Is My Endometriosis Coming Back?

by Robert B. Albee, MD
After endometriosis surgery, a woman wants to believe she is better, but is afraid to hope too strongly for fear of being disappointed yet again.
When such a woman has pain or any other symptom resembling the symptoms she had before surgery, she might draw (or be given) an erroneous conclusion that, "the endo is back".
This article tries to explain what some of these symptoms might mean, when they are worrisome, and what you can do about them.
General Information
Each case of endometriosis is unique, because of the locations of the implants and the depths to which the tissue was invaded. Therefore, it is a bad idea to try to compare your recovery to anyone else’s, or even to yourself at a previous operation.
Even if the surgeries seem very similar, recovery varies due to a number of host (that’s you) factors including the following:
immune system status
nutritional status
percentage body fat
blood clotting factors
differences in anatomy
smoking status
chronic lung disease, or
inadequate oxygen delivery to the tissue
ambulatory activity
attitude
medications
other disease processes
life stresses and pressures
compliance with post-op directions
number of prior surgeries
type of anesthesia
co-dependency factors (environmental, social, and personal factors that can cause certain responses to pain and stress).
The first approach about any concern: Do the symptoms suggest a need for immediate attention to evaluate a new problem or a surgical complication? Consult the post-operative instructions you were given to check your doctor’s guidelines about what is normal and what is not. If you have reasonable doubt, always call for advice.
The Healing Process
Healing begins as soon as the surgery ends. First, injured blood vessels clot and the body speeds host defense mechanisms into the area. Each location injured by excision begins to have local edema with an infusion of serum. Multiple blood-borne factors and cells are rushed into place. The tissue swells and nerve endings are irritated and sensitive to these changes. Adhesions may form over the area in an attempt to wall it off.
The body then begins to lay down new blood vessels and new peritoneum to cover the injuries. Soft tissues are amazingly reconstructed. This is your body’s natural response. The deeper the surgical dissection that was needed to remove all your endometriosis, the more injury there is to heal.
For the completion of this process we estimate that 10-12 weeks need to pass. This time period can increase due with factors such as those listed above, or complications such as infection or bleeding.
First Ovulation
The first ovulation after laparoscopic excision of endometriosis (LAPEX) can create unusual symptoms. If the ovaries were involved in the excision of endo, they may be extremely sensitive. When an endometrioma is excised from an ovary, a defect in the capsule of the ovary is left, and this can require considerable time to heal. The area may be bruised, tender, and swollen with increased circulation. If, as part of the natural processes, an area near the injury is the site for the next ovulation (for example, ovulating from the right ovary when the right ovary had an endometrioma removed from it), tissue changes occur in an already injured area. The result of these dynamic changes in an extremely sensitive area can be unusual pain.
While this may be a totally self-limiting process, the pain can be severe and slow to subside. It is terribly frightening particularly when it seems to be similar to events you have always been associated with endo. In fact, there is no sure-fire way for us to tell instantaneously the difference in the sources for your pain.
Because of this, I now suppress ovulation for a three-month interval post-op. (For more information, see Dr. Albee's newsletter on Post-Op Ovarian Suppression.)
Unfortunately, even women on this regimen can still have an ovarian event.
First Menses
Your first menstrual period after LAPEX can be extremely heavy and painful. Many women report clots and cramps worse than before surgery. This can be very frightening.
Here's what happens: There is a natural congestion of blood into areas where endometriosis was excised. This may affect the ability of the uterine muscle to contract normally. This, in turn, can result in heavy flow, clots, and cramps.
Another possibility is that the anesthetic drugs used to relax the body during surgery have long-lasting effects on the uterine muscle, with the same outcome.
Physical inactivity during the post-operative period may be a third factor leading to a change in uterine muscle responsiveness.
I am not aware of any way to prevent this, and I treat it with cautious observation and the knowledge that this has not proven to be a long term or recurring problem. Generally, only the first one or two menstrual cycles are affected.
Ovarian Cysts
Post-operative ovarian cysts (after LAPEX of ovarian endo) are not common. However, they can and do occur.
After ovarian LAPEX, the same factors that can make ovulation unusually painful are also responsible for an increase in the frequency of ovarian cysts. Some of these cysts form because of adhesions around the ovary. Others form because of bleeding within the ovary.
A surgically treated ovary has a higher chance of some bleeding within the ovary during a natural event such as ovulation, or corpus luteum formation after ovulation, than a normal ovary does. If the bleeding is confined within the ovary and is not released into the abdomen, a hemorrhagic cyst will form. This is simply a pocket of blood.
A hemorrhagic cyst can require 8-16 weeks to resolve, but it usually will. In the absence of signs of an acute problem, such as active bleeding into the abdominal cavity, most ovarian cysts in the post-op period should be treated patiently. Recommendations include activity limitation (avoid prolonged sitting and standing, no lifting or straining until the pain has been substantially relieved for at least three days) and close observation by knowledgeable physicians.
If you have just been through surgery to deal with endometriosis and the cysts so commonly associated with it, a new cyst is a scary thought. Added to your fear can be a visit with a physician who will automatically tell you that a new cyst is "new endo".
All too often, this results in patients being wrongly told their endo has come back!
Then they are usually offered one of the stronger suppressive drugs. Now in addition to hurting, these women are confused, angry, and afraid that their disease has not been treated effectively, or that it has come back already.
Cysts that form within the first six months after LAPEX are almost never endometriosis. In fact, in more than 800 patients I have treated with LAPEX, we are aware of fewer than one dozen recurrent ovarian endometriomas. The average length of time post-op for patients in this series is almost four years, and 180 patents more than seven years past surgery.
Adhesion Formation
As previous articles have noted, adhesions are your body’s natural defense mechanism for dealing with intra-abdominal injury. The adhesions form as your body tries to wall off the injured area.
This is basically a very good process. However, it concerns us when it affects the function of the ovaries or tubes and interferes with fertility. It also becomes a problem when it causes active organs (such as the bladder, uterus, tubes, ovaries, and/or intestine) to become bound together. This can cause pain because tissue that was designed to float freely within the pelvic is now stuck together.
Adhesions usually form in the immediate post-op period. We use every available technique to protect the active organs listed above from becoming involved with adhesions. Still, some adhesions may form. We certainly expect them more often in Stage III-IV patients due to the more extensive surgery needed to totally excise all their disease.
Most of the time, adhesions can exist harmlessly in the abdomen without creating painful problems. However, the potential for pain or infertility is certainly increased in the endometriosis patient.
Interestingly, we have observed in some women the recurrence of symptoms attributed to adhesions in the one to five year period post op. I believe that once adhesions have formed in the immediate post-op period, they will not continue to form unless there is a new insult to the tissues such as injury, infection, or more surgery.
Later (1-5 years), some women report symptoms related to adhesions. The adhesions already present may undergo a very slow process of coalescing or shrinking. If this process begins to limit the mobility of organs that need to change size and/or position, painful symptoms can result.
If these symptoms become severe, they are usually easy to treat with laparoscopy. Most of the repeat surgeries I do after initial LAPEX do not show significant endometriosis, but I find other pelvic problems, of which adhesions are at the top of the list.
Painful Bowel Movements
Pain with a bowel movement is another scary event after surgery. There may be several possible causes.
Patients who have had a bowel resection, or excision of endo from the bowel, cul-de-sac, or recto-vaginal septum are likely to experience this due to the passage of gas, liquid and solids through the injured and swollen area in the wall of the intestine.
Additionally, if the bowel stays relaxed for a period of time after the surgery (especially if you’ve done a bowel prep), the first bowel movement may be difficult. You can use a glycerin suppository for help, but only if you did not have a bowel resection.
When painful bowel movements occur substantially later, we need to consider other factors, including constipation, use of pain medication, adhesion formation, etc.
If pain with bowel movements is associated with a general increase in abdominal pain and/or a fever over 100.5o, it is time to call your physician.
Painful Intercourse
Most of our patients who have not had a hysterectomy can resume sexual relations at three weeks assuming they feel comfortable about it. Sometimes the physical movement of the tissues at the top of the vagina will create tenderness or pain. In some cases with very slow recoveries, it can take 2-3 months for sex to become comfortable.
"Traditional" Medicine
Some women struggle when what they learn about endometriosis from sources like the Center for Endometriosis Care conflicts with what their doctors tell them.
Some of the information that we distribute is contrary to the traditional approach to endometriosis. We use the experience we have gained to add to the traditional understanding of endo, but updating that approach is a gradual, evolving process. We have seen great changes, for example, in the ability to recognize early forms of endo at surgery by general gynecologists. However, we still find that the majority of practitioners are not aware of the evidence that would change their prescribing habits, surgical approaches, and referral patterns.
Good ways to do this are:
Take them copies of your CEC materials, and ask them to review them at their leisure
Be sure they get a post-op packet from the CEC with a copy of your op and path reports, as well as information about the Center
Ask them if they would be willing to telephone me or Dr. Sinervo about your particular situation, or to answer any questions they might have.
If they are not willing to review new information and relate it to their approach, you must decide whether or not to stay with them or to seek another caregiver.
http://www.centerforendo.com/articles/endocomingback.htm