Below is a letter being sent to Senator Elizabeth Warren and Senator Mitt Romney, as well as anyone else who may have the power to create change.  This letter is demanding that we see an end to the legal medical abuse that women diagnosed with the disease adenomyosis commonly face.  By signing this petition, you are showing your support and helping to call for immediate action.  Women everywhere should have the right to decide what medical procedures are right for them, their body and their illness without being forced to undergo countless surgeries that leave disease behind.  Please help me demand legal protection and support for women seeking out medically necessary hysterectomies.     

 

Hello Senator Elizabeth Warren, Senator Mitt Romney, and Whomever Else It May Concern.

As a woman suffering from severe endometriosis, I want to thank you for the work you did in order to secure Department of Defense funding for endometriosis research.  This is a necessary step towards giving millions of suffering patients relief.

However, I want to bring something to your attention.  Endometriosis has a “sister disease” called adenomyosis: it is a painful condition similar to endo (and often found co-existing in endo patients) and can wreak havoc on women’s lives.  

For me, adenomyosis means horrendous uterine cramping that will leave me blacking out and vomiting from pain, extremely heavy bleeding and clotting, horrific cramps present even when not on my period, painful bloating, and much more.  This disease takes place only in my uterus, and despite being on multiple hormonal medications to try and manage my symptoms, it has only progressed and my symptoms have gotten worse.  

I am 21 years old and was forced to take high school classes at night because I couldn’t manage my pain well enough to participate properly in day-school.  It has since cost me any hope of pursuing further education or a career: I am disabled from this disease. I can no longer work. I don’t have the energy or stamina to hang out with my friends.  I rely heavily on mobility aids. I have attempted suicide twice in attempts of escaping the pain and complications these sister-diseases have plagued me with.   

Unlike endometriosis, adenomyosis has a “cure”.  That cure is the removal of the diseased organ: a hysterectomy.  Hysterectomies have proven to get rid of all adenomyosis symptoms, and in doing so have greatly improved the lives of women who have had this procedure done.  

Unfortunately, this procedure is largely inaccessible to women under 35 without children-- simply because surgeons refuse to perform it.

I am going into my second major surgery to manage my endometriosis and adenomyosis.  

I begged my current surgeon to remove my uterus, both of us knowing and acknowledging the fact that adenomyosis is a large culprit of my pain and suffering, and that a hysterectomy would end that portion of suffering.  However, despite my begging and insistence, I was again denied my hysterectomy. I am forced to live with this diseased organ that viciously bleeds, cramps, and robs me of my quality of life for one reason. 

That reason?  Maintaining the chance of being fertile.

2020 is quickly becoming the year of #MyBodyMyChoice.  Women everywhere are fighting for their reproductive rights.  It is fantastic to see so many strong women speaking out for their rights.

What I am not seeing enough of, however, is people fighting for a woman’s right to safely remove a diseased and painful organ from their body.  Like endometriosis, this disease and its complications are very hush-hush.

Can you name one other surgery or procedure where a surgeon refuses to remove disease, despite the fact that it is safe and non-life-threatening to do so?  Can you imagine if a man had a disease so painful that it had pushed him to the brink of suicide multiple times- a disease with a procedure that could effectively put an end to that pain- and him being denied treatment because it would affect his fertility?  It simply wouldn’t happen, because this country protects a man’s right to be free from disease, even if it does affect his chances at fatherhood.

But what else can affect a person’s chance towards parenthood?  Suicide. According to a survey taken by over 13,500 women with endometriosis: about half of these women reported having thoughts or attempts of suicide.  While there is no data for adenomyosis and suicidal thoughts/attempts, a 2017 study of 300 women diagnosed with adenomyosis between 2008 and 2016 found that 42.3 percent of these women also had endometriosis.  I have no doubt in my mind based on these statistics and on personal experience that adenomyosis is ending lives: whether by quality or by heartbeat.

According to Brigham and Women’s, “Adenomyosis is also associated with other uterine disorders. More than 80 percent of women with adenomyosis have another abnormal condition in the uterus; 50 percent of patients have associated fibroids (benign smooth muscle tumors of the uterus).  The only definitive treatment for adenomyosis is total hysterectomy (surgical removal of the entire uterus). GnRH (gonadotropin-releasing hormone) agonists have been used in a few cases, resulting in a temporary decrease in uterine size, in amenorrhea (cessation of menstrual cycling), and even in the ability to conceive. Unfortunately, regrowth of the adenomyosis and recurrence of symptoms usually occur within six months of stopping GnRH treatment.”  

As you can see, it is well known that hysterectomy is the most efficient course of action in regards to giving women with adenomyosis their life back.  

Unfortunately for me and for women like me, we are denied this form of life-improving health-care despite our consent and full knowledge of the risks of the procedure.  At 21 years old, I am a legal adult with no limitations: except when it comes to my body. This is unacceptable. This limitation is costing lives. People are ending their lives by their own hands because of this frequent and unethical denial in bodily autonomy.

I am urging you to make this suppression of human rights illegal.  Please do not continue to allow surgeons to deny suffering patients procedures that have been proven to greatly improve quality of life and end pain caused by present disease without referring them to another surgeon willing to perform the procedure.  

Most women cannot find a surgeon willing to perform this surgery if they are under 30-35 years old.  Even then they can be denied on the grounds that they are unmarried or do not have biological children.  For me, this means suffering for another 10+ years with a disease that could be treated now.  I am being honest when I tell you I cannot fathom surviving another 10 years with the horrid chronic pain and symptoms this condition plagues me with.

It should be illegal to deny any patient who has been educated on the procedure their right to having disease removed from their body without referring them to another more capable and willing surgeon.  

Patient abuse is defined as “any action or failure to act which causes unreasonable suffering, misery or harm to the patient.”  I would say this denial of necessary healthcare falls neatly into this definition: and yet nothing is being done about it.

Please help me and countless others like me.  We deserve a chance at living pain-free, without suffering non-stop for 10+ years to get there.  I am begging you for help.

Please consider the lives of women silenced by surgeons because of the presence of a womb.  Women should have a choice in this matter, and that educated choice should be supported by their health-care providers.  If a surgeon is not willing to perform this procedure for any personal reason, then they should be required to refer their patient to a qualified surgeon who is willing to do their job.  Women should not be forced to continue to suffer because of the stigma surrounding fertility.  

We should be able to decide for ourselves alongside the education of risk whether this procedure is right for us: and if it is, we should not be denied access.  We should not be victims of patient abuse just because we are women.

I am hoping that you support this common-sense proposal of protecting and enforcing patient rights.  We are counting on you to take action.

Respectfully and with hope,

Jordan Ayres 

PS: The signatures you see below are from others who agree with this notion and are also urging you to bring about much-needed change.  Thank you for your time and consideration.