Endometriosis and IC have been referred to in the medical community as “Evil Twins” because of how often they occur together. Patients with endometriosis are nearly four times more likely than the general population to also develop IC.(1) Doctors estimate that 48 to 65% chronic pelvic pain have both IC and endometriosis.(2) Both conditions cause pelvic pain, have overlapping symptoms and may be the result of the central nervous system.

What is Endometriosis?

Endometriosis gets its name from “endometrium,” which is the tissue that lines the uterus. In women with endometriosis, that tissue starts growing outside of the uterus where it doesn’t belong. Usually endometriosis growth is found in the pelvis, including the ovaries, fallopian tubes, vagina, vulva, cervix, bladder, rectum and bowel. Very seldom is endometriosis growth found outside of the pelvis.(3)

While these growths are benign and not cancerous, they can cause issues. Just like the lining of the uterus swells and bleeds every month, these cells can do the same thing. That causes pain and swelling, since the blood cannot easily get out of the body. The growths can also block fallopian tubes, grow into the ovaries and form cysts. Endometriosis can form adhesions, which bind organs together. It can cause scar tissue as well, which results in pain and can make getting pregnant difficult. The growths can also attach to the bladder and bowel, causing significant problems.

Symptoms

Very painful menstrual cramps are common but endometriosis can also cause pain in the lower back and pelvis as well as pain during or after sex. Intercourse-related pain is often described as a deep pain rather than pain felt at the vagina’s entrance. Patients can have intestinal pain and painful bowel movements as well. Endometriosis can also cause painful urination during menstruation.

Along with pain, women with endometriosis can have bleeding or spotting in between menstrual periods and struggle with infertility. Digestive problems, especially during menstrual periods, can also be a symptom, including diarrhea, constipation, bloating or nausea.

Causes

The exact cause of endometriosis isn’t clear, but there are a few possible explanations.

  • Chemical Exposure – Certain chemicals, such as dioxin, have been linked to endometrial growth because they have an estrogen mimicking effect.(4)
  • Retrograde menstruation — This occurs when blood containing endometrial cells flows into the pelvis instead of out of the body and then stick to various abdominal organs.
  • Transformation of peritoneal cells — Peritoneal cells line the inside of the abdomen. Some experts speculate that hormones and immune factors transform those cells into endometrial-like cells in patients with endometriosis.
  • Embryonic cell transformation — During puberty, hormones may transform embryonic cells into endometrial-like cells.
  • Surgical scar implantation — After a surgery involving the uterus, endometrial cells might attach to the surgical incision.
  • Endometrial cell transport — Blood vessels or the lymphatic system might transport endometrial cells throughout the body.
  • Immune system disorder — The immune system might not be able to recognize and destroy endometrial-like tissue that’s where it shouldn’t be.(5)

Risk Factors

While endometriosis can happen to any female who has menstrual periods, it is more common in women who are in their 30s and 40s. Other risk factors include: not having children, periods that last longer than seven days, menstrual cycles that are 27 days or less, a family member with endometriosis and/or a health problem that blocks the flow of menstrual blood from your body.

Lowering your estrogen levels can reduce your chances of developing endometriosis , because estrogen thickens the uterus lining. Regular exercise (more than four hours a week) and having lower body fat reduce the amount of estrogen circulating through your body. Alcohol and caffeine both raise estrogen levels, so not having more than one serving a day of either is a good plan. Since both alcohol and caffeine tend to cause flares in IC bladders, it’s a doubly good idea to avoid them. The final option to lower estrogen is by using a hormonal birth control method that has a lower dose of estrogen,

Diagnostic Methods

A diagnosis can be made with the following minimally invasive procedures.

  • A pelvic exam — During a regular pelvic exam, gynecologists can feel for signs of scar tissue or cysts. However, this may not be enough to tell whether a patient has endometriosis.
  • Ultrasound — By taking pictures of your reproductive organs with a topical or vaginal ultrasound, gynecologists can sometimes find cysts that are common in women with endometriosis.
  • MRI (Magnetic Resonance Imaging) — MRIs take clear pictures inside the body using large magnets and radio waves instead of X-rays. Doctors also may use MRIs to prepare for surgery on endometriosis patients.
  • Laparoscopy — Doctors may perform an outpatient surgery to carefully look at your pelvic cavity through a few small incisions on the lower abdomen. (6)

Treatment Options

There are a variety of treatment. Finding the right one depends on the patient, her symptoms and definitely what her doctor recommends. Medication, surgery and self-help treatments can all help in managing endometriosis and its symptoms.

(1) Pain medication

Pain management is often the first goal of treatment. Doctors may recommend over-the-counter NSAIDS like ibuprofen or naproxen sodium to ease painful cramps, though stronger medication may also be necessary.

(2) Hormone therapy

Doctors may lower estrogen levels to reduce the growth of endometrial tissue:

  • Hormonal contraceptives — Whether in pill, patch or vaginal ring form, hormonal contraceptives control several hormones including estrogen. Continuous-cycle regimens can reduce or eliminate endometriosis pain.
  • Progestin therapy — Intrauterine devices (IUD’s) and pills that rely on progestin can alleviate endometriosis symptoms. Recent research has also shown that birth control pills with lower testosterone levels don’t impact IC symptoms as much. In general, progestin birth control also has lower testosterone levels.
  • Gonadotropin-releasing hormone (Gn-RH) agonists and antagonists —  These medications (i.e. Lupron) block the production of hormones that stimulate the ovaries, which lowers estrogen levels and prevents menstruation. These drugs create an artificial and temporary menopause, so taking a low dose of estrogen or progestin along with them can help decrease side effects like hot flashes, vaginal dryness and bone loss.
  • Aromatase inhibitors — This class of medication reduces estrogen in the body. For treating endometriosis, these medications are often used along with progestin or a combination hormonal contraceptive.

Surgery

Surgery is done ONLY for severe cases of endometriosis or for patients trying to become pregnant. For patients trying to become pregnant, removing endometrial-like tissue can be a good idea. This surgery is usually done laparoscopically, as an outpatient procedure. While it can alleviate pain and allow a patient to get pregnant, this isn’t necessarily a permanent solution because the endometriosis can return.(4)

For many years, hysterectomies with removal of the ovaries was used to treat endometriosis, but doctors are moving away from total hysterectomies. Removing the ovaries puts a patient into menopause, which has its own set of risks such as heart disease and certain metabolic conditions. Another option is removing the uterus but leaving the ovaries.

Self-help

Used on their own or in conjunction with other treatment options, self-help therapies that can help manage endometriosis symptoms. Given strong flares associated with menstruation, patients can plan accordingly. Warm baths and/or a heating pad can help relax pelvic muscles, which reduces cramping and pain. Some women have found that cinnamon twig, licorice root, thiamine (vitamin B1), magnesium and/or omega-3 fatty acids reduce their endometriosis symptoms.

How Endometriosis and IC Are Connected

It is not unusual for patients who struggle with endometriosis to develop other pelvic pain conditions, including IC, vulvodynia, irritable bowel syndrome, fibromyalgia and even TMJ. These fall under the collective name “Chronic Overlapping Pain Conditions.” Recent research produced by the Chronic Pain Research Alliance helps us to understand the connection between these conditions. In many cases, it’s due to the central nervous system that is “wound up” by pain. Brain imaging studies reveal that many chronic overlapping pain patients are functioning in continual fight or flight mode. Their sympathetic nervous system and the corresponding amygdala in the brain are staying active much longer than normal. Usually after a stressor resolves the parasympathetic nervous takes over and calms the nervous system, reducing heart rate, blood pressure and muscle tension. For COPC patients, however, this is not happening.

Patients also struggle with changes in pain processing and sensory processing. Studies have shown that COPC patients struggle with increased pain intensity and lowered sensory and pain thresholds. In other words, it takes less stimulation to turn pain on in this group of patients. Normal, light touch could be experienced as intense pain. Known as central sensitization, these patients often have very sensitive skin, as well as a strong sense of smell. Learn more here! 

Therapeutically, these patients must learn to “wind down” their central nervous system by using a variety of mind-body techniques which act to turn off the sympathetic nervous system and turn on the parasympathetic nervous system.  Emotional Freedom Tapping is one way of re-engaging the PNS. Mindfulness  is essentially physical therapy for the brain that allows you to train, grow and enhance brain function. There are many more methods available as well.

Thus, for the Chronic Overlapping Pain Condition, not only will you be focusing on therapies that might calm your bladder, your vulva, your bowel and so forth… but you must also work to calm your nervous system, ease anxiety and focus on a positive rather than negative state of mind. You didn’t ask for all of this pain, but it certainly isn’t your fault. Nor should you feel any shame or blame. This is about being kind to yourself, gentle, comforting and constructive. Working with a mind-body expert can be very, very helpful. Here are some videos that might help:

The “IC’s Related Conditions” series takes a look at conditions that can go hand-in-hand with IC. Not all patients have all of these conditions, but IC patients are more prone to be diagnosed with these conditions than the general population. (As always, this is not intended as medical advice and is for informational purposes only. Any and all medical questions should be addressed with your doctor.)

References

  1. Chia-Chang W, et. al. Endometriosis increased the risk of bladder pain syndrome/interstitial cystitis: A population-based study. Neurourol Urodyn. April 2018 Volume 37, No. 4.
  2. Overhold TL, et. al. Non-bladder centric interstitial cystitis/bladder pain syndrome phenotype is significantly associated with co-occurring endometriosis. Can J Urol. June 2020 Volume 27, No. 3.
  3. Office on Women’s Health. Endometriosis. Updated April 1, 2019.
  4. Ayden, N. An important environmental contaminant dioxin has links to the pathogenesis of endometriosis. Endo News. February 17, 2020
  5. Mayo Clinic. Endometriosis. Oct. 16, 2019.
  6. Swiner C. How do I Know if I Have Endometriosis?. WebMD. Jan. 27, 2020.