Why Endometriosis Needs More Media Attention

I'm not a Doctor, nor a Nutritionist, nor any type of medical professional. I am a woman who lives with mild endometriosis and I want to tell you why the media needs to give this disease more attention.

First, what is Endometriosis? "Endometriosis (from endo, "inside", and metra, "womb") is a debilitating gynecological medical condition in females in which endometrial-like cells appear and flourish in areas outside the uterine cavity, most commonly on the ovaries". (1) Typically, endometriosis occurs during a woman's reproductive years. Some women may have no symptoms, while others have such debilitating symptoms that they affect their lives dramatically. The most major symptom is pelvic pain. This can bring on different aspects of pain, such as dysmenorrhea - painful, sometimes disabling cramps during menses; pain may get worse over time (progressive pain), also lower back pains linked to the pelvis, chronic pelvic pain - typically accompanied by lower back pain or abdominal pain, dyspareunia - painful sex, dysuria - urinary urgency, frequency, and sometimes painful voiding. (2) There are also several other symptoms associated with endometriosis, anything from nausea and vomiting, to chronic fatigue, depression, and even anxiety.

Endometriosis affects close to 176 million women worldwide. (3) Particularly, 10-20% of American women suffer with it, that's approximately 1 in 20 or 13.6 million women. (4) I think what's even more important to note is the direct link that endometriosis has with infertility. The numbers are about 30-40% of women with endometriosis are infertile (5). That percentage is quite high and I wouldn't be surprised if it's even higher.

What causes or creates the condition is what I find most interesting. The number one cause that most medical professionals talk about is retrograde menstruation. This occurs when "during a woman's menstrual flow, some of the endometrial debris exits the uterus through the fallopian tubes and attaches itself to the peritoneal surface (the lining of the abdominal cavity) where it can proceed to invade the tissue as endometriosis". (6) Another cause is having too much estrogen in your system from food. One other cause is environment. There has been growing concern over the past few years about consuming liquids and food in plastic packaging, particularly cooking food in plastic containers in the microwave.

When it comes to treatment, it seems to be focused upon more medical relief, rather than nutritional. Everything from Progesterone pills, to laparoscopic surgery, to birth control pills, to Nsaids like Ibuprofen or Naproxen to control the pain are used for treatment of Endometriosis. For treating infertility, Doctors commonly do either IUI (Intrauterine Insemination along with fertility medication like Clomid), or IVF (In-vitro Fertilization).

With regards to nutrition, there are dozens of websites that talk about making changes to one's diet to help reduce the symptoms of endometriosis to even eliminating the condition. This is the part that I am most curious about. Most of the sites say to eliminate wheat, sugar, meat, and dairy. It seems that these food categories stimulate the condition. Sticking to a diet high in cruciferous vegetables, such as cabbage, arugula, broccoli, and omega 3 fatty acids, such as walnuts, flaxseed, salmon seems to help immensely. What I want to know is why and what else can we do with diet and supplements to help, rather than taking pills or having surgery?

With all this said, there are millions of women suffering with this condition everyday, or women that don't even know they have this disease, or finally women that are misdiagnosed with a different condition, but are still suffering years later. The media really needs to seriously give this disease more attention.

One person that is starting to get the word out is Padma Lakshmi. After years of suffering with debilitating periods, she was finally diagnosed in 2006, had laparoscopic surgery, and was blessed with her first child, which she gave birth to in February 2010. She and Dr. Tamer Seckin M.D. (who performed her surgery) started the Endometriosis Foundation of America. Padma hopes the organization will teach women and teen girls about the symptoms and empower them to push for an earlier diagnosis. (7)

What I would like to see is Oprah have a show devoted to Endometriosis and have Dr. Christine Northrup on the show with everyday women coming forward to share their experiences, or how about celebrities coming forward to talk about their experiences, or even have CNN do a special segment on it. All of this will help, but something needs to happen so endometriosis can stop being called the silent epidemic.

Sources:
1, 2, & 6 - Wikipedia.org
3 - Endometriosis.org
4 - Wrongdiagnosis.com
5 - Nezhat.org
7 - Lifescript.com

 

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Comments

[Lauren Siegal]

01:41 PM on 07/13/2010

Thank you so much for your post. My story is not unlike most woman with this disease. For ten years I went from doctor to doctor complaining of pain and fatigue. I had every test know to man and was diagnosed with everything from IBS to depression. Each time I would leave the newest specialist I found, I would feel so beaten down and started to think maybe it was all in my head. I broke up with boyfriends because the sex hurt so much and I would just assume that there was something wrong with me. Ironically, it wasn't until 3 years ago when I was complaining of pain to my friend's boyfriend who was in med school, that I first heard of Endo. He had just learned about it in med school and after doing a little research, I became convinced I had it. I then found Dr. Nezhat and he performed laproscopic surgery on me. I had Stage 2 endo which spread to my appendix which was removed. I am following a vegan gluten free diet which I believe helps and I practice yoga a few times a week. Still, the pain is not completely gone and some months are better than others. My hope is that as more people become familiar with the disease, girls will get diagnosed sooner and more research will go into causes and non-surgical treatments.

[Robyn Cohen]

09:21 AM on 07/14/2010

Lauren, thank you so much for sharing your story. I wish more women would come forward to share their experiences and whether or not diet, or surgery, or both helped. All of this is important to generate more attention for this condition.

I have not been formerly diagnosed, but I'm pretty sure I have it. What is most important to me is what are the diet and lifestyle changes we can do to help or even alleviate this condition. Food is so powerful. It can make us healthy or make us sick. I know people that have had Cancer and cured it through diet and lifestyle changes. Of course, the medical industry doesn't want us to have that kind of control over our health. Thankfully with the Internet, anything is possible! :)

[Lauren Siegal]

04:26 PM on 07/16/2010

Thanks Robyn! I am getting involved in the Endo Foundation of America and I know that Dr. Seckin is trying to build a complete wellness center to treat woman with this disease holistically. Personally, I am doing a yoga teacher training because I have found that yoga helps with the pain and I am hoping to help other woman once I deepen my practice. But like you I really believe in the healing power of foods, though it is totally annoying to be so restricted in my eating, especially on dates:)

Thanks again for writing this article and be well!

[Martin 27514]

04:48 AM on 07/13/2010

Endometriosis is intractable pain from injured pelvic nerves that worsens in the second half of the menstrual cycle because of increases in pelvic blood flow. It has little or nothing to do with the spots of ectopic endometrium in your pelvis that arrive because of the injuries to pelvic nerves that cause abnormal uterine contractility and retrograde menstruation.

Injuries to pelvic nerves result from childbirth and prolonged physical efforts during defecation (that may occur in infancy or childhood). Both are preventable by avoiding difficult vaginal deliveries, and, improving diets and bowel habits.

Treatment requires reductions in pelvic blood flow (it gets better at the menopause), drugs directed at injured nerves (imipramine, SSRI's, pregabalin, etc) alone, or in combination, plus whatever alternative therapy a woman finds to be helpful. Surgery to blobs of endometrium is usually unhelpful though hysterectomy can be helpful in selected cases.

Regrettably endometriosis is now a "billion dollar industry" with much of the turnover resulting from unhelpful surgical procedures. Some careful scrutiny is clearly desirable.

(1) Endometriosis: the elusive epiphenomenon.
J Obstet Gynaecol. 2009 Oct;29(7):590-3. PubMed PMID: 19757260.
(2) Uterine innervation after hysterectomy for chronic pelvic pain with, or without, endometriosis.
Am J Obstet Gynecol. 2005 Nov;193(5):1650-5. PubMed PMID: 16260205.
(3) Perivascular nerve fibre proliferation:the consequence of prolonged straining.
J Obstet Gynaecol. 2007 Feb;27(2):185-8. PubMed PMID: 17454472.