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(Due to this being a very emotional subject for me that I do not really like to talk about my mum helped me in the writing of this description.)
The Best Chance for a Cure for Jez
I am starting this page to help my daughter finally get the hysterectomy she needs to end 20 years of intense suffering. She has endometriosis. Her case would be on the more serious side of the scale. Endometriosis is the abnormal growth of cells (endometrial cells) similar to those that form the inside of the uterus, but in a location outside of the uterus which can result in pain, internal bleeding, cysts, and other physical problems. She has exhausted other treatments for dealing with this painful disease over the past two decades. This operation is a removal of the uterus, fallopian tubes, and potentially both ovaries (a hysterectomy) gives her the best chance for a cure.
Jez's story
Jezebel Voule is probably best known as the happy go lucky, piercer and burlesque fire eater who grew up wearing ball gowns and combat boots, wedding gowns and black lipstick. Jezebel the champion for causes and volunteer at different events. The pale young lady with the dark piercing eyes and infectious smile. Few would guess how much she has suffered daily in the past 20 years.
It has been our experience that it is easy to discount the suffering of women and postpone helping them because there is still a train of thought that women must have children to be whole. The commonly found materials on endometriosis seem to downplay the level of pain and discomfort I witnessed with my own eyes. The word “Pain” hides so much. It could be brought on by a touch of indigestion from a bad piece of food, or it can be gut wrenching pain like a scene out of “Aliens” where it feels like something is ripping its way out of your body. The second version is closer to the level of pain I have watched my daughter suffer through as a tween on into adulthood.
At 11 years old she was riding home on the bus in Kingman, Arizona when she was gripped by extremely bad abdominal pain, so bad she had an embarrassing accident. Not wanting to draw attention to herself at the new school she suffered in silence until she got off the bus and made it into the house. This would be the start of a painful way of life for her and for all of us. She started to have uncontrollable projectile vomiting, diarrhea sometimes simultaneously with no warning. She would turn a shade of green in school and there were meetings with the staff to try and help her. It was first diagnosed as Adolescent Migraines, and she was given heart medicine, then possible emotional issues so we saw counselors, then hormones to stop bleeding and more because they didn't work. We were even attacked as a family, as individuals because we wanted answers and they didn't have them. Doctors, counselors, educators were at odds as to what was causing it. As time went by they actually wondered if I was poisoning her to get attention. It was suggested that if she wore brighter colors she might feel better. She was even asked by one clueless doctor if her sister and she were sharing boyfriends when neither of them had even started dating. All the while her situation got worse.
She started to choose her foods based on what they would be like on the way up. She started to have an almost continual time of the month which really affected her stamina. On non-school days she would sleep, get up, eat, barf or have the runs and fall back to sleep. She would pass out at school. On school days it was not uncommon for her to last about an hour before I got a call to come get her because she was too sick. Unable to get help from the ISD I put her in an alternative school. I went to visit one day only to find her in the doorway passed out and other children just walking over her. They had gotten so use to her fainting it was business as usual. We spent more time at the doctors than we did at the dinner table each week. They shot her full of hormones, so many birth controls at the same time that it leached her bones of calcium leading to Osteopenia in her spine and Osteoporosis in her hip and it didn't stop the bleeding. She had mood swings as her body tried to deal with all the hormones being pumped into her as well as the hormones of a teenage girl yet there was little relief.
We did Acupuncture, visualization, chiropractic, supplements, prayer, diet and anything I could find as well as mainstream medicine. Depression became and issue, depression was the healthiest feeling she could feel. Feeling good about it would definitely given me pause for concern. How would you like to be 15 years old and be with your friends and lose the contents of our bowels as you crossed a city street and having to come up with excuses to justify an immediate evacuation from any social situation with what grace and dignity you can muster while stewing in your own excrement?
Well meaning but backward doctors kept testing her for drugs and pregnancy with negative results over and over again despite our protests. Because of her ill health I allowed her to dress in the costumes from a theater I had been given. I felt like dressing up was about all she could do to put a little enjoyment in her life. It was something for which she would be known around the places we lived and dress design and costuming would become some things she enjoyed.
By the time she was 16 I thought she was going to die. I'm not being dramatic. She couldn't keep food down, couldn't stop bleeding, they thought she had the bleeding disorder, Von Willebrand's disease and put her on drugs and vitamins for that. She was being cut, and poked and prodded and berated by people who didn't understand what she was going through. I finally called her dad and said I was taking her to the Mayo Clinic in Minnesota.
It was an expensive trip and we were there 7 days. On the final day they found Endometriosis. It had been attached to her intestines and it was causing the abdominal pain and the contractions were causing the vomiting and other issues. We both broke down crying as we had suggested that months ago to deaf ears. It had been a long journey wrought with abuse from the people we turned to for help.
Return to a life of pain:
They did a laparoscopy and we drove home, her in postoperative pain, feeling every bump in the road. For 2 weeks she was a new kid, full of life, having fun and then...it came back. It wasn't quite as bad. She could now eat and keep food down most of the time. However, the pain was still intense and interfered with her social and work activities. Over the past few years she has been seeking help with no lasting results. For many years she was living life at a chronic pain level of 9 out of 10. After a while she learned that pain was just her fact of life and had to more or less “walk it off” and adjust her experience of pain accordingly. Otherwise life would just continue passing her by. For 21 years she has consistently been reenacting the elevator scene from “The Shining” with irregular periods. Having emotional issues with both friendships and intimate relationships because she feels like she is walking around with the scarlet letters of SICK and how could anyone want to get close to that? She thought. At age 32 she is still rocking her adjusted pain tolerance level averaging about a 4 or 5, This doesn’t represent a lessening of pain rather an increased tolerance to the pain. She does not face this option lightly. It was far from our first choice. It isn't just cramping or something to be solved with a supplement and a cold compress and that is why she needs our help.
She has had fibroid fulgation and another laparoscopy, depo lupron, birth controls, and other medicine have been attempted with little to no improvement. These treatments may help relieve symptoms for years. But in her case the treatments only gave a few days of relief if any. She suffers all in the name of the hope of fertility, a hope she gave up on long ago.
The doctor said she may be able to return to work after two weeks. However the internet suggests about 4 weeks of recovery so she has split the difference and will be missing out on 3 weeks of work. Her last surgery had quoted her 4 days of recovery and 4000 dollars, however a week and a half later she was going to work a bit prematurely as to what her body was telling her to do and 7000 dollar was taken out of her pocket for the insurance despite her having insurance. So this surgery she is freaking out about the financial cost, hence the GoFundMe. She has been trying to get a general price for her upcoming surgery with her insurance and has not yet got a solid price. The average cost tends to be 11,739 so her goal is 12,000. I’m taking off to take care of her, however, she will still need to meet day to day care as well as the cost of surgery. Her doctor is going to try to keep one of her ovaries in tact so that she can go through a natural menopause. One ovary needs to go because her last surgery had shown that the ovary was glued to the uterus with endometriosis. If both ovaries look bad then he will remove it all and she will have some hormone replacement therapy. If he sees any endometriosis then he will remove that with yet another laparoscopy so that hopefully none of it will be left behind. There is a chance that getting a hysterectomy will not make the endometriosis go away forever because if only tiny fleck remains of the endometriosis on a different part of my body (such as her bowels) it will spread like a wildfire. She will at least get the hive out and thus it should become much more manageable. If nothing else she will no longer be spending most of my life having her period which has been a constant reenactment of “The Shining” elevator scene which alone will greatly improve her life. We hope that this will be the closing of one door and the opening to another brighter future.
How We Can Help:
Finally she has found a doctor willing to give her a hysterectomy. There is a great potential that it could end this cycle of suffering. It is for this reason I hope you will donate, share, like, whatever you have to, to help her get some relief. She will be having this operation in mid September and needs help with the costs of the operation as well as, at her request, getting me to the area to help take care of her the first few days post operation. In the chance that the goal exceeds the cost of the surgery then the remainder money will go to potential hormone replacement therapy as well as to the inevitable increase in her insurance. I thank you for taking the time to consider helping me by sharing and/or donating. The fact that you have given me the opportunity to ask you for help means so very much to me. Words cannot express the gratitude I feel for you sharing your time with me.
The Best Chance for a Cure for Jez
I am starting this page to help my daughter finally get the hysterectomy she needs to end 20 years of intense suffering. She has endometriosis. Her case would be on the more serious side of the scale. Endometriosis is the abnormal growth of cells (endometrial cells) similar to those that form the inside of the uterus, but in a location outside of the uterus which can result in pain, internal bleeding, cysts, and other physical problems. She has exhausted other treatments for dealing with this painful disease over the past two decades. This operation is a removal of the uterus, fallopian tubes, and potentially both ovaries (a hysterectomy) gives her the best chance for a cure.
Jez's story
Jezebel Voule is probably best known as the happy go lucky, piercer and burlesque fire eater who grew up wearing ball gowns and combat boots, wedding gowns and black lipstick. Jezebel the champion for causes and volunteer at different events. The pale young lady with the dark piercing eyes and infectious smile. Few would guess how much she has suffered daily in the past 20 years.
It has been our experience that it is easy to discount the suffering of women and postpone helping them because there is still a train of thought that women must have children to be whole. The commonly found materials on endometriosis seem to downplay the level of pain and discomfort I witnessed with my own eyes. The word “Pain” hides so much. It could be brought on by a touch of indigestion from a bad piece of food, or it can be gut wrenching pain like a scene out of “Aliens” where it feels like something is ripping its way out of your body. The second version is closer to the level of pain I have watched my daughter suffer through as a tween on into adulthood.
At 11 years old she was riding home on the bus in Kingman, Arizona when she was gripped by extremely bad abdominal pain, so bad she had an embarrassing accident. Not wanting to draw attention to herself at the new school she suffered in silence until she got off the bus and made it into the house. This would be the start of a painful way of life for her and for all of us. She started to have uncontrollable projectile vomiting, diarrhea sometimes simultaneously with no warning. She would turn a shade of green in school and there were meetings with the staff to try and help her. It was first diagnosed as Adolescent Migraines, and she was given heart medicine, then possible emotional issues so we saw counselors, then hormones to stop bleeding and more because they didn't work. We were even attacked as a family, as individuals because we wanted answers and they didn't have them. Doctors, counselors, educators were at odds as to what was causing it. As time went by they actually wondered if I was poisoning her to get attention. It was suggested that if she wore brighter colors she might feel better. She was even asked by one clueless doctor if her sister and she were sharing boyfriends when neither of them had even started dating. All the while her situation got worse.
She started to choose her foods based on what they would be like on the way up. She started to have an almost continual time of the month which really affected her stamina. On non-school days she would sleep, get up, eat, barf or have the runs and fall back to sleep. She would pass out at school. On school days it was not uncommon for her to last about an hour before I got a call to come get her because she was too sick. Unable to get help from the ISD I put her in an alternative school. I went to visit one day only to find her in the doorway passed out and other children just walking over her. They had gotten so use to her fainting it was business as usual. We spent more time at the doctors than we did at the dinner table each week. They shot her full of hormones, so many birth controls at the same time that it leached her bones of calcium leading to Osteopenia in her spine and Osteoporosis in her hip and it didn't stop the bleeding. She had mood swings as her body tried to deal with all the hormones being pumped into her as well as the hormones of a teenage girl yet there was little relief.
We did Acupuncture, visualization, chiropractic, supplements, prayer, diet and anything I could find as well as mainstream medicine. Depression became and issue, depression was the healthiest feeling she could feel. Feeling good about it would definitely given me pause for concern. How would you like to be 15 years old and be with your friends and lose the contents of our bowels as you crossed a city street and having to come up with excuses to justify an immediate evacuation from any social situation with what grace and dignity you can muster while stewing in your own excrement?
Well meaning but backward doctors kept testing her for drugs and pregnancy with negative results over and over again despite our protests. Because of her ill health I allowed her to dress in the costumes from a theater I had been given. I felt like dressing up was about all she could do to put a little enjoyment in her life. It was something for which she would be known around the places we lived and dress design and costuming would become some things she enjoyed.
By the time she was 16 I thought she was going to die. I'm not being dramatic. She couldn't keep food down, couldn't stop bleeding, they thought she had the bleeding disorder, Von Willebrand's disease and put her on drugs and vitamins for that. She was being cut, and poked and prodded and berated by people who didn't understand what she was going through. I finally called her dad and said I was taking her to the Mayo Clinic in Minnesota.
It was an expensive trip and we were there 7 days. On the final day they found Endometriosis. It had been attached to her intestines and it was causing the abdominal pain and the contractions were causing the vomiting and other issues. We both broke down crying as we had suggested that months ago to deaf ears. It had been a long journey wrought with abuse from the people we turned to for help.
Return to a life of pain:
They did a laparoscopy and we drove home, her in postoperative pain, feeling every bump in the road. For 2 weeks she was a new kid, full of life, having fun and then...it came back. It wasn't quite as bad. She could now eat and keep food down most of the time. However, the pain was still intense and interfered with her social and work activities. Over the past few years she has been seeking help with no lasting results. For many years she was living life at a chronic pain level of 9 out of 10. After a while she learned that pain was just her fact of life and had to more or less “walk it off” and adjust her experience of pain accordingly. Otherwise life would just continue passing her by. For 21 years she has consistently been reenacting the elevator scene from “The Shining” with irregular periods. Having emotional issues with both friendships and intimate relationships because she feels like she is walking around with the scarlet letters of SICK and how could anyone want to get close to that? She thought. At age 32 she is still rocking her adjusted pain tolerance level averaging about a 4 or 5, This doesn’t represent a lessening of pain rather an increased tolerance to the pain. She does not face this option lightly. It was far from our first choice. It isn't just cramping or something to be solved with a supplement and a cold compress and that is why she needs our help.
She has had fibroid fulgation and another laparoscopy, depo lupron, birth controls, and other medicine have been attempted with little to no improvement. These treatments may help relieve symptoms for years. But in her case the treatments only gave a few days of relief if any. She suffers all in the name of the hope of fertility, a hope she gave up on long ago.
The doctor said she may be able to return to work after two weeks. However the internet suggests about 4 weeks of recovery so she has split the difference and will be missing out on 3 weeks of work. Her last surgery had quoted her 4 days of recovery and 4000 dollars, however a week and a half later she was going to work a bit prematurely as to what her body was telling her to do and 7000 dollar was taken out of her pocket for the insurance despite her having insurance. So this surgery she is freaking out about the financial cost, hence the GoFundMe. She has been trying to get a general price for her upcoming surgery with her insurance and has not yet got a solid price. The average cost tends to be 11,739 so her goal is 12,000. I’m taking off to take care of her, however, she will still need to meet day to day care as well as the cost of surgery. Her doctor is going to try to keep one of her ovaries in tact so that she can go through a natural menopause. One ovary needs to go because her last surgery had shown that the ovary was glued to the uterus with endometriosis. If both ovaries look bad then he will remove it all and she will have some hormone replacement therapy. If he sees any endometriosis then he will remove that with yet another laparoscopy so that hopefully none of it will be left behind. There is a chance that getting a hysterectomy will not make the endometriosis go away forever because if only tiny fleck remains of the endometriosis on a different part of my body (such as her bowels) it will spread like a wildfire. She will at least get the hive out and thus it should become much more manageable. If nothing else she will no longer be spending most of my life having her period which has been a constant reenactment of “The Shining” elevator scene which alone will greatly improve her life. We hope that this will be the closing of one door and the opening to another brighter future.
How We Can Help:
Finally she has found a doctor willing to give her a hysterectomy. There is a great potential that it could end this cycle of suffering. It is for this reason I hope you will donate, share, like, whatever you have to, to help her get some relief. She will be having this operation in mid September and needs help with the costs of the operation as well as, at her request, getting me to the area to help take care of her the first few days post operation. In the chance that the goal exceeds the cost of the surgery then the remainder money will go to potential hormone replacement therapy as well as to the inevitable increase in her insurance. I thank you for taking the time to consider helping me by sharing and/or donating. The fact that you have given me the opportunity to ask you for help means so very much to me. Words cannot express the gratitude I feel for you sharing your time with me.