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Goals and Recent Activities
Since we were founded, the EFA has enjoyed several strides in endometriosis research and awareness; our goals and recent activities include, but are not limited to:
- Launched the Center for Gynepathology Research, based within the prestigious Massachusetts Institute of Technology School of Engineering, in partnership with Dr. Linda Griffith, Ph.D.; in addition to our ongoing research collaboration with Dr. Griffith and her leading biologists and clinicians to achieve advances in the physiology and pathophysiology of the female reproductive tract, a particular emphasis of the new Center is "biological engineering' - an innovatory area of research intended to promote advances in understanding endometriosis etiology and progression;
- Continuing our extensive outreach and education efforts in order to promote early diagnosis and effective intervention, with a particular emphasis among young women; to that end, we are continuing to tour campuses and work towards increased awareness among the lay and student populations;
- Striving towards the establishment of multiple Centers for Excellence for the care and treatment of endometriosis based on gold standard laparoscopic excision surgery techniques and treatment advances;
- Disseminating our educational materials and providing patient advocacy;
- Executing scientific and educational events designed to promote dialogue and progress in disease understanding and treatment;
- Developing, in conjunction with MIT and others, a central repository in which patients can share their struggles and inspirations in order to facilitate a sense of community among patients and caregivers;
- Making significant strides in raising the media’s awareness of endometriosis;
- Entering into a preliminary collaboration to launch an endometriosis research and treatment facility at the esteemed Lenox Hill Hospital in New York City;
- and so much more.
EFA does not provide medical advice or specific doctor referrals, but we will try to guide you to helpful sites and resources for further information. One such resource is the (non-EFA) resource by the Endometriosis Research Center, which hosts a doctor exchange between patients at http://erc.activeboard.com.
Other doctor referral resources can be found on the following web pages:
A New York City metropolitan area support group meets the third Thursday of every other month. Location: 74 Trinity Place, 3rd Floor, Meeting Room 4. For more information, please contact [email protected]
Other helpful online support resources and links:
As we’ve stated previously in our literature, the use of ultrasounds, magnetic resonance imaging (MRI), computerized tomography (CT scan), and certain endometrial biopsy samples may be used as part of a diagnostic workup, but anything less than surgical confirmation of Endometriosis is considered uncertain. Diagnostic workups *can* be helpful in the differential diagnosis; that is to say, ruling out other possibilities vs. Endometriosis. To that end, presurgical
intervention may include any and/or all of the following:
- Magnetic resonance imaging (MRI) – can be helpful at detecting ovarian endometriomas in some cases.
- Computerized tomography (CT scan) – generally very limited in sensitivity and specification overall where Endometriosis is concerned.
- Ultrasound (US) – can be helpful at differentiating between functioning ovarian cysts vs. endometriomas.
- Manual exam – Non-confirmative means of detecting nodules or even in some cases, adhesions.
- Fine needle aspiration – can be used to confirm less common forms of the disease i.e., Inguinal Endometriosis.
- Blood/saliva tests – there has been research conducted in this area, but to date, no blood or fluid test exists to detect or confirm Endometriosis. CA125 (carbohydrate antigen 125 or cancer antigen 125, a blood test for ovarian cancer detection) levels may be elevated in Endometriosis patients, but this result is not specific enough to aid in diagnosis.
- GnRH/medical suppressive therapy – some healthcare providers feel that a course of GnRH agonist therapy can “medically diagnose” Endometriosis. This is a controversial, non-FDA approved (“off-label”) usage with little evidence to support its basis. Others may try a course of oral or other contraceptive hormones to suppress their symptoms; again, temporary quelling of symptoms does not indicate Endometriosis is the underlying cause.
Typically, the diagnostic model consists of the following steps (on average):
- Patient presents to her general practitioner or gynecologist with symptomatic complaints (i.e. pelvic pain, intractable menstrual cramps, bowel or bladder symptoms).
- “Watchful waiting” may be recommended, medical suppressive therapy may be offered, or diagnostics are scheduled.
- Diagnostics return negative results. Patient is offered/continues on medical therapy. Others may be offered laparoscopic intervention at this point.
- If diagnostics are positive for endometriomata or other concern, laparoscopy may be offered.
- Laparoscopic intervention is undertaken and disease is diagnosed/treated.
- Patient may or may not follow surgery with medical suppression.
Unfortunately, this process tends to repeat itself with a vengeance if the disease is not surgically excised from all areas.
Our mission and current work focus primarily on the broader issues of awareness and education; this is how we feel we can do the most good for the most people. At this time, we are unfortunately unable to provide individualized medical advice or financial support. Our long term goals (in the next 5-10 years) include establishing clinics that focus on correct Endometriosis treatment for low income women as well as the institution of “Centers of Excellence” – medical centers designed for the specific needs, and total care of, Endometriosis patients.
Advanced laparoscopic surgery for Endometriosis is a specialty skill. It requires a great investment on the part of the doctor to learn and master, often at personal expense. Because insurance does not differentiate in terms of coding between excision of Endometriosis and any other means of destruction, these advanced surgeons do not get proper reimbursement for the time they invest in maximizing each patient’s care and outcome.
Similarly, by acting as an out of network provider, the surgeon is not subsequently limited to caring for his patient at the direction of a corporate bureaucrat who does not understand the disease and has likely never suffered first-hand from the devastating effects of Endometriosis. A long-term goal of the EFA is to facilitate, and participate in, proper lobbying efforts to change this.
Unfortunately, there are no free clinics for endometriosis that we are aware of. If you've found a specialist you'd like to see, check with the doctor to determine if his or her office offers sliding scale fees and/or payment plans. Where you see him or her also matters; for example, an office visit may be hundreds of dollars, but their hours at a teaching hospital are typically under far reduced rates.
Be sure to check with your local government resources to determine if any grant or other hardship stipends or assistance programs are available, as well as coverage options such as MediCare, MedicAid and Social Security Disability Insurance. Do the same with the hospital where your surgery would be done.
If you have insurance, speak with your company's representative to review your coverage choices and policy benefits. Make sure you understand what's covered and what's not. What is your deductible? What are the policies for emergency hospitalization and procedures? What are the provisions for scheduled surgeries, including anesthesia and hospital stay thereafter? How do you submit a claim? How can you appeal a decision? Do you need a referral to an "out of network" specialist? How much of a prescription cost is covered? What's your co-pay? What are the requirements for "elective" surgery approval? What are the "reasonable and customary" payouts on procedures and medications? Do these payouts vary by State? Also check with the representative regarding disability coverage and healthcare accounts. Some corporations have generous policies regarding both.
Know also, if you've been fired or left your job, federal law protects you from losing your insurance. Known as COBRA [consolidated omnibus budget reconciliation act], your employer must allow you to keep your policy for up to 18 months after you've left the company. This option, while you must pay expensive monthly fees for it, ensures that you will not be left without any coverage at all. If are still employed but your policies are inadequate, consider getting supplemental coverage.
Talk to a tax advisor - can you take out-of-pocket expenses as a deductible on your tax return? This is particularly helpful for those who travel out of state to seek treatment with an Endometriosis specialist.
When filling a prescription, find out if you can have the lower-cost generic version. Ask your doctor if he or she has samples of the medication available. Contact the pharmaceutical company that makes your prescription. Most have “Patient Assistance Programs”, which enable you to receive low- or no-cost meds (see http://www.needymeds.org for more information).
Finally, consider a Clinical Trial. These research efforts are an excellent way to receive (often groundbreaking) treatment for Endometriosis. Sometimes, trial participants even receive financial reimbursement for their participation. The treatment or medication is free, as is the healthcare provided throughout the course of the trial. One drawback to this approach is that you may be in the control group and receive a placebo instead of the medication. Ask your doctor if she or he is aware of any trials you might be eligible to join, or visit http://www.centerwatch.com.
This is a very valid inquiry and concern. It is true that Endometriosis is *not* listed as one of the impairments that automatically garners such qualification.
Generally speaking, if an individual has worked in the calendar year, and earned more than $1000 a month, they will be automatically considered NOT disabled. If this is not the case, the onus is then on the patient to prove that her condition interferes with her basic work-related activities in order to even be further considered. If it does not, the case will automatically be dismissed. If it does, however, the adjudicators then move on to the next step, which is to determine if the condition is “on the list”; Endometriosis is not.
That being the case, case workers then decide if the condition is “of equal severity to a medical condition that IS on the list.” If it is, you will be found disabled. If not, the case goes on to step 4; if your condition is severe but not at the same or equal level of severity as a medical condition on the list, it must then be determined if it still interferes with your ability to do the work you once did previously. If not - your claim is denied at that point. If it does, step 5 is then carried out. This is the step in which the caseworkers seek to determine if you can adjust to *other* work; if so, your claim is denied.
SSI is not the same as FMLA or short-term disability; benefits of which your employer would be able to better explain based on their own specific policies.
This is all just a cursory review of the disability process in general; there is an abundance of specific information listed at http://www.socialsecurity.gov.
Having noted all of this; it should be mentioned with hope that there ARE individuals who have successfully appealed the process and do receive full SSI benefits using Endometriosis as the basis of their claim. Veteran’s Affairs, for example, has approved claims from women who have been assessed as disabled by using the conditions comparison/severity as noted above; in those cases, Endometriosis was given a 50% point weighting (a complicated means of assessing disability risk), because adjudicators determined the severest aspect of the disease was hysterectomy, which already exists on the VA rolls.
Others have been able to gain benefits based on the classification of Endometriosis as an autoimmune disease, which the scientific literature largely demonstrates and accepts it as. Again, this is all just very cursory; you will want to consult with a qualified social security expert, including perhaps an attorney, to determine if re-filing/appeals are appropriate for you.
Getting Endometriosis added to the list of automatic disabilities within the government’s rosters is an arduous task, at best. There are several reasons for this, not the least of which include lack of funds to lobby for such a substantial change to the SSDA’s protocols already in place, and secondly, because Endometriosis affects women in different ways. For example, one woman may be disabled and debilitated, while another has minimal symptoms at best. There also exists a tremendous lack of awareness and education about the disease, and until such time as that happens, women with Endometriosis and chronic pelvic pain will have to continue to fight for their own best interests. Please know we are not insensitive to the plight of so many dealing with this issue, and we are striving to do our best to help raise the profile of this disease so that one day it will be treated as the significant disorder it is. Meanwhile, if we can be of any further assistance, please do let us know. We will always gladly share our resources with you and assist to the extent that we are able. Know that we are here to help any way we can.
You might also be interested in the following links:
Please note that these websites are for informational purposes only, are not officially sanctioned by the Social Security Administration and are in no way affiliated with the Endometriosis Foundation of America.
Yes, even the most advanced surgeons with the best skills have recurrence rates, due to the insidious nature of the disease. It is also important to understand that a surgery, albeit of the most meticulous nature, can’t always correct or otherwise restore years of damage brought about by the disease. However, early intervention and gold standard treatment such as surgical excision can confer the longest symptomatic relief rates.
Get a second opinion from a specialist in advanced laparoscopic excision surgery, whose goal is to preserve organs and remove disease. While hysterectomy has a place in certain cases of Endometriosis, Adenomyosis, “frozen pelvis”, etc., it is NOT a cure and should never be considered first line therapy.
Several non-invasive management approaches can be adapted to suit your own needs, ranging from diet and nutrition to acupuncture to myofascial release therapy.
In terms of diet, for example, women and girls with Endometriosis suffer from many varied food intolerances and can find their symptoms exacerbated by seemingly innocuous food choices. Even simple choices such as breads can become a problem (i.e. due to gluten intolerance), while other foods cause increased inflammatory activity (i.e. due to processed additives and impurities). This is a very big area of discipline to undertake, one that requires a bit of “try and see” approach as to what works for you specifically. In the cursory sense, a diet largely comprised of an abundance of lean, low fat proteins, fresh fruits and vegetables without processing, lower sodium choices, lower sugars (none of the “fakes” i.e. aspartame) and foods which do not include high fructose corn syrups and other stabilizers may be helpful. An excellent resource for the “Endo Diet” approach is Dian Shepperson Mills’ “Endometriosis: Healing through Nutrition” book. Symptoms related to impurities, toxicities, and environmental exposures that can wreak havoc on the hormonal and immune response through food choices can potentially be alleviated through a nutritional approach. Dietary measures also work well on those with related GI symptoms.
Another excellent resource secondary to the above is “The Natural Endometriosis Treatment Program” by authors Worwood and Stonehouse. It is a good review of naturopathic ways in which the disease can be managed. "Nature Cures" is the belief behind naturopathy, and it has been shown anecdotally among Endometriosis patients to offer great benefits towards relief. It is a practice based solely on natural methods of healing, including (often in combination) fasting, vitamin and mineral therapy, color therapy, colonics, hydrotherapy, herbs, breathing exercises, physical exercise, massage, joint manipulation, and acupuncture, among other aspects.
Some other helpful resources to learn more include:
This is a very difficult question, and one we cannot answer with any recommendations or specifics, as we do not offer medical advice to our visitors. Hormone Replacement Therapy, particularly in the presence of Endometriosis, is a highly complicated matter. Even in the gynecologic general population, the evidence-based clinical prescribing guidelines here in the United States differ from the recommendations and rationale found in Europe and elsewhere in the world. That said, it is true that even low levels of synthetic hormones can trigger symptoms of residual disease that has been incompletely removed/ineffectively treated at prior attempts. The key to living well in spite of Endometriosis is to have the disease truly excised in its entirety from every location.
Moreover, monophasic, low-dose hormone replacement may be best for the Endometriosis patient who is in need of HRT. There is concern by some specialists that sequentials, progesterone-only, and triphasic replacement therapy all confer more potential to stimulate the residual disease. Estrogen-only, on the other hand, has significant risks that may be considered too high in the risk-to-benefit ratio and is also eschewed by many doctors. Progesterone-only, while perhaps of less risk, has significant side effects. Neither approach is necessarily the best option; thusly, the aforementioned low-dose combination therapy may be best for your personal scenario.
Whether it is through application of a patch, oral dosage or injection is up to you. This is all based on general information from the academic literature, of course; your own situation is unique and the exact regimen and dosages will have to be titrated by your gynecologist based on your specific needs.
Endometriosis is a leading cause of infertility, caused by several different factors. These include:
Distortion of anatomy - Endometriosis can cause chronic tissue inflammation, which in turn leads to adhesions and scars. These adhesions and scars can distort the delicate surrounding organs and even be so extensive that they literally freeze the tubes, ovaries, and uterus into place. The eggs themselves can also be trapped in the scar tissue surrounding the ovaries, in what is known as luteinized unruptured follicle (LUF) syndrome. Endometriosis is found in 63% of those patients reported to have LUF.
Hormonal factors - In his book, "Miracle Babies and Other Happy Endings for Couples with Fertility Problems," renowned fertility expert Mark Perloe, M.D. wrote: "it is hypothesized that the prostaglandins (hormones) secreted by the active, young endometrial implants or other chemicals secreted by white blood cells may interfere with the reproductive organs by causing muscular contractions or spasms. The tube may be unable to pick up the egg, and the stimulated uterus may reject implantation. In addition, sperm motility may be adversely affected along with the ability of the sperm to penetrate into the egg. Although the mechanisms are not fully understood, Endometriosis may also result in anovulation (17%), cause a luteal phase defect interfering with implantation, or cause a luteinized unruptured follicle. Some researchers suggest that the woman's body may form antibodies against the misplaced endometrial tissue. The same antibodies may attack the uterine lining and cause the high spontaneous-abortion rate: up to three times the normal rate. Fortunately, removing the disease with medication or surgery will reduce this risk to normal. The normal tissue surrounding the Endometriosis implant becomes puckered and ischemic (suffering from lack of oxygen), causing pain similar to that from a heart attack. Attacked over a prolonged period, the fallopian tubes may become inflamed and swell shut. Blocked by adhesions, the tubes can no longer provide safe passage for egg, sperm, and embryo. Ectopic pregnancies become a real danger: up to 16 times more likely than the normal population (16% vs. 1%)."
Dr. Perloe goes on to discuss follicular phases in patients with Endometriosis, noting that "the follicular phase may be shorter in patients with the disease. Subsequently, the estradiol (most powerful form of estrogen) levels may be lower, and a blunted LH surge may be seen. Progesterone levels and luteal phase endometrial biopsies, however, are normal." Interestingly enough, Dr. Perloe notes "women with subtle ovulatory dysfunction are more likely to have infertility, and it may be that infertility or an abnormal hormone profile increases the likelihood of Endometriosis."
Peritoneal Effects - in women with Endometriosis, studies have shown there is an increased volume of peritoneal fluid, and peritoneal macrophages (scavenger white blood cells) are increased both in number and activity. Cytokines (white blood cell chemical messengers) are also all increased. These may adversely affect sperm oocyte interaction, sperm mobility and survival, and oocyte pickup. In addition, serum samples obtained from women with Endometriosis were found to be embryotoxic in mouse embryo cultures 78% of the time, versus 20% in women without Endometriosis.
In a landmark study published in Fertility & Sterility, Dr. Bruce Lessey and his colleagues took peritoneal fluid from women with infertility related to Endometriosis, as well as from women without the disease, and injected the fluid into female mice. The mice that had received fluid from healthy women had a normal pregnancy rate. However, the mice that had received fluid from infertile women with Endometriosis "had a much lower pregnancy rate." In prior research, investigators had found that some women with Endometriosis are missing proteins known as alphav-beta3 and leukemia inhibitory factor. These proteins, found on the uterine lining around day 20 to 28 of the menstrual cycle, seem to play a role in helping the embryo stick to the womb, explaining why women without the proteins have fertility problems.
Immune System - patients with Endometriosis show decreased nature killer cell function, and decreased reactivity to transplanted endometrial tissue. In addition, Complement, an immune component that breaks apart abnormal cells, is elevated in patients with Endometriosis.
These are just common findings in Endometriosis-related infertility research. There is, of course, the “unknown” reasons exist as well. There is, fortunately, much research being done into this realm. There is hope, however…infertility is largely treatable in Endo patients. Approaches include:
Surgery - surgical destruction of the disease has been shown to improve fertility rates in all stages of disease. The highest success rates come through surgical excision, the gold standard practiced by Endometriosis specialists around the world.
Medical Therapy - multiple studies have reported a 4-5 times improvement in fecundity (monthly chance of conception) with empirical treatment, super-ovulation with either clomiphene or injectable gonadotropins (Humegon, Metrodin, Pergonal) combined with intrauterine insemination. Talk to a qualified reproductive endocrinologist for more detail on what might be right for you.
Medical Therapy Combined with Surgery - medical therapy may be combined with surgery. Reportedly, this approach increases the chances for women with severe Endometriosis to become pregnant. Some physicians, however, feel that since the highest levels of fertility immediately follow surgery, postponing ovulation with postsurgical medical treatment may rob you of your best chances for pregnancy. As well, medical suppressives are contraindicated in pregnancy, thereby delaying conception attempts.
The Foundation’s literature reflects our mission of helping those who “suffer from this disease while actively working to find a permanent cure.” We regret any misunderstanding that may arise as a result of this statement. To expand on this topic, “cure” by scientific definition literally – and simply - means, “5 or more years symptom-free”, and it is in that singular context that the word is ever used by our Foundation. While excision surgery is the gold standard and it is important to convey the message that early detection and efficacy of treatment can improve a patient’s life, “cure” should never be construed as the universal outcome, even in the hands of the best surgeon. Long-term relief is certainly possible at any stage of disease when early intervention and gold standard treatment are rendered at onset.
Too many patients have been subjected to repeated, ineffective surgeries and harmful medical suppressives or other useless treatments, needlessly. It is this vicious path that we seek to interrupt through our work, and hope that one day we will find a true, definitive cure.
What a wonderful effort on your part to help raise awareness about this disease! We are delighted to assist you in your project. Regrettably, we do not have any EFA representatives outside of our headquarters in NY. However, we will happily help you with finding a patient locally whom you can interview, as we have extensive contacts in the global Endometriosis community. As well, we’d be delighted to provide you with authoritative information about the disease for inclusion in your project through email, phone interviews and other means of communication. Should it become feasible for you to visit us in NY, we’d be happy to accommodate your request.
Endometriosis.org has a number of resources available for endometriosis patients all over the world; contact their organization to connect with others in your area who share your passion.