Endometriosis: a painful disease that kills dreams.
Emily Cottrell and her husband wanted to have a baby. "If I had sought treatment sooner and been diagnosed sooner, things could have been treated before they got so bad," she said.
Cottrell had a hysterectomy after unsuccessful in vitro fertilization. Her uterus was damaged from endometriosis. She suffered severe pain, nausea and headaches for years, beginning with her first period. But Cottrell, who cleans houses, at first thought it was normal.
"That's a really active job, and it would be really hard to go to work for six hours on my feet," she said.
Endometrial tissue outside the uterus causes the condition.
Dr. Jeff Arrington, OB-GYN, said usually a surgeon can remove it without a hysterectomy. He said many doctors tell patients it's the definitive treatment, but he says that's just not true. Arrington said early detection and removal can dramatically decrease the need for repetitive surgeries and infertility.
"The worst cases I see are in their late 20s and they've struggled for so many years and never really had the disease taken care of," Arrington said. "Now they're struggling with fertility concerns and needing to consider hysterectomy."
Rachel Budge's pain was so bad she took prescription pain killers on and off throughout the month when necessary, not just during her period.
"Trying to take care of a baby while your endo is flaring is the hardest thing I've done in my life," she said.
It made being a mother almost impossible.
"I remember crawling on the floor," she said, pushing back tears. "Just completely ignoring my needs to be able to care for my baby."
Doctors say endometriosis has been found in every area of the body except the spleen. Budge even had it on her heart. The disease doesn't show up on scans. It looks like little black dots or blisters on surgical photos.
"I've cut holes in bladders to take endometriosis out," Arrington said. "Just this week, we've had two patients where we've had to cut holes in the bowel to get endometriosis."
Arrington said many OB-GYNs don't have the training to remove endometriosis around the bowel and bladder. But leaving tissue inside the body means it will grow back. He recommends patients look for an excision specialist, who may have recurrent surgery rates below 20 percent.
Budge has had a total of six surgeries, including a hysterectomy to control irregular, heavy bleeding. Her pain is almost gone.
"I feel like I can really set goals again," Budge said. "I can dream again."
Cottrell, too, is enjoying life again.
Arrington said there is hope and treatment in even the most severe cases.
There is help if you or a loved one suffers from endometriosis. Please visit the national "killer cramps" campaign at endofound.org, and Endometropolis and Nancy's Nook on Facebook.
Emily Cottrell and her husband wanted to have a baby. "If I had sought treatment sooner and been diagnosed sooner, things could have been treated before they got so bad," she said.
Cottrell had a hysterectomy after unsuccessful in vitro fertilization. Her uterus was damaged from endometriosis. She suffered severe pain, nausea and headaches for years, beginning with her first period. But Cottrell, who cleans houses, at first thought it was normal.
"That's a really active job, and it would be really hard to go to work for six hours on my feet," she said.
Endometrial tissue outside the uterus causes the condition.
Dr. Jeff Arrington, OB-GYN, said usually a surgeon can remove it without a hysterectomy. He said many doctors tell patients it's the definitive treatment, but he says that's just not true. Arrington said early detection and removal can dramatically decrease the need for repetitive surgeries and infertility.
"The worst cases I see are in their late 20s and they've struggled for so many years and never really had the disease taken care of," Arrington said. "Now they're struggling with fertility concerns and needing to consider hysterectomy."
Rachel Budge's pain was so bad she took prescription pain killers on and off throughout the month when necessary, not just during her period.
"Trying to take care of a baby while your endo is flaring is the hardest thing I've done in my life," she said.
It made being a mother almost impossible.
"I remember crawling on the floor," she said, pushing back tears. "Just completely ignoring my needs to be able to care for my baby."
Doctors say endometriosis has been found in every area of the body except the spleen. Budge even had it on her heart. The disease doesn't show up on scans. It looks like little black dots or blisters on surgical photos.
"I've cut holes in bladders to take endometriosis out," Arrington said. "Just this week, we've had two patients where we've had to cut holes in the bowel to get endometriosis."
Arrington said many OB-GYNs don't have the training to remove endometriosis around the bowel and bladder. But leaving tissue inside the body means it will grow back. He recommends patients look for an excision specialist, who may have recurrent surgery rates below 20 percent.
Budge has had a total of six surgeries, including a hysterectomy to control irregular, heavy bleeding. Her pain is almost gone.
"I feel like I can really set goals again," Budge said. "I can dream again."
Cottrell, too, is enjoying life again.
Arrington said there is hope and treatment in even the most severe cases.
There is help if you or a loved one suffers from endometriosis. Please visit the national "killer cramps" campaign at endofound.org, and Endometropolis and Nancy's Nook on Facebook.
