As evidenced in discussions throughout various electronic and community support groups, many patients with Endometriosis feel their medical and emotional support needs are not being adequately addressed.  In truth, studies have shown that the average delay in actual diagnosis is upwards of 9 years.⁽¹⁾  During that time, patients must be forced to "doctor shop" to find a physician who will take their symptoms seriously; are referred to psychiatrists by some physicians claiming the pain is "all in their head;" are called hypochondriacs; are told they are claiming the pain is "worse than it is;" are accused of "drug seeking," are told they are "too old" or "too young" to have the disease or subjected to other invalidated claims like "you had a baby, you can't have Endo;" lack social support from friends and family, and many other injustices.

Even once diagnosed through surgery, many are still not offered proper treatment or support.  Some are surgically diagnosed but disease is left intact; others are surgically diagnosed and treated, but all disease is not removed.  Still others are placed on medical therapy or told to "get pregnant" following surgery.  Neither is curative, and certainly, "prescribed pregnancy" is not an effective means of managing Endometriosis, nor does it help a patient suffering from Endometriosis-related infertility.  Hysterectomies are still widely performed;  these are not always helpful for women with Endometriosis outside of the reproductive organs.

We know through research and in speaking with one another that Endometriosis patients do not fit a "typical patient profile."  The disease affects women and teens from all walks of life, countries, races and socioeconomic status.  Endometriosis is not prejudiced against any criteria, striking patients of all ages and backgrounds.  Further still, not all patients have the same symptoms, nor do all patients respond the same way to the same treatments.  One of the only common themes throughout the lives of many Endometriosis patients is pain.

In order to achieve quicker diagnoses and therefore quicker treatment of a patient's pain, I believe we must develop an effective screening process and subsequent patient profile.  To begin with, if a woman or adolescent has painful periods, she should be considered for an Endometriosis diagnosis.

Other symptoms also need to be considered as part of the larger picture.  For instance, if a patient has unspecified pelvic pain, immune dysfunction, allergies, infertility or miscarriages, a relative with Endometriosis, or bladder or bowel troubles with or without menses, these symptoms should lead her physician to suspect - or rule out - Endometriosis.  As enigmatic as the disease is, it should never be ruled out based on a patient's age, childbearing status or lack of "hallmark" symptoms.  We are beginning to realize through research that a new picture of the disease is slowly emerging, with many more "obvious" symptoms than previously believed.  Women are talking, and the medical establishment is slowly beginning to listen.

In a series of informal polls conducted among it's support group members ages 14-50, the Endometriosis Research Center asked a few seemingly innocuous questions about member's physical attributes and basic experiences with the disease.  The majority of respondents were ages 26-35 and were not asked about their race or ethnicity, marital status or household income.  Following are summary findings:⁽²⁾

126 respondents participated in a brief questionnaire regarding heredity and Endometriosis.  19% were the only ones in their family diagnosed with Endometriosis, but 33.33% of respondents suspected someone in their family had undiagnosed disease based on familiar symptoms.  15.87% had mothers with diagnosed disease; 11.90% had sister(s) with diagnosed Endometriosis;  11.90% had aunt(s) with diagnosed Endometriosis and 7.94% had grandmothers who had been diagnosed with the disease.

We know from the work of the OXEGENE Study that genetics are indeed a suspect in Endometriosis.

When asked about back pain, 271 respondents noted the following:  31.37% have back pain, while only 2.58% do not.  Out of all respondents, more patients had taken Lupron (14.39%) than those who did not (12.92%).  Of those who did follow a course of Lupron, 3.69% claim their back pain started after Lupron, while 9.23% noted that they had pain prior to the Lupron.  More women than not did not have a diagnosed reason for their back pain (16.61%, as opposed to 9.23% who did have a diagnosis for their pain).

Based on the results of a 1995 study⁽³⁾ suggesting an association between the occurrence of natural red hair and those factors that lead to the development of Endometriosis, members were asked about their hair color.  Out of 62 respondents, the most common hair color was medium brown (30.65%), followed by 14.52% with dark brown.  Light brown and dark blonde followed suit, at 11.29% and 6.45% respectively, with red coming in at 9.68%.  Blonde and black came in last, both at 4.84%.  17.74% of the respondents dyed their hair.  Premature gray (prevalent in many with depressed immune function) was not an option, but several members have mentioned the presence of it on other occasions.

When asked about eye color, 34 members responded.  The most prevalent eye color was brown, at 41.18%, followed by blue at 29.41%.  Hazel was next at 14.71%, followed by green at 11.76%.  1 respondent indicated that she had gray eyes.

53 respondents participated in a questionnaire about blood type.  The majority of women were + (positive) Rh factors, at 43.40%; with only 7.55% being - (negative).  Specific types were broken out as follows:

A: 24.53%
O: 15.09%
AB: 5.66%
B: 3.77%

When asked if they suffered from infertility, 25 out of 54 respondents (46.30%) said yes.  17 (31.48%) said no, and 12 (22.22%) did not yet know.

Perhaps most telling were the results of 1,016 respondents who shared details regarding their quality of life.  When asked if they have "other ailments" in addition to Endometriosis, the women responded as follows:

7.09% suffer/suffered from depression.
6.69% have/had bowel problems, such as IBS.
6.69% have/had allergies.
5.51% have/had bladder problems (IC or UTI infections).
3.64% have/had many yeast infections.
2.95% have/had many unknown infections.
1.97% have suspected Adenomyosis.
1.18% have/had Fibromyalgia.
0.89% have/had thyroid problems.
0.89% have/had gall bladder problems.
0.59% have/had PCOS.
0.59% were diagnosed with Adenomyosis upon biopsy following hysterectomy.

When asked about their pain, 10.53% said Endometriosis is "the most painful of their medical problems," while only 1.18% said they have endured more pain from other medical conditions.  Only 1 woman (0.10%) said she did not have pain from her Endometriosis.

2.17% could not get pain meds for their Endometriosis pain from their doctors.  7.38% said they could.

When asked when pain occurs, 7.19% said their pain is chronic; 4.72% said their pain is cyclical; 3.44% indicated their pain is sporadic.

When asked to gauge their pain on a scale of "1-10," the majority of women (8.27%) said their pain was 6-10 in severity. 2.66% marked 1-5 in severity, and 2.17% said their pain was 11+ in severity.

The majority of Endometriosis patients who responded to these informal questions are women between the ages 26-35, brown-eyed with light brown hair.  These women suffer from additional health problems (because of the Endometriosis??) and have pain which is not adequately addressed.  These women have - or suspect they have - someone else in their family with the disease.

Sounds like half the female human race, doesn't it?  Will we ever be able to truly define the "typical Endometriosis patient"?

What we do know for sure is, women with Endometriosis continue to have their medical and emotional support requirements met insufficiently.  The need for more formal studies and peer-reviewed research is glaringly obvious.  Only when a widespread study is conducted in which all factors are considered, no matter how obscure they may seem, will we be able to connect the dots and define the common threads that bind Endometriosis patients.

Fortunately, there are surgeons and healthcare professionals who recognize that Endometriosis is a significant disease and needs to be addressed as such.  It is with these professionals that women are teaming up to effectively treat their symptoms and live a healthy life in spite of Endometriosis.  Unfortunately, the practices that these professionals use is not the widespread standard of care; leaving many women in pain without resolve.  We must continue to be ever vigilant in our efforts at raising awareness about Endometriosis and more importantly, educating women and doctors alike as to the best options that work to manage the disease.

For support and to exchange experiences with others who understand, visit the following:
The Endometriosis Research Center

References:
(1) Endometriosis Assoc., Milwaukee, WI
(2) Endometriosis Research Center, Delray Beach, FL
(3) Fertil Steril 1995 Sep;64(3):651-2 (ISSN: 0015-0282) Woodworth SH; Singh M; Yussman MA; Sanfilippo JS; Cook CL; Lincoln SR.  Dept. of Ob/Gyn, University of Louisville School of Medicine, Kentucky, USA

Copyright © 2001 by Heather C. Guidone.   All rights reserved.  Do not reproduce without express permission.