© Center for Endometriosis Care/Ken Sinervo MD, MSc, FRCSC. All rights reserved. No reproduction permitted without written permission. Revised since original publication and current as of 2023. No external funding was utilized in the creation of this material. The Center for Endometriosis Care neither endorses nor has affiliation with any resources cited herein. The following material is for informational purposes only and does not constitute medical advice.

By Robert B. Albee, Jr., MD, FACOG, ACGE, CEC Founder

In most of our patients, pain relief after surgery and full recovery time (approximately 90 days) is excellent. Dramatic improvements in quality of life are common. This is what makes our job such a rewarding one!

Unfortunately, there is still a small group of patients that are troubled by ongoing, significant symptoms. I have focused my attention on this group, and this update reviews some important considerations.

The Value of Thorough Pre-op Planning

Patients experiencing pelvic pain may have one or more than one diagnosis. To the degree possible, surgeons should attempt to diagnose secondary problems preoperatively and discuss these with patients along with the discussion of Endometriosis. If this is not done, postoperative symptoms that are related to a secondary diagnosis may persist and confuse the evaluation of success from the primary surgery. The ongoing symptoms may lead patients to think that the surgery was ineffective or that they still have Endometriosis.

Examples of Secondary Diagnoses & Treatments

ADHESIONS

Adhesions are the body’s response to injury, inflammation, Endometriosis, and irritants. They form as the body defends itself against these things. They take the form of tissue bands, nodules, fused planes (organs stuck together), and fibrotic enclosures. Their presence around the tubes and ovaries increases the incidence of functional types of ovarian cysts (see CEC article on Ovarian Cysts). The presence of adhesions can be associated with coincident Endometriosis, but may be present for a different reason as noted above.

Symptoms caused by general abdominal adhesions alone may mimic Endometriosis symptoms, but would not be likely to respond to drug suppression for Endometriosis.  Suppressing ovulation may reduce pain from adhesions in the area of the tubes and ovaries, but if this is not effective, adhesions causing severe pain need to be treated by surgical removal. Our ability to remove adhesions without creating new ones is improving steadily when using the laparoscope and newer adjunctive compounds.

After complete excision of Endometriosis, only about 10% of patients will form severe adhesions that need additional medical help. Often, these patients are told that they must have recurrent Endo, although in our population of patients, this actually occurs less than 15% of the time. Thus, if Endo is completely excised, persistent or new pain is more likely to be related to adhesion problems, or another secondary diagnosis than to persistent or recurrent Endo.

PELVIC FLOOR NEURO-MUSCULAR PAIN (OR LEVATOR SPASM)

Muscles react to injury with spasm. Think of your back after you have strained it by lifting something too heavy. The long-term pain afterwards is usually due to spasm in the injured muscle. This persists until the injury is healed and then the muscle is reconditioned through strengthening and lengthening.

Pelvic floor muscles can be injured by direct trauma (e.g a fall), abuse, surgery, improperly performed exercise (including some gymnastics), infection, and of course Endo.  Treatment of this problem begins with removing the source of injury, if it is still ongoing as is the case with Endo.  Once this is accomplished, we need the services of a pelvic floor physical therapist.  Careful examination allows the detection of this problem pre-operatively. This group of patients can then be prepared for a two-step process. First their Endo is excised, and then physical therapy finishes the return of the pelvic muscles to a relaxed condition and normal functioning.On the other hand, if this diagnosis is not made preoperatively, persistent post-op pain may be easily misdiagnosed as relating to persistent Endo or adhesions, etc. The misdiagnosis leads to inappropriate treatment and a wrong conclusion about the success of the Endo excision treatment.

PRIMARY DYSMENORRHEA

This term refers to severe pain that is secondary to extremely intense uterine contractions.  The excision of Endo often significantly improves or totally abolishes the complex of symptoms associated with menstrual periods. However, a secondary condition such as an abnormally developed uterus, intrauterine polyp, uterine fibroid (leiomyomata), or Adenomyosis may explain limited or incomplete resolution of menstrual cramping after Endometriosis has been completely excised.

Preoperative evaluation can often lead a careful surgeon to expect one of these secondary diagnoses, so that the patient can be prepared for this possibility. The inside of the uterus can be evaluated at the time of their Endometriosis surgery by a visual examination called ‘hysteroscopy’.

ADENOMYOSIS

Adenomyosis is the name given to a condition in which endometrial glands and stroma are found inside the myometrium (muscular lining of the uterus). It used to be referred to by some as ‘Endometriosis Interna.’ When Adenomyosis is present, the ability of the uterine muscle to maintain a coordinated contracted condition is impaired. The muscle may become tender to pressure, and the uterus may slowly enlarge, becoming soft and congested by blood.

Patients with the diagnosis of Adenomyosis may experience constant and painful cramping. Uterine contractions may become increasingly inefficient, resulting in increasingly heavy bleeding and problematic clotting. Because of the inability of the muscle to contract in a coordinated action, menses may lengthen and spotting and brownish discharge may be present before and after menses. Sexual intercourse and pelvic exams may become increasingly painful. Pain from Adenomyosis is usually central in the pelvis.

Unfortunately, after excision of Endo, a patient who also has Adenomyosis can still have any of the above symptoms, even though her Endo is now gone. Careful evaluation of each patient preoperatively should allow surgeons to be suspicious of this possibility, so that the post-op expectations can include the potential for persistent symptoms.

For more information on Adenomyosis, refer to the CEC’s comprehensive article on the topic.

INTERSTITIAL CYSTITIS

Interstitial cystitis (I.C.) is a chronic inflammation of the urinary bladder wall, believed by many to be the result of an injury that leaves it without its normal protective coating.  I.C. is a moderately common secondary diagnosis, although I have not seen compelling evidence that would suggest that there is a direct association with Endometriosis. As does Endo when it is present on the bladder, I.C. causes many common symptoms such as urinary frequency, urgency, painful urination, bladder pressure, painful intercourse, and painful pelvic exams - to name a few.  I.C. can usually be diagnosed by cystoscopy using hydro-distension. If there is reasonable suspicion, a cysto can be done at the time of laparoscopy, so that this diagnosis can be confirmed or ruled out.

PRIMARY GASTROINTESTINAL DISEASE

There are a number of problems that arise in the GI tract that cause symptoms which can easily be misdiagnosed as Endo.  I am referring to constipation, diarrhea, bloating, cramping, and painful bowel movements, to name a few. All of these symptoms are seen from time to time in patients whose diagnosis is Endometriosis. When there is doubt about the underlying diagnosis and symptoms are in the above categories, I think a GI evaluation is an important pre-op step, so as to avoid unnecessary surgery.

IF YOU HAVE HAD SURGICAL TREATMENT FOR YOUR ENDOMETRIOSIS AND YOUR PAIN PERSISTS…

My heart goes out to you! The frustration you feel is not uncommon to Endo patients, but try to avoid despair. Let’s at least try to formulate a plan, because there is still hope.  First of all, I would encourage you to become a detailed historian with regard to the nature, location, and timing of your pain. Often it helps to keep a diary of this information. This medical history is immensely helpful to doctors as they try to understand the origin of your pain.

If your surgery for Endo was not complete excision, then you may still have your primary source of injury.  You are still likely to be an Endometriosis patient.  All Endometriosis treatment options remain open to you. You may try suppression (e.g. GnRH therapy, oral contraceptives, etc.), surgical excision (LAPEX), or palliative means of controlling symptoms such as acupuncture, diet, physical therapy, etc. If your surgery included complete excision of all Endo, then it is likely that there is a secondary diagnosis that needs to be diagnosed and treated.  Return to a caring gynecologist with the above list of secondary diagnoses in mind, and carefully explain your symptoms. Ask about the possibility of each of them. If your doctor doesn’t really listen to you, it is time to move on. Be extremely cautious of the doctor who immediately assumes that your Endo has returned. Remember - only approximately 7% of the time can we document Endometriosis after complete excision. Also, be cautious regarding the advice to have a hysterectomy, unless there is good evidence that the pain originates in the uterus such as with primary dysmenorrhea and Adenomyosis.  As I have noted previously, hysterectomy only “cures” Endometriosis IF at the same time ALL areas of Endo are excised.

Although there are not too many true Endo specialists around, I would encourage you to find one and present your complaints to them. It is really rare that with perseverance on your part and careful documentation of the specific circumstances surrounding your pain that we are not able to help.

Feel free to contact us anytime for further assistance or information. We want to help any way we can. - DR ALBEE