The Untold Struggles, Silent Grief, and Real Hope
Some stories live inside the body long before we have words for them. Adenomyosis was that story for me. For years, I carried pain, confusion, and a quiet kind of grief that no one could see. If you are reading this while hurting, physically or emotionally, please know this first: you are not imagining it, and you are not alone.
This article is for anyone carrying pain, confusion, or quiet heartbreak. For anyone who has struggled in silence, wondered why their body feels like a battlefield, or held grief they never had space to speak out loud.
You deserve the full truth.
You deserve to be seen.
You deserve support that feels real, human, and honors both your body and your mental health.
How Adenomyosis Affects Fertility
Adenomyosis is more than painful periods. It happens when the lining of the uterus grows into the muscle of the uterus itself. This can cause constant inflammation, change the shape and function of the uterus, affect implantation, and disrupt hormonal signals. For many, it can also affect egg quality, increase the risk of miscarriage, and make conception more difficult [1].
For me, this journey eventually led to a hysterectomy. I had to grieve the loss of organs that once held so many dreams. From the time I was young, I always wanted children of my own. I wanted to be the best mum they could ever have. Letting go of that future was one of the deepest pains adenomyosis brought into my life, and it is a reality that is rarely spoken about.
This illness also cost me relationships. Not being able to conceive meant facing the painful truth that I could not give my partner the family they deserved. Choosing to step away came from love, not failure, but it was heartbreaking all the same. This is a quiet loss many people carry alone.
What often goes unspoken is how deeply this affects mental health. Living in daily pain slowly wore me down. The uncertainty, the loss of trust in my own body, and the constant fertility questions took a heavy emotional toll. Anxiety, grief, and loss became part of my everyday life long before I had words for them.
This is why early detection matters. It can change the entire course of a young person’s life, especially for those who carry dreams of motherhood and family. Adenomyosis does not just affect the body. It affects the heart, the mind, and the future you imagined for yourself.
A Silent Battle with No Simple Answers
In people with gynecological symptoms such as heavy bleeding and pelvic pain, a significant number may have adenomyosis on imaging or pathology. Many only learn they have it during fertility testing. [2].
Before diagnosis, many people spend years being told it is stress, normal period pain, or something they must simply learn to live with. I remember when I was first diagnosed with endometriosis back in 2004, the doctor told my mum that I should get pregnant and that it would “cure” it. At the time, I did not even know about endometriosis’s sister condition, adenomyosis. No one mentioned it. No one looked deeper.
I often think about how impossible that advice was. How can pregnancy be a cure when I did not know I had adenomyosis, and when my fertility had already been affected? Being told to get pregnant as a solution ignored the reality of my body and placed responsibility on something I could not control. That kind of guidance does more harm than people realize.
Late or incomplete diagnosis means lost time, missed opportunities for early intervention, and a deep emotional exhaustion that is hard to put into words. It leaves people questioning themselves, their pain, and their future.
And still, people keep going. They push through pain. They hold on to hope even when their hearts feel tired. That is strength, even when it does not feel like it.
The Weight of Society’s Expectations
Large meta‑analyses estimate that adenomyosis affects around 1% of women in the general population, but up to about one‑third of women undergoing infertility evaluation [3].
Adenomyosis is far more common among people undergoing infertility evaluations than most realize, yet society rarely makes space for this reality. I was often asked why I was not married, why I did not have children, and when I would “settle down.” Each question carried weight, especially when I was still trying to understand what was happening inside my own body.
There came a point where I had to make a conscious shift. This journey, alongside endometriosis, was already heavy. It came with pain, uncertainty, medical trauma, and unanswered questions. I realized I did not owe anyone explanations while I was still searching for answers myself. I did not have to absorb society’s ignorance or carry the burden of unsolicited advice.
This is where becoming an informed and empowered patient matters. When you understand your condition, you begin to trust yourself more. You learn when to engage and when to protect your peace. You are allowed to set boundaries. You are allowed to say nothing. You are allowed to step away from conversations that do not feel safe or supportive.
Your value is not defined by marriage, motherhood, or timelines set by others. No one has the right to question your pain or your path. This journey is yours, and you deserve the space to walk it with dignity, compassion, and strength.
The Emotional and Mental Toll
Adenomyosis does not only affect the uterus. It affects your mental health, confidence, your hope, your relationships, and your sense of control. It can also cause other health symptoms such as skin sensitivity. Each month can feel like a reminder of what is not happening. Many people carry a grief that the world does not see, a grief that feels invisible because the loss is not something others recognize.
You are allowed to feel this. You are allowed to grieve the dream, the time lost, the pain, and the weight of uncertainty.
I speak about fertility and adenomyosis with care because I have lived through the weight of it myself. The pain, the confusion, the fear of not knowing what was happening inside my body, and the grief that followed the medical decisions I eventually had to make. My hysterectomy brought relief, but it also brought a kind of grief that took time to understand. It was not only about the physical loss, but the emotional layers that came with it. Learning to accept it, to breathe through it, and to rebuild myself was a journey of its own. And if you are walking through any part of this road, I want you to know that I see you. Healing is possible. Even when it feels slow, even when it feels heavy, it is still possible.
Treatment Options for Adenomyosis When you Want to Conceive
Adenomyosis is personal. Treatment must be personal too. Depending on your situation, some options may include:
- Hormonal treatments to manage inflammation and heavy bleeding
- Excision surgery when endometriosis is also present
- HIFU which is a non invasive option for some
- IVF, IUI, or egg freezing with the right reproductive team
You deserve a treatment plan that respects you.
You deserve clear information, not confusion or dismissal.
Emotional Support is Essential
Living with adenomyosis and fertility challenges is not just a medical journey. It touches every part of who you are. It reshapes how you see your body, your future, your relationships, and even your sense of hope. It can quietly change your identity in ways others may never notice.
Therapy, support groups, journaling, rest, and meaningful connection are not extras. They are anchors. They help you stay grounded when everything feels uncertain. They remind you that you are more than a diagnosis and more than what your body can or cannot do.
Needing support is not a failure. It is a human response to carrying something this heavy.
Feel free to join The Yellow Circle WhatsApp Support Group for emotional support.
You Are Not Alone
It is okay to feel heartbroken.
It is okay to pause treatments when your heart needs a break.
It is okay to dream again when you feel ready.
Your story is valid, even when others cannot see the pain you carry.
There Is Still Hope
Many people with adenomyosis do conceive.
Some find relief through treatment.
Others find peace in new paths to motherhood.
And many discover strength they never knew they had.
Research, awareness, and support are growing every year.
Hope takes different shapes as it does not look the same for everyone. Every form of hope matters and every shape is worth honouring.
A Message to Every Warrior
You are not your uterus.
You are not your diagnosis.
You are not your fertility.
You are strength.
You are courage.
You are worthy of love, care, and understanding.
And no matter where you are in your journey, there is still hope for you.
A Closing Word
Adenomyosis teaches you about strength in ways you never asked to learn. It challenges your body, your heart, and the dreams you once held so closely. But it also reveals a part of you that is powerful and resilient, even on the days you feel anything but strong. If you are grieving, searching for answers, or trying to make peace with choices you never imagined having to make, I want you to know that you are not alone. Your story deserves compassion. Your body deserves gentleness. And your heart deserves space to heal.
No matter what your journey looks like, there is still hope for softness, for joy, for meaning, and for a future that feels like your own again. You are more than your diagnosis, and your life is bigger than this pain. I am walking this road with you, and together we will continue raising awareness, honoring every warrior, and fighting for better understanding and care.
Frequently Asked Questions about Adenomyosis and Fertility
Key questions about adenomyosis and fertility:
Adenomyosis happens when the lining of the uterus (endometrium) grows into the muscle of the uterus (myometrium). This can cause heavy, painful periods, chronic pelvic pain, and sometimes adenomyosis‑related infertility challenges.
Adenomyosis does not automatically mean infertility, but it can make it harder to conceive for some people. It can interfere with implantation, change how the uterus contracts, and create ongoing inflammation that affects egg quality and early pregnancy.
Yes, many people with adenomyosis conceive naturally. The condition may lower the chances per cycle, but it does not close the door on natural pregnancy with adenomyosis. Your age, egg quality, partner factors, and any co‑existing conditions (like endometriosis or fibroids) also play important roles.
Studies suggest that adenomyosis is associated with a higher risk of miscarriage, especially in people undergoing fertility treatment [4]. This is likely due to a combination of inflammation, altered uterine blood flow, and changes in how the lining of the uterus supports early pregnancy.
Adenomyosis is usually suspected based on symptoms (pain, heavy bleeding) and confirmed with imaging, most commonly transvaginal ultrasound or MRI. A laparoscopy is not always needed for diagnosis, but may be used if endometriosis is also suspected.
No. Adenomyosis and endometriosis are related but distinct. In adenomyosis, tissue similar to the uterine lining grows inside the uterine muscle. In endometriosis, similar tissue grows outside the uterus, such as on the ovaries, pelvic walls, or other organs. Many people have both.
Options depend on your age, symptoms, and whether other conditions are present. They may include:
– Hormonal treatments to reduce inflammation and bleeding
– Pretreatment (for example with GnRH agonists) before IVF
– Fertility treatments like IUI, IVF, or egg freezing
– In selected cases, conservative surgery or non‑invasive options like HIFU
A specialist can help tailor a plan to your body and your goals.
Not everyone with adenomyosis needs IVF. Some conceive naturally or with less invasive options like timed intercourse or IUI. IVF may be recommended if there are additional fertility factors, you are older, or previous treatments have not worked.
A hysterectomy (removal of the uterus) is considered a definitive treatment for symptoms because it removes the tissue driving the pain and bleeding. But it is not the only option, especially for those who wish to preserve fertility. Many people use medical treatments, conservative surgery, or HIFU to manage symptoms while still trying to conceive.
Some people with adenomyosis have completely uncomplicated pregnancies. Others may have a higher risk of miscarriage, preterm birth, or placental problems. Close monitoring by an obstetrician familiar with adenomyosis can help manage these risks.
Lifestyle changes cannot cure adenomyosis, but they can support overall health and treatment. Adequate sleep, gentle movement, anti‑inflammatory nutrition, stress‑management strategies, and avoiding smoking or heavy alcohol can support hormonal balance and general well‑being.
Living with chronic pain and uncertainty about fertility is emotionally exhausting. Many people benefit from therapy, support groups, journaling, spiritual practices, or talking openly with trusted partners or friends. Asking for emotional support is not a sign of weakness; it is an important part of your care.
You should seek a specialist in adenomyosis/endometriosis or reproductive medicine if:
– You have severe pain or very heavy periods
– You have been trying to conceive for 6–12 months without success (especially if over 35)
– You feel your symptoms are being dismissed or minimized
A specialist can help you get a clear diagnosis and a plan that respects both your health and your reproductive goals.
No. Your worth, identity, and womanhood (or personhood) are not defined by your uterus or your ability to carry a pregnancy. You are still whole, still deserving of care, love, and respect, no matter what your reproductive journey looks like.
References
- Vitaly F. Bezhenar, Viktor A. Linde, Byuzand V. Arakelyan, Alla S. Kalugina, Yuri V. Vasilyev, Darya A. Sobakina, Elmina E. Sadykhova, Viktoria A. Tarasenkova. Adenomyosis and fertility: a modern view of the problem. A literature review. Journal of obstetrics and women’s diseases, 2022, 71(1): 109-118 DOI:10.17816/JOWD78939
- Wang MH, Chen JH, Qi XY, Li ZX, Huang Y. Global prevalence of adenomyosis and endometriosis: a systematic review and meta-analysis. Reprod Biol Endocrinol. 2025 Nov 19;23(1):148. doi: 10.1186/s12958-025-01483-z. PMID: 41257733; PMCID: PMC12629041.
- Mishra, I., Melo, P., Easter, C., Sephton, V., Dhillon-Smith, R. and Coomarasamy, A. (2023), Prevalence of adenomyosis in women with subfertility: systematic review and meta-analysis. Ultrasound Obstet Gynecol, 62: 23-41.
- Huang Y, Zhao X, Chen Y, Wang J, Zheng W, Cao L. Miscarriage on Endometriosis and Adenomyosis in Women by Assisted Reproductive Technology or with Spontaneous Conception: A Systematic Review and Meta-Analysis. Biomed Res Int. 2020 Dec 8;2020:4381346. doi: 10.1155/2020/4381346. PMID: 33490243; PMCID: PMC7787757.
Photo by Sylwia Bartyzel on Unsplash
