Endometriosis is a chronic illness that affects almost 200 milion people around the world. Endometriosis patients face a lot of difficulties from delay in diagnosis, lack of specialists to gaslighting and neglect. Discovered hundreds of years ago, endometriosis was found in every organ in the human body. Included by NHS UK in top 20 of the most painful illnesses, endometriosis can also affect fertility. Dr David Redwine, has kindly agreed to answer a few questions about endometriosis.
In terms of diagnosis, you mentioned a lot of times the importance of the pelvic exam. What can one find from a pelvic exam and how should it be done?
Dr. Redwine: There are two different techniques that should be used during pelvic exam. The most important is pelvic touch, which was known to the French in the mid-1800s. Pelvic touch is done with just the two fingers of the internal examining hand inserted gently into the vagina. The fiingertips are advanced to the end of the vagina and the tip of the middle finger is used to gently touch the cul de sac, left uterosacral ligament, and right uterosacral ligament. These are the three most important areas to touch because they are easily reached and endometriosis occurs most commonly in these areas. Pelvic touch is done while watching the patient’s face. The slightest grimace suggests endometriosis. Tender nodularity will produce a marked grimace and this finding virtually guarantees that deep endometriosis is present. In 1873, Dr. Robert Barnes noted that exam during menses could provide additional information since swelling and tenderness might be worse.
The second technique is the bimanual pelvic exam. This is the ‘traditional’ exam where the examiner has fingers within the vagina as well as pressing on the lower abdominal wall with the outside hand. This technique is usefull for determining the size, shape, and tenderness of the uterus. You can even palpate the area of the bladder. It can also be helpful in finding ovarian cysts if they are large enough. But since so much tissue is pressed betwen the fingers, it’s like trying to find a pear underneath a pillow – you know the approximate size and shape of things in a fuzzy way. If more detail is necessary, some type of scan might be ordered.
listen to your patient, but if you don’t listen to your patient, listen to me
Dr David Redwine
Laparoscopy vs imagistic methods of diagnosis. Again in Romania, maybe in other countries as well, laparoscopy is no longer considered a method of diagnosis for endometriosis. For example, patients are told that they don’t need surgery to receive their diagnosis, just do an MRI. What is your opinion on this? Does the MRI exclude surgery or one does not exclude the other?
Dr. Redwine: Most cases of endometriosis are stage I. In other words, there is no deep disease nor ovarian cyst. These patients have only superficial disease and it is universally accepted that surgery is the only method of reliably detecting superficial disease because superficial disease is too flat to be detected on any scan. Resection of superficial disease results in pain relief as shown by a randomized controlled trial in 1994. Therefore a policy that requires MRI before diagnosing endometriosis will miss most patients with the disease and condemn them to suffering and rejection by the medical profession. I don’t have to tell you – but that is inhumane and crazy.
Endometriosis stages and pain. Why does one with the minimal disease have more pain than one with severe disease? And why such a variety of symptoms?
Dr. Redwine: All forms of endometriosis can hurt. Patients can have different pain thresholds. Patients can have infinite varieties of endometriosis in terms of pelvic location, visual appearance, appearance under the microscope, symptoms, and malignant potential. I never thought much about the minimal vs severe disease difference of symptoms. I presume it is related to genetics. But I wonder if patients with undetected superficial disease have to be persistent, so after endometriosis is finally diagnosed, their persistence appeared to be increased pain as observed by their surgeons.
Endometriosis symptoms are reasonably geographically specific. In other words, if the right diaphragm is involved, there will be right chest and shoulder pain. If the cul de sac and uterosacral ligaments are involved, painful intercourse and painful bowel movements will result. However, chronic inflammation such as occurs with endometriosis also produces chemicals called cytokines that get into the blood stream and circulate to every cell in the body. These circulating cytokines like interleukins and tumor necrosis factor can cause more widespread flu-like symptoms including headaches, myalgia, and fatigue. Such widespread symptoms are more common in deep disease.
All hormonal treatments are based on the twin fantasies that pregnancy and menopause physically kill endometriosis (not just relieve symptoms)
Dr David Redwine
Is it possible to develop endometriosis symptoms at a later stage in life i.e late 30, 40? Do hormones, environment, lifestyle plays a role in developing symptoms and if we make lifestyle changes will it help with symptoms management?
Dr. Redwine: Some patients are good at ignoring or denying symptoms for decades. So the answer to the first question is ‘yes’. Estrogen plays an obvious role in symptoms because estrogen stimulates Mullerian tissue. Endometriosis can make its own estrogen within the lesions themselves, so the disease doesn’t always care whether ovaries are present or if the patient is taking estrogen. Estrogen mimics in the environment can play a role in aggravating symptoms by the result of studies in monkeys, but the effects of estroegn mimics seem impossible to quantify. Lifestyle and other changes: whatever works, but often it doesn’t.
Why is excision the best treatment method and why hormonal treatment, pregnancy, menopause and all the rest are myths?
Dr. Redwine: All hormonal treatments are based on the twin fantasies that pregnancy and menopause physically kill endometriosis (not just relieve symptoms). Unfortunately, no one ever thought to go to the trouble of doing the studies to see if pregnancy or menopause made endometriosis go away. Relief of symptoms was enough. The bottom line for all medical treatment of any type is this: no medicine eradicates endometriosis. This makes endometriosis a disease that can only be treated by surgery (since anything else treats only symptoms). “Diseases which medicines don’t cure, excision cures.” – Hippocrates, 450 BC. Excision of endometriosis is classic Hippocratic medicine.
Why the lack of endometriosis specialists out there and why patients are ignored by the medical society?
Dr. Redwine: Excision of multi-organ deep endometriosis can be the most difficult surgery to perform in the human body. Given the prevalence of endometriosis, deep endometriosis surgery is far more common than gyn cancer surgery. This is why gyn oncologists are not necessarily automatically good endometriosis surgeons – they just don’t have enough surgical experience with a difficult disease. While any gynecologist should be able to excise simple superficial disease, deep disease is best care for by experienced endometriosis surgeons. Fair payment is an issue for endometriosis surgeons because third-party payers such as insurance companies or national healthcare systems do not pay based on degree of surgical difficulty. Anesthesiologists often get paid more than the surgeon. Medical equipment companies and drug companies charge exorbitant fees which are often paid happily by insurers. But let a surgeon complain about not getting paid fairly and the surgeon is portrayed as a greedy person. So the disrespect and disinterest that patients experience from the medical system is also experienced by surgeons from the payment side. After all, “it’s just pelvic pain”.
Last but not least, what is your message for Romanian patients and doctors?
For the patient: listen to yourself.
For the doctor: listen to your patient, but if you don’t listen to your patient, listen to me.