Ceana Nezhat, MD

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Endometriosis - defined as the presence of endometrial-like glands and stroma in any extrauterine site - is a common disease occurring in 7-10% of all women, and is often associated with chronic pelvic pain and infertility. Apart from these significant individual problems women with endometriosis and their families may face, this disease has a significant impact our society due to its chronic nature 

The symptoms of endometrioses are variable and its course is often unpredictable. While some women may be asymptomatic, the most common manifestations are pelvic pain, particularly with periods, dispaureunia, pain associated with bowel movements, and dysuria or hematuria in cases of bladder involvement.  Despite significant improvements in understanding of this disease, the pathogenesis of endometriosis remains unclear. There are several theories that were suggested; most prominent includes theory of retrograde menstruation associated potentially with genetic susceptibility for the disease. Also theories of hematogeneous and/or lymphogenic spread, genetic link, or defects in immunocompetency have been suggested

The link between endometriosis and ovarian cancer is well recognized and has perplexed physicians for a long time 

. Epidemiological studies have suggested a specific link with endometrioid and clear-cell ovarian cancers, but no firm evidence established endometriosis as an ovarian cancer precursor lesion. Several lines of clinical evidence have supported the observation that non-serous ovarian carcinomas such as endometrioid and clear-cell carcinomas arising from atypical endometriotic foci have a higher likelihood of early diagnosis, as the associated endometriosis can cause pelvic pain or infertility requiring specialized gynecologic care including diagnostic laparoscopy. Deligdisch et al. reported a series of 76 cases of stage I ovarian carcinomas and documented that non-serous carcinomas (54/76) were diagnosed because of the associated symptoms including pelvic pain associated with endometriosis or vaginal bleeding associated with hyperestrogenism and endometrial pathology

. Interestingly they also found that serous carcinomas were frequently found in asymptomatic women with breast cancer diagnoses 

. These and similar observations support the emerging dual model of ovarian carcinogenesis. According to this model, Type I cancers are low grade, slowly developing ovarian carcinomas (including endometrioid, mucinous and low grade serous) associated with KRAS, BRAF, PTEN and B-catenin mutations and often associated with endometriosis. Type 2 is high-grade serous carcinomas associated with TP53 mutations that develop rapidly, are more aggressive and their origin is now thought to be tubal epithelium 

In the recent remarkable study reported in Lancet Oncology, the team of researchers from the Ovarian Cancer Association Consortium (OCAC) performed pooled analysis of 13 case-control studies and confirmed that women with self-reported history of endometriosis have significantly increased of clear cell carcinoma (odds ratio 3.05) and endometrioid ovarian cancer (odds ratio 2.04) 

. In addition the authors show, for the first time, that endometriosis is associated low-grade serous ovarian carcinomas, doubling its risk in women with endometriosis

.  However, there was no association between endometriosis and high-grade serous carcinomas or other subtypes of ovarian cancer in the study.

Taken together these findings will have considerable clinical implications and may affect the ways we think about strategies for ovarian cancer screening and prevention. In particular, the emerging knowledge of the link between ovarian cancer and endometriosis gives us an unprecedented opportunity to develop comprehensive screening plans to aid in the early detection and prevention of specific types of ovarian cancer in women with endometriosis. Such planning should include:

1) Identification of all women with endometriosis – either surgically documented or self-reported by symptoms;

2) Careful  follow up of ovarian presumed endometriomas by imaging studies, perhaps by MRI, for any characteristics changes such as mural formation;

3) Complete surgical resection of all endometriotic foci in women undergoing surgical treatment and tissue evaluation of ovarian endometriomas to rule out malignancy;

4) Hormonal treatment aimed at reducing the risk of cancer in high-risk women.

While it is well known that most women with endometriosis do not develop ovarian cancer, the women and their physicians should always discuss these new findings, carefully document and discuss any new symptoms and formulate plan for regular evaluations and treatment.


1. Simoens S, Hummelshoj L, D’Hooghe T. Endometriosis-cost estimates and methotologic perspective. 

 2007;13:395-404.
2. Burney RO, Giudice LC: The Pathogenesis of Endometriosis. In Nezhat C, Nezhat F, Nezhat C, (eds): Nezhat’s Operative Gynecologic Laparoscopy and Hysteroscopy. 

New York, New York: Cambridge University Press

, 2008:251-7.
3. Munksgaard PS, Blaakaer J. The association between endometriosis and ovarian cancer: a review of histological, genetic and molecular alterations. 

 2012;124:164-69.
4. Nezhat F, Datta MS, Hanson V, et al. The relationship of endometriosis and ovarian malignancy: a review. 

 2008;90:1559-70.
5. Deligdisch L, PÃ©nault-Llorca F, Schlosshauer P, et al. Stage I ovarian carcinoma: different clinical pathologic patterns. 

 2007;88:906-10. 6. Levanon K, Crum C, Drapkin R. New insights into the pathogenesis of serous ovarian cancer and its clinical impact. 

 2008;26:5284-93.
7. Pearce CL, Templeman C, Rossing MA, et al. on behalf of the Ovarian Cancer Association Consortium. Association between endometriosis and risk of histological subtypes of ovarian cancer: a pooled analysis of case-control studies. 

Articles

Emerging information on the link between ovarian cancer and endometriosis gives us an unprecedented opportunity to develop comprehensive screening plans for early detection and prevention of specific types of ovarian cancer.

Endometriosis and Risk of Ovarian Cancer: An update


 A fibroid is a benign tumor of the uterus. Various terms are used to refer to the tumor, such as fibromyoma, myofibroma, leiomyofibroma, fibroleiomyoma, myoma, fibroma, and fibroid. Of these, fibroid is the most common term, although myoma is more accurate.


 The incidence of fibroids is uncertain, but they are the most common tumors of the uterus and female pelvis. It has been estimated that one out of every four to five women older than 35 years of age has a uterine fibroid. It is also well documented that patients of African descent have a higher incidence of fibroids than Caucasian women, although the reason for this is not known. Leiomyomas are responsible for about one-third of all hospital admissions for gynecological services.


 The exact cause of uterine fibroids is not known, but it has been suggested that they arise from persistent small embryonic germ cells. Most studies have shown that the hormones estrogen and progesterone are involved in myoma growth. Most of the tumors occur during the reproductive years and usually become smaller after menopause. Oral contraceptives may cause myomas to enlarge. Older women who have never had children may have an increased risk of developing myomas. Women who have given birth have a decreasing risk of developing these tumors. A woman who has had five term pregnancies has only one-fifth the risk of developing a fibroid when compared to a woman with no children. Interestingly, the risk is reduced in women who smoke but increased in obese women.


 Most fibroids, even large ones, do not cause any symptoms. Indeed, most are discovered incidentally during a routine gynecological exam. Distortion of the normal abdominal wall contour due to a large tumor may also be discovered during self-exam. Patients with symptomatic fibroids typically have excessive or prolonged menses. This may sometimes cause anemia due to the large amount of bleeding. After bleeding, pressure is the second most common symptom of myomas. Pressure on the bladder can produce urinary frequency and urgency and, occasionally, inability to urinate. Pressure on the rectum may cause constipation. In cases of extremely large fibroids, pressure on the pelvic vessels may cause edema or varicose veins in the legs. Kidney symptoms are also possible if the fibroid extends upwards.

, a feeling of heaviness in the pelvis, or pain upon intercourse are also common symptoms. The pain may be dull or sharp, but is usually intermittent. Occasionally, fibroids cause dysmenorrhea (pain during menses). Myomas may also be related with infertility, especially if the myoma distorts the cervix enough that it becomes occluded. Pregnancy causes growth in size of any preexisting myomas, potentially causing an otherwise asymptomatic myoma to become symptomatic.


 In many cases, treatment is not necessary, particularly if there are no associated symptoms, if the tumors are small, or if the patient is postmenopausal. However, any patient with a diagnosed myoma should be carefully examined every three to six months to check for any unusual growth. If the patient is symptomatic, the myoma should be treated. Medical treatment, such as GnRH analogues, are available. They are effective, causing most myomas to shrink after a few months. Unfortunately, the myomas regain their original size several months after treatment is discontinued. Thus, surgery is still the best treatment option Common surgeries consist of either
 myomectomy (removal of the myoma alone) or hysterectomy (removal of the uterus and any associated myomas).

Traditionally, the surgeries were done by laparotomy (making a large abdominal incision) and excising the appropriate tissue. However, recent advances in surgical technology now allow most patients to be treated with new minimally invasive techniques, consisting of laparoscopic myomectomy or laparoscopic hysterectomy. Laparoscopic surgery

 is performed via three or four small incisions in the abdomen. The myomas are then removed through these incisions by first cutting them into small pieces inside the abdomen, then removing each small piece. This has many advantages, because it leads to shorter hospital stay (about 24 hours, compared to three days after laparotomy) and less postoperative pain (due to a smaller incision, which leads to less scar tissue). It is also a good choice for any women desiring children in the future, because it causes less pelvic adhesions.

For further information regarding laparoscopic removal of myomas, e-mail 

Endometriosis is a disorder in which abnormal growths of tissue, histologically resembling the endometrium, are present in locations other than the uterine cavity. Although endometriosis was described in detail more than 100 years ago, it continues to be one of the unsolved, enigmatic diseases affecting women. It is often called "the career woman's disease," because it occurs almost exclusively in women of reproductive age. Endometriosis is usually confined to the pelvis in the region of the ovaries, uterosacral ligaments, cul-de-sac, and uterovesical peritoneum.

The development and extension of endometrial tissue in the uterine muscles is termed adenomyosis. It can also affect the bowel, especially the rectum, colon and appendix. Endometriosis is one of the most common reasons for pelvic pain and infertility.


 There are three main theories as to the cause of this elusive disease, but the exact etiology remains a mystery. The most common and scientifically valid theory is a combination of immunological alteration and retrograde menstruation- direct transportation of viable endometrial cells through the fallopian tube into the pelvis which then implants in ectopic sites. Other suggestions are coelomic metaplasia, which proposes that peritoneal epithelial cells change to endometrial cells. The last theory is lymphatic spread/mechanical transport, where the cells are picked up by the lymphatic or circulatory system and ferried about the body.


 Endometriosis is a common and important health problem. Its exact prevalence is unknown because surgery is required for its diagnosis, but it is estimated to be present in 10% of all reproductive age women. It is seen in 1-2% of women undergoing sterilization, in 10% of hysterectomy surgeries, and in 16-31% of laparoscopies. Endometriosis has a higher incidence among Caucasians than among people of African descent. Some genetic influences in the development of endometriosis have been described. Studies have found that 7-9% of endometriosis patients' first-degree female relatives are diagnosed with the disease, significantly greater than the control rate of 1-2%.
 
 

Unfortunately, there is no current noninvasive test for diagnosing endometriosis. However, the typical symptoms include infertility, ovarian cysts, or chronic pelvic pain

 such as generalized vague and sometimes sharp pain; painful periods (dysmenorrhea); painful intercourse (dyspareunia); back pain; and painful ovulation. Pain with bowel movement and bladder pain can also exist. The symptoms are often related to the menstrual cycle, generally resulting from functioning endometrial tissue or scarring in the affected site. Pelvic examination may confirm suspicion. However, in mild to moderate stages of endometriosis, physical and pelvic examinations may be completely normal. Pain or bleeding from any site coinciding with menses should raise suspicions of endometriosis and lead to careful evaluation of specific anatomic areas involved such as lungs, umbilicus, previous incisions, bowel, bladder, ureters and diaphragm.


 Different hormonal therapies, such as birth control pills, progesterone, danazol, GnRH analogs, and recently RU486 have been used with some success to decrease the size of endometriotic lesions. This treatment can be used alone or in conjunction with surgery. Preoperative hormonal therapy has been shown to create a pelvic environment with much less blood flow and reduce inflammatory reaction, making surgical identification and removal of endometriotic lesions easier.

In the past, surgical treatment of endometriosis included laparotomy and hysterectomy. This was mainly due to the fact that surgeons were unfamiliar with endometriosis and how to treat it. A fairly recent improvement in technology, called operative videolaseroscopy, has revolutionized the way patients are treated for endometriosis. The advantages over laparotomy include a smaller incisional site (1/4-1/2 inch vs. 4-6 inches), shorter hospital stay (one day vs. 3-5 days) and a shorter recovery period (1 or 2 weeks vs. 4-6 weeks).

Through operative videolaseroscopy, endometrial implants can be coagulated, excised or ablated using a carbon dioxide laser or electrosurgery. Laparoscopic scissors and a laser can be used to cut lesions close to vital structures. Laparoscopic restoration of pelvic anatomy, especially at the area of the posterior cul-de-sac, is not simple and should only be undertaken by a surgeon who is familiar with performing surgery on genital, gastrointestinal, and urinary tract.

For further information on laparoscopic surgery for treatment of endometriosis, e-mail 

A fibroid is a benign tumor of the uterus. Various terms are used to refer to the tumor, such as fibromyoma, myofibroma, leiomyofibroma, fibroleiomyoma, myoma, fibroma, and fibroid. Of these, fibroid is the most common term, although myoma is more accurate.

Fibroids

   “This is Roberta Speyer reporting from the AAGL conference in Atlanta.   I’m talking to     Mary Lou Ballweg, President of the Endometriosis Association and Dr.  Farr Nezhat, Professor at Stanford University.  Farr, you’ve taken on a  new title, would you tell us about that?”
     
     

  “Yes, thank  you very much, Roberta.  Since last July, I have taken three years of  fellowship in gynecology and oncology at the Department of the  Obstetrics and Gynecology at Mount Sinai Hospital in New York.”
     
     

  “I know you’ve  been taking some ribbing about that here at the conference, Farr, that  you’ve gone back to become a fellow member.  Would you tell us a little  bit about why you did that?”
     
     

  “I am very  excited about this fellowship.  For some time it’s been in my mind that I  wanted to do this fellowship, and there were several reasons to do  that.  First of all, I wanted to expand my knowledge in  gynecologic-oncology and have a better understanding about the disease  and the application of laparoscopy in gynecologic malignancy.  So I  thought if I have a basic and deeper knowledge about this disease, I  will have a better way to use laparoscopy in this regard.  The other  reason that I wanted to do this fellowship was that I see a lot of  similarity between endometriosis and ovarian cancer.”
     
     

  “Do you see that too,     Mary Lou?”
     
     

  “What we’re seeing is that women with  endometriosis actually develop ovarian cancer.  We now have new data,  which shows that in the families of women with endometriosis there is an  8% incidence of ovarian cancer.  I hadn’t even had a chance to tell you  that yet.  I’m also looking at the data on the women themselves.   Although the average age of onset is a little bit later so that we’re  not maybe seeing it so much in our younger women with endometriosis yet  but I completely agree with Dr. Nezhat that there’s a lot of  similarities.”
     
     

  “So you feel that this is also going to help you tie back into your practice with the treatment of endometriosis?”
     
     

 “That’s right,  considering working with women with endometriosis has been our primary  goals and practice.  So I think that doing this oncology fellowship will  give me a better understanding and also be able to, hopefully, do some  more research in both ovarian cancer - which is unfortunately a deadly  disease and pelvic endometriosis - which is a very devastating chronic  pain condition.”
     
     

  “We’re  certainly looking forward to being able to interview you in more depth  about that as you progress further into your fellowship.  Tell me what  you both think about the discussions and presentations you’ve seen here  at this Congress in regards to endometriosis.     Mary Lou, would you like to give us a little bit of your opinion and  maybe the two of you could discuss it, and I’ll just sit back?”
     
     

  “Yes, someone just said to me at the booth  that this group - the AAGL - seems to have flattened out, and I said -  no, I don’t think so.  I think what’s happened, and I don’t know if you  agree or not, is that in North America the revolution in operative  laparoscopy has occurred for the most part.  The Nezhats were leaders in  that, of course, and now it’s being taught worldwide, and there’s still  lots of people who need to refine their skills but it’s not quite the  revolution that it was ten years ago.  Now, everybody agrees that this  is the best way to do surgery.  It’s not the big argument it was ten  years ago that we should still be doing     laparotomies.”
     
     

  “People like  things when they’re controversial and at the cutting edge.  Now that  we’re agreed it’s the gold standard, where do you think we’re going to  take it from here, Dr. Nezhat?”
     
     

 “Several years  ago, I remember I came to this society and we were practically the first  people which presented data regarding the treatment of severe pelvic  endometriosis laparoscopically.  Now you can see from different groups -  not only in this country where most of the laparoscopic treatment of  endometriosis is done but from the other countries - that they have used  laparoscopy for severe endometriosis, and they presented their data.   As     Mary Lou was saying, we see other eastern European countries, the  far east countries, and some middle eastern countries using laparoscopy  not only for diagnosis, which now nobody has any question that it should  be a standard tool for diagnosis of this condition but they’re using it  more and more, not only for treatment of the mild endometriosis but for  severe and complicated endometriosis.”
     
     

  “Do you see new  technologies emerging at all, perhaps, like the transvaginal  hydrolaparoscopy or other ways for diagnosis or do you think it’s just  going to stick with the laparoscopic diagnosis in the future?”
     
     

  “Hydrolaparoscopy is some sort of laparoscopy,     coloscopy is too, it’s not new and it was used for many years in the  past but     coloscopy had some limitations and also some complications so it did  not become popular.  Now using the     hydrolaparoscopy, it is a new devise that they’re using the  telescope from the posterior cul-de-sac and using fluid for distilled  media and also using a video laparoscope for magnification.  So these  two combinations and having better light sources might give us a better  tool for being less invasive for diagnosis of the endometriosis.”
     
     

  “Would say that would be more applicable to early stages when you might not be going to do excision?”
     
     

 “First of all,  right now it is only for diagnosis and of course if the patient has  severe endometriosis with involvement of the posterior cul-de-sac and  posterior cul-de-sac obliteration, it is contraindicated because you’ll  have bowel perforations.  So it is definitely applicable for diagnosis  of the early cases.  However, we are still in the primary stages, and we  have to wait until more people do it and we find out what the results  are.”
     
     

  “It bears watching.  What do you think is going on here at the conference that you’ve found particularly interesting,     Mary Lou?”
     
     

  “What I find interesting is that these  techniques that were pioneered here in North America by Doctors Nezhat,     Redwine, and Harry Rich, and some of these other people are now  being enthusiastically embraced in many countries all over the world.   That’s been happening for some years but just as I was talking this  morning to a physician who does these procedures in Egypt, suddenly it  changes their perspective of endometriosis because they’re seeing it  over and over and over again.  If they’re doing laparoscopy, which they  weren’t doing much of before, suddenly it seems to them that  endometriosis is everywhere, where actually it was probably there all  along.  So what it does for us is it changes the awareness of the  disease worldwide, and people are coming to us and saying, “You were  right, you were saying endometriosis is in all these countries and now  we’re seeing it.”
     
     

  “What about the  factor that it’s still that deep incision that has to be done with  severe endometriosis, there’s still so many women that are writing to  OBGYN.net, and I know that they’re constantly barraging the  Endometriosis Association, and they’re contacting your office because  it’s difficult for them to find a skilled enough surgeon.  How is that  going to be addressed and changed?  Do you see a change in that, Dr.  Nezhat?”
     
     

 “Yes, we see  it.  First of all - you have to have knowledge of the disease, and  second of all - you have to have the skill to be able to treat this  disease adequately.  For many years we had the tool of coagulation by  laparoscopy, and we know that the coagulation for maybe very superficial  lesions are adequate but for deep infiltrating lesions you have to  eradicate the disease.  As I said, you have to have knowledge of the  disease and also the skill and you have to see it, and this can only be  acquired by the people that are seeing too many of these cases.  An  average gynecologist and obstetrician that does obstetrics and has an  office practice may not see that many cases.  If they do not see it,  they will not be able to treat it, and that’s very important.  We should  not expect too many general obstetricians or gynecologists to do that  for them.  Unfortunately you have seen here the treatment of this  disease is complications, the same way that if you do not treat the  disease, the patient may have complications from the under-treatment,  and the patient will have pain and continue to have the problem.  If  someone doesn’t know how to do it, you could have bad complications, and  I know of several deaths that have happened.  So our role as pioneers  of this technique is to teach the people not only to recognize the  disease but also to teach them that with this disease, if you want to  treat them, you have to be prepared for the bowel injuries, bladder  injuries, ureter injuries, and they have to have a backup of the other  disciplines.”
     
     

 “Mary Lou, maybe  you’d like to comment on this.  It sounds that what I’m hearing you say  is that there is still a limited amount of physicians, let’s discuss  North America and assume that that spreads out further since this is an  axis of this technology.  It is still difficult to find a treatment  center that is going to have physicians skilled enough to deal with  this.  It is getting better - is that what I’m hearing, it’s getting  better but it’s still difficult?  What then,     Mary Lou, is the responsibility of the individual because everyone  says - I want to go to somebody in my HMO.  People have financial  considerations, maybe you’d like to address that.”
     
     

  “I would like to address that because  managed care, unfortunately, has made it a lot harder.  It’s very  shortsighted on the part of managed care, if you’re going to send that  patient for surgery to someone who doesn’t know what they’re doing,  you’re just going to have them back in another surgery and another.  I  was talking to some women recently who had twenty, thirteen, and eight  surgeries.  That HMO did not come out ahead by sending them to people  who don’t know what they’re doing.  They would have been much better off  letting them be referred out to somebody who really is skilled and on  top of it.  These women are now full of adhesions and complications as  Dr. Nezhat was saying.”
     
     

  “So then it  becomes also part of the managed care medical system in our country that  is making it a little more difficult for people to get to the  physicians they need to get to.  What is the Association and what are  you, the physician’s of AAGL and the pioneers in this technology, what  are you seeing as your responsibility to help change that system?  If  I’m just a woman suffering from endometriosis out in Podunk, there’s not  much I can do to change the system.  I’m probably lucky if I can get  out of bed some mornings so how do all of us - OBGYN.net, the  Association, and the professional association of physician pioneers,  what can we do?  Is there anything that can be done, and is there  anything that is being done?”
     
     

  “What the Association is doing is trying  to educate people about the fact that you can’t just go to your average  obstetrician or gynecologist – just because he delivered your baby does  not mean he can do this type of surgery.  That’s a very hard message for  a lot of patients because they have a comfort level with a particular  physician.  Unfortunately because of managed care and having to make a  living and all, it’s also a hard message for a lot of the average, not  super-specialized gynecologists.  They’re not doing a service for the  patient if they don’t say, “This is beyond the scope of what I can do,  and you really need to see somebody who’s seeing hundreds of cases.”
     
     

 “Is it a good idea for a woman to consider even if she has to go outside her medical coverage?”
     
     

  “Absolutely, if she can swing it in some  way and usually some of the best surgeons will help find a way, the  Association will help them find a way.  The other key thing they have to  do is they have to talk to other women with endometriosis.  In any  community in North America other members of the Association will know  who is good, who to go to, and who to stay away from.”
     
     

  “So it’s networking here, very good.”
     
     

  “Yes, it’s networking, but networking with  informed consumers.  There is always people out there who have a little  bit of knowledge, and we all know a little bit of knowledge is a  dangerous thing.”
     
     

  “So you want to  avoid friends, you want to go with something that is established, and  you want to talk to other people that have been through this and had  good outcomes and bad outcomes.”
     
     

  “Dr. Nezhat, what do you think is the responsibility of the physician community to help change this managed care issue?”
     
     

 “I totally  agree with what     Mary Lou said.  I think all of us - the government, society, the  physician, and the patient all have to work together to make this  procedure work.  As a physician, we have to educate our colleagues and  teach them about this disease and about the proper treatment.  Then they  have to realize which one’s they can do and which ones they cannot do,  and if those physicians are part of the HMO’s then they could refer the  patient to the proper…”
     
     

  “So that’s the  key, if the referral comes from the physician, it can be done.  So are  we seeing a problem with those physicians wanting to let go of the  patient and knowing when to refer?”
     
     

  “This is some  of the things that were discussed at the World Endometriosis Congress  about the creation of the WES - the World Endometriosis Society was to  be able to have some ways to credential, was it not, so a physician  would know that they could refer out and there was another level?”
     
     

 “That’s right,  we frequently get patients referred from the HMO physicians that know  themselves, they trust us, they know we will take care of their  patients, and the patients that come to us are properly treated.   Unfortunately, endometriosis is a chronic and recurrent disease, if the  pain comes back; they know how to go back.  If they need a consultation,  they pick up the phone and call them and say – I now have Mrs. Smith in  my office after two years and she wants to get pregnant, what do I have  to do?  So as long as the referring physicians are educated and they  know these people are available, they will feel more comfortable to  refer their patients.  The other thing is about the patients themselves,  I think the patients should accept some responsibility for their body.   Women will go on a trip for $5,000 or $3,000 and they will buy a new  car but they have to accept the responsibilities.  This is their body  and they should not rely only on the physicians.  I’ve had a lot of  patients, and     Mary Lou knows, that have done research, campaigned, and talked to  other people, and even some of them have taken lawyers and have fought  against their insurance companies and they have won.”
     
     

  “We happen to  know one of the ladies that wrote into OBGYN.net about how she came to  you and your brothers for surgery and that you worked with her over an  extended period of time to pay for that surgery.  I think she’s still  working on it but she felt very good about that because she knew that  she couldn’t afford to do that, she didn’t have the insurance coverage  part.  So if the physician specializes in this, do you see that they try  to work with the patients?”
     
     

 “Sure, we have  done it for the past ten or fifteen years that they have been doing  these procedures.  In any aspect, I don’t want to talk about ourselves  but     Mary Lou knows that a lot of patients don’t have any money, and we  have done the surgeries for free.  Some of them have been able to pay a  small payment, and we have worked with them.  So I think the patient has  to get some responsibility.” 
     
     

  “Do you agree with that,     Mary Lou?”
     
     

  “Absolutely.  I was talking at our Atlanta  chapter on Wednesday night, and I was making the analogy that a lot of  us will do a lot of research in choosing a car or an auto-mechanic but  I’m appalled at how many, and it’s not just women but I see men doing  this too, will go to the yellow pages to find a doctor or a dentist.   Yet, I think our bodies and our lives are more important than our car or  our house, and a part of it is that people are often afraid to take the  responsibility.  If I put all my faith and trust in Dr. Nezhat, then I  don’t have to think about this.  I don’t have to realize how complicated  it is, and I don’t have to read all this.  Some of it’s just fear and  some of it is ignorance about our body.”
     
     

  “Of course, if you did that with Dr. Nezhat, it would be okay but with some people perhaps it would be a big mistake.”
     
     

  “I think part of the problem that we face  is trying to get across this concept that this is a disease that needs a  specialist.  We need the concept of an endometriosis specialist out  there, and in our current managed care environment that would help but  we’re not getting real far with it.  But there are people who really  have a handle on endometriosis, there are not enough of them, but we  need to create that specialty.  Over the long run, there may even be a  specialty that’s recognized and called that.”
     
     

  “But what I’m  hearing both of you saying is that as the situation stands now, the most  important thing that a woman can do is find a physician that is  skilled, and if she wants her medical coverage to follow her, get a  physician that will refer her to a specialist.”
     
     

  “I think the most important thing to do  first is for her to do her homework.  You can talk to a lot of  physicians, I was talking to one yesterday who was so convincing talking  about a cure rate – sorry, but we see those people after the surgeries  and they’re still not cured.  Maybe they’re afraid to go back and tell  the surgeon about this.  You really need to first do your homework, get  in touch with the Association, get in touch with other women, and really  take on board that this is more complicated then any of us want it to  be.  Then decide on a physician because even in the range of specialists  you may have a special problem that you need to be aware of that  somebody may be able to better address than someone else or maybe it’s  not a surgical approach that will work best for you or just a lot of  different issues.  So you need to have that all in line before you even  choose that specialist.”
     
     

  “Do you agree, Dr. Nezhat?”
     
     

  “So once you’ve  done that, once you’ve got it in your mind who you want to go to, you  have to go through your gate keeper.  Do you bring that information with  you?”
     
     

  “Some women do but it’s not always well received, sometimes it is.”
     
     

  “Is there a method you’ve found that would make it better received?  Just some tips for the listeners.”
     
     

  “Again, I found that our local groups -  and we have chat rooms, etc. - they will know locally how best to deal  with specific physicians.”
     
     

OBGYN.net Conference CoverageFrom American Association of Gynecological LaparoscopistsAtlanta, Georgia, November, 1998

Author | Ceana Nezhat, MD

Articles

Endometriosis and Risk of Ovarian Cancer: An update

Fibroids

Endometriosis and the Relationship to Ovarian Cancer