Endometriosis is a challenging disease. Not only is it poorly understood in the medical arena, but most people in general have never even heard of it. Yet it affects 1 in 10 women worldwide and can take up to ten years, or longer, to be properly diagnosed. Symptoms can be debilitating, and women may have to endure multiple surgeries to find relief.
The gold standard and best treatment available, surgical excision, is challenging for many women to have access to. This is often due to insurance issues, geography, and the sheer lack of skilled and experienced surgeons who are able to perform this meticulous surgery. It is easy for a woman to feel a lack of support as she tries to navigate this minefield of treatment for a common, yet commonly misunderstood, disease.
So what support can you provide if you have a loved one who is diagnosed with this life-altering disease?
1. Do your research. Endometriosis is a difficult disease to understand. There is a plethora of misinformation out there being perpetuated by women, however unknowingly. These women heard this information from their doctors, of all people, who are still living in the dark ages of the erroneous information they were taught in medical school.
We know a lot more about endometriosis than we used to, but the misinformation is still rampant. You can help by educating yourself about the true facts of the disease. Some of the best, most accurate websites are listed below. I have included my own endo-related blog page, Yellow for Endometriosis, as well for concise information and resources.
- Yellow for Endometriosis
- Endometriosis Foundation of America
- Center for Endometriosis Care
- Endometriosis UK
- Endometriosis Australia
2. Understand her needs. This is a complex topic that can be divided into several sub-categories.
- Understand her need for relief. The primary symptom of endometriosis is severe pelvic pain. It is a disease characterized by pain. It is a disease of pain. Get the picture? In many cases, this is a type of pain that can’t be “fought through.” A woman may be affected only during her period or even all the time. Pain may be addressed in many different ways, such as heating pads, hot water bottles, hot baths, yoga, or over-the-counter pain relievers. But it may come to the point that your loved one needs prescription pain medications. And that’s ok. She is not an addict. She is not selling. She just wants relief, to be a functioning member of society. It may be the only thing that can tie her over until she is able to have proper treatment with surgery.
- Understand her reluctance to be intimate. If your partner is the one with endometriosis, this is an important one. Another key symptom of endometriosis is dyspareunia, or painful intercourse. This is due to where the endometriosis lesions are located in her body; she may describe deep penetration as feeling like she’s being punched or hit inside. It may be that intercourse is simply far too painful to engage in, so please respect her wishes if she puts the brakes on a romp in the bedroom.
- Understand her abilities. Since endometriosis can sometimes progress fast and furious, she may go from seemingly all right to bedridden practically overnight. She may need help with daily tasks, such as cooking, cleaning, or doing laundry that she never needed assistance doing before. Never, ever shame her for being “lazy.” Do you honestly think she’d rather be in bed writhing in pain than cooking dinner?
3. Support her decisions. It’s her body, not yours. Only she knows how she feels. If she wants to go with medical (drug) therapy, which will only provide temporary relief and can have permanent side effects, discuss the pros and cons (based on what you’ve learned from your own research, of course!) If she wants surgery (and honestly, she needs to have surgery to receive an official diagnosis), then be there with her and help her with what she needs while she’s recovering. If she wants a second opinion, support that choice. Many doctors claim to be able to perform excision, but their skills are far less stellar than other surgeons due to experience in the operating room. Do you want a surgeon who’s performed excision 50 times or 2000 times? Excision does not equal excision. You can help her make these decisions by being an active part of her medical care.
4. Understand this is a chronic illness. Technically there is no cure for endometriosis. However, with truly skilled excision, reoccurrence rates are as low as 5-10%, which is a 90-95% success rate. You really can’t get better than that. Cancers are considered cured with success rates that high. But your loved one may have lost something along the way. Depending on how severe her case was, she may have lost several or all of her reproductive organs and now has to deal with the reality of being infertile. This is a situation requiring a great deal of support from others. Or she may never be truly pain free due to such things as the formation of scar tissue. Or she may have the evil cousin of endometriosis called adenomyosis, which can be just as painful and debilitating as endometriosis. Just know that she’s in this for life and it won’t always be easy, even if her excision surgery goes perfectly and her endometriosis never grows back.
5. Stand with her. Join her if she goes to an event to raise awareness for endometriosis. You will never forget the stories you will hear from other women and their loved ones about their journey, because no two stories are alike. The movement has started to grow over the past several years to the point that those of us affected are demanding better, correct, appropriate care, and people of importance are starting to listen.
A real-life example of this is happening right now. In August 2017, women with endometriosis have raised the bar in demanding better care. Led by fellow endo sufferer Casey Berna, we the sufferers and our supporters are petitioning ACOG, the American College of Obstetricians and Gynecologists, to update the standards of care for endometriosis. The standards are horribly outdated and cause more harm to patients than good.
Many of these physicians are almost completely out of touch with treating endometriosis. In fact, in March 2017, ACOG’s own president demonstrated this in the very first sentence of his statement, “It’s Time We Talk About Endometriosis”…with an incorrect definition of endometriosis. If the leader of the organization that drives this field of medicine in the United States can’t even correctly define the disease in question, how much do those under him know about the disease? It shows a laughable, yet pitiful state of things that needs to be addressed, and now.
Here is a chance to show your support. Nearly 3,000 individuals have signed the petition so far. Will you stand with us and sign, too? If you need more information, consider reading this testimony from Dr. Jeff Arrington, the only surgeon capable of performing specialized excision in the entire state of Utah. His words carry authority and truth.
“To treat these cases of endometriosis that often require 4+ hours to complete using ‘usual and customary’ operative times would require 8+ operative experiences of 30-45 minutes each. This is ethically unacceptable.
‘Nothing more can be done’ is simply not true. In the correctly trained hands there is more that can and should be done.
The current standard of care does not provide the care that our patients deserve and need. The current standard of care simply IS NOT SUFFICIENT!” ~Dr. Jeff Arrington
Endometriosis is a complex disease with an equally complex forest of medical information (much of which is false) to wander through. It is a hellacious disease to suffer through and those of us affected deserve help, and someday, a cure.
You, our loved ones, are on the front lines of those we need to lean on to help us and support us. Will you do that today?
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