Resources for understanding hypothalamic amenorrhea versus PCOS

When you have no period, there is a standard workup doctors will do to try and determine the cause. They should do a physical exam, take a history and probably do some bloodwork. It is also fairly common to have a pelvic ultrasound.

When a woman with a history suggesting hypothalamic amenorrhea goes for an ultrasound, I warn her that it is common to see many small follicles (also called “cysts”) on her ovaries. That can lead to a doctor calling the ovaries “polycystic” and suggesting polycystic ovarian syndrome (PCOS) as a diagnosis.  As we described in our earlier post about HA versus PCOS, absent periods and ovaries with a lot of follicles are not sufficient to diagnose PCOS, especially with a history that points more toward hypothalamic amenorrhea.

We put together an information sheet to summarize the differences between hypothalamic amenorrhea and PCOS to help you and your doctors determine which is the correct diagnosis for you. In addition, we’re making the sixth chapter of No Period. Now What? (The HA/PCOS conundrum) available for download. This chapter not only discusses diagnosing HA and PCOS but also what might happen if you have both HA and PCOS, as well as some ideas for PCOS treatment and long-term concerns if you do in fact have PCOS. Enter your email address to receive an email with a download link for both. Please feel free to share the files: for example with your doctors and other women with HA/”lean” PCOS.

DiagnosingPCOSvsHAhalfpage

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Hope this helps!!  Any questions, please comment on this post or use the contact form!

Nico

In case you’re interested, references for the information sheet are listed below.

Hypothalamic Amenorrhea versus PCOS Information Sheet References

Diagnosing PCOS:

  • Johnson TRB, et al. “Evidence-Based Methodology Workshop on Polycystic Ovary
    Syndrome.” Bethesda, Maryland: National Institutes of Health, 2012. http://prevention.nih.gov/workshops/2012/pcos/docs/FinalReport.pdf
  • Rotterdam ESHRE/ASRM-Sponsored PCOS Consensus Workshop Group.
    “Revised 2003 Consensus on Diagnostic Criteria and Long-term Health Risks Related
    to Polycystic Ovary Syndrome (PCOS).” Human Reproduction. 19(1) 2004: 41-47. doi:
    10.1093/humrep/deh098

Diagnosing polycystic ovaries:

  • Balen AH, et al. “Ultrasound Assessment of the Polycystic Ovary: International
    Consensus Definitions.” Human Reproduction Update. 9(6) 2003: 505-14. doi: 10.1093/
    humupd/dmg044
  • Dewailly D, et al. “Definition and Significance of Polycystic Ovarian Morphology:
    A Task Force Report from the Androgen Excess and Polycystic Ovary Syndrome Society.”
    Human Reproduction Update. 20(3) 2014: 334-52. doi: 10.1093/humupd/dmt061
  • Lujan ME, et al. “Updated Ultrasound Criteria for Polycystic Ovary Syndrome:
    Reliable Thresholds for Elevated Follicle Population and Ovarian Volume.” Human
    Reproduction. 28(5) 2013: 1361-368. doi: 10.1093/humrep/det062

Hyperandrogenism:

  • Liang SJ, et al. “Clinical and Biochemical Presentation of Polycystic Ovary Sydrome
    in Women between the Ages of 20 and 40.” Human Reproduction. 26(12) 2011: 3443-
    449. doi: 10.1093/humrep/der302
  • Azziz R, et al. “The Prevalence and Features of the Polycystic Ovary Syndrome in
    an Unselected Population.” The Journal of Clinical Endocrinology & Metabolism. 89(6)
    2004: 2745-749. doi: 10.1210/jc.2003-032046
  • Azziz R, et al. “Criteria for Defining Polycystic Ovary Syndrome as a Predominantly
    Hyperandrogenic Syndrome: An Androgen Excess Society Guideline.” The Journal of
    Clinical Endocrinology & Metabolism. 91(11) 2006: 4237-245. doi: 10.1210/jc.2006-0178
  • Sivayoganathan D, et al. “Full Investigation of Patients with Polycystic Ovary Syndrome
    (PCOS) Presenting to Four Different Clinical Specialties Reveals Significant
    Differences and Undiagnosed Morbidity.” Human Fertility. 14(4) 2011: 261-65. doi:
    10.3109/14647273.2011.632058
  • Ferriman D, Gallwey JD. “Clinical Assessment Of Body Hair Growth In Women.”
    The Journal of Clinical Endocrinology & Metabolism. 21(11) 1961: 1440-447. doi: 10.1210/jcem-21-11-1440
  • Kar, S. “Anthropometric, Clinical, and Metabolic Comparisons of the Four Rotterdam
    PCOS Phenotypes: A Prospective Study of PCOS Women.” Journal of Human
    Reproductive Sciences. 6(3) 2013: 194. doi: 10.4103/0974-1208.121422
  • Rotterdam ESHRE/ASRM-Sponsored PCOS Consensus Workshop Group.
    2004. doi: 10.1093/humrep/deh098

Multi-cystic ovaries in women with hypothalamic amenorrhea:

  • Robin G, et al. “Polycystic Ovary-Like Abnormalities (PCO-L) in Women with
    Functional Hypothalamic Amenorrhea.” The Journal of Clinical Endocrinology & Metabolism.
    97(11) 2012: 4236-243. doi: 10.1210/jc.2012-1836
  • Falsetti, L. “Long-term Follow-up of Functional Hypothalamic Amenorrhea and
    Prognostic Factors.” The Journal of Clinical Endocrinology & Metabolism. 87(2) 2002):
    500-05. doi: 10.1210/jcem.87.2.8195

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