"Doctors dismissed my pain and said my period was normal" says West Midlands woman calling for endometriosis support

Endometriosis effects 1 in 10 women, and those assigned female at birth, yet few people are aware of the condition.

Symptoms of endometriosis can differ from person to person but they typically involve pelvic pain, heavy and painful periods that interfere with everyday life and fatigue, to name a few.

This March, Endometriosis Awareness Month is aiming to tackle this by exploring how endometriosis must be better understood by the general public and can be better explained to patients by healthcare providers.

Many women who suffer with endometriosis, like Nina Cutaran from the West Midlands, wait several years to receive a diagnosis for their pelvic pain.

Nina waited five years and was dismissed by many doctors before she knew the cause of her pain: "I was hospitalised twice and all the doctors dismissed me saying it was normal period pain.

"It wasn't until I had a ruptured cyst on my ovary that I got diagnosed with Stage 4 endometriosis. Whenever I have period cramps, pelvic pain or a stabbing sensation in my thighs I get scared that I will have another ruptured cyst."

Since her diagnosis in 2023, Nina says everyday life has massively changed for her.

Nina said: "Living with endometriosis has changed my life entirely, it's taken away my favourite hobbies such as volleyball and it has placed a huge strain on my career.

"It effects my job and my productivity as there are days when I cannot leave my bed due to the pain. It really scares me that I could lose my job as each month I am absent due to the insufferable pain."

Nina says the biggest challenge she has faced since her diagnosis is how endometriosis has effected her fertility.

Nina said: "I felt like my life fell apart as I had always dreamt of becoming a mum but with endometriosis it is likely that I will struggle to conceive naturally, so the freedom of choosing when I would like to be a mum has been taken away from me."

Endometriosis Action Month is calling for greater awareness towards the chronic condition, Nina believes knowledge of endometriosis is getting better but it can come with challenges.

Nina said: "The diagnosis rate is getting better but it does mean more dedicated nurses within the NHS are needed to help women get the support they need."

BloodyEndoMidlands is supporting women suffering with endometriosis in the West Midlands region, you can visit their support group Facebook page and website online: https://www.facebook.com/groups/BloodyEndoMidlands or at https://www.bsge.org.uk/data-for-bsge-accredited-endometriosis-centres/

BEM -BLOODYENDOMIDLANDS FACEBOOK SUPPORTGROUP SPOKESPERSON SAID –

We would like everyone have more understanding of Endometriosis & Adenomyosis. Gynaecological conditions – and take 5 things away in 2025:

1.  ‘PECAA’ 

PREP – EDUCATE – COMMUNITY – ADVOCATE - AWARENESS

Frontline professionals (inc healthcare), employers and authorities still require more than their 3hr lecture for better understanding of the disease that affects 1:10 (v Diabetes awareness / similar patient size).

RESEARCH- RTC Right to Choose, Estrogen dominance / Progesterone imbalance, thyroid health, liver health, MCAS/ histamines – A COMPLEX WHOLE BODY DISEASE AFFECTING MANY THINGS!

2.  NEW ‘MAGIC PILL’ RYEQO / A LONG WAY TO GO 

RYEQO is not ‘new’ – it’s an old medication pre-packaged in a different delivery format (oral v injections).

A GNRH antagonist with built-in HRT – not dissimilar to agonists (eg- Prostap or Zoladex) – which induces Chemical Menopause and shuts down ovaries.

This medication is not compatible for everyone - and side effects can be brutal including suicidal thoughts, anxiety and depression.

Complex conditions rarely have quick, easy solutions – root causes need to be identified.

Holistic approach and societal awareness needed.

R&D (Research and Development) is critically needed in this area to end unnecessary suffering, giving women as many options as possible - Women’s Health is woefully inadequate in serving half the population and future parents.

Government funding needs to be long term and sustainable- to serve all sectors of society including: under-represented, marginalised and vulnerable people.

3.  BSGE CENTRES – GOLD STANDARD 

There are numerous hurdles being a patient of invisible illness – so many are still left undiagnosed due to lack of specialist care, mistreatment or disability barriers.

For those going abroad for surgery to ‘jump queues’ – there is no guarantee of BSGE standards nor aftercare.

Find the right medical team for you and find your circle for support.

4.  EGU / EGAU (EMERGENCY GYNAECOLOGICAL ASSESSMENT UNITS) 

In almost all NHS hospitals – there are EGU / EGAU (Emergency Gynaecological Assessments Units).

They are special 24hr specialist emergency triage units especially for ‘anything gynaecological’– you can be referred by GP or 111 – or call them direct.

Bring a ‘Grab bag’ inc. Medical Folder (Conditions List, Medications List, History Summary, Consultant letters etc) in hardcopy to help speed up process.

MEDICAL EMERGENCIES INCLUDE -

Haemorrhaging / excessive bleeds, severe pelvic pain, ovarian torsion, cyst rupture, pregnancy complications inc ectopic pregnancies/ miscarriage, retention/ obstructions or sexual assault. Sepsis can occur when toxins flood your system or tissue decaying etc.

5.  CHRONIC PAIN, ILLNESS & DISABILITY 

Cuts to welfare and Social Security will devastate Women’s Health to the point of no return – Cost of Living Crisis, Energy Crisis, Housing Crisis and pandemic slump have desecrated a whole generation. Patients are already at their wits end, struggling with Foodbanks, loans, Disability hurdles and Access to basic rights and necessities.

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