Meet Cécile: A Real Story of Living with Adenomyosis

|Dorothée Dinne
Meet Cécile: A Real Story of Living with Adenomyosis

When Cécile agreed to share her story with us, she had one clear goal: to help other women feel less alone in their health journey. Her experience with adenomyosis, from the sudden onset of debilitating symptoms to finding a treatment path that worked for her, offers both hope and practical insights for anyone navigating similar challenges.

In this full video interview, Cécile opens up about a journey that many women will recognize: the confusion of unexplained symptoms, the relief of finally getting answers, and the empowering process of making informed treatment decisions.

When everything changed overnight

Cécile's story begins in 2021, when her previously manageable periods suddenly became something entirely different after the COVID shot. What started as normal menstrual cycles quickly escalated into severe pain and heavy bleeding that disrupted every aspect of her daily life. The timing coincided with other health changes she'd experienced, creating a complex puzzle that would take time to solve.

The impact was immediate and profound. Simple activities became challenging, work schedules had to accommodate unpredictable symptoms, and the constant pain created a mental load that affected her overall well-being. Most concerning was when the heavy bleeding led to anemia severe enough to require hospitalization. A wake-up call that something needed to change.

In this interview, Cécile describes those early months with remarkable honesty, sharing both the physical challenges and the emotional toll of not understanding what was happening to her body. Her experience highlights how quickly gynecological conditions can escalate and why taking symptoms seriously is so important.

What makes her story unique

What sets Cécile's journey apart isn't just her specific medical experience, but her approach to navigating the healthcare system. When she finally received her adenomyosis diagnosis, she didn't simply accept the first treatment option presented. Instead, she took time to understand her choices, asked detailed questions, and ultimately made a decision that felt right for her specific situation and life goals.

Her choice to use a hormonal IUD came after careful consideration and honest conversations with healthcare providers who respected her autonomy. This experience taught her the vital importance of finding medical professionals who practice patient-centered care. The need of providers who listen, explain options clearly, and support informed decision-making rather than simply prescribing standard protocols.

Perhaps most importantly, Cécile discovered valuable resources during her journey, including community health centers (maisons médicales) that offered a different approach to care. Her insights about building a healthcare team that truly understands and supports your choices provide practical guidance that extends far beyond her specific condition.

Watch the full story

Our full conversation

Cécile's complete story, with all the details, emotions, and practical wisdom she shares, is waiting for you in our full video interview. You'll hear her describe not just what happened, but how she felt, what she learned, and what advice she'd give to her younger self or other women facing similar challenges.

Her journey from confusion and pain to informed empowerment isn't just inspiring… It's educational. Watch the full interview to discover the resources that made a difference, the questions that led to better care, and the mindset shifts that transformed her relationship with her health.


Dorothée Dinne

Dorothée Dinne

Founder @ Fâmme

Founder of Fâmme and your friendly tech nerd turned women's health advocate. I've spent 15+ years as a product designer and art director, but my biggest breakthrough came from my own 30-year journey with medical dismissal and pain. Now I'm building Fâmme, a curated ecosystem connecting women to trustworthy health professionals and real support. Mother and Belgium-based believer that technology should serve empathy, not replace it.

Feel free to connect with me

Frequently asked questions

What is adenomyosis?

Adenomyosis is a condition where tissue similar to the uterine lining (endometrium) grows into the muscular wall of the uterus itself. Unlike endometriosis, where tissue grows outside the uterus, adenomyosis affects the uterine wall directly, often causing heavy, painful periods.

What are the symptoms of adenomyosis?

Common symptoms include extremely heavy and painful periods, chronic pelvic pain, prolonged bleeding, bloating, and pressure in the pelvis. Some people may also experience pain during intercourse and severe cramping that doesn't respond to typical pain relief.

How is adenomyosis diagnosed?

Adenomyosis is typically diagnosed through pelvic examination, transvaginal ultrasound, or MRI. Unlike endometriosis, it usually doesn't require laparoscopy for diagnosis, as the changes are visible within the uterine wall on imaging.

What causes adenomyosis?

The exact cause is still unknown. Research suggests it may be related to hormonal changes, previous uterine surgeries, inflammation, or genetic factors. Some cases appear after events that affect hormonal balance.

Can adenomyosis affect fertility?

Adenomyosis can impact fertility by affecting the uterine environment and making implantation more difficult. However, pregnancy is still possible for many people with the condition.

At what age does adenomyosis typically start?

Adenomyosis most commonly affects women in their 30s and 40s, but it can develop earlier. Symptoms often worsen over time if left untreated.

What are the treatment options for adenomyosis?

Treatment options include pain management medication, hormonal therapy (like birth control pills or hormonal IUDs), and in severe cases, surgical options. The choice depends on symptoms, severity, age, and fertility goals.

Unlike endometriosis, where hysterectomy may not provide complete symptom relief since tissue can exist outside the uterus, adenomyosis is confined to the uterine wall. This means that hysterectomy can be a definitive treatment for adenomyosis, potentially eliminating symptoms entirely. However, hysterectomy is typically reserved for severe cases where other treatments have failed and when fertility is no longer desired, as it permanently ends the possibility of pregnancy.

Does adenomyosis go away after menopause?

Symptoms typically improve after menopause because the condition is hormone-dependent. As estrogen levels decrease, the adenomyosis tissue usually becomes less active.

What is the difference between endometriosis and adenomyosis?

In endometriosis, tissue similar to the uterine lining grows outside the uterus. In adenomyosis, this tissue grows into the muscular wall of the uterus itself. Both can cause similar symptoms but require different diagnostic approaches.

Where can I get help?

Finding the right doctor or specialist to help with your endometriosis can feel like looking for a needle in a haystack.

We get it. To make the search a bit easier, we’ve put together a list of clinics that specialize in endometriosis. However, keep in mind that this label is self-proclaimed, as there is not yet an official registration.

Brussels:

BCEE - Cliniques Universitaires Saint-Luc
Clinique de l'endométriose H.U.B. - Erasme
Chirec Delta
CHU Brugmann
Fertility Clinic Brussels - Saint-Jean
CHU Saint-Pierre
Hôpitaux Iris Sud

Wallonia:
CHwapi Tournai
Mon(s) Endométriose - CHU Helora Mons
LUCERM - Liège Citadelle
CLE - Liège CHC

Flanders:
UZ Leuven
UZ Gent

For all your questions, related to medical and non-medical, Fâmme is your trusted network.

Where can I find trustable resources?

EndoSens, Toi Mon Endo, Behind Endo Stories, Fâmme - never forget: you’re not alone in this.

What is a "maison médicale", and can I access one?

A maison médicale is a neighbourhood health centre that brings together several healthcare professionals — GPs, nurses, physiotherapists and more — under one roof. It operates either on a flat-rate model, where you pay a fixed monthly contribution and consultations are then free, or on a fee-per-visit basis like a standard practice. The flat-rate system is especially helpful if you have frequent medical needs or a tighter budget. You register with the centre in your neighbourhood, which makes it easier to build a consistent, long-term relationship with your care team. To find the one closest to you: www.maisonmedicale.org

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This information is for educational purposes only and is not a substitute for professional medical advice, diagnosis, or treatment. Always consult a qualified healthcare provider for specific health concerns, especially if symptoms are severe, sudden, or accompanied by fever/heavy bleeding.

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