Thursday, January 2, 2014

Effective endo surgery and treatment- what to look for

"When we say we want effective endo surgery, we are looking at a desire for prompt diagnosis, compassionate understanding of the severity of pain, and skilled removal of disease." -Nancy Petersen

Below is a post by a well known endometriosis advocate which includes things you would want to look for or ask a physician about when finding a doctor to treat your endometriosis.

"Nancy Petersen here:

Recently when I posted on this board that less than 100 out of the 52,000 gyns in the US had been identified as doing effective endometriosis surgery, I heard from a group of gyns who were offended by the comment. Yet as we discussed my comment, what came out were a variety of comments that support my position. They knew of "subtle appearances" and indicated that guided their practice. But some do not operate on colons, bladders, ureters or diaphragms nor did they have consultants to assist with disease in this area. Some did not feel removal of mild disease was even warranted. Still some do not operate in the lower pelvis, do not refer for pelvic pt, do not refer for pelvic pain management and despite the signs and symptoms of peritoneal inflammation do not believe in pain medicine to assist with coping of peritoneal quality pain. (bloating, paleness, severe pain, slowed bowel, nausea, restlessness, rebound tenderness or painful pelvic exams). Endo causes peritoneal inflammation and there is not a med student or nursing student on the face of the earth who have not been taught to recognize peritoneal signs and symptoms. Most would treat it aggressively. Some dismiss it as just her period. Try living with appendicitis constantly, or a dozen grains of sand in your eye for a lifetime.

To relieve pain, all disease must be removed. One has to know not only what it looks like, but where it is found. I was surprised to hear so many physicians will see it as a disease of the ovary, but statistically, the ovaries are 7th and 9th in order of frequency of involvement, not first. So knowing where disease is found is a big step toward being effective surgically. Additionally, having either surgical certifications to operate on all areas endo is found, or a stable of consultants able and willing to do so is another huge factor in outcomes. Recognizing endo lies beyond the pelvic cavity is also major.
Today in the support groups nearly every day, I hear from women who have been castrated (total hyst) and yet have endo type symptoms. Yet they are told over and over there is no way endo can be present after a hyst. Yet there are a number of studies that show us endo can and does persist after hyst if it too has not been removed. Too often the hyst was done to treat the endo. (without excision of endo implants elsewhere). There is ample evidence that removing normal tubes, ovaries and uterus does not ease endometriosis pain nor does endo dry up and go away after castration. There are good reasons to do a hyst, but endo is not one of them, and the long term impact of hysterectomy is not offset by estrogen replacement when it comes to bones and heart. (as I understand it).

What women seem to want is compassionate understanding of how severe the pain is, to not be told medical therapy treats endo (we know it doesn't), to not be hysterectomized for endo treatment when removing lesions skillfully works much better. If their doctor cannot do skilled excision surgery, they express a desire for referral for pelvic pt to a certified women's health therapist, and or to a surgeon doing skilled removal of disease.

Pain management may lead to dependence, but rarely abuse, and it often allows women to get up off the couch, put their heating pad away, and get back into life.
When we say we want effective endo surgery, we are looking at a desire for prompt diagnosis, compassionate understanding of the severity of pain, and skilled removal of disease. This comes out in the discussions every day, multiple times a day, and is critical for the industry to begin to understand. Drugs do not treat endo, most of the side effects are unpleasant to say the least, and the altered hormonal states unacceptable to most."

*From the Endometriosis Research Center (a wealth of information): Frequently involved areas of endometriosis are "the lower areas of the pelvis are first, cul de sac, pelvic side walls, uterosacral ligaments, bowel, rectum, bladder, ureters ."

Q: Why excision?
A: "Large, long-term, prospective studies and a placebo-controlled, randomized, controlled trial suggest that laparoscopic excision is an effective treatment approach for patients with all stages of endometriosis. The result of such laparoscopic excision may be improved if affected bowel, bladder and other involved structures are also excised. SUMMARY: Laparoscopic excision is currently the 'gold standard' approach for the management of endometriosis, and results may be improved with careful use of appropriate techniques and suitable adjuvant therapies."

"...All the teenagers received “complete excision” (defined as above) by an expert and experienced surgeon. They were followed for up to 5 years, the mean interval being 2 years. Overall the pain scores and quality of life (perhaps more importantly) improved significantly. The rate of recurrent or persistent endometriosis on second-look laparoscopy was zero. This data indicates that complete excision is an important part of the management plan for pain. More importantly perhaps, is the implication that there is a potential for complete eradication of disease."

A case in point:

"...A case in which CO2 laser ablation of endometriosis that had been causing deep dyspareunia did not alleviate symptoms. Because those symptoms persisted, the patient was referred to our center, where a second laparoscopy revealed deep nodules of endometriosis, 1 to 2 cm in diameter, extending from the right and the left uterosacral ligaments deep into the perirectal space, bilaterally.

"As the bottom panel of FIGURE 5 shows, excised nodules were deep and large; neither laser nor electrosurgery would have been able to ablate or devitalize the deep endometriosis at the base of these 2-cm nodules...

"FIGURE 5 Deep nodules present a surgical challengeThese nodules of endometriosis on the right and left uterosacral ligaments (panel A) did not respond to CO2 laser ablation. Upon progressive resection, the implants were found to be deep, extending into the perirectal space (panel B). (See also VIDEO 3, resection of endometriosis from the left uterosacal ligament, close to the ureter.)FIGURE 6, illustrates endometriosis overlying the bladder and left ureter (see also VIDEO 4). Ablation of endometriosis in these areas may be inadequate if it is not deep enough, and dangerous if it goes too deep. As FIGURE 6 shows, excision assures the surgeon that the entire lesion has been removed and that underlying vital structures have been safeguarded."[sViewPointer]=1

Q: Why an expert?
A: "Excising deep and invasive endometriosis whilst preserving the health and functionality of surrounding organs can be extremely challenging...Griffiths comments: 'Endometriosis is non-malignant, but it is far from benign. It can have devastating health consequences for a woman, such as losing a kidney or a section of bowel or becoming infertile. There is a continuum from benign to malignant, and our understanding of endometriosis at the molecular level may open opportunities to help us understand metastatic cancer, and vice versa.' Cancer and endometriosis are very similar, both have endometrial cells that are able to migrate, vascularize and invade other tissues, some quite far away from the uterus. Griffiths explains: 'Through cell and tissue engineering we can begin to understand the behavior of these cells, such as the pathways they follow and why. That will help us develop therapies targeted precisely at the sub-cellular factors that lead cells astray.' Griffith and her team are developing research models that allow scientists to manipulate constellations of the factors involved in endometriosis, such as cytokines of the immune system, whilst observing their roles in the disease process. Endometriosis can affect any pelvic or extra-pelvic organ and when it occurs beyond the reproductive organs it generally affects the bowel or bladder but it has also been discovered in atypical sites (Virtual Poster 414), like the lungs (Virtual Posters 406 and 418)."

"We do not claim that surgery is always a ‘cure’ for endometriosis, nor that the disease cannot recur or be overlooked. However, we do believe that who performs the surgery and how it is performed impacts both the long and the short term success of surgical treatment. On the other hand, modern-day optics at laparoscopy and a well-trained eye have allowed the disease to be detected or seen in a way that has not been possible before [19]. Moreover, an expert surgeon can be expected to remove detectable disease in its entirety, even when found over vital organs.
Taken together, the data suggests that there is a potential to remove all relevant disease."

Q: It's only minimal or superficial endo, so it shouldn't be causing that much pain, right?
A: Wrong. "Any amount of endometriosis can cause pain, and the disease does not need to be advanced to cause significant symptoms.  Likewise, higher stage (3 and 4) disease may cause little to no symptoms in some women.  Situations vary; moderate growth can trigger intense pain in some women while advanced growth causes less severe pain in others. Every woman's situation is unique and therefore expert medical evaluation is absolutely essential." 

"Endometriosis stage in the current classification was not related consistently to pain symptoms. The presence of vaginal lesions was associated frequently with severe deep dyspareunia. Dysmenorrhea and nonmenstrual pelvic pain were assessed with equal accuracy by a linear analog and a multidimensional scale."

Q: Is endometriosis associated with other conditions?
A: Yes. "Women with endometriosis are at increased risk for a host of other diseases including chronic fatigue syndrome, multiple sclerosis, lupus, underactive thyroid, and rheumatoid arthritis,
according to new government findings....Compared with the general population of women, Stratton and colleagues found that women with endometriosis were more than 100 times as likely to have chronic fatigue syndrome, seven times as likely to have disease related to underactive thyroid, and twice as likely to have the muscular disorder fibromyalgia.

"Autoimmune inflammatory diseases such as lupus, Sjogren's Syndrome, rheumatoid arthritis, and multiple sclerosis were also more common in women with the endometriosis, as were allergies, asthma, and eczema. Some 61% of the women surveyed had allergies, compared with 18% of the U.S. population, and 12% of them had asthma compared with 5% of the U.S. population. And in endometriosis patients with another endocrine disorder or a chronic pain or fatigue syndrome, 72% and 88%, respectively, had asthma. The findings should serve to alert patients and their doctors to the link between endometriosis and diseases known or suspected to be associated with immune disorders, Stratton says. 'If a woman has endometriosis, she should probably be screened for other autoimmune diseases,' she says. "And if she has an autoimmune disease and pelvic pain, especially at a young age, she should be screened for endometriosis.' "
"Women with endometriosis frequently suffer from autoimmune inflammatory diseases, hypothyroidism, fibromyalgia (FM), chronic fatigue syndrome (CFS), allergies and asthma," lead author Ninet Sinaii, from the National Institute of Child Health and Human Development in Bethesda, Maryland, says in a news release. "These findings also suggest a strong association between endometriosis and autoimmune disorders and indicate the need to consider the co-existence of other conditions in women with endometriosis."  

Q: What else could be contributing to my chronic pelvic pain?
A: Endo is often accompanied by other conditions such as:
1. pelvic floor dysfunction (and other musculoskeletal problems like levator ani spasms)         
2.  interstitial cystitis,
3.  irritable bowel syndrome,
4.  pelvic congestion syndrome,
5.  adhesions,
6.  adenomyosis,
7.  vulvodynia,
8.  ovarian cysts,
9.  fibroids,
10. pudendal neuropathy,
11. pelvic inflammatory disease
12. and several others.

Q: Can pelvic physical therapy help?
A: Yes, most especially if your endometriosis has been removed. If it hasn't then the constant source of irritation and inflammation as well as adhesion formation will keep you from progressing as far.

"Endometriosis can be associated with pelvic floor dysfunction (PFD)....
Physical therapy helps most or all of the symptoms previously described through techniques such as myofascial trigger point release, scar tissue and connective tissue manipulation of the internal and external pelvic, abdominal, hip and back structures. Women with endometriosis commonly have trigger points in the abdominal wall as well as the pelvic floor, back and gluteal (buttock) muscles....

The overall goal of treatment is for the patient to learn how to relax (or, down train) the muscles, which in turn helps break the pain cycle. This, in conjunction with the manual therapy described previously will help the muscles to return to their normal resting tone. Women with endometriosis should try to maintain their energy level by participating in some cardiovascular activity. The physical therapist will also guide the patient on various exercises, stretches, massage and relaxation techniques that can be performed at home. Once the muscles and tissue structures return to their normal tone, core stabilization exercises can be added to maintain the proper muscle function. Such exercises will give the patient the support needed for activities such as walking or sitting and decrease the likelihood of injuring themselves. It is important for women with endometriosis to see a properly trained physical therapist to determine whether or not they would benefit from this type of treatment. However, not all physical therapists are trained in treating pelvic floor dysfunction and symptoms related to endometriosis. Various organizations such as the APTA Section on Women’s Health, International Pelvic Pain Society and the Endometriosis Association, would be able to assist you in finding a physical therapist to meet your specific needs.
We also suggest asking the following questions:

• What patient population do you treat?

• What percentage of your patients are diagnosed with endometriosis?

• How often do you treat the pelvic pain patient population?

• What techniques do you use (such as manual therapy and biofeedback?)
• Do you assess all of the pelvic muscles, including the internal pelvic floor muscles?"
P.S. Also from an endometriosis discussion group is this list of things to ask your doctor:
"Who did you train under and for how long?
How is pain managed post op when I'm home/at the hotel?
How are the surgeries specifically done?
How many incisions would you use? Would you reuse an old one like the belly button? Why or Why not?
Does the doctor do laser vaporization or does he/she excise the endometriosis and the adhesions?
What do you use to cut the endo out?
What happens to all of the endometriosis and adhesions that are excised?   Do they ALL get sent to pathology?
How many endometriosis surgeries does the doctor do in a week/month/year? 
How many of those patients are stage 4 endo? 
On average, how long time wise are the doctor’s surgeries for endometriosis?
Who would be assisting?
Would you be calling my husband/partner/family member/friend in the waiting area from the Operating Room to give them a status update and/or permission to remove organ(s)?
Does the doctor take care of all the endometriosis and adhesions?
Does he/she preserve organs?
Does the doctor take his/her time in the surgery to cut out all of the endo and adhesions that is there no matter how complicated the case is?
Immediately post op, will you be sitting down to talk to my husband/partner/family member/friend to talk about the surgery? Can they record it on a digital voice recorder?
Does the doctor track the results of his/her endo patients?   
How many patients of his are pain free after 6 months, 1 year, 3 years, 5 years from endometriosis?
What is the rate of recurrence of endometriosis for his patients? 
Does the doctor treat other types of patients as well or are all of his/her patients endo patients?
What hospital does the doctor do his/her surgeries at?
Can I get a copy of the doctor’s CV? *
Is he/she board certified?    Through when?   **
Has the doctor had any complaints against him/her?      If so what were they and how were they resolved?
Does he/she have any lawsuits in the past 25 years?        If so what were they and how were they resolved?
What happens if I have a question after my surgery and it's after hours?
How soon can an appointment be made?
Does the doctor have an email address to send any additional questions to?
*CV is the doctor’s resume.   Every doctor should have one listing where they list their medical internship/residency where they got their medical degree, any journal articles they have written, and more
**board certification means that the doctor has had some extra training in his/her field.  You can verify board certification at .  You’ll need to set up a log in account but it is worth it to check up on your doctors. 
You can check up on the doctors to see if they have had any disciplinary actions taken against them, etc.  You’ll head to and click on your state for more info."