A Doctor’s Guide to Endometriosis and Sexual Function
Endometriosis (or endo, for short) is a condition that, despite its surprising prevalence and known detrimental effect on sexual function, gets very little attention from healthcare providers and the overall community at large. Many of you readers probably have never even heard of endo. But chances are you’ve known someone who has suffered from the disease. And some of you may even have endo and not know it.
Endometriosis refers to a condition in which cells similar to the lining of the uterus, also known as the endometrium, grow outside the uterus. Endo most commonly involves the ovaries, fallopian tubes, and the surrounding tissue within the pelvis (think: the vagina, cervix, vulva, bowel, bladder, and/or rectum). More rarely, endometrial-like tissue (called implants) may be found beyond the pelvis including in the lungs, heart, brain, and skin. It’s a condition that can have detrimental effects on a lot of bodily functions like urination, menstruation, defecation, and yes, sex.
The exact cause of endometriosis remains a mystery. Endo is an estrogen-dependent disorder that likely involves an interplay between predisposing factors, environmental conditions, inflammation, metabolism, formation of ectopic endometrial tissue, and generation of pain. Several studies have investigated the potential link between exposure to environmental dioxins and endometriosis, but the evidence is equivocal and potential mechanisms are poorly understood. Endometrial implants can behave just like normal endometrial tissue. These implants thicken, break down and bleed with each menstrual cycle. But because this tissue has no way to shed, it becomes trapped. Surrounding tissue can become irritated, eventually developing scar tissue and adhesions—bands of fibrous tissue that can cause pelvic contents to stick to each other.
Recognizing endo can be challenging for those affected and their healthcare providers. This is due, in part, to the non-specific and sometimes subtle nature of endo symptoms. Endo may affect more than 11% of American people with uteruses between the ages of 15 and 44 (Buck 2011). It is most common in the 30s and 40s but can affect people at any age after menarche (first menstruation). Approximately 70 million people worldwide suffer from endometriosis. One-third of people with chronic pelvic pain have endometriosis. Endo also seems to have a genetic component, meaning if you have a family member with endo, you may be more likely to have endo yourself. In fact, there is a six-fold increased incidence in people with an affected first-degree relative. Still, despite these impressively high numbers, it takes an average of 11.4 years in the United States to get accurately diagnosed with endometriosis. This has to change.
Pain is the most common symptom, but can vary depending on the person. People with endo may experience pain with menstruation. Some may describe this as intense cramping while others will report that their periods are so painful, they often become debilitated (sometimes missing school and work or are unable to perform mundane, daily tasks) until the pain resolves. Many people have been led to believe that pain with menstruation is normal and so often stay quiet despite the intensity of their pain. Providers too may chalk it up to normal menstrual cramps and not explore further. Endo pain can be chronic, sometimes felt deep in the pelvis or in the lower back, which can further complicate proper diagnosis. People with endo can experience pain with bowel movements or urination, sometimes associated with bleeding. Pain can also occur during or after sex, which can make endo difficult to identify.
Further complicating things, sometimes pain is not the presenting symptom. People with endo may report bleeding or spotting between periods. They may have trouble getting pregnant. They may report generic gastrointestinal (GI) symptoms like diarrhea, constipation, bloating, or nausea during their periods. All of these symptoms are commonly seen with conditions other than endo including irritable bowel syndrome and other GI disorders, interstitial cystitis or painful bladder syndrome, vulvodynia, and pelvic floor disorders.
Even when one suspects endometriosis, it can still remain difficult to diagnose. Occasionally, pelvic exams can be helpful but are often non-specific. Ultrasounds, computed tomography scans, and magnetic resonance imaging are all terrible at diagnosing the problem. And there are no reliable lab tests that can identify endometriosis. In fact, the diagnosis is typically only confirmed following exploratory surgery with excision of suspected endometrial implants and distinctive histological findings.
All this may sound discouraging, but the best thing you can do for yourself if you suspect endometriosis is to speak to your healthcare provider about it. Endo is a complicated condition that often requires a multidisciplinary team to manage. An earlier diagnosis may result in better management of your symptoms.
Endo and Sex
Now that you’ve been schooled on the ins and outs of endo, let’s talk about sex. We’ve already mentioned that pain during sex (also called, dyspareunia) can be a common symptom seen with endometriosis. This pain is often experienced with deeper penetration and may be described as dull, stabbing, tight, or crampy. Because of this pain, people with endo often minimize the frequency of sexual activity or even develop an aversion to sex altogether. Moreover, the quality of life and mental health of people who experience dyspareunia are significantly negatively affected (Van Poll 2020). But approximately two-thirds of people with endometriosis have sexual dysfunction that is not limited to deep dyspareunia (Barbara 2017). Endo can also negatively impact other aspects of sexual function including libido, arousal, orgasm, and sexual satisfaction. The quality of life and sexual satisfaction in people with endometriosis and chronic pelvic pain are significantly lower than in those without endo and can also affect their ability to maintain lasting romantic and sexual relationships (Shum 2018).
The link between endometriosis and dyspareunia gets even more complicated when you consider one of the most commonly prescribed treatments for the condition—hormonal ablation. Gonadotropin-releasing hormone (GnRH) agonsists (medications like Lupron) and continuous oral contraceptive pills are equally effective in treating the pelvic pain associated with endometriosis, which can lead to a decline in pain intensity and reported improved quality of life (Guzick 2011). This reported improved quality of life typically refers to pain improvement not necessarily improvement in sexual function. But hormonal ablation can also cause hirsutism and acne, hot flashes, bloating, vaginal dryness, headaches, mood lability and anxiety, orgasmic dysfunction, decline in sexual desire, and a different kind of dyspareunia. So, their utility in the treatment of endo is limited.
Hormonal ablation can result in a hormonal milieu unfavorable to the genital tissues. These medications often cause depletions of estradiol and testosterone, both of which are needed to keep certain genital tissues happy and healthy. Deficiencies in estradiol and testosterone can lead to diffuse tenderness of the vestibule, the entryway to the vagina. This, in turn, can cause pain with initial penetration—a condition we refer to as superficial dyspareunia. Superficial dyspareunia is typically described differently than deep dyspareunia, often referred to as a burning, dry raw, or sandpaper-like sensation. So, in essence, hormonal ablation in the treatment of endometriosis can result in trading one type of pain (deep/pelvic) for another (superficial).
When dyspareunia is present it can result in a vicious cycle of pain and sexual dysfunction. One researcher described it this way: The association between coital pain and sexual dysfunction is the result of repeated experiences of sex associated with pain and fear of pain. The fearful reaction in turn negatively affects desire, arousal, reward, lubrication, loss of genital congestion, and heightened pelvic floor tone in a circular model (Pluchino 2016). For many people, it can be difficult to break this cycle, resulting in years of unsatisfactory sex, failed romantic/sexual relationships, sexual avoidance, and sometimes feelings of isolation.
Fortunately, there are options beyond hormonal ablation in treating endometriosis. As we alluded to previously, a multidisciplinary approach is often best. Surgical excision of endo implants has been shown to improve pelvic pain, deep dyspareunia, and quality of life without resulting in some of the other negative sexual side effects associated with hormonal ablation. In fact, many people who undergo excisional surgery report an increase in frequency of sexual intercourse and improvements in several sexual function metrics. Surgery also avoids a “band-aid” kind of approach by actually addressing the implants directly, not simply trying to hormonally suppress their function. In addition to surgery, people with endo often benefit from sex therapy and pelvic physical therapy. Sex therapy can help recognize and treat associated the psychosexual ramifications of endo and can be useful in addressing potential effects on sexual partners. Pelvic floor dysfunction is almost always present in people with endometriosis. Pelvic floor PT can be helpful in managing persistent and recurrent pain, which can aid in breaking the pain reinforcement cycle.
There are a number of additional treatments that can be helpful. These include, but are not limited to: cognitive behavioral therapy, hypnosis, mindfulness and meditation, yoga, acupuncture, nutritional education and diet modification, traditional and neuropathic pain medications, cannabis, trigger point injections, peripheral nerve blocks, neuromodulation, and pelvic floor injection of botulinum toxin. Many people will require more than one treatment modality to address their endometriosis, so finding an experienced, multidisciplinary team is crucial.
Endometriosis is a common problem, but we have a long way to go in understanding its causes and recognizing the condition in individuals. Without a doubt, endo has a negative impact on sexual health and function, but so too can some of the treatments employed to manage the condition. The last thing you want to do is trade one sexual problem for another, so consider some of the therapies we discussed above that don’t have detrimental effects on sexual function. And most importantly, if you are experiencing some of the endo symptoms mentioned, say something. The sooner you find yourself a team of experienced providers, the quicker you will be on your way to treating endo and reclaiming your sexual and overall quality of life.
Buck, L.G.M., Hediger, M.L., Peterson, C.M., Croughan, M., Sundaram, R., Stanford, J., Chen, Z., et al. (2011). Incidence of endometriosis by study population and diagnostic method: the ENDO study. Fertility and Sterility; 96(2): 360-5.
Van Poll M, Van Barneveld E, Aerts L, et al. Endometriosis and Sexual Quality of Life. Sex Med 2020; 8: 532–544.
Barbara G, Facchin F, Buggio L, et al. What Is Known and Unknown About the Association Between Endometriosis and Sexual Functioning: A Systematic Review of the Literature. Reprod Sci 2017; 24: 1566–1576.
Shum LK, Bedaiwy MA, Allaire C, et al. Deep Dyspareunia and Sexual Quality of Life in Women With Endometriosis. Sex Med 2018; 6: 224–233.
Guzick DS, Huang LS, Broadman BA, Nealon M, Hornstein MD. Randomized trial of leuprolide versus continuous oral contraceptives in the treatment of endometriosis-associated pelvic pain. Fertil Steril. 2011 Apr;95(5):1568-73.
Pluchino N, Wenger Jean-Marie, Petignat P, et al. Sexual function in endometriosis patients and their partners: effect of the disease and consequences of treatment. Human Reprod Update 2016;6:762-774.
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