A September Campus meeting organised by the SIG Nursing and Midwifery reviewed current approaches to endometriosis management but heard that care must depend on a multidisciplinary approach in which nurses and midwives are an essential part.
A recurring theme throughout this comprehensive three-day Campus meeting on endometriosis in daily practice was the unacceptable delay in diagnosis, a situation replicated worldwide with some women waiting up to a decade. Charles Chapron described the situation as ‘absurd’ in his opening presentation - although also emphasising the need to reduce ‘inadequate and unnecessary’ surgical procedures, especially given high rates of symptom/lesion recurrence.
Now is the time, added Chapron, from Cochin University Hospital in Paris, for a new paradigm for managing endometriosis. The approach should be multi-disciplinary and include surgery, but also medical treatment, ART and radiology. The rationale behind medical treatment includes efficacy in decreasing inflammation, a key aspect of pathogenesis, and the downsides of surgery, such as a zero effect on retrograde menstruation, inability to eradicate pain, association with decreased ovarian reserve, and attendant risks such as neurogenic bladder.
For a woman with endometriosis but no infertility and no immediate desire for a baby, Chapron said his personal approach was based on follow-up and long-term medical treatment. For patients wishing to get pregnant but needing surgery, he said procedures should be performed not at diagnosis but when women want to conceive, with ovarian reserve a key to timing.
His own medical department has been exploring how to optimise diagnosis, to shift from surgical (biopsy) to non-surgical approaches. The result is a questionnaire-based system which has demonstrated 85% accuracy in identifying high risk patients for referral to specialist radiologists.(1)
The afternoon of this Campus meeting featured a very practical session covering all aspects of transvaginal ultrasound and MRI - including how and when each should be used, illustrated with detailed case histories.
Radiologist Corinne Bordonne said ultrasound can provide answers in 90% of endometriosis diagnoses and equally clear results for small endometriomas (<10 mm). Ultrasound, she said, is superior for rectal and sigmoid colon endometriosis, but MRI is superior in some instances – eg, for adolescents (the lack of a probe is an advantage) and abnormal cysts.
New advances in imaging technology can speed up diagnosis and include MRI enterography, which shows the entire digestive system (although patients must fast beforehand), and specific MRI for patients who experience shoulder pain during menstruation. However, before the expert use of imaging technology, she added that a medical history (eg, early menarche) and clinical examination (as advised in ESHRE guidelines) are crucial in identifying at-risk women and in achieving treatment goals (eg, live birth).
Presentations on day two of this Campus, organised by the SIG Nursing and Midwifery, focused on disease management from the perspective of ART, pregnancy and drug treatment.
What is the impact of endometriosis on egg quality and quantity, asked Pietro Santulli, also from Cochin University Hospital. The effect on oocyte and embryo quality is small, according to data from a recent study showing that aneuploidy rates among IVF patients with endometriosis are equivalent to those of age-matched controls.(2) However, in many other studies women with the disease were lost to follow-up because of spontaneous conception.
However, the picture for quantity is less positive according to results from a cohort study of ART outcomes in women with endometrioma.(3) AMH levels were similar in the two groups, but higher gonadotrophin doses were needed for women with endometrioma, and prior surgery for endometrioma was a risk factor for poor ovarian response.
Professor Santulli’s take-home message was that, even in severe cases, endometriosis is a good indication for ART based on evidence from live birth rates, although chances are reduced when endometriosis and adenomyosis occur together. For infertile women without pain, he suggested ART without surgery, because chances increase significantly after four IVF cycles.
Management is more challenging for infertile women wishing to conceive but who do experience pain, he said. Surgery remains the best (and only) option for these cases, but the strategy lies in planning. One recognised approach is to offer patients hormone treatment for three months prior to starting IVF, although some patients find oral contraception at this time unacceptable.
However, oral contraceptives are among first and second-line hormone therapies to treat infertility and pain. Yet it’s a case of trial and error to find which works for each individual patient. As yet, no ideal drug for managing endometriosis exists: one that is low cost, destroys lesions, improves symptoms including pain, has limited side effects and can be used long-term. Silvia Vannuccini from the University of Florence advises nurses and midwives to balance benefits and drawbacks, and explain to patients what to expect. In future, the hope is that ‘we’ll develop something different from hormonal treatments’, said Vannuccini, who outlined new approaches in the pipeline such as antioxidants, monoclonal antibodies, anti-angiogenetic drugs, and cannabinoids.
Pregnancy itself has been regarded as a treatment for endometriosis symptoms. But is there any evidence for this or can the disease actually undermine pregnancy outcomes? Data presented by Guillaume Parpex, from Bichat–Claude Bernard Hospital, suggest that lesions may decrease or stabilise after pregnancy. However, a systematic review showed pregnancy does not seem to result systematically in benefits for women with endometriosis: some lesions show regression mostly in the third trimester, while others remain stable or increase.(4)
Although rare, complications from pregnancy such as bowel perforation are rare. A prospective cohort study involving 1351 women found that endometriosis is not a risk factor for preterm birth but does increase the chance of threatened preterm labour and small for gestational age.(5) In view of these findings, Parpex concluded that pregnancy with endometriosis should be monitored but considered as a normal pregnancy.
On the final day, a round-table discussion emphasised the need for multi-professional teams to improve diagnosis, treatment and care management for women who feel they are neither heard nor taken seriously. Endometriosis remains a chronic incurable condition which involves life-long treatment. Midwives and nurses, it was agreed, must be part of a support system which focuses on quality of life and care, with personalised treatment and a long-term plan based on efficiency and safety.
1. Chapron C, Lafay-Pillet M-C, Santulli P, et al. A new validated screening method for endometriosis diagnosis based on patient questionnaires. Lancet (eClinical Medicine) 2022; doi.org/10.1016/j.eclinm.2021.101263
2. Juneau C, Kraus E, Werner M, et al. Patients with endometriosis have aneuploidy rates equivalent to their age-matched peers in the in vitro fertilization population. Fertil Steril 2017; 108: 284-286.
3. Bourdon M, Raad J, Dahan Y, et al. Endometriosis and ART: A prior history of surgery for OMA is associated with a poor ovarian response to hyperstimulation. PLOS ONE 2018; https://doi.org/10.1371/journal.pone.0202399
4. Leeners B, Damaso F, Ochsenbein-Kölble N, Farquhar C. The effect of pregnancy on endometriosis — facts or fiction? Hum Reprod Update 2018; 24: 290–299.
5. Marcellin L, Goffinet F, Azria E, et al. Association between endometriosis phenotype and preterm birth in France. JAMA Network Open 2022; e2147788; doi.org/10.1001/jamanetworkopen.2021.47788