The Idiopathic Intracranial Hypertension Life Long PCOS study: Prevalence of comorbid PCOS and evaluation of the impact of PCOS on outcomes

Abstract text (incl. figure legends and references)

Question

Idiopathic intracranial hypertension (IIH) and Polycystic ovary syndrome (PCOS) affect women of reproductive age with obesity but have different hyperandrogenic profiles. The prevalence of comorbid PCOS in IIH patients is highly variable in the literature; and the longitudinal impact on visual and headache outcomes are unknown.

Methods

Assess the prevalence in a prospective IIH cohort (IIH Life database (2012-2021)) based on Rotterdam criteria from questionnaire and routine clinical practice data. Secondary aim to evaluate the impact of PCOS on IIH outcomes (visual and headache).

Results

398 females with IIH were followed up for a median of 10 months (range 0-87) and had presence or absence of PCOS documented. Prevalence of PCOS in IIH was 19.6% (78/398) by the Rotterdam criteria, with additional 14.6% (58) describing hyperandrogenic symptoms alone. There was a 3.2-fold increased risk for self-reported fertility problems and 4.4-fold for requiring medical help if comorbid PCOS was reported.

Females with IIH and comorbid PCOS did not have significantly different visual outcomes from those without PCOS, although the total retinal thickness improved more rapidly following baseline review in the PCOS cohort. Headache outcomes were variable and similar between the groups, with a worse initial headache frequency but more rapid improvement in the PCOS cohort.

Conclusions

Symptomatic hyperandrogenism is common in IIH patients who have previously been noted to have elevated levels of testosterone. Diagnosing co-morbid PCOS is important as it can impact fertility and long-term cardiovascular risk. From an IIH management aspect, comorbid PCOS does not confer worse visual or headache outcomes.