Endometriosis and sexuality
The perception is biased
Numerous articles describe sexual problems in women with endometriosis. The perception of a causal relationship between endometriosis and sexuality and pain during intercourse however is highly biased and more often wrong than right.
The 6 insults to the sexual life of women with endometriosis and the 6 mistakes
Pain during intercourse due to endometriosis
It is well established, and clinically obvious that a deep endometriosis nodule between vagina, uterus and bowel can cause severe pain during intercourse. It also is clear that cystic ovarian endometriosis, especially when situated low in the pouch of Douglas can cause pain during intercourse (1-4). Also typical lesions in the utero-sacral ligaments can cause discomfort. This pain is reproduced by clinical exam and during ultrasound (5) otherwise the diagnosis is wrong. This obviously affects endometriosis and sexuality.
Mistake 1 : A frequent mistake is the conclusion that pain during intercourse is caused by endometriosis when in a women with subtle or typical endometriosis, the pain during intercourse cannot be reproduced during gynaecological exam or transvaginal ultrasound exam. It is highly unlikely that this pain is caused by endometriosis.
Pain during intercourse not due to endometriosis
There are many other reasons for pain during intercourse such as introital pain, hymenal pain, pain in the episiotomy scar or in another vaginal scar, pain due to a retro-flected uterus and sometimes adenomyosis. In addition pain the abdominal wall, and sceletal pain (sacro ileac joint) after intercourse are often described as sexual pain.
Mistake 2 : not performing a thorough exam to exclude other pathology even If a women has endometriosis. As an example, we recently saw a woman with severe pain making intercourse impossible since 5 years and a history of surgery for ‘deep endometriosis’ and 2 subsequent laparoscopies with some endometriosis lesions. A Spigelian hernia was found, sutured and the dyspareunea was solved. This is so rare that we did presented this at the ESGE 2016 in Brussels and published it in Gynaecological Surgery (2017, A. Ussia et all, Spigelian hernia, in press). Endometriosis and sexuality thus were not causally related.
Chronic pelvic pain
Chronic (pelvic) pain is psychologically disrupting causing mood swings , depressive mood, less quality of life and (joia di vivere) and often sexual problems.
The causes of chronic pelvic pain are numerous (see website).
Mistake 3 : often other causes of chronic pelvic pain are not diagnosed and treated if the woman has endometriosis. Examples are peritoneal pockets with a spider, Allan and Masters, pelvic congestion and varicosities, interstitial cystitis etc. A frequent mistake occurs when a blocked sacro-ileac joint is not recognized.
Women with endometriosis are anxious
Women with endometriosis are anxious , since endometriosis has the reputation to be progressive, without a cure, and with a future infertility and a risk of a hysterectomy later and eventually a cancer. In addition women these women feel guilty because of the delayed first pregnancy, and because of not following all the recommendations of a healthy life style 6.
Mistake 4 : Inadequate information about endometriosis. Nothing of this is true : endometriosis is not progressive and not recurrent. The impact on fertility is not that clear unless severe adhesions are present. We recently reviewed the epidemiology of endometriosis and with the information of today woman should not blame themselves, nor should they fear cancer or an hysterectomy.
Medical therapy without a diagnosis
Medical therapy for endometriosis can affect sexuality. This is true for oral contraception, for artificial menopause and for progestagens only. Many women however are medically treated for suspicion of endometriosis without a diagnosis. This treatment if often continued for many years, notwithstanding sexual problems. Unfortunately this is done too frequently and this results in the unnecessary treatment of many women without endometriosis, in a missed diagnosis and treatment of a curable problem.
Mistake 5 : The effect of medical treatment of endometriosis on sexuality and mood swings is often disregarded. Too often medical therapy is considered necessary to prevents progression of endometriosis. This however has never been proven and it probably is wrong.
Without experience endometriosis is not always recognized and surgery for endometriosis is not always well done. Surgery can be incomplete, or over-aggressive with avoidable bowel resections which cause urinary and bowel and sexual problems. A slow surgeon and the absence of adhesion prevention (7) can result in severe postoperative adhesions and pain. Ovarian surgery risks to destroy the ovarian reserve if not well done.
Mistake 6 : Sexual problems are often caused by surgery for endometriosis. This is obvious for incomplete surgery, and for the major sexual problems after nerve damage especially following a bowel resection.
CONCLUSION : endometriosis and sexuality
Women with sexual problems and pain during intercourse with or without endometriosis need
- Correct information on endometriosis ; this is the reason we started this website
- A complete diagnosis is fundamental. This requires a knowledge of endometriosis and all other pathologies, a clinical exam, and often a diagnostic laparoscopy by someone with knowledge of the many causes of pelvic pain, including endometriosis. Important that he/she knows that subtle lesions are not a cause of pain.
- A treatment of all pathology found. Almost all pathologies can be treated during laparoscopy including superficial and cystic and deep endometriosis if recognized and if the gynecologist has the skills. Bowel resections of the rectum should be avoided and with our actual knowledge the indications are becoming rare.
- Following surgery, provided well done and complete, it is unclear if medical therapy is necessary.
- If sexual problems persist notwithstanding correct therapy psychological and sexuological help should be considered. Too many women live with a missed diagnosis.
(1) Lukic A, Di PM, De CS, Nobili F, Schimberni M, Bianchi P et al. Quality of sex life in endometriosis patients with deep dyspareunia before and after laparoscopic treatment. Arch Gynecol Obstet 2016; 293(3):583-590.
(2) Di DN, Montanari G, Benfenati A, Monti G, Leonardi D, Bertoldo V et al. Sexual function in women undergoing surgery for deep infiltrating endometriosis: a comparison with healthy women. J Fam Plann Reprod Health Care 2015.
(3) Fritzer N, Tammaa A, Salzer H, Hudelist G. Dyspareunia and quality of sex life after surgical excision of endometriosis: a systematic review. Eur J Obstet Gynecol Reprod Biol 2014; 173:1-6.
(4) Hummelshoj L, De GA, Dunselman G, Vercellini P. Let’s talk about sex and endometriosis. J Fam Plann Reprod Health Care 2014; 40(1):8-10.
(5) Koninckx PR, Ussia A, Adamyan L, Wattiez A, Donnez J. Deep endometriosis: definition, diagnosis, and treatment. Fertil Steril 2012; 98(3):564-571.
(6) Koninckx PR, Ussia A, Keckstein J, Wattiez A, Adamyan L. Epidemiology of subtle, typical, cystic, and deep endometriosis: a systematic review. Gynaecol Surgery 2016; 13:457-467.
(7) Koninckx PR, Gomel V, Ussia A, Adamyan L. Role of the peritoneal cavity in the prevention of postoperative adhesions, pain, and fatigue. Fertil Steril 2016; 106(5):998-1010.