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Defined
Symptoms
Diagnosis
How is it treated?
What are some of the pitfalls of treatment?
Why you should go to a specialist?
What you should expect from outcomes?
Definition of Endometriosis
Endometriosis by definition is the finding of a particular type of tissue – glands and stroma – of the endometrium (the lining of your uterus) outside of its normal location inside the uterus.
Endometriosis is most commonly found in the lining of the abdomen and pelvis but can also be found in the ovaries, fallopian tubes, intestine, lungs, and brain. Sometime it is also found in the uterus. That is a condition called adenomyosis.
Symptoms
Some women with endometriosis do not have symptoms. Other women have symptoms that range from mild to severe. These are some of the more common symptoms:
Symptoms
Diagnosis
How is it treated?
What are some of the pitfalls of treatment?
Why you should go to a specialist?
What you should expect from outcomes?
Definition of Endometriosis
Endometriosis by definition is the finding of a particular type of tissue – glands and stroma – of the endometrium (the lining of your uterus) outside of its normal location inside the uterus.
Endometriosis is most commonly found in the lining of the abdomen and pelvis but can also be found in the ovaries, fallopian tubes, intestine, lungs, and brain. Sometime it is also found in the uterus. That is a condition called adenomyosis.
Symptoms
Some women with endometriosis do not have symptoms. Other women have symptoms that range from mild to severe. These are some of the more common symptoms:
- Painful periods
- Painful intercourse
- Infertility
Other symptoms associated with endometriosis include:
- General, chronic pelvic or abdominal pain throughout the month (a common myth among physicians who are not endometriosis experts is that endometriosis pain only comes with the period – this is not true!)
- Low back pain
- Heavy and/or irregular periods
- Painful bowel movements, especially during menstruation
- Painful urination during menstruation
- Fatigue
- Diarrhea or constipation
Diagnosis of endometriosis
There is only one way to definitively diagnose endometriosis. This must be done with a surgical procedure called a laparoscopy. During this procedure your surgeon will excise a portion of abnormal tissue and after the surgery send it to be evaluated under a microscope by a pathologist. If glands and stroma of endometrium are found then a diagnosis of endometriosis can be made.
If you surgeon says you have endometriosis just because it looks like endometriosis you may have received an incorrect diagnosis and be lead down a road on difficult and painful treatments when your real pain problem is being missed.
Treating Endometriosis
There are 2 mainstays of treating endometriosis – medical and surgical. I have listed below therapies to treat endometriosis specifically.
WARNING: One has to remember that a lot of problems come along with endometriosis, such as intestinal, bladder, and muscle problems, and those have to be treated as well as part of a comprehensive treatment plan.
If your doctor attempts to treat your endometriosis alone and ignores your other problems then you should ask for a comprehensive plan to treat the other problems as well. If this does not happen then you are less likely, in my experience, to get any significant improvement in your pain.
Medical therapies include
- Danazol: a therapy that has been around for a very long time and fell out of favor with physicians and patients because of its side effects when given by mouth. Recently, there was a paper that demonstrated the efficacy of danazol with minimal side effects when given in the vagina.
- Oral contraceptives: A very useful treatment when given in a prolonged cycle - 4 x/ year.
- GnRH agonists such as Lupron or Zoladex. This is another very useful therapy when applied correctly. Too many doctors think it is ok to just give this alone. But if you take it alone you are likely to have severe menopausal side effects and then no longer desire to use it. Experts in endometriosis understand that if we give you just a very low dose of hormone then you are less likely to have the menopausal side effects and your pain relief will be the same as if you had not use the extra hormones. You should have this medication administered only by an expert in endometriosis and chronic pelvic pain.
- IUD: The Mirena IUD contains a hormone called levonorgestrel. This is a useful therapy for endometriosis (as well as adenomyosis). It can be placed at anytime but is best used and most effective after surgical removal of endometriosis.
- Aromatase inhibitors: Aromatase inhibitors such as anastrazole and letrozole are emerging as important adjunct therapy for endometriosis. They can be used in conjunction with GnRHa , oral contraceptives, or depo provera.
- Progesterone: Depo provera is considered a third line medication for endometriosis and may be helpful in women who did not respond to other therapies, who had too many side effects from other therapies or who have contraindications to other therapies.
Surgical Management:
- Surgical management of endometriosis should only be done by an expert in endometriosis management.
- Surgical management should include removal of all endometriosis possible. This means cutting it out from the root. Most experts in endometriosis do not believe burning it with any energy source including a laser is effective therapy for deep endometriosis.
- Surgical management may also include removing the appendix, a portion of the colon, and cutting nerves that carry pain signals to the pelvis – this is called a presacral neurectomy.
Pitfalls of treatment
In my experience, having seen hundreds of women with chronic pelvic pain and endometriosis, here are some of the pitfalls of treatment that you may discuss with your doctor. Any one of these may lead to a worse outcome. A true expert in pelvic pain and endometriosis is unlikely to miss these problems.
- Presuming medical therapy is the best first line when surgery with an expert may offer better long term outcomes and prevent the onset of a central and difficult to treat pain problem
- Failure to recognize the presence of a central pain problem
- Failure to recognize other problems such as
- Pelvic floor muscle spasm
- Painful bladder syndrome (interstitial cystitis)
- Irritable bowel syndrome
- Psychiatric issues such as depression
- Celiac disease
- Fibromyalgia
- Failure to institute a multidisciplinary and multimodal treatment regimen
Why should you go to an expert?
Many surgeons will look at your pelvis and say it appears normal then fail to perform biopsies. An endometriosis expert will pick up very subtle abnormalities and perform the correct biopsies to make the diagnosis.
Further, when you go to an expert such as Dr. Levey, that person will excise the endometriosis from the root. Dr. Levey will explore all the anatomic structures and carefully view areas around nerves, blood vessels, muscles, intestines, and the urinary tract in order to remove all the endometriosis possible.
Most experts believe this is a critical way to achieve maximal results for treatment of pain when it is associated with endometriosis.
Below are actual pictures take by Dr. Levey during surgery.
To an untrained eye this appears normal
But a more careful look by Dr. Levey reveals an abnormal area.
Dr. Levey then removes the area. This should be done only by an experienced laparoscopic surgeon.
After review by the pathologists, this is endometriosis!
This is a mild case of endometriosis but the patient had tremendous pain. Sometimes there is severe endometriosis but very little pain. When there is deep endometriosis and multiple areas of fibrosis and hard nodules Dr. Levey will take time in the operating room to carefully remove maximum amounts of the endometriosis.
Outcomes
Most patients do quite well after following through with a comprehensive plan for their endometriosis associated chronic pelvic pain. Without that plan, surgery or medication alone will be less effective.
Some General Advice
Many surgeons are qualified to perform this type of surgery. You should ask about your surgeon’s experience and even ask to discuss with other patients (if the other person will allow it) how that surgeon treated not only your endometriosis but your other problems as well.
Most of the surgeons that are experts will take insurance. There is no reason to spend $20,000 or more on this type of surgery.
More resources on endometriosis
Kenneth A. Levey MD MPH is responsible for the content of this page.
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