Many women with endometriosis experience pain during sexual intercourse. About 42% experience pain every time, and 37% experiecne it more than half the time. This pain can seriously affect their sex lives and partnerships, yet endometriosis-related dyspareunia is often neglected in healthcare, said Laura Hatzler, MD, head researcher at the Women’s Clinic at Charité Berlin in Germany, at the 64th Congress of the German Society of Gynecology and Obstetrics in Munich.
“We’re not talking about mild pain here,” she said. “In 50% of patients, the pain is at 8 to 10 on a pain scale, which is really severe pain.” Hatzler cited the results of an online survey of patients with endometriosis.
Sex Despite Pain
The suffering of the affected women is caused not only by the dyspareunia itself, however. Fearful of suffering severe pain again, they develop anxiety regarding sexual intercourse and try to avoid it. This anxiety, in turn, can lead to feelings of shame and guilt toward the partner.
While avoiding sex is a common response to pain during intercourse, “many patients continue to have sex in pain — not out of a desire for sexual satisfaction but out of fear of disappointing or losing their partner,” said Hatzler.
“All of this has an impact on the partnership and presents a challenge for many couples when it comes to family planning,” she added.
Consultation and Treatment
In a 2020 online survey, US gynecologists interviewed 572 women from different countries who had sought medical help for pain during intercourse. About 58% had not been told by their practitioner that the pain was a condition called dyspareunia, and 50% did not learn that the pain was related to their endometriosis. More than one third of women reported that therapies suggested by the practitioner — such as surgery, over-the-counter medications, and lubricants — had not resulted in any improvement.
A representative survey of 3800 patients with sexual problems conducted by Hatzler and her research group confirms that a lot goes wrong during the counseling of women with endometriosis who seek medical advice for dyspareunia.
The Doctor’s Initiative
“The most common healthcare request was to receive better information,” said Hatzler. Patients prefer to receive this information from their gynecologist without having to ask for it themselves. “Women want the conversation to be initiated by the doctor,” said Hatzler. And they appreciate it when the doctor gives examples of other women with similar experiences.
For the Berlin gynecologist, this doesn’t happen often, because “discussions around these issues take a lot of time.” So how can doctors better help these female patients?
Fulfilling Sex Life
“The good news is that it’s not a matter of completely restoring function,” explained Hatzler. This is not necessary for great sex. “If you ask older couples who look back on their sexuality throughout their lives, they describe great sex as intimacy, closeness, security, authenticity, communication, and transcendence,” she added. “Sexual function is, therefore, not necessary for a fulfilling sex life.”
She advises gynecologists to talk to their patients. “They are happy to be asked. They want to be heard, to feel that they are being taken seriously.” A range of questions can be asked to better classify the pain in terms of frequency and situations in which it occurs, which allows more targeted assistance. “But the most important thing is to show interest.”
Hatzler reminded the audience that numerous risk factors and comorbidities associated with endometriosis can also affect sexuality, most notably, psychiatric diagnoses, such as anxiety and depression. But the chronic inflammation that is common with endometriosis can affect sexual desire and arousal.
She referred to various questionnaires that may be helpful when talking to patients with endometriosis who have dyspareunia, such as the AGEM Basic Endometriosis Questionnaire, the German Pain Questionnaire, and the new module for visceral and urogenital pain (for women).
“Sexuality needs to find a place in multimodal therapy for endometriosis,” said Hatzler. It is known that sexuality is of great importance for quality of life. “Particularly 20- to 50-year-olds consider sex very important to their quality of life,” she said. “The peak here is between 30 and 40 years of age. During this time, the symptomatology of endometriosis plays an important role, and if not treated, has frequently already led to chronic pain as well.”
Sex therapy may be helpful, but it is not currently covered by health insurance, she said. One thing taught in sex therapy is that the meaning of sexuality goes beyond the dimension of arousal and pleasure. It would also help to understand troubling emotions that often arise in connection with sexuality. “For many women, it’s a great relief to understand that sex means more than penetration,” said Hatzler.
This article was translated from the Medscape German edition.
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