“Endometriosis knows no gender. Everyone in the endo community deserves to feel respected, heard and welcomed just as they are. We see you and are here for you.” Find endoQueer on Instagram, Facebook, Twitter and their website.

I am a one-person show at LivingWithEndometriosis, and I agree with and embrace what endoQueer has to say. I am also queer, pan, demi and gender-fluid. <3

Fact or Myth? “Hormone therapy cures endometriosis.”

MYTH!

endometriosis.org writes:
“Synthetic hormonal drugs like the pill, Provera, Danazol and Zoladex have been used for many years to ‘treat’ endometriosis. However, these hormonal treatments do not have any long-term effect on the disease itself. They do temporarily suppress (quieten) the symptoms, but only while the drugs are being taken. Once use of the drugs ceases, symptoms more often than not return.

This means that hormonal treatments do not have a role in treating (eradicating) endometriosis. If eradication of the disease is desired, surgery performed by a gynaecologist with extensive knowledge and experience of the specialised techniques used for endometriosis is the only effective medical treatment.”

The Center For Endometriosis Care (CEC) writes:

“There is NO evidence that women treated with these agents have their endometriosis cured. On the contrary, there is ample evidence that most women have a prompt return of symptoms after they discontinue the drug. Menopause is a clinical situation which can be quite similar to the state induced by Lupron or Synarel treatment. When you consider that women who still have implants of endometriosis in their pelvis after menopause are very likely to have problems when postmenopausal hormone therapy is begun, it is hard to understand why anyone would reasonably expect a long-term cure from creating a state of extreme hypoestrogenism (lack of estrogen). In truth, if the implants are present, they can respond to stimulation. There has never been a medication that will cure the disease.” [See also Dr. Albee on suppressive medications and Dr. Albee on suppressing endo with birth control pills].

ICER (Institute for Clinical and Economic Review)‘s 2018 report on Elagolix: they “voted unanimously that the evidence was not adequate to distinguish the net health benefit of elagolix from that of treatment with either a GnRH agonist (leuprorelin acetate) or a hormonal contraceptive (depot medroxyprogesterone), due to limited and mixed evidence on clinical effectiveness and potential risks.

“They also noted the uncertainty around the therapy’s long-term side effects and clinical benefit, as elagolix use was limited to 6-12 months in clinical trials yet is intended to treat a chronic and disabling condition.

“While elagolix appears to offer short-term clinical benefits in terms of reduced pain and improved quality of life for women living with endometriosis, evidence is not yet sufficient to rule out the possibility that this therapy may pose long-term safety risks for patients,” noted Dan Ollendorf, PhD, ICER’s Chief Scientific Officer.”

You can find this and other myths here.

During today’s segment of the Worldwide Endometriosis March, Katie Luciani of The Endometriosis Network Canada echoed my sentiments back on March 2, 2021 about gendered language, only they’ve been saying it for almost a year now! <3

Happening Now! The virtual Worldwide Endometriosis March!

DAY 2 – PART 1:

DAY 2 – PART 2:

Happening Now! The virtual Worldwide Endometriosis March!

DAY 1 – PART 1:

DAY 1 – PART 2:

Admin’s Note: I was really irked that I didn’t get any notifications about the Worldwide Endometriosis March AGAIN this year until two days before the event. They appear to have a pattern of not effectively using social media to get the word out enough ahead of time. The first time I saw anything about it was when their webpage sent out an advertisement for Endo March face masks for purchase.

I’m glad that I haven’t missed the event entirely. Initially I thought “wow this sucks because this year it starts on a Friday and I will be at work and have to miss most of today’s opening events due to having to work”. After thinking about it for a minute, I understand WHY they chose to do this – we’re still in lockdown in much of the world due to the pandemic, so to go virtual to represent the whole world, starting on Friday makes total sense, and I hope they continue to do a two to three-day online event post-pandemic to continue to make this event accessible for all.

To that end, I somehow never knew about the Endometriosis Summit, either. Though 100% transparency – that one’s completely on me, as I have two online friends involved in the summit and I should have been paying better attention. I’m remedying that to be more on top of things in general throughout the year from this point forward.

I do already know about the Blossom Ball and have known about it for years. If there are any other large events I should also know about or be reminded about, let me know in the comments. Thanks!

MYTH!

The Endometriosis Summit writes: “Structural racism and implicit bias permeates many institutions throughout America, devastating the lives of African Americans. Healthcare, made of the medical institutions that reign under its umbrella, is no exception. The field of gynecology has an especially egregious history of horrific crimes of racial nature. The proclaimed “father of gynecology,” Dr. J. Marion Sims,  performed torturous experiments on enslaved Black women without their consent, or anesthesia. The failure for doctors to acknowledge the humanity of African American women, and its appalling impact on patients, can still be seen today.”

EndoBlack.org writes: “It was once thought that endometriosis existed only in white women. This was due to the lack of medical care for black women. Any women, of any race or age, can be diagnosed with endometriosis.”

EndoFound.org writes: “Early theories about endometriosis and race suggested that the disease had higher incidence among white, middle-class women and was almost nonexistent among Black women. Unfortunately, the consequences of this myth continue to this day. Today, Black, Indigineous, and POC individuals face more barriers to receiving proper endo diagnosis and treatment.”

Endometriosis.org writes: “Even in 2020, the early endometriosis research that characterised endometriosis patients as affluent, nulliparous women, may contribute to unconscious diagnostic biases and stereotypes. In some countries and social settings, there are known disparities in health care coverage and quality across racial and socioeconomic groups.

Future research should focus on patient experience and should recognise that patients from different racial/ethnic backgrounds may present with different symptoms, may express different treatment preferences, and may respond differently to treatments.”

I have updated information on two pages on this site – Support and Endo Organisations – which are always found in the header bar above.

Online Support For Endometriosis

Organisations

And I have updated the Organisations sidebar on the right of this page which contains the same information as the Organisations page itself.

Myth!

endometriosis.org writes:
“‘Women’s problems’ perplexed nineteenth century doctors, who saw them as indicative of women’s unstable and delicate psychological constitutions. Even though attitudes towards women improved during the twentieth century, some of the old beliefs still linger unconsciously, and affect the medical profession’s attitudes towards women’s complaints, including period pain.

“As a result, while seeking help for their pelvic pain (which may occur apart from menses), many women with endometriosis are told that their (often severe) period pain is ‘normal’, ‘part of being a woman’, or ‘in their head’. Others are told that they have ‘a low pain threshold’, or are ‘psychologically inadequate’.

“The net is that if pain interferes with daily life (going to school/work, partaking in day-to-day activities) it is not normal.

“If pain interferes with your day-to-day life, please seek help and ask to be investigated to determine the cause of your pain.”

The Endometriosis Association writes: “Menstrual pain that keeps you from participating in usual activities is not normal. Some women never experience menstrual cramps. Others have only mild, occasional pain. If your cramps are severe and/or frequent, it is a sign of a problem.”

EndoCenter.org writes:
“What’s the Big Deal? It’s Just “Killer Cramps,” Right?

“Wrong. This mistaken assumption diminishes and invalidates the suffering of every individual with the disease and can lead to feelings of isolation. Endometriosis isn’t just ‘bad periods.’

“So – What IS Normal?? Minor cramping during menses, often treated with over the counter remedies. Each month, tissue lining the uterus (endometrium) breaks down, sheds and exits the body resulting in normal menstruation. Inflammatory hormones – particularly those known as prostaglandins – are linked to the minor cramping and discomfort of a normal period. This is called “dysmenorrhea”.  Dysmenorrhea is not the same as endometriosis, nor is the disease simply comprised of ‘normal’ endometrium in abnormal places – as many sources and organizations mistakenly assert.

“Symptoms vary, but classic signs [of endometriosis] include severe dysmenorrhea, painful sex, chronic pelvic pain, Middleschmertz (painful ovulation), bowel or bladder associated pain or symptoms, infertility and often chronic fatigue, collapsed lung in thoracic endometriosis, and more. Endometriosis can cause pain in menstruators and non-menstruators alike.”

This and other myths can be found here.