it’s hard to describe to people what endometriosis feels like, and how severe it can be.
i know eventually i will have to have everything down there removed.
i am not able to conceive children. each day i am in pain and my parents are always telling me i complain too much and that it’s my fault because i don’t go to church with them. my dad ignores me because he feels too awkward talking to me about my female problems. my mom is tired of things being wrong with me and tells me she doesn’t want me around her anymore.
there are days where i can’t get up in the morning. i am fatigued for no reason. i have crippling pains when i am on my period, and sometimes i even pass out.
no matter how much i cry and do what my doctors tell me to do, it will not change my inevitable fate. i will die from this someday if i don’t have surgery, and i have come to terms with that. i am bleeding internally, even if it’s in small amounts, each month. cysts will eventually start to grow in my intestines.
it’s very scary, having endometriosis. it’s scarier when your own parents aren’t there to support you though.
you have friends who are willing to help and support you, but it’s the people you want there most that aren’t by your side.
the people who GAVE you this disorder, but washed their hands of you, because you are imperfect. the ones who abandoned you. the ones who are supposed to accept you and be there for you.
if you ask me, that hurts worse than any pain my endometriosis could possibly put me through.
phrases that I hear all the time, which drive me up the wall.
these are phrases that I hear all the time because of my illness, I don’t want to hear any of these, just because you don’t fucking get it!
1. It’s all in your head.
2. At least it’s not fatal.
3. You’re just using it as an excuse not to do this/that.
4. Mind over matter
5. Can’t you just take some medicine?
6. You’re too young to have all these problems.
7. If you just lost some weight you’d feel much better.
8. You don’t look like you’re sick or in pain.
9. It can’t be that bad.
10.You just need more rest.
11. I read about a new procedure that cures that
12. You just need to get out more
13. So and so has that and she can work, maybe you just need to push yourself.
14.Yeah I understand, I’m tired too.
15. Well over the counter stuff works for me.
blah blah blahhhhh!
Mhmm...
Been awhile, huh? A lot has happened, but lately all I can think about is the word Endometriosis. It’s fairly haunting right now. I’ve been sexually active for a tad bit over a year, but have never been able to enjoy sex as any other female would. I finally ventured in to see a doctor about the whole damn situation September 30th, and they’re saying it really does look like it might be the word I’m fearing.
I go back for a pelvic ultrasound the 27th, and then all the doctor-talking crap comes on the 30th. I really am concerned. I go through an unnecessary amount of pain and I’d love to have it fixed, but I’m not looking forward to having any type of surgery.
My beloved best friend tells me I’m strong enough to do this, though. I hope I am.
If I were to be completely honest...
I’d admit that I am absolutely terrified. It is very typical of me to over-think just about every situation, especially this one. I have a disease with no known cure, it could affect the rest of my life…or it could be managed with treatment and just another part of me…I don’t know…but its the not knowing that is killing me right now. I see my doctor again on Thursday, and he’ll explain everything in detail. Since day one he’s been extremely positive about my circumstance and promised to take care of me…he made a commitment to keep me safe, and I believe him…but right now my mind is going insane, and you know what? I don’t want to stop it..I want it to run its course. I want to be able to feel fear, because when I wake up in the morning and I feel at peace again, I’ll appreciate it one hundred times more.
But I don’t want to feel fear all the time. I don’t want to be in pain all the time.
I want to be healed.
“If [176] million men suffered unbearable pain with sex and exercise and were offered pregnancy, castration or hormones as treatment, endometriosis would be a national emergency to which we would transfer the defense budget to find a cure.”
—Nancy Petersen, RN, ERC Advisor, Internationally recognized advocate
Study Tests Potential New Drug to Reduce Pain and Symptoms of Endometriosis
health.ucsd.eduAccording to the Centers for Disease Control (CDC), endometriosis, a gynecological disorder in which cells from the uterus lining grow in other areas of the body, is the number one reason for a hysterectomy in women ages 18-35. Current treatment options for endometriosis are severely limited by side effects of existing medications and surgical options have more risks. A nationwide clinical trial is testing an investigational drug as a potential new option for patients with moderate to severe pain from this disease.
The Violet Petal Study, funded by Abbott and led at UC San Diego by Sanjay Agarwal, MD, FACOG, with the Department of Reproductive Medicine at UC San Diego School of Medicine, is currently recruiting patients to be part of the one to two year study to investigate the safety and effectiveness of the oral drug Elagolix. “Endometriosis can be an extremely painful disease, especially during a woman’s menstrual cycle. Many women find themselves debilitated during these bouts, and the disease can also cause pain during intercourse and increase infertility,” said Agarwal, director of UC San Diego Health System’s Center for Endometriosis Research and Treatment (CERT), a one of a kind, multidisciplinary program in Southern California for women suffering from endometriosis.
Common therapies include injections, which bring estrogen down to very low levels, resulting in side effects such as hot flashes, bone loss and mood swings.
“Many patients have to take a secondary medication to counteract the side effects from current treatment options,” said Agarwal. “The hope with Elagolix, taken daily, is to suppress estrogen just enough to take away the pain associated with endometriosis but without the harsh side effects to the body.”
About five to 10 percent of women of reproductive age have endometriosis. The growths caused by the disease can cause tissue implants on the ovaries, bowel, rectum, bladder, and on the lining of the pelvic area. There is no cure for endometriosis and women usually need to be on treatment until menopause.
As director of CERT, Agarwal brings together a broad team of clinical and scientific experts to work with endometriosis and look at different treatment options that will improve the quality of life for patients.
“The Violet Petal Study will hopefully lead to a gentler treatment option for women living with endometriosis and advance our knowledge of this chronic disease,” said Agarwal.
Eligible patients for the study must be between the ages of 18-49 and have been surgically diagnosed with endometriosis in the last seven years.
For more information on the violet petal study, please visit: https://www.violetpetalstudy.com/HomePage.aspx
For more information on CERT, please visit: http://cert.ucsd.edu
