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Gender Discrimination
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I suffer with Endometriosis and it causes chronic pain and fatigue that affects my life every single day. Even when I’m not currently on my cycle, my endo still causes debilitating pain that affects my work life and home life. I have to have pain medication on me at all times due to this disease. I have had to cancel plans and call into work or be sent home due to the pain this disease causes me.
Randee supported: National Class Action Endometriosis Reform Investigation PetitionI also suffer from endometriosis and now Adenomyosis. If my pain persists, my specialist has mentioned a hysterectomy next. We need more than just removing organs and surgeries, that can also create more scar tissue and more pain.
Tori supported: National Class Action Endometriosis Reform Investigation PetitionPlease read,
I am in desperation for my fellow survivors of this horrible disease voices to be heard!
Read the medical literature surrounding this disease as I have since the age of 13, searching for an answer, searching for relief as the onset of this disease has found me on bathroom floors, and hospital beds in a fetal position with to much pain to stretch my body into an upright position.
Current medical intervention is barbaric. Medical literature uses words as : “ cancer like lesions”, “ruptured cysts”, “ablation and excision surgery” “hysterectomy “ “shorter life expectancy”, only to be dismissed and ignored by medical doctors and experts for over half of my life.
I am 31 years old and have had to find alternative medical care that i’ve researched and pay out of pocket to get symptom relief and even then my endometriosis progresses. I am usually a very active person, until i’m so sick I cannot stand, eat, drink, pee or use the bathroom because I am so imfalmmed.
and I am an active member of society
This impacts my ability to work
This impacts my ability to get pregnant for 7 years of ttc.
This impacts my trust in medical professionals as I have not yet been helped! after countless doctors visits.
This impacts my quality of life and my relationships with others.
Please help us.
Alicia supported: National Class Action Endometriosis Reform Investigation PetitionI have had first hand experience with treatment - or lack of - with endometriosis and adenomyosis care. This isn't a pain that you can visibly see, but we feel every ounce of it. I've begged for relief, and was told "take ibprophen, I can't help you otherwise" and "oh, come on. The pain isn't that bad." by the same women entrusted in my gynecological care. Doctors have even lied documenting my medical chart that I have not expressed any pain whatsoever. Lie! The only way I can get any pain medication is by going to the emergency department, which is unfair to use those resources and unfair to us because now we have thousands in medical bills just because that's the only way to get relief during a flare up. The pain is crippling. Exhausting. But because you cannot see a physical wound, so we must be making it up, right? Because we are just drug seeking, right? NO! We are seeking compassionate care with some semblance of understanding that our pain is valid and very real! We are seeking RELIEF from the constant pain. Yet, as women, we are told to just suck it up. Which for the most part, we have no choice but to do so.
I implore you to sign this and let's make this awful disease affecting hundreds of thousands of women become better care and taken more seriously!
Nichole supported: National Class Action Endometriosis Reform Investigation PetitionI went to 4 doctors looking for answers as to why I couldn't conceive. The answer I received from each of them was "I don't know." I went to an accupuncturist, described my symptoms and she suspected endometriosis. With endometriosis being a leading cause of infertility it's shocking the thought of endometriosis never was mentioned by one of those 4 doctors. From there I went to a reproductive endocrinologist and told her I suspected I had endometriosis and I speculated that was why I couldn't conceive. She gaslit me into thinking I didn't have endometriosis because she said I should have pain all the time (not just my with my periods) and I should have abdominal pain (not just back pain). She thought even if I had it fertility treatments would work. 1 IUI led to 2, 3 and 4 and I still wasn't pregnant. I paused treatment and brought up surgery because I wanted to address the root cause of my infertility. Again I was dismissed and was told "well it's surgery, you could have some pretty bad side effects and a long recovery time." The reproductive endocrinologist eventually scheduled surgery after I pushed time and time again for it. I later learned they were going to perform ablation surgery and I was appalled that they would prescribe a surgery that could do more harm than good. I canceled that surgery and got on the waiting list to see an excision specialist. Stage 2 endometriosis was found in 6 different places with a deeply infiltrated spot near the bowels. I was also told I had a bulky uterus and a small spot of adenomyosis on the posterior wall that shouldn't affect my ability to conceive. After surgery I tried to conceive without medical intervention with no luck and did my 5th and 6th IUI fertility treatment with no luck. Finally decided to pursue IVF and pushed the reproductive endocrinologist to consider a treatment plan that would take into account endometriosis and adenomyosis. I knew adenomyosis could affect implantation chances and I didn't want to go through the expense and heartbreak of failed IVF transfers so I asked to conduct 2 months of downregulation with lupron depot prior to my transfer and it worked and I'm currently 25 weeks pregnant! All in all it took me 5 years of spinning in circles, going to different providers having no answers. The most frustrating part is that I had to do my own research, be my own advocate, and forge ahead because I never truly found a doctor that seemed to fully understand this disease, that stopped to understand what was going on with my body, and that worked to prescribe a treatment plan that was suited for me unless I asked and begged for it.
Ellen supported: National Class Action Endometriosis Reform Investigation PetitionIt took me 8 years to get a diagnosis. I had previously been seen by 15 specialists, and 5 gynecologists. I knew I had Endo all along, I just needed someone to believe me.
And that is only the beginning. Getting a diagnosis, does not equal getting treatment, or relief of pain.
My journey is only just beginning, I have daily pain. I am in weekly PT, I have to pay out of pocket to work with a Naturopathic Doctor for supplemental support, as well as paying out of pocket for massage therapy for techniques that will reduce inflammation.
It doesn't end with Endo. There are many known correlated diseases as well. So additionally I have to work to navigate SIBO and Elhers Danlos Syndrome.
Endo is not a gynecological disease, it's a full body disease that deserves more attention, research, and support than what it's getting. Women are suffering at an alarming rate, 1 in 10! The physical, mental, and emotional toll this disease causes diminishes our quality of life. We desperately need help and fast. Women's lives are at risk.
Lauren supported: National Class Action Endometriosis Reform Investigation PetitionThere is little research and much less support for ladies suffering from this debilitating disease. It shatters hopes of a family. The endless pain and suffering while practitioners look upon you as a drug seeker. There is no seeking of drugs but a cry for help and suitable treatment options. After all they can’t see the pain so it must not be real, “take some Ibuprofen!”
When you awaken in the morning to feel like someone set fire to your organs, or you stand up and feel as though your organs could possibly just fall out of you.
The emotional toll it takes on relationships, the percentage of marriages that lead to divorce due to this condition. Ability to work a full-time job. The constant judgement you get from your employer and co-workers because you have to miss work because of the persistent pain and flare-ups.
Jane supported: National Class Action Endometriosis Reform Investigation PetitionHi, I'm a 24 year old woman and I had Endometriosis diagnosed last month through diagnostic laparoscopy surgery, but I've had problems for 10 years+. Some of my Endo friends and I suspected I had Endometriosis since 2021.
I'm considered by some to be lucky to have my diagnosis sooner than most people, but I still had to push and advocate for myself very strongly with going to hundreds of appointments (including in person appointments, over the phone appointments, and video call appointments), MRI's, ultrasounds, CT scans for 3 years and they still didn't "find" anything until my surgery. So they found a lot of Endometriosis in my pelvic region and I am looking also into Thoracic Endometriosis in addition as it's a whole body inflammatory disease.
Back in 2019, I got diagnosed with Chronic Migraines with Aura. Tried 5 different treatments (meds) for my migraines including Botox injections (an extremely painful process) every 3 months for 2 years which didn't do anything to help me or bring any sort of relief. I believe Endo is causing my migraines. Endometriosis has been found in the brain.
A common misconception about Endometriosis is that people think it's only a "period"/ only reproductive disease, but it is a whole body inflammatory disease that can't be cured with a hysterectomy.
On the other hand, Endometriosis's evil twin, Adenomyosis can be cured through hysterectomy since it's a completely separate condition, however, it's been confirmed that both have occured in the same person(s), but not always. It can bring some relief to people that have both conditions. Hysterectomy will not cure or treat Endometriosis completely, but only take away the affected uterus. There is still going to be Endometriosis that is inside you.
A common misconception about Migraines is that people just think it's a bad headache, take a tylenol and wait a hour for it to go away, but it's so much more than that. Back pain, bright lights, loud noises, stress, and other outside overstimulating environments/situations can cause or trigger a worse migraine. My head feels like a bowling ball basically everyday, but my migraines are 24/7. They never end.. I don't even remember what not having a migraine or not being in pain feels like, which is crazy to think about! I've suffered and others like me have suffered. We need treatments like excision surgery to be made affordable for lower income households and to hold the medical community to higher standards when it comes to Endometriosis patients. Actually listening to us would be a start! Please help us, we are in dire need of medical trials and research for this debilitating, excruciatingly painful, and chronic disease.
You have the power to make change for us and we will never stop advocating for better care. Thank you for reading.
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