo Clinic.<\/p>\n\n\n\n
Landolt said this definition is incorrect and defines endometriosis as “similar to the lining of the uterus, but distinctly different tissue.” She is not a medical doctor, but the foundation routinely consults a network of doctors and experts.<\/p>\n\n\n\n
“The distinction has significant implications for treatment. The disease can be found anywhere in the body, not just in the pelvis,” Landolt said in an email.<\/p>\n\n\n\n
Endometriosis has no visible symptoms \u2014 just an unbearable pain that is usually diagnosed as \u201cjust a bad period.\u201d<\/p>\n\n\n\n
\u201cA lot of us get called lazy because it\u2019s an invisible disease, but it causes chronic fatigue. It interferes with our lives in every capacity from sex and intimacy to jobs and our social lives,\u201d Landolt said. \u201cPeople aren\u2019t OK with talking about it, which contributes to the isolation. When you feel as bad as you do, that also contributes to the isolation.\u201d<\/p>\n\n\n\n
Earlier this year, Landolt\u2019s organization,\u00a0Endometriosis Foundation of Houston, received 501(c)(3) nonprofit status. Its mission is to raise awareness of the disease in Greater Houston and dispel the myths, rumors and mysteries that surround it.<\/p>\n\n\n\n
\u201cWhat we really need to improve is informed consent. Women need to know what their options are, what the disease is, what you can do about it and what is likely to help,\u201d she said. \u201cAll of the (foundation\u2019s) knowledge comes based on our interactions with experts and doctors in the community.\u201d<\/p>\n\n\n\n
Endometriosis occurs in 6 to 10 percent of women of reproduction age, said\u00a0Dr. Yesenia Blancas, an OB-GYN affiliated with\u00a0Memorial Hermann Memorial City Medical Center. It affects 38 percent of women who are unable to have children and 71-87 percent of women who have pelvic pain.<\/p>\n\n\n\n
Blancas, an assistant professor at McGovern Medical School at UT Health, said it\u2019s a difficult disease to diagnose because of its range of symptoms and organs that can be affected.<\/p>\n\n\n\n
\u201cSome women may consider it normal to have pelvic pain and will not see their doctor in regard to this until symptoms become severe,\u201d Blancas said via email. \u201cThere are several other conditions that may present with similar symptoms \u2026\u201d<\/p>\n\n\n\n
Endometriosis could be misdiagnosed as pelvic inflammatory disease, irritable bowel syndrome, painful bladder syndrome or ovarian cysts. \u201cEven when there is a high suspicion for endometriosis, it is not a confirmed diagnosis until tissue is obtained confirming it, and that requires surgery,\u201d Blancas said.<\/p>\n\n\n\n
There\u2019s no cure for the disorder \u2014 yet. However, there are a number of hormone treatments, two types of surgeries and possible changes in diet that could help those who suffer from it. For many women, hormone suppressants and pain medication are temporary fixes to a lifelong problem.<\/p>\n\n\n\n
Two surgeries associated with the treatment of endometriosis are ablation and excision. Both procedures are typically put off until all medicinal possibilities have been exhausted.<\/p>\n\n\n\n
Endometrial ablation surgically destroys the lining of the uterus (endometrium), usually by burning it, according to the Mayo Clinic. The goal of the surgery is to reduce menstrual blood flow. The Center for Endometriosis Care\u00a0details\u00a0laparoscopic excision as a procedure to cut out diseased tissue from all affected areas without damaging surrounding structures.<\/p>\n\n\n\n
Excision can be challenging for surgeons because lesions can be found near major blood vessels, ureters, the bladder and bowel, Blancas said.<\/p>\n\n\n\n
\u201cWomen with endometriosis who require surgery often need repeat surgery 20 to 50 percent of the time,\u201d Blancas said. \u201cUsing excisional or ablative procedure does not permanently remove endometriosis, and thus it is important that medications are used after such procedures in order to help prevent further development of endometriosis.\u201d<\/p>\n\n\n\n
Landolt, who has undergone excision surgery, said permanent removal of endometriosis lesions is possible if the excision is performed by an expert.<\/p>\n\n\n\n
Samantha Bowick, author of \u201cLiving With Endometriosis: The Complete Guide to Risk Factors, Symptoms, and Treatment Options,\u201d underwent six surgeries before she turned 28.<\/p>\n\n\n\n
Her first was an ablation when she was in her early 20s; she then underwent a complete hysterectomy (removal of uterus, ovaries and cervix) by age 23. She has also had her appendix and gallbladder removed.<\/p>\n\n\n\n
It wasn\u2019t until her fifth surgery that she saw an excision specialist, Dr. Ken Sinervo. He is the medical director for the Center for Endometriosis Care. She said she has finally experienced a life with no pain since the surgery.<\/p>\n\n\n\n
Bowick wrote the book to help girls and women like herself who enter a void of misinformation and mystery when they get their diagnosis. She had trouble finding a publisher, she said, because endometriosis \u201cis a women\u2019s disease, and people don\u2019t want to talk about it for that reason.\u201d<\/p>\n\n\n\n
\u201cI definitely want people to know they\u2019re not alone, even though it feels like they\u2019re alone,\u201d Bowick said. \u201cMaybe you don\u2019t know people personally that have endo, but there are people out there. Finding support has been essential to me in getting information about different treatments available to make informed decisions on treatments.\u201d<\/p>\n\n\n\n
Knowing when pain isn\u2019t normal is key when deciding to go to a doctor, Blancas said.<\/p>\n\n\n\n
\u201cI would encourage women to be their own advocate. Don\u2019t write off pain as \u2018normal,\u2019 and do your best to keep track of the details surrounding the pain and your period and come prepared with that information to your visit with your physician,\u201d she said. \u201cBy providing that information to your physician, they can better understand if your symptoms align with endometriosis or another condition. Treatments vary, so if one type of treatment isn\u2019t working, talk to your doctor about other options.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"
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