Help a Mother's Dream Come True; Hope After Loss

Hello,

My name is D'ja and I am here to share my story and humbly ask for help. If you know me, you understand that I am not one to ask for help, so this is difficult for me. However, I find myself on the brink of losing hope. When your body makes you feel less like the woman God created you to be, you must strive to make life worth living. It has been 13 years since I lost my first child, and that experience changed my life forever. No parent should have to endure a single day without their child under any circumstances. I pray for all of us.

I have endometriosis and have experienced 6 miscarriages.

What is Endometriosis? It is a condition that causes chronic inflammation, internal scarring, lesions, adhesions, cyst, pain, and infertility. There is no cure. More information (and the science-y stuff) can be found here: https://bloominuterus.com/what-is-endo/

I am one in ten women battling endometriosis. This condition affects between 6% and 10% of women worldwide, or approximately 190 million individuals. Some of these individuals may not even be aware they have it, as diagnosis typically requires surgery. If you didn't know someone with this condition before, now you do—it's me.

I have been suffering from endometriosis since I was 12 years old. Initially, I was told that my pain and symptoms were normal—“Oh, everyone goes through that; some girls just have it worse than others.” However, what was normal for me included excruciating cramps that left me curled up in a fetal position, heavy bleeding with clots, and debilitating pre-menstrual symptoms. This condition forced me to miss school and sports and eventually affected my work and social life. My reality is that I must plan my life around my flare-ups, but my symptoms are not limited to my menstrual cycle. Due to endometriosis, I also experience irritable bowel syndrome (IBS), nausea, fatigue, low iron levels, dyspareunia, among other issues.

Dealing with chronic pain, grief, and postpartum depression severely impacts my mental health and quality of life. Often, the only relief I find during a flare-up comes from prescribed painkillers, anti-nausea medication, massage devices, heated blankets and pads, warm baths, loose clothing, and ample rest. My loving and supportive spouse, parents, siblings, doctors, and even my therapist have witnessed the devastating and traumatic effects of this disease, feeling powerless as they watch me endure the suffering it brings.

Diagnosis typically takes an average of 5 to 10 years. Unfortunately, in my case, it took 14 years, along with 5 miscarriages and 5 dilation and curettage (D&C) procedures, resulting in significant depression. Finally, I underwent my first laparoscopic hysteroscopy and D&C on January 14, 2021. Cauterization and ablation were used to treat the lesions and adhesions/scar tissue. The agonizing pain in my abdomen, right hip, back, leg and foot ultimately led to my hospitalization and a prompt surgical intervention.

Ablation is akin to using a blowtorch on a dandelion rather than removing it from the roots. Recurrence rates are high, and since the disease is not eradicated, what remains can lead to further damage and pain.

Excision surgery is considered the gold standard for treating endometriosis. If diseased tissue is present in the body, it must be removed without exception. Failing to excise endometriosis can adversely affect surrounding structures, impair anatomical function, lead to infertility, and, most importantly, result in debilitating pain. It is essential that the surgery is performed by an experienced endometriosis specialist who collaborates with a multidisciplinary team, including gynecologists, general surgeons, urologists, colorectal surgeons, thoracic surgeons, and others, to ensure effective treatment for the patient.

Now in 2025, after gaining a deeper understanding of my condition, I am uncertain whether I received the appropriate surgery, as my relief from symptoms was very short-lived. They may have cauterized some of the affected tissue, but I don't believe they removed all of it from the deeper layers. I continue to experience a range of associated symptoms. 

After my first surgery, I had hoped to be in a better place and to have welcomed my child or children by now. I did become pregnant again in 2024 and was incredibly excited, looking forward to becoming a family of three with my husband and our beautiful baby by the upcoming summer. However, on December 4, 2024, I received more heartbreaking news. Bleeding prompted me to be rushed to the emergency room, and after an extremely long ultrasound and other tests, I was told, "I'm sorry, the location of the pregnancy is unknown. You may have already miscarried, and this may be a missed miscarriage." We were devastated. I had just lost another baby, following the loss of my father the previous year. I experienced a mental breakdown. This was the sixth time my life felt as though it had flashed and changed before my eyes after losing another baby.

I have seen many doctors over the years in search of a cause for my miscarriages before being diagnosed with endometriosis. Following that diagnosis, I consulted even more specialists. The only treatments available for endometriosis consist of pain medication, hormonal therapy, birth control, and laparoscopic surgery or pregnancy. If these options do not provide relief, a hysterectomy is recommended, although it does not guarantee a symptom-free life.

It has always been my dream to grow up and become the best mother I can be to my children. After struggling for many years, we now have the option of IUI or IVF before considering adoption. Our hearts are ready to finally meet, love, hold, and bring our baby home. As we all know, IUI and IVF can be quite expensive. I honestly believe it is unfair that some women must bear the financial burden for what should be a fundamental right: the ability to conceive and bear a child.

"We need more, not less." "Having children is saving the world." 

Visit:https://everylife.com/pages/make-more-babies

Access to proper treatment is essential. We have already covered some of the costs, but it remains a financial burden. Any donation, no matter how big or small, will significantly help me reach my goal. If you are unable to contribute or it doesn't feel right, please consider sharing this link with others to raise awareness about this disease.

This fundraiser aims to raise both awareness and funds to support my journey to motherhood through IUI or IVF procedures. The estimated cost breakdown is as follows:

Consultation and Testing: $200 - $3,000+

Pre-Screening & Misc. Service Fees: $1,200

IUI: $300 to $4,000+

In vitro fertilization (IVF) costs range from $12,000 to $15,000 or more.

Will post updates regarding another laparoscopic surgery, if needed.

With deep gratitude, I thank you for taking the time to read my story. Your support means the world to me. Sending lots of baby dust to all the women trying to conceive, and here’s to our rainbow babies on the way in the years ahead!

Sincerely,

Dja

#EndoWarrior🎗️

P.S. Follow along on my journey to motherhood. I will post frequent updates.

🎗️RAISING AWARENESS!

Could your symptoms be related to endometriosis? Click the following link and take the quiz!

https://www.speakendo.com/endometriosis-resources/symptom-quiz

The Endometriosis CARE Act is a legislative initiative designed to enhance understanding, treatment, and awareness of endometriosis. It emphasizes the need for increased research funding, improved public education, and the removal of barriers to care. Specifically, the act advocates for greater investment in endometriosis research, the dissemination of information to both the public and healthcare providers, and a comprehensive study on disparities in diagnosis and treatment. For information about the Endometriosis CARE Act and more, please visit: https://www.endofound.org/endometriosis-care-act-reintroduced-at-the-capitol-endofound-is-there-to-support-the-cause

Why is endometriosis so overlooked?

There is a significant lack of knowledge regarding endometriosis, often referred to as missed disease due to its unknown cause and progression, as well as the major challenges associated with its diagnosis and management.

Endometriosis has historically been associated with social stigma and downplaying of symptoms by family, friends, coworkers, and healthcare providers. As a result, women with this condition often experience feelings of shame.

Endometriosis stigma refers to the negative social attitudes, beliefs, and behaviors directed toward individuals living with endometriosis, often arising from misconceptions about the condition and its effects. This stigma can result in various adverse consequences, including delayed diagnoses, challenges in accessing treatment, and detrimental mental health outcomes. [1, 2, 3, 4]

Here is a more detailed examination of the stigmas surrounding endometriosis:

Types of Stigma: [1, 5]

Impact of Stigma: [1, 3, 4]

Sources of Stigma: [4, 10]

Addressing Stigma: [3, 10]

[1] https://journals.sagepub.com/doi/10.1177/22840265241248488

[2] https://www.sciencedirect.com/science/article/pii/S2590161323000534

[3] https://pubmed.ncbi.nlm.nih.gov/34360501/

[4] https://pmc.ncbi.nlm.nih.gov/articles/PMC8346066/

[5] https://theconversation.com/endometriosis-its-time-to-change-the-pattern-of-pain-stigma-and-barriers-to-diagnosis-and-treatment-217881

[6] https://www.inspirahealthnetwork.org/news/provider-inspiration/putting-end-endometriosis-stigma

[7] https://drseckin.com/endometriosis-and-shame/

[8] https://pmc.ncbi.nlm.nih.gov/articles/PMC8820400/

[9] https://pmc.ncbi.nlm.nih.gov/articles/PMC11106211/

[10] https://www.mdpi.com/1660-4601/18/15/8210

[11] https://publichealth.wustl.edu/health-inequities-in-endometriosis-care/

[12] https://www.healthpolicypartnership.com/endometriosis-a-hidden-and-misunderstood-public-health-crisis/