How to Advocate for Yourself When Diagnosed with PCOS MyOva

How to Advocate for Yourself When Diagnosed with PMOS (PCOS)

You left the appointment with a label and almost nothing else. No explanation of what is driving your symptoms, maybe a prescription for the pill, a vague suggestion to "lose some weight", and a follow-up in six months.

You're not imagining it. In an international survey of 1,385 women with PCOS, a third (33.6%) waited more than two years for a diagnosis, nearly half (47.1%) saw three or more health professionals first, and only 15.6% were satisfied with the information they were given [1]. UK data points the same way: in Verity's 2025 patient survey, 34% waited more than four years [2].

Here's what has changed. PCOS has been renamed PMOS (polyendocrine metabolic ovarian syndrome), the NHS now uses the new name, and NICE has put out its first draft guideline on the condition, with the final version due in December 2026 [3, 4, 5]. Your diagnosis is a starting point, not a verdict. This guide shows you how to prepare, what to ask for, which popular advice the guidelines don't actually back, and what to do if you're dismissed. (For the background on the new name, see our guide to PCOS being renamed PMOS, and for what to request in the lab, our guide to PMOS blood tests.)

A woman's hands filling in a printed appointment checklist with a pen at a wooden table by a window, with a mug of tea and a phone beside it, preparing for a GP appointment

In this guide:

What Does It Mean to Advocate for Yourself with PMOS (PCOS)?

In short: Self-advocacy means preparing, asking clear questions and expecting a plan. It's informed teamwork with your clinician, not a fight.

Advocating for yourself doesn't mean being aggressive, dramatic or "difficult". It means walking in with your pattern, your priorities and a few specific questions, and leaving with a plan you understand.

You're also not asking for a favour. The 2023 international guideline says tailored, respectful information should be offered to everyone with PCOS, and that clinicians should use shared decision making and support patients to manage their own health [6]. When you ask questions, you're asking for what the guideline already describes.

It isn't your job to carry the whole system on your back, and the numbers below show where it falls short. But a ten-minute appointment goes further when you've done a little groundwork. This is what I wish someone had told me at the start.

Why Does PMOS (PCOS) Take So Long to Diagnose?

In short: Symptoms vary, no single test confirms it, and awareness is patchy. In one survey, a third of women waited over two years for a diagnosis.

The Gibson-Helm survey is the best-known picture of what that wait feels like. Of 1,385 women, 33.6% waited more than two years, 47.1% saw three or more health professionals, only 35.2% were satisfied with their diagnosis experience, and just 15.6% were satisfied with the information they received [1].

The UK evidence isn't better. In a 2020 study of 323 women, 83.1% of respondents said their GP could have done more to help. About three in four (74.9%) said PCOS had affected their mental health, but only 34.9% recalled discussing it with their GP [7]. Verity's 2025 patient survey, with more than 2,000 responses, found 34% waited over four years, and respondents rated NHS PCOS management 1.9 out of 10 on average [2]. That's a charity survey of the people who chose to answer, so read it as a snapshot of that community, not every woman with PMOS.

Part of the delay is that PMOS doesn't look the same in everyone. Adult diagnosis needs two of three features: irregular or absent ovulation, signs or blood tests showing raised androgens, and polycystic-appearing ovaries on ultrasound, with the 2023 guideline also allowing an anti-Müllerian hormone (AMH) test in place of the scan in adults [8, 6]. If you have irregular cycles and raised androgens, you don't need the scan at all [6]. The NHS says tests include blood tests to check hormone levels and, for people over 18, an ultrasound [4]. No single result is "the" test, so one normal result doesn't rule it out.

It's also common. NICE says PMOS affects around 1 in 8 women, and the WHO estimates 10 to 13% of women of reproductive age, with up to 70% of those affected undiagnosed [5, 9]. If you suspect you have it, you're not being dramatic. You're being statistically reasonable.

How Do You Prepare for a PMOS (PCOS) Appointment?

In short: Bring a cycle and symptom diary, your top three questions and any past results. The NHS suggests keeping a diary before you see your GP.

What to bring

A symptom diary. The NHS says it can be useful to keep a diary of your symptoms throughout the menstrual cycle before you see your GP [10]. Note period dates, flow and pain, skin and hair changes, mood, sleep and energy. Add the impact: "Pain was 9 out of 10 for three days and I missed work twice" is much harder to wave away than "my periods are bad". An app or a notes page both work.

Your top three priorities. Time runs short. Decide in advance what you most want to leave with, whether that's a diagnosis, a plan for cycles, help with hair or skin, or a conversation about fertility.

Past results, with the numbers. "It was normal" tells you little. Ask for the actual values and reference ranges. In England you can see new entries to your GP record, such as test results, in the NHS App, though your GP may hide sensitive information, and older history needs a request to your practice [11].

A second pair of ears. A friend or partner can take notes while you talk. It helps you stay calm, and it helps you remember what was said.

Questions worth asking

  • Which of the three features (cycle pattern, androgens, ovaries) are you assessing me for, and what have you ruled out?
  • Have thyroid problems and raised prolactin been checked, as other possible causes?
  • How will you check my blood sugar, and how often?
  • What are my options for the symptoms that bother me most, and what are the pros and cons of each?
  • When will my next review be, and what will you monitor?
  • If we can't resolve this, can you refer me to a specialist, dietitian or mental health support?
  • If you decide not to test or refer, can you note that in my record?

These aren't confrontational questions. They're informed ones, and a good clinician will engage with them. If they cause friction, that tells you something about the appointment, not about you.

Which Tests Can You Ask About?

In short: Ask what's being checked and why. Guidelines back hormone, exclusion and glucose tests, but not every test you see recommended online.

Plenty of online advice hands you a long list of tests. Some matches the guidelines and some doesn't. The table below sets out what the 2023 international guideline and NICE's 2026 draft actually say [6, 5].

Test What the guidance says What to ask
Testosterone Total and free testosterone, with free testosterone estimated using the free androgen index. A highly accurate lab method (LC-MS/MS) is preferred. "Is free testosterone being calculated, and was I on the pill when this was taken?"
Thyroid (TSH) and prolactin Used to rule out other causes of irregular cycles. NICE's draft adds oestradiol, LH and FSH for the same reason. "Have other causes been ruled out?"
Ultrasound or AMH For adults, either can assess the ovaries. NICE's draft offers one or the other, not both. Neither is needed under 18. "Do I need an ultrasound, or is AMH an option?"
Blood sugar The guideline recommends a 75 g oral glucose tolerance test. NICE's draft offers HbA1c or fasting glucose, plus a lipid profile. "How is my glucose status being checked, and how often?"
Fasting insulin The guideline says clinically available insulin assays have limited relevance and shouldn't be used in routine care. "What will my glucose results tell us?"

Two points deserve a closer look. First, fasting insulin. It's one of the most common things women are told to demand, and it's understandable: insulin resistance is a real feature of the condition, with estimates running as high as about 70% depending on how it's measured [12]. But the 2023 guideline says routine insulin testing isn't recommended in clinical care, so asking how your glucose status is being assessed will usually get you further than asking for one specific test [6].

Second, the old advice to request a day 2 to 3 LH to FSH ratio. That ratio isn't one of the three diagnostic features. NICE's draft does include LH and FSH, but as part of ruling out other causes of irregular or absent cycles [5].

One practical catch: hormone tests are hard to interpret on the combined pill. The 2023 guideline says assessment on the pill is difficult because it raises SHBG, and NICE's draft advises people taking oestrogen-containing contraceptives to stop for at least 3 months before a blood test for raised androgens [6, 5]. Don't stop contraception without talking to your GP first, particularly if you need it to prevent pregnancy.

What about vitamin D and ferritin? We couldn't find routine testing for either recommended for PMOS in the 2023 guideline or NICE's draft. If you're persistently exhausted, it's still reasonable to raise iron and thyroid as separate questions, and your GP can decide what's appropriate. Private test kits are your choice, but take the numbers and reference ranges to your GP and ask how they'd change your care.

Who Should Be on Your PMOS (PCOS) Care Team?

In short: Your GP coordinates care and can refer you. You may also need a gynaecologist, endocrinologist, dietitian or mental health support.

PMOS has hormonal, metabolic, reproductive and emotional sides, and one short GP appointment can't cover all of them. A better question is: who should be on my team?

Your GP is usually the coordinator. The NHS says you're entitled to ask for a referral to a specialist, though whether you get it depends on what your GP feels is clinically necessary [13]. If you are referred for non-urgent consultant-led care, you have the right to start treatment within 18 weeks, and you may have the right to choose which hospital in England you attend [13].

A gynaecologist or endocrinologist is worth asking for if your symptoms aren't well controlled, your results are unclear, or you're trying to conceive. In a UK study, women felt fertility got too much emphasis [7], so it's fair to ask whether the clinician manages PMOS as a whole-body condition.

A registered dietitian can help you sort evidence from noise. The 2023 guideline found no evidence that any one diet type is better than another, so look for someone who is flexible and doesn't open with restriction [6].

Mental health support belongs on the list, which is why it gets its own section below.

One change to watch: NICE's draft recommends an annual review for everyone aged 10 and over with PMOS, covering your symptoms, any concerns about cycles, fertility, weight, mood and sleep apnoea, your medicines, and your long-term risk of conditions such as heart disease or diabetes [5]. It's a draft, so it isn't official yet. But it gives you a useful thing to ask: "Does this practice do an annual review for PMOS?"

What Treatment Options Should You Know About?

In short: Options include lifestyle support, the pill, anti-androgens, metformin and letrozole for ovulation. The right mix depends on your priorities.

PMOS is a long-term condition, but treatments and lifestyle changes can help with symptoms [4]. Which ones suit you depends on what's affecting you most, so it helps to bring your priorities to the conversation. The guidelines describe options like these, and every one of them is a prescribing decision for your clinician [6, 5].

For irregular periods: the combined oral contraceptive pill could be recommended, with progestogen options if the pill isn't suitable. It's a way to manage symptoms, so it's fair to ask what the alternatives are and what to expect when you stop.

For excess hair or acne: an anti-androgen such as spironolactone could be considered, with effective contraception, typically after a trial of the pill and/or cosmetic treatment.

For metabolic health: metformin should be considered for adults with a BMI of 25 or above, to improve outcomes including insulin resistance, glucose and lipids. It isn't a first-line fertility treatment.

If you're trying to conceive: letrozole is the first-line medicine for ovulation induction in women who aren't ovulating and have no other infertility factors. NICE's draft says the same, and adds that conception is often possible.

For everyone: healthy eating and regular activity are recommended, with no single best diet or exercise type. The evidence is more modest than the internet suggests. A Cochrane review of 15 trials in 498 women found low-quality evidence that lifestyle changes may improve the free androgen index and weight, and none of the trials reported on menstrual regularity [14]. NICE's draft also says a healthy diet and activity benefit people regardless of BMI, and tells clinicians to ask permission before taking weight and height measurements [5]. That's a reason to look for support that suits you, not a reason to blame yourself.

What about inositol? It's one of the best-known supplements in this area, and it gets mixed reviews from the guidelines. A 2024 systematic review of 30 trials, carried out for the international guideline, concluded that the evidence is limited and inconclusive [15]. The 2023 guideline says it may be considered based on your preferences and values, given its low risk [6]. NICE's draft is more cautious: it advises that there's uncertainty about the benefit for metabolic health and that inositol isn't effective for fertility problems [5]. If you're curious, treat it as an optional extra to discuss with your GP, not a substitute for the options above.

Why Does Mental Health Belong in the Conversation?

In short: Depression and anxiety symptoms are several times more common with PMOS. Ask for them to be assessed as part of your care.

This one doesn't come up enough. A meta-analysis found women with PCOS had about 3.8 times the odds of depressive symptoms and 5.6 times the odds of anxiety symptoms compared with women without it, and the associations held in analyses matched for BMI [16]. An earlier meta-analysis found anxiety symptoms in 20.4% of women with PCOS versus 3.9% of controls [17].

That's why the 2023 guideline recommends screening for depression in all adults and adolescents with PMOS, and for anxiety in all adults, using validated tools [6]. NICE's draft says low mood, depression and anxiety are common and should be assessed and managed under its existing guidelines [5].

So if mood, rage, panic or low energy are part of your picture, say so in the first five minutes, not as an afterthought at the door. It's part of PMOS care, not separate from it. If you ever feel unable to cope, speak to your GP, call NHS 111, or contact Samaritans free on 116 123. In an emergency, call 999.

What Can You Do If You Feel Dismissed?

In short: Ask for reasons in your notes, request a referral, see another clinician or change practice, and use Verity's resources. You have options.

Your body is trying to tell you something. When a clinician doesn't listen, that isn't evidence that nothing is wrong. Here's what you can practically do.

Ask what happens next, and ask for it in writing. "Can you note in my record that I asked about a referral and what the reason was for declining?" is calm, fair and creates continuity.

Ask for a referral. You're entitled to ask, and it's the GP's call on clinical need [13].

Ask for a second opinion. It's not a legal right, but the GMC expects doctors to respect your right to seek one. A practical route is to ask for another GP in the practice or a referral elsewhere [18].

Change practice. Everyone in England can register with a different GP surgery for free, with no reason needed, though a practice can refuse if it isn't taking new patients or you live outside its area [19].

Use Verity's resources. Verity, the UK PCOS charity, has a booklet called "Getting the Best from Your Doctor" covering testing, referrals and advocacy. It asks for a donation but will send it free if you email and ask [20]. It also has a template letter you can send to your GP practice inviting clinicians to take its PMOS clinical-management course [21].

Make a complaint if you need to. Start with the practice or provider, and the Patient Advice and Liaison Service (PALS) can explain the process [22].

A normal result on one test doesn't cancel out your lived experience. You know your body. You're not being difficult, you're being the person your health requires you to be. For the bigger policy picture, our guide to the Women's Health Strategy explains what the 2026 reset means for you.

Where Does MyOva Fit In?

In short: MyOva makes food supplements, not treatments. They're an optional extra to discuss with your GP, never a replacement for care.

MyOva makes Myoplus and Preconception, so you deserve the straight version. Neither is a treatment for PMOS, and neither replaces medical care or the conversations above.

Myoplus provides 4000 mg of myo-inositol a day with chromium, folate and vitamin B6. Chromium contributes to the maintenance of normal blood glucose levels, folate contributes to normal psychological function and to a reduction of tiredness and fatigue, and vitamin B6 contributes to the regulation of hormonal activity. As the 2024 review above shows, the evidence on inositol itself is limited and inconclusive [15].

MyOva Myoplus Myo-Inositol supplement
Daily Food Supplement
Myoplus Myo-Inositol

4000 mg myo-inositol a day with chromium, which contributes to the maintenance of normal blood glucose levels, plus vitamin B6 and folate.

Preconception is a daily formula for people preparing for pregnancy. It provides 2000 mg of myo-inositol with folate, vitamin D3, zinc and vitamin B6, plus a wider range of vitamins and minerals. Zinc contributes to normal fertility and reproduction, and vitamin B6 contributes to the regulation of hormonal activity.

MyOva Preconception supplement
Daily Food Supplement
Preconception

2000 mg myo-inositol with folate, vitamin D3 and zinc, which contributes to normal fertility and reproduction, plus vitamin B6 and a broad vitamin and mineral range.

Safety first. Speak to your GP or pharmacist before taking any supplement if you take other medicines, including metformin or hormonal contraceptives, if you're pregnant or breastfeeding, or if you're trying to conceive. Don't combine supplements without checking the product guidance, so you don't double up on nutrients. Food supplements shouldn't replace a varied diet or medical treatment.

Infographic titled Your PMOS Appointment Checklist with three steps: before, track your cycle and symptoms, write your top three questions and gather past results; in the room, ask which features and causes were checked, how blood sugar is assessed, and about options and your next review; after, check your notes in the NHS App, ask for a referral if you need one and book your annual review

Frequently Asked Questions

What should I say to my GP if I think I have PMOS (PCOS)?

Be specific about your symptoms, how long you've had them and how they affect daily life, and bring your diary. Say which of the three features you think apply: irregular cycles, signs of raised androgens such as hair growth or acne, or both. Then ask what tests they'd suggest and what the plan is if the results are unclear [6, 4].

Should I ask for a fasting insulin test?

The 2023 international guideline says clinically available insulin assays are of limited relevance and shouldn't be used in routine care. It recommends an oral glucose tolerance test for assessing glycaemic status, and NICE's draft offers HbA1c or fasting glucose. A better question is, "How are you checking my blood sugar?" [6, 5].

Is the contraceptive pill the only treatment for PMOS (PCOS)?

No. The pill is one option for irregular cycles and excess hair. Others include anti-androgens, metformin for metabolic health, letrozole for ovulation induction, and lifestyle support, depending on your goals. The pill manages symptoms and isn't suitable for everyone, so it's fair to ask for the alternatives [6, 5].

Do I need to lose weight before I'm taken seriously?

No. NICE's draft says a healthy diet and regular activity benefit people regardless of BMI, and that clinicians should ask permission before taking weight and height measurements and explain why. If your concerns are brushed aside as a weight problem, ask what else could be contributing and what the plan is for your symptoms [5].

Can lifestyle changes or supplements replace medical care?

No. Lifestyle changes are recommended for everyone with PMOS, but the evidence on their effect is modest and low quality [14]. Inositol evidence is limited and inconclusive [15]. Supplements aren't treatments, so they can sit alongside your care and shouldn't replace it.

The Bottom Line

Advocating for yourself isn't about demanding every test you've seen online. It's about knowing what the guidelines actually recommend, bringing your pattern and your priorities, and asking what happens next. Where advice has changed, such as fasting insulin, LH to FSH ratios and routine testing, it's worth following the evidence rather than the checklist.

Hormonal literacy isn't complicated, it's just rarely taught. Start with one thing: your next appointment. Keep your diary, write down your top three questions, and ask for a plan. Your diagnosis is a starting point, not a verdict.

Related Reading

This article is for educational purposes only and does not constitute medical advice. Guidance details are accurate to the sources cited at the time of writing, and NICE's PMOS guideline is still in draft. MyOva products are food supplements, not medicines, and are not intended to diagnose, treat, cure or prevent any disease. If you think you may have PMOS (PCOS), or your symptoms are changing, speak to your GP or a qualified healthcare professional before making changes to your treatment or supplements.

References

  1. Gibson-Helm M, Teede H, Dunaif A, Dokras A. Delayed diagnosis and a lack of information associated with dissatisfaction in women with polycystic ovary syndrome. J Clin Endocrinol Metab. 2017;102(2):604-612. doi:10.1210/jc.2016-2963
  2. All-Party Parliamentary Group on PCOS. Breaking the Cycle: Addressing Systemic Failures in PCOS Diagnosis and Management (includes Verity 2025 patient survey data). September 2025. https://www.verity-pcos.org.uk/uploads/6/7/0/2/6702442/verity_appg_pcos_report_sept25.pdf
  3. Teede HJ, et al. Renaming of polycystic ovary syndrome as polyendocrine metabolic ovarian syndrome (PMOS), international consensus. The Lancet. May 2026. doi:10.1016/S0140-6736(26)00717-8
  4. NHS. Polyendocrine metabolic ovarian syndrome (PMOS) (formerly polycystic ovary syndrome). Reviewed 30 June 2026. https://www.nhs.uk/conditions/polyendocrine-metabolic-ovarian-syndrome-pmos/
  5. National Institute for Health and Care Excellence. Polycystic ovary syndrome: assessment and management. Draft guideline GID-NG10436, consultation 1 July to 11 August 2026 (final expected December 2026). https://www.nice.org.uk/guidance/gid-ng10436; and NICE news: NICE recommends annual review for PMOS in new draft guideline aimed at improving diagnosis and care. July 2026.
  6. Teede HJ, Tay CT, Laven JJE, Dokras A, Moran LJ, et al. Recommendations from the 2023 international evidence-based guideline for the assessment and management of polycystic ovary syndrome. Hum Reprod. 2023;38(9):1655-1679. doi:10.1093/humrep/dead156
  7. Hillman SC, Bryce C, Caleyachetty R, Dale J. Women's experiences of diagnosis and management of polycystic ovary syndrome: a mixed-methods study in general practice. Br J Gen Pract. 2020;70(694):e322-e329.
  8. Rotterdam ESHRE/ASRM-Sponsored PCOS Consensus Workshop Group. Revised 2003 consensus on diagnostic criteria and long-term health risks related to polycystic ovary syndrome. Hum Reprod. 2004;19(1):41-47.
  9. World Health Organization. Polycystic ovary syndrome. Fact sheet, 22 January 2026. https://www.who.int/news-room/fact-sheets/detail/polycystic-ovary-syndrome
  10. NHS. Period problems: when to see a GP. https://www.nhs.uk/conditions/periods/period-problems/
  11. NHS. Appointment notes and other updates in the NHS App. Reviewed 13 January 2026. https://www.nhs.uk/nhs-app/help/health-records-in-the-nhs-app/notes-and-updates/
  12. Diamanti-Kandarakis E, Dunaif A. Insulin resistance and the polycystic ovary syndrome revisited: an update on mechanisms and implications. Endocr Rev. 2012;33(6):981-1030. doi:10.1210/er.2011-1034
  13. NHS. Referrals for specialist care. https://www.nhs.uk/nhs-services/hospitals/referrals-for-specialist-care/
  14. Lim SS, Hutchison SK, Van Ryswyk E, Norman RJ, Teede HJ, Moran LJ. Lifestyle changes in women with polycystic ovary syndrome. Cochrane Database Syst Rev. 2019;3:CD007506.
  15. Fitz V, Graca S, Mahalingaiah S, et al. Inositol for polycystic ovary syndrome: a systematic review and meta-analysis to inform the 2023 update of the international evidence-based PCOS guidelines. J Clin Endocrinol Metab. 2024;109(6):1630-1655. doi:10.1210/clinem/dgad762
  16. Cooney LG, Lee I, Sammel MD, Dokras A. High prevalence of moderate and severe depressive and anxiety symptoms in polycystic ovary syndrome: a systematic review and meta-analysis. Hum Reprod. 2017;32(5):1075-1091.
  17. Dokras A, Clifton S, Futterweit W, Wild R. Increased prevalence of anxiety symptoms in women with polycystic ovary syndrome: systematic review and meta-analysis. Fertil Steril. 2012;97(1):225-230.e2.
  18. Healthwatch England. Getting a second opinion about your care. https://www.healthwatch.co.uk/advice-and-information/2025-02-03/getting-second-opinion-about-your-care
  19. NHS. How to register with a GP surgery. https://www.nhs.uk/nhs-services/gps/how-to-register-with-a-gp-practice
  20. Verity, the UK PCOS charity. Booklets, including "Getting the Best from Your Doctor". https://www.verity-pcos.org.uk/booklets.html
  21. Verity, the UK PCOS charity. Invite your GP to upskill their PCOS clinical management (PMOS TIME). https://www.verity-pcos.org.uk/pcostime-invite-your-gp.html
  22. NHS. How to complain to the NHS. https://www.nhs.uk/chq/Pages/1082.aspx
Leila Martyn

Leila Martyn

Leila is the founder of MyOva, a UK-based hormonal health brand for women with PMOS (PCOS), endometriosis, perimenopause, PMDD and fertility challenges. Drawing on lived experience and scientific research, she shares evidence-based guidance to help women understand their hormones and cycles.

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