Medical field lacks understanding of endometriosis

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Source: The American Congress of Obstetricians and Gynecologists. (Kim Bolduc | Concordiensis)

Lena Dunham has it. Susan Sarandon has it. Whoopi Goldberg, Padma Lakshmi, Julianne Hough, Cyndi Lauper, Tia Mowry — they have all struggled with it. Personally, I deal with pain from our shared disease 11-12 days out of every 29, so just about 40 percent of the time.

“What is this mysterious disease?” you may ask (and I hope you are). It’s endometriosis, if you didn’t already know from the many recent articles about Lena Dunham taking some time off to rest while “going through a rough patch with the illness,” according to a post she made on Facebook earlier this month.

Endometriosis is a disease that affects one in 10 women in the United States and approximately 176 million women and girls globally, according to both the Center for Endometriosis Care in Atlanta, Ga., and the Endometriosis Foundation of America.

Both organizations’ websites list symptoms of the condition, which can include, but are not limited to: severe pain with menstruation each month, chronic pelvic pain throughout the month, painful sex, painful bowel movements and/or urination, fatigue, bloating, nausea and infertility.

It is important to note that there is no known cause of endometriosis — though there are several theories about its cause — and that endometriosis cannot be confirmed through any means except surgical diagnosis.

Endometriosis lesions vary in color, size and location, but their cellular structure is similar to the tissue that lines the uterus.

Like Lena Dunham, I recently took some time off to address my endometriosis pain, which has been debilitating since October.

October marked the first time I had ever passed out from my endometriosis pain, which happened in the office of this very newspaper.

When I came to on the floor of the office, I texted my boyfriend and my co-editor to let them know that I had passed out, I was in extreme pain and I would need assistance to get back to my room. As soon as they got out of class, they both came up to the office to scoop me off the floor and get me to a bed.

I called my gynecologist from bed, and the receptionist told me that I would either have to come in for an appointment that afternoon or I would have to go straight to the emergency room. As someone with endometriosis, I know there is nothing an emergency room can do for me other than pump me full of hydromorphone and send me home, so I opted to see the gynecologist for the second time in as many months.

As I sat sobbing in my gynecologist’s office, he talked to me about increasing my dose of painkillers and seeing how that worked for me, but also about the possibility that we might need to pursue alternative treatments, like Lupron or another hormonal birth control. He told me to come back in two weeks to chat about my treatment plan.

The increased dose of painkillers got me through the worst of the pain for the rest of the day and over the next few days, but my gynecologist’s other suggestions — Lupron, which is a drug that induces artificial menopause and comes with a slew of side effects, or trying another hormonal birth control pill — weighed heavily on my mind.

You see, I’m hypersensitive to most medications, and my history with hormonal birth control methods is storied, to say the least. The gynecologist I went to see in October is the fourth gynecologist I have been to see since the age of 14, and I’m local to the Schenectady area, so I didn’t switch doctors when I went off to college.

I have been on four or five different types of hormonal birth control. I’ve been prescribed everything from Tylenol and a stiff upper lip to laparoscopic surgery in an attempt to get my pain under control.

It took me eight years of pain, six of which had three different gynecologists theorizing everything from, “It’s all in your head,” to, “You’re just ovulating regularly,” before I finally saw that fourth gynecologist.

I was lucky that when I described my pain to my primary care physician in July of 2014, he listened and, unlike the three gynecologists I had been to see before I thought to talk to him about it, he said, “Sounds like endometriosis to me,” and referred me to my fourth gynecologist.

I scheduled an appointment with this new doctor and, as soon as I finished speaking during that appointment in August of 2014, he told me, “You almost definitely have endometriosis, based on your history and the level of pain you experience. I want to schedule you for a laparoscopy. How does next week look for you?”

A laparoscopy is a procedure that involves making a small incision in the belly button, pumping the abdominal cavity full of carbon dioxide gas, sticking a scope in through the incision and looking around. In my case, when stage II endometriosis was found, it also involved burning away, or ablating, all visible disease, which meant two additional incisions in the pelvic area to insert any necessary instruments into my abdomen.

On Feb. 3, I had a second laparoscopy with the fifth gynecologist I have been to see since I recognized that my cramps were abnormally severe, because I decided that drug therapies were not the route I wanted to continue to go. Treating the symptoms does not treat the disease.

I found the fifth gynecologist through extensive googling, after the gynecologist I was seeing told me that the only other option he could recommend, aside from drug therapies, was a presacral neurectomy, which is a procedure where the nerves that run to the uterus are cut. That sounded downright terrifying, and I knew there had to be other options, so I typed, “endometriosis specialist” into Google and let it take me where it would.

I ended up in Binghamton, seeing a surgeon who specializes in laparoscopic excision of endometriosis, which is just a fancy way of saying he cuts out the endometriosis lesions instead of burning the surface of the lesions.

Both the Center for Endometriosis Care and the Endometriosis Foundation of America believe that full excision of endometriosis is the gold standard for care for patients with endometriosis. But I didn’t know that until December of 2015.

Because, somehow, in the nine years I’ve been dealing with this pain and in the year and a half since I was diagnosed, no doctor told me that there was a surgical treatment with significant medical proof of positive outcomes for pain reduction in comparison to other methods of treatment.

In fact, my primary care physician has reminded me every time I’ve gone in to see him since I was diagnosed that he thinks I will have to have a hysterectomy, eventually, to treat the pain.

But a hysterectomy is not a cure for endometriosis, and would only treat my endometriosis minimally, if at all, because the pain I experience does not originate in my uterus. It originates in the lesions in my abdominal cavity, on my uterosacral ligaments and on my ovaries.

Many doctors are woefully uninformed about endometriosis, and only around 100 or so gynecologists in the United States perform effective excision surgery. This is really not acceptable, when 10 percent of women are suffering daily, weekly and monthly with pain from endometriosis.

I’ve taken a reduced course load for the past two terms because you can’t manage chronic pain and still have a normal life. You need proper treatment. And you deserve proper treatment.

Women should be able to trust their doctors to believe them. They deserve to know that their suffering is real.

It should not take eight years from the onset of symptoms to be diagnosed with endometriosis, like it did for me.

There should be better ways to test for it than laparoscopic surgery and biopsy. Patients shouldn’t have to travel hours and hours out of their way to find a doctor who is skilled enough to help them.

I hope that if any woman reading this experiences excruciating cramps each month, or chronically throughout the month, she has a doctor who is knowledgeable about endometriosis whom she can talk to. Because endometriosis does not just affect your periods. It affects your life.

March 1 marks the beginning of Endometriosis Awareness Month. Consider taking some time to raise awareness. I didn’t even hear the word “endometriosis” until I was 20. When 10 percent of women in the U.S. have this disease, shouldn’t I have known about it before I was being scheduled for surgery?

 

16 COMMENTS

  1. This author is to be congratulated for her story, and getting the basics on endo correct. Most mainstream media do not get it right, often regurgitating old mythic errors about the nature of the disease and its treatment. It is refreshing to see an author do the kind of background research to do a story n this devastating disease so well.

    Nancy Petersen RN Retired
    Endometriosis Patient Advocate

  2. Thank you so much for such a great, accurate article! It’s so incredible to read something about endo that doesn’t include dangerous fallacies!

  3. Finally! Someone in the media gets it right! Thank you, Erin, for bravely sharing your story and spreading the facts. This is a voice we can get behind.

  4. Wonderful article. This is the best one I have read to date. I have suffered for many years and your story was very similar to mine. I bet it’s similar to most of us who suffer daily.

  5. A great article! I’ve suffered with this dreadful disease for 35 years, just taking pain meds for years until having a hysterectomy at age 32. This surgery revealed the endometriosis had spread to my bladder. Unfortunately, the hysterectomy did not alleviate my pain. Years of Depo Provera helped somewhat and then 4 years ago I began having tailbone pain. I eventually quit my job of 23 years because I could not deal with the pain. No doctor has ever stated the tailbone pain is related to endometriosis but I feel in my heart that this is the cause. Heaven help all the women who suffer from this awful disease!

  6. Thank you Erin for such a great article! We need more articles like yours and not the misinformation that goes around the people. You have said everything I would want the world to know. I hope it is ok to translate it to Slovenian language. I have a Support group and I would love to share this information well written with all of my members.

  7. Thank you for sharing your experience with endometriosis and writing an article that’s both factual and compelling. So many of us have experienced your same path over the years – pain, misdiagnosis or no diagnosis, then to be offered treatment options that are harmful or not effective. It’s so refreshing to see the disease portrayed as it is – a painful, often mistreated, often dismissed, condition that disrupts and disables. Sharing stories and information like this helps others with this condition find better care and lead better lives. Thank you again.

  8. Fantastic reading. Thank you for sharing the facts of your experience. I am new to this illness and unfortunately I’m in a country where excision surgery and general knowledge does not seem to exist.

  9. Amazing article. So wonderful to see something in print about endometriosis that is actually accurate. Thank you for writing this article and helping to spread awareness to a very misunderstood disease. Hopefully your words will help others so that they won’t have to suffer as long as you did before getting help.

  10. Thank you so much for getting the word out! The only thing I can add is that you can have endometriosis that robs you of your fertility and have absolutely NO symptoms (other than the infertility). This disease comes in some many forms, like a raging hurricane of pain you cant ignore, or a silent ninja that steals your life away while you are completely unaware.

  11. Hi Erin, thank you for sharing your story and I am so sorry to hear how you have suffered for so many years. Endometriosis is a very isolating and very misunderstood disease and it is super you are reiterating that a hysterectomy is not a cure.
    I am writing however to give you hope that there is ANOTHER way to heal your endometriosis…
    I used to have Stage IV endometriosis (& adenomyosis) for over 33 years but I managed to find another way out after countless surgeries, drugs and painkillers. The ‘conventional ‘ medical mode of treatment ended up making me far worse and worse to the point where I ended up loosing my business, unable to play with my children bed ridden and unable to leave the house for several years.
    I have just written a book about my journey from the horrendous debilitating pain of before to now where I have absolutely no endometriosis pain, floods, clots or symptoms and I feel a duty to share what worked for me. Far too many beautiful women are ending their lives because of this condition and loosing all hope.

    Now and throughout the month of March (endometriosis month) I am giving away a FREE copy of my paperback book (just pay for shipping and handling) to anyone who would like to receive a copy. I have been running a pilot coaching program and in 2/3rd week over 60% of women had a reduction in pain already. But never give up hope – there is another way albeit the ‘road less travelled’… If anyone would like to speak with me then please do not hesitate to get in touch. Best wishes Wendy x

  12. Yes, Mahalo for sharing this. With all of the attention Lena Dunham’s unfortunate MISINFORMATION on the topic is getting in the media I’m sure many women like me are being bombarded with well-meaning friends and family saying “did you know…?” followed by dangerous myths and treatments Dunham is propping up. If I didn’t already know better I could easily be taken in and go down dangerous roads (Lupron, hysterectomy, etc) that will do nothing to treat my Endo! I recently had laparoscopic excision surgery and had to fly to another island to do it. And since it was on my bladder, the hysterectomy several GYNs had been recommending for years would have done nothing to help me. Please help women who have or may have this disease by sharing this article and encouraging them to check out the documentary “Endo What?” coming out soon…

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