We might think that endometriosis (‘endo’) pain would be something that every sufferer could understand in the same way. Unfortunately, this is not the case. Endo pain is multi-factorial and different for each patient. So, when a person says, ‘I am experiencing pain from my endometriosis’, other sufferers might assume that they know exactly what is being experienced. The truth is that pain from endo is often unique to the individual experiencing it.

One undesirable result of associating one specific group of symptoms with the diagnosis of endo is that this can lead to a delayed diagnosis – or no diagnosis at all, thus prolonging suffering and increasing the likelihood of disease advancement.

The factors influencing the type of pain a patient experiences include:

• The location of the endometriosis lesion(s)
• The amount of inflammation around the lesion and the blood supply to it
• The proximity of the lesion(s) to local nerve supply
• The organs affected by endo (peritoneum, fallopian tube, ovary, bladder wall, bowel wall, ureteral wall, vaginal wall, etc.
• The presence of adhesions in the area
• The presence or absence of prior pain in the same area
• The concomitant use of medication including but not limited to:
  • Anti-inflammatory agents
  • Narcotic agents
  • Muscle relaxants
  • Seratonin modulating drugs
  • Ovulation suppressing medications
• Physical activity
• Application of heat and/or cold
• Any practical or psychological benefit (whether the patient is aware of it or not) that the patient receives by way of ‘being in pain’
• Anger and resentment that results in muscle tension

It is a daunting task to try to point out every type and location of pain that endo sufferers might feel and why it occurs in the way that it does, but I would like to try to describe some of them. If your specific situation does not seem to be adequately covered, send me an email and I will try to cover it as I have an opportunity.

TYPES OF PAIN

CHRONIC ACHE: See above example. I often think of nerve involvement or internal pressure when I hear this complaint.

COLICKY:  This pain is a slowly building and then residing pain. It is often associated with lesions on/in/or close to the wall of the intestine. As the bowel wall dilates to allow passage of gas/liquid/solid material, the lesion is variably impacted.

MENSTRUAL: Abnormal menstrual bleeding, clotting and cramping, etc. can be associated with several different causes. Endo is one of them. We will discuss other causes for difficult menstrual periods at a future time. Here it is important to know that other diagnoses should be considered as well as endo when trying to understand unusually difficult menses.

BLOATING: Usually means that for one reason or another, the transfer of gas/liquid/solid through the intestine is slowed and the bowel diameter is increasing. The patient is essentially ‘pregnant’ with a dilated intestine.

SHARP/KNIFE-LIKE/TEARING: May occur if blood is released into the abdominal cavity and irritates the peritoneum, or if muscle, containing lesions of endo, is stretched or moved. Sharp pain is also reported when any area of endo receives direct pressure such as the vaginal wall lesions during intercourse.

PAIN LOCATION

Pain occurring from above the knee to the mid chest still only covers about 95% of the locations that have been reported.

Pain location is certainly dependent on disease location and the nerves close by, but it is also dependent on the proximity of the lesion(s) to nearby organs and the impact of the lesion(s) on the natural function of the organ involved. For example:

A lesion at the top of the vaginal wall may not cause any pain in a resting situation, but may make sexual intercourse extremely painful, because intercourse puts direct pressure on the site of the lesion. A patient might say, “It only hurts when I have sex.”

Or, a lesion on the bowel wall in the area of the rectum may cause an ache when there is a need to have a bowel movement, and extreme pain (‘I faint every time I have to go to the bathroom’) as someone tries to have a bowel movement. Yet, after defecation, this individual may feel fine.

Or, a lesion on the surface of the ovary (or an endometrioma inside the ovary) may cause extreme pain around the time of ovulation. This person’s pain may gradually increase after menses and actually go away when the next menses finally starts (when the ovary returns to its resting size).

Or, a lesion in the posterior pelvis close to the local nerve supply may cause a chronic low back pain that never seems to go away.

Pain from ureteral involvement may mimic urinary obstruction symptoms, and pain from bowel wall lesions may cause distension of the entire abdomen.

The well-described scenario of painful menstrual cramps and backache is certainly very common and may even be associated with menstrual nausea and vomiting, but it is very important to understand the many other symptoms that may be caused by endo so that the diagnosis gets consideration.

INFLAMMATION

Inflammation is defined as ‘the reaction of tissues to injurious agents’ and ‘may be associated with redness, swelling, pain, tenderness, and heat.’ Inflammation commonly causes pain.

Endo lesions may have surrounding inflammation or they may not. Some lesions seem to be tolerated by the body without any surrounding reaction. We know that this is true because we can see at the time of surgery obvious differences in the surrounding tissue reaction when inflammation is present.

Endo lesions without inflammation may cause no pain at all. For example,  endo may be diagnosed by the surgeon at the time of an unrelated surgery (think appendectomy). When asked post-operatively, some have had no symptoms what-so-ever.

PROXIMITY TO LOCAL SENSORY NERVES

Sensory nerve supply is not uniformly distributed throughout the body and particularly the floor of the pelvis. One side of the body may actually be different than the other. Mesenteric fatty tissues have a different configuration of sensory nerves than the utero-sacral ligaments. As a result, lesions located far from nerve bundles may have little or no effect on pain.

ORGAN INVOLVEMENT WITH ENDO

Ovaries, fallopian tubes, intestinal walls, ureters, vaginal walls, and bladder walls are all vital organs that function independently in the lower abdomen and pelvis. When the function of one or more of these organs is impacted by the presence of endometriosis, it may cause pain. See above for examples of the different types of pain that might occur.

ADHESIONS

Adhesions are created when the body reacts to injury. They may be fine, filamentous webs, hard dense white bands, or glue-like attachments that extend from one structure to the other. Adhesions may form around areas of endo or occur after surgery to remove the disease. Whenever these attachments limit the free mobility of and organ, they are likely to cause pain.

A HISTORY OF PAIN IN THE SAME AREA

When someone has had severe pain in a specific area in the past, sensitivity in that area may increase. I do not understand the scientific reason for this to occur, but I believe it is real – not imagined.

USE OF CONCOMITTENT MEDICATION

First of all, I would like to make a plea for personal vigilance in the use of medication and supplements. In my experience, health care professionals and pharmacists do only a fair job of anticipating medication interaction. The best and safest way to add any medication is to first research it for yourself. This can be done online at various sites like https://www.webmd.com/interaction-checker/default.htm.

Narcotics, muscle relaxants, anti-inflammatories, and serotonin modulating drugs can all impact the pain a patient experiences at a given point in time. Because their mechanisms of action are different, healthcare professionals may use them independently or sometimes in combination. In each category, prolonged regular use of the drug may encourage a psychological dependence; therefore I advise extreme caution with regular professional re-evaluation when prolonged pain therapies are being used. Additionally, both narcotics and muscle relaxants may induce a physical addiction/dependence requiring medical attention.

Drugs that suppress ovulation may reduce pain by inhibiting the natural increase in ovarian size that occurs during the natural ovarian cycle. The secondary effect of minimizing estrogen/progesterone ups and downs may also reduce pain by reducing menstrual flow (or causing menstruation cessation altogether). We will talk about the mechanism of action of other drug therapies in a different blog.

HEAT & COLD

Heat tends to increase circulation to tissues and can be a great aid to healing; however, it may be associated with localized swelling in the tissues. This can be increase discomfort.

Cold tends to reduce blood supply and reduce swelling. It may also tend to relax tense muscles.

Alternating heat/cold therapies is a well-known method for enhancing healing and controlling pain, and is appropriate for endo patients.

See also my note about avoiding extreme heat on the abdominal wall. I have seen many cases of fat dystrophy from intense heat used because of disabling abdominal pain.

PHYSICAL ACTIVITY

As noted previously, physical activity may or may not increase pain. Movement of tissues containing lesions/cysts surrounded by inflammation often makes exercise uncomfortable. However, there is great individual variation and there are some who are able to exercise without pain.

It is rare that anyone needs to avoid exercise if it causes no pain (perhaps large ovarian cysts require caution), and in general, I think exercise when possible is a strong positive.

NEUROGENIC PAIN

Neurogenic pain is defined as pain due to dysfunction of the peripheral or central nervous system, in the absence of nociceptor (nerve terminal) stimulation by trauma or disease.

It is difficult to know how often neurogenic pain occurs in endo patients, but there are times when I suspect that this is the origin of pain. For example, I excise endo from a patient who has suffered for years secondary to misdiagnosis and ineffective treatments. She returns with the same pain that she has reported in the past. Yet, at a second-look Laparoscopy, there is no endo and there are no adhesions to explain the pain.

SECONDARY BENEFITS FROM BEING IN PAIN

I should not neglect to mention that psychologists/psychiatrists tell us that pain may be experienced when there is no obvious cause. Sometimes, the cause is present, but we just can’t find it. Sometimes, the presence of pain allows the avoidance of specific “undesirable” activities (work, sex, travel, physical exercise, etc.). In the latter situation, we labor to solve the wrong problem by looking for a pain source when none is going to be found. I advocate a thorough search for pain sources, but I try to also look for secondary benefits from having pain. Often the individual involved has no conscious awareness that the presence of pain is achieving another benefit in her life.

ANGER & RESENTMENT THAT RESULTS IN MUSCLE TENSION

This is probably not something that you would expect an expert on endo to be including in his blog, but I think that it may have value to a few individuals.

Anger (of any type and from any source) causes increased muscle tension and increased gastric motility amongst may other physiologic responses in the body. If there is a place in the body that is injured or inflamed, it will be particularly sensitive to surrounding increases in muscle tension. Those endo patients with GI symptoms may see their symptoms increase around times of significant anger.

Stay tuned for more on endometriosis, coming soon!

Disclaimer: any and all material(s) presented herein are offered for informational purposes only. Such material is not intended to offer or replace medical advice offered by your personal physicians or healthcare professionals. No information herein should be considered as party to any doctor/patient relationship. All contents herein are © copyright by Robert B. Albee, Jr., MD except where otherwise explicitly noted. All rights reserved. This material may not be reproduced or utilized in any form, including electronic or mechanical, photocopying, recording, or by any information storage and retrieval system except for personal or teaching use with prior permission. Thank you.