The Personal, Painful Ordeal of Women with Endometriosis

The Personal, Painful Ordeal of Women with Endometriosis

For Lindsay Murphy, a laundry list of symptoms she’d had for years turned out to have a one-word diagnosis. Endometriosis. Patients and a handful of doctors are demanding better education, diagnosis, and treatment for this common condition.

Lindsay Murphy, a 36-year-old San Francisco native, sensed something was wrong with her, but none of the doctors she saw found anything.

Her periods were grueling. Birth control pills seemed to help, but she still wasn’t quite right.

One day, she passed out with no explanation. Another, she woke up in a pool of blood. A battery of tests didn’t lead to a diagnosis.

In May 2011, she started coughing up blood. She had just moved to the Lake Tahoe area to work as a nanny, and she and others first blamed the elevation. Then there was blood in her stool.

In August, as she loaded clothes into the washer at her apartment, Murphy collapsed and was taken to the hospital.

Barely conscious, Murphy remembers medical staff talking heatedly about her low blood oxygen levels before wheeling her into surgery. She would remain on the table for more than nine hours.

When she came to, the surgeon told her she had the worst case of endometriosis he’d ever seen.

It turns out, he hadn’t even seen all of it.

What Is Endometriosis?

Most people think of endometriosis more or less as a synonym for bad menstrual cramps, but the condition is more serious than that. It involves tissue from the uterine lining implanting itself outside the uterus.

Basically, endometriosis is a plumbing problem. Instead of being flushed during menstruation, the uterine tissue backs up into other parts of the body. Wherever it lands, it continues to respond to the hormones that control menstruation. The result is pain and bleeding wherever there’s endometrial tissue.

The condition affects 1 in 10 women.

“Endometriosis reaches far beyond the uterus by sneaking up the tubes or through the blood or lymph systems. It goes other places like cancer, and because it’s the body’s own material, it’s not rejected,” said Dr. Tamer Seckin, a gynecologic surgeon who co-founded the Endometriosis Foundation of America.

 
People are committing suicide because of this, because it’s not recognized and there are no good treatments and people get blown off.
 
Dr. Peter Gregersen, Feinstein Institute for Medical Research

In most patients, the endometrial tissue spreads no further than the abdomen. The tissue can implant itself in the bowel, causing gastrointestinal symptoms. It may sit atop the cervix, making sexual intercourse excruciating. Almost half of female infertility cases are associated with endometriosis.

The scientific literature documents more severe cases, like Murphy’s, where the tissue extends beyond the abdominal cavity, including the lungs, throat, urethra, bladder, kidney, liver, and sciatic nerve.

Doctors often dismiss patients as wimps who can’t handle the pain of a normal period. In fact, as many as 87 percent of women who complain of chronic pelvic pain have endometriosis. They wait, on average, a decade to be properly diagnosed.

“People are committing suicide because of this, because it’s not recognized and there are no good treatments and people get blown off,” said Dr. Peter Gregersen, a geneticist with the Feinstein Institute for Medical Research in Long Island who is researching endometriosis.

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Patient Reviews

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  • Angela Aro

    I have struggled with endometriosis and adenomyosis since first starting my period at 13. I was diagnosed at 21 and what followed was a series of unsuccessful surgeries and treatments. My case was very aggressive and involved my urinary tract system and my intestines. After exhausting all of my local doctors I was lucky enough to find Dr. Seckin. We…

  • Emi O

    Seckin and Dr. Goldstein changed my life!

  • Kristin Sands

    Like so many women who have tirelessly sought a correct diagnosis and proper, thorough medical treatment for endometriosis, I found myself 26 years into this unwanted journey without clear answers or help from four previous gynecological doctors and two emergency laparoscopic surgeries. I desperately wanted to avoid the ER again; a CT scan for appendicitis also revealed a likely endometrioma…

  • Wilfredo Reyes

    Dr. Seckin literally gave my wife her life back. I am eternally grateful to him for his generous, determined spirit to see that Melanie finally live free from the prison bonds of Endometriosis.

  • Carla

    I am so grateful to Dr Seckin and Dr. Goldstein. My experience was nothing short of amazing. I was misdiagnosed with the location of my fibroids and have had a history of endometriosis. Dr. Seckin was the one who accurately diagnosed me. Dr Seckin and Dr. Goldstein really care about their patients and it shows. They listened to my concerns,…

  • Melissa Boudreau

    When I think of Dr. Seckin these are the words that come to mind. Gratitude, grateful, life-changing, a heart of gold. I feel compelled to give you a bit of background so you can understand the significance of this surgery for me. I am passionate about Endometriosis because it has affected me most of my life and I have a…

  • Jaclyn Harte

    Dr. Seckin and Dr. Goldstein radically changed my quality of life. They treat their patients with dignity & respect that I've personally never seen in the literally 25+ doctors I've seen for endometriosis. This summer, I had a surgery with Dr. Seckin & Goldstein. It was my first with them, but my 5th endo surgery. I couldn't believe the difference,…

  • Megan Rafael Moreno

    I was in pain for 2 years. I was getting no answers, and because dr Goldstein and dr seckins were willing to see and treat me I'm finally feeling almost back to normal. They were very down to earth and helpful in my time of need. Dr Goldstein was easy to talk to and caring, she took care of me…

  • Nancy Costa

    Dr. Seckin is one of the best endometriosis surgeon. Every time I go to the office, he really listens to me and is always concerned about my issues. Dr Seckin's office staff are a delight and they always work with me. I feel I can leave everything to them and they will take care of it. Thank you to the…

  • Rebecca Black

    Fast forward 5 years to find out incidentally I had a failing kidney. My left kidney was only functioning at 18%. During this time, I was preparing all my documents to send to Dr. Seckin to review. However, with this new information I put everything on hold and went to a urologist. After a few months, no one could figure…

  • Monique Roberts

    I'll never stop praising Dr. Seckin and his team. He literally gave me back my life.

  • Erin Brehm

    I had a wonderful experience working with Dr. Seckin and his team before, during and after my surgery. I came to Dr. Seckin having already had laparoscopic surgery for endometriosis 5 years prior, with a different surgeon. My symptoms and pain had returned, making my life truly challenging and my menstrual cycle unbearable. Dr. Seckin was quick to validate my…

  • Anita Schillhorn

    I came to Dr. Seckin after years of dealing with endometriosis and doctors who didn't fully understand the disease. He quickly ascertained what needed to be done, laid out the options along with his recommendation and gave me the time to make the right decision for me. My surgery went without a hitch and I'm healing very well. He and…

  • Nicholette Sadé

    Dr. Seckin brought me back to life! I am now 3 weeks into my recovery after my laparoscopy surgery, and I feel like a new and improved woman! Being diagnosed with Endometriosis, then 25yrs old in 2015, and discovering the severity of my case being stage 4, made me devastated. Dr. Seckin's vast knowledge of the disease, sincere empathy, and…