News

March to Washington to fight 'Eve's curse'

Demonstration will focus on raising awareness of endometriosis, women's health

Dr. Camran Nezhat has a vision: that women from all over the world will rise up and demand better health care and that governments will actually listen. And the Stanford Hospital & Clinics physician said he is staking more than $1 million from his own family foundation to make that happen.

Nezhat and a growing contingency of volunteers are organizing a march on Washington D.C. on March 13, which will highlight endometriosis, a gynecological disorder affecting an estimated 200 million women worldwide.

The Million Women March for Endometriosis, or Endomarch, is the spear point of demonstrations planned in 50 countries, he said. The D.C. march will take place at the National Mall.

Nezhat, director of the Center for Special Minimally Invasive and Robotic Surgery at Stanford Hospital & Clinics, said he has seen and treated thousands of women with the disease. He invented videoendoscopy, using video-assisted, minimally invasive laparoscopic surgery to treat endometriosis. The entire surgery is done through a scope and a surgical laser inserted into 1-inch-wide incisions.

Endometriosis is thought to originate in the uterus. The endometrial layer, which sloughs off during menstruation, somehow is spread outside the uterus and into the body. The wayward cells proliferate during the menstrual cycle each month, causing scar tissue, organ damage and debilitating pain. About 50 percent of women who are infertile have the disease; about 80 percent who have uterine fibroids also have the disease, he said.

Nezhat made endometriosis his focus after his mother suffered from what was most likely undiagnosed endometriosis. The disease left her bedridden and passing out from pain.

"We can do something about this condition and raise awareness. Enough young girls and women have suffered. It has become part of their life -- Eve's curse -- and it doesn't have to be so," he said.

So far, 9,000 women and men worldwide have signed up for the march. That may seem a far cry from the million in the event's name, but Nezhat said that number is meant to represent the millions of women affected, not how many will show up. But he would be thrilled if the marches did reach that number.

Organizers started using social media in ways that would make grassroots campaigners proud. The website has video blogs, educational information, spots for "citizen journalists," a flash-mob campaign and information for discount travel to the event. A search function helps marchers find and join teams in every state and country.

March organizers have set up much like a political campaign. They created precinct managers in each state and captains who help spread the word. Ten full-time workers at the headquarters in Nezhat's Palo Alto office help precinct managers create strategies, and there is a branch headquarters in San Jose.

Precinct managers and captains take a Skype interview and receive instructions on how to organize their chapter, he said.

"We are hoping this will be a start of something like Susan B. Komen," the breast cancer foundation, he said.

The march's advisory board includes executives from major medical organizations and endometriosis associations. Dr. Linda Giudice, chairwoman of the Department of Obstetrics and Gynecology at the University of California, San Francisco, is campaign's chairwoman. Three of Nezhat's siblings -- Farr, Ceana and Azadeh Nezhat -- who are also physicians of reproductive medicine, are board members, and Law and Order: SUV actress Stephanie March is the event spokesperson.

Nezhat hopes that by raising awareness, more funding will be appropriated for more research and that policies will also change. He wants screening protocols in schools the same way that children are routinely checked for scoliosis, a curvature of the spine, he said.

"Endometriosis is a totally enigmatic disease. Just when you think you have figured it out, another curve ball is thrown at you," he said. The disease shares many features with non-fatal cancers, although it is not a cancer, Nezhat said. It can metastasize or spread essentially anywhere in the body, including the brain.

Dr. Jill Main, a Stanford obstetrician/gynecologist and fellow at the Center for Minimally Invasive Surgery, is also a march organizer. She wants to broaden recognition of the disease, which typically isn't diagnosed for six to 8 years, she said.

"We really don't know much about it. The more people are aware of the disorder and how it impacts the lives of women, the more it will infiltrate into the medical curriculum. People are seen many times with pelvic pain, and they are brushed away because doctors can't recognize the symptoms," she said.

The march will start at the Andrew W. Mellon Auditorium at the National Mall and features medical panel discussions and keynote speakers. Rock musician Sheryl Crow will speak and perform, and Jumbotrons will exhibit videos streamed of marches from around the world.

The marchers will walk to the National Institutes of Health and other medical agencies, Nezhat said.

Sponsors include The American Society for Reproductive Medicine, the American College of Obstetricians and Gynecologists, the American Medical Association and other societies for reproductive surgery and disease. But the march is being entirely funded by the Nezhat Family Foundation.

More information about the event, including registration, is posted at www.millionwomenmarch2014.org.

Comments

Posted by UC Davis Grad, a resident of Mountain View
on Feb 18, 2014 at 5:48 pm

Wishing the organizers all the best in this endeavor!


Posted by Endometriosis here, a resident of Another Palo Alto neighborhood
on Feb 18, 2014 at 5:49 pm

All of the mistakes that were made in my labor and delivery were because I had a precipitous labor, and I didn't "look" like I was in labor. (Thankfully, good outcome.) The nurse apologized to me afterwards, and said something to the effect that I didn't look like women who are in that stage of labor because I wasn't reacting like I was in pain.

And that's because I have had a very significant level of disseminated endometriosis my entire menstruating life and a bad period for me is much more painful than my labor was, and I am reflexively used to trying to look like I am not in pain, because covering up for such pain in the middle of life is such a big part of my life. I have been through stretches where I was in that kind of pain 3 weeks of every month. Think about that the next time you are in labor and delivery!

Endometriosis is just pure suffering, especially when there is bowel involvement. (Endo is rarely fatal except when bowel involvement causes the GI system to act like there is bowel obstruction - which usually happens without actually physically obstructing the bowel with actual tissue.) There is a lot of misinformation, even among doctors. I have also found that having bowel involvement puts you in a kind of no man's land where the OB docs fear to tread and the GI docs throw up their hands and send you back to the OB docs. And the damage of the disease isn't necessarily over at menopause, though it can be.

I was lucky to even have a pregnancy/ labor and delivery thanks to a number of local doctors, including I see Dr. Nezhat who pioneered the techniques my own surgeon used.

I wish I could march, too! Is there a way for me to sign up and say, I'm there in spirit?!!



Posted by Sarah Sherwood, a resident of Another Palo Alto neighborhood
on Feb 18, 2014 at 6:32 pm

Yes, there is. Go to the Facebook page and begin speaking to the women who are going: Web Link They can wear your name in spirit. Also, you can help us spread the word by spreading this important article all over social media. THank you for sharing your story!


Posted by Vera M. Shadle, a resident of Adobe-Meadows
on Feb 19, 2014 at 11:19 am

Note to Editor regarding the following sentence:

Three of Nezhat's siblings -- Farr, Ceana and Azadeh Nezhat -- who are also physicians of reproductive medicine, are board members, and Law and Order: SUV actress Stephanie March is the event spokesperson.

///////////
That would be SVU (Special Victims Unit), not SUV (Sport Utility Vehicle). Probably a good idea to fix it.


Posted by Linda, a resident of another community
on Feb 19, 2014 at 11:25 am

Wonderful and informative article. Thank you, Ms. Dremann!


Posted by Too many ignoramus doctors, a resident of Evergreen Park
on Feb 19, 2014 at 1:10 pm

My best friend recently lost her uterus to this condition, after five years of bleeding continuously, all month long, every month!

Her first doctor ( in Washington state) told her that a pregnancy would cure the problem! She dumped him ( rightfully so). The next couple of doctors insisted she should consider a pregnancy because it would be a nine-month reprieve from continuous bleeding....this after tests turned up nothing.

Last year, she went to a doctor at the University hospital in Portland, Oregon. This doctor decided that she probably had cancer because her uterus was very swollen--there must be a tumour in there which would be the source of the bleeding. Without further testing, this doctor ( a woman) scheduled my friend for a hysterectomy, leaving the ovaries.

As it turned out, there was no tumour, just a greatly exacerbated case of endometriosis which had spread to the ovaries and intestines. Now she will never have children ( her husband will not consider adoption).

Four misdiagnoses from four specialists, one at a teaching hospital! Obviously there is not enough information among gynecologists concerning this painful and exhausting disease. Certainly there are not enough treatments,,if indeed there are any at all ( my friend was never informed of anything other than hormone treatments, which made the pain worse).

Apparently, endometriosis is not all that uncommon anymore, and the ignorance about it is just not understandable. The pain and bleeding are more than just inconvenient, they are life altering, AND the anemia can be incapacitating as a woman's body will respond by making her dangerously sleepy!

Thank you so much for raising awareness about endometriosis, and it is heartening to hear that someone is trying to bring attention to Washington DC


Posted by AllYouCanEat, a resident of Mountain View
on Feb 20, 2014 at 10:33 am

If the first suggestion was to get pregnant, then why didn't she do it? As stated in a few paragraphs below her and her husband obviously wanted children. Now she has no uterus and no possibility of having children.

If she would've followed through by getting pregnant she possibly would have a child by now. And who knows, maybe her issue with her uterus would have been alleviated. If not she would still be left with a child.


Posted by Endometriosis here, a resident of Another Palo Alto neighborhood
on Feb 20, 2014 at 6:39 pm

@All,
I'm trying really hard not to lay into you for saying something so very, very ignorant and hurtful.

Endometriosis is probably the most common cause of infertility. At certain stages, it is also associated with miscarriage. Depending on how extensive the adhesions are, even if someone does get pregnant, there can be serious consequences in the pregnancy and in a cesarean. I remember hearing one case where the woman's bladder stretched over her uterus during the pregnancy because of adhesions, and the surgeon thought it was thick scar tissue when cutting through for the cesarean -- luckily the medical emergency was caught in time and she survived.

Lastly, pregnancy is not a cure. That's just baloney. Doctors probably think it is because they get rid of troublesome patients for a long time and maybe never see them again (since they go see someone else). Some women probably do better because their adhesions stretch out, but even that's not a cure. Other women do worse. I was able to get pregnant after years of suffering, and after giving birth, my endo pain went into hyperdrive. It was so bad after I gave birth, there were times I literally thought if there was an emergency then, there was no way I could save myself or my child. The pain is so bad, you just get through it second by second.

As the above poster says, there is a lot of ignorance in the medical profession about this disease, too. One relative was told to have a hysterectomy to treat it in her 20s. Naturally, the consequences of the hysterectomy were serious so they gave her hormones to prevent them -- which grew back the endometriosis and didn't protect her as well as her own hormones would have from the health problems. But because she'd had a hysterectomy, the doctors didn't diagnose the problems because they figured it couldn't be the endometriosis. Her whole life was altered irrevocably -- no children, many surgeries including bowel surgeries, terrible pain and disability her whole life, even into menopause.

I had such bad disease, everyone except my own doc pushed me to have a hysterectomy in my 20's too. That was the recommended treatment. And terrible hormonal drugs that don't really work but thin your bones. If it wasn't for my family doctor, I would have done the hysterectomy, I was so desperate, and ended up like that relative I just mentioned. Of course, no one recommended pregnancy because IT'S NOT A CURE and they already thought it so unlikely for someone like me. It turns out, research now shows hysterectomy is not recommended for people with such severe disease because the adhesions just grow on the bowels and bladder instead of the uterus. Leaving the uterus is the lesser of evils.

But your post is just emblematic of the breathtaking lack of knowledge about this disease.


Posted by Too many ignoramus doctors, a resident of Evergreen Park
on Feb 20, 2014 at 6:39 pm

My best friend's husband had just been laid off from his job as an IT specialist at the time her first doctors told her that pregnancy would solve the problem. The timing was not good,

More importantly, pregnancy does NOT cure the problem, only prolongs it. Though it can give a reprieve from bleeding, it does NOT give a reprieve from pain. Endometriosis also makes,it difficult to get and stay pregnant--miscarriages are common.

My friend was fed a LOT of misinformation by poorly informed gynecologists.


Posted by Sarah Sherwood, a resident of another community
on Feb 21, 2014 at 10:39 am

So glad you are sharing your experiences--that is what will help secure more research toward a cure for this painful, under-reported, not-well-known but common disease.


Posted by Endometriosis here, a resident of Another Palo Alto neighborhood
on Feb 23, 2014 at 2:41 pm

Sarah, will the Weekly cover the event as it happens, or a Palo Alto contingent?


Posted by Endometriosis here, a resident of Another Palo Alto neighborhood
on Feb 23, 2014 at 2:49 pm

@Too many ignoramus,
You got that right. Even if women tried it and managed to get pregnant, I wonder how many of those docs have any idea of what it's like to parent in that kind of pain?

We're not that far beyond the time when menstrual pain was regarded as psychosomatic, so the ineffective pregnancy "cure" recommendation often carried a degrading subtext. That said, in desperation I once tried taking birth control pills back to back for a year so I wouldn't bleed. What happened next as well as the many side effects were not worth the short-lived benefit.


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