Is My Endometriosis Coming Back?
by Robert B. Albee, Jr., MD, FACOG, ACGE, CEC FOUNDER
© 1995. Last updated 2014. Cover image used with licensed permission.
After excision surgery, an individual wants to believe they are better, but are afraid to hope too strongly for fear of being disappointed yet again. When pain - or any other symptom resembling those present before surgery - appears, it is very easy to 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.
Though there may be several similarities and hallmarks, each case of endometriosis is unique because of the locations of the lesions and the depth to which the tissue was invaded. Therefore, it is a very 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 means you) factors, including the following:
immune system status
percentage of body fat
blood clotting factors
differences in anatomy
chronic lung disease, or
inadequate oxygen delivery to the tissue
attitude (for example, anxiety levels, perception of surgery, outcome expectations)
other/comorbid disease process(es)
life stresses and pressures/post-operative environment
compliance with post-op directions
number of prior surgeries/disease complexity
type of anesthesia
co-dependency factors (for example, environmental, social and/or 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 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 approximately 10-12 weeks need to pass, though you may be back to your normal (albeit limited) routine well before this time. This time frame may increase due to factors such as those listed above, or complications such as infection or bleeding.
The first ovulation after laparoscopic excision of endometriosis (LAPEX) can create unusual symptoms. If the ovaries were involved in the excision, 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 or significant pain.
While this may be a totally self-limiting process, the pain can be severe and slow to subside. It may be terribly frightening, particularly when it seems to be similar to events you have always associated with your 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, we may discuss suppressing ovulation for a three-month interval post-op. For more information, see Post-Op Ovarian Suppression.This is an option for pelvic rest - not as a hormonal approach to the disease, as many others may use.
Unfortunately, even those on this regimen may still have an ovarian event.
First Post-Op 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.
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 means, simply put, 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 individuals are confused, angry, hurt 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 the thousands of patients I have treated via LAPEX, we are aware of fewer than two dozen recurrent ovarian endometriomas.
As previous articles have noted and as mentioned above, 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(s).
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 adhesions cause 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 individuals the recurrence of symptoms attributed to adhesions in the one to five year period post-op. Personally, 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 individuals 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 lyse via laparoscopy. In my more than two decades of performing advanced LAPEX surgery, most of the repeat surgeries I did after the initial LAPEX did not show significant endometriosis, but rather, other pelvic problems (of which adhesions were 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 full bowel resection or excision of endo off the bowel, in the cul-de-sac or near the rectovaginal 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, well after surgery, 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 us (or your physician, if you are not a CEC patient).
Most of our own patients who have not had a hysterectomy can resume sexual relations at around three weeks assuming they feel comfortable about it and we have not advised them otherwise for specific reason(s). 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 could take 2-3 months for sex to become comfortable.
"Traditional" Medicine & Endometriosis
Some individuals struggle when what they learn about endometriosis from sources like the Center for Endometriosis Care conflicts with what their past or current doctors tell them. Some of the information that we provide and teach is contrary to the traditional approaches to endometriosis (drug suppression, incomplete or non-excisional surgery, etc.). We use the experiences we have gained over the past 25 years 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 or have them contact us
If you are a CEC patient, be sure to give them their copy of your post-op packet with your op and path reports, as well as information about our 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.
For additional information, you may also be interested in http://www.centerforendometriosiscare.com/was-my-surgery-a-failure.
I hope this helps increase your understanding of some of the pre- and post-operative factors which may contribute to your concerns. If we can be of further assistance, let us know. We're here to help any way we can, and are always grateful for the opportunity to continue our work on endometriosis.