Thread by @Kathleen_M_King

I've seen a few people ask why is #endometriosis on @rteliveline such a big deal?
Why has the conversation stirred up such emotion?
Why do we bother?
A wee thread 🧵

In Ireland, like the rest of the world, #endometriosis takes an average of 9 years to diagnose. Longer if you present under the age of 25 and if fertility is not an immediate concern. I've met many women who have been misdiagnosed for over 20 years.

During this time many are misdiagnosed with mental health issues, attention seeking, IBS, painful periods, cystitis etc
This costs both the individual and the health system time and money.
The healthcare deterioration in this time can be devastating to the woman.

When referred for diagnosis, many are missed. The surgeon does not recognise the #endometriosis lesions. They are also often incorrectly staged. Told they are mild or minimal when in fact they have severe disease, deep infiltrating and frozen pelvis.

At diagnosis, the majority of people are offered hormonal suppression. At best, these suppress some symptoms but they come with a host of side effects. At worst the hormonal treatments lead to bone density loss, menopausal symptoms and no pain relief.

If the surgeon has removed #endometriosis its almost always by ablation. Burning the lesions off with no way of checking that it has been completely removed. Often disease remains in this now inflamed environment and leads to more pain and repeated surgeries.

Women get stuck in the "revolving OR door" being offered surgery every 1 to 3 years (inappropriately). In a desperate attempt to relieve suffering, we will try anything. The risks are often not explained - ovarian (fertility) loss and chronic pain can follow.

Once in the surgery cycle the adhesion formation and inflammation can exacerbate, pain worsens and ovarian reserve (fertility) declines. But what is the other option? Women can't live with the pain and suffering. Their lives consumed.

For some, travel to Europe, UK, America is an option. Drawing on funds from family, friends and the lending institutions they put their hopes on surgery with an experienced surgeon who uses excision and has specialist interest in #endometriosis

Excision surgery, can have a dramatic effect on pain and other symptoms. When all the lesions are removed, the body can begin to heal the inflammation and chronic pain. In many cases I've seen women deliver beautiful babies (after many failed IVF) once the disease is removed.

But with #endometriosis there is almost no research, no definitive guidance and no clear pathway. We don't know how the disease behaves, we don't know the true recurrence rate and we don't know why some women have one type of #endometriosis and others have multiple types.

The questions around #endometriosis are unanswered. Why? Because it manly affects women. Women's health (and other minority groups) has never been to the fore. There is no money in making women well it seems.

While I can trip over 100s boxes of medications for erectile dysfunction at my chemist and its over the counter sales pitches! I cannot get the pill over the counter nor HRT. Again, we are considered unreliable witnesses to our own health.

#endometriosis poor healthcare is not limited to Ireland. It is worldwide. 200 million living in pain and suffering worldwide.
Surely, with that number we are worth the focus of research and medical attention?

So aside from all the negative issues around #endometriosis what can be done?

Education - young people, general public, medical professionals.
Support - give support to those living with with #endometriosis
Appropriate care and treatment available to all.

Young people deserve not to suffer the way we did. So yes, talk of periods, bleeding, pain, hysterectomy, painful sex might not make easy listening but for each eye roll there is someone out there recognising their/loved ones symptoms. Finally having a name for their symptoms.

I've been an advocate for 24 years. I've spoken to 1000s of people, directly and indirectly affected by #endometriosis
I know their wants and needs. I know how shows like @joeliveline @rteliveline will lead to a surge in diagnosis and appropriate treatment.

Accurate information is key. Advocate involvement in policy and research is essential.
Listen to us, we have plenty to say.
Thank you to all who have spoken to @joeliveline on @rteliveline my phone has been on overdrive! Sincere thanks to Joe & his team for making a difference.

Some links to read
linktr.ee/Kathleen_m_king

@UnrollHelper unroll please

If you want to see @EndoWhat Below the Belt belowthebelt.film/shop/p/advance…

I need to add about treatment. Hysterectomy is not a cure for #Endometriosis it does remove #adenomyosis and where the uterus is a source of pain can help. It can help heavy bleeding but should not be prescribed for endometriosis. @joeliveline let's keep the facts to the fore!

What is truly amazing is that in October 2022 we have so many women coming forward to speak about this. 5 or 10 years ago I struggled to get women to speak to the media about their experiences with #endometriosis
Change is happening. @rteliveline