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Endometriosis UK
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Timeline of endometriosis

Timeline: I was 17 when I heard the name of the disease for the first time. 18 first surgery to diagnose endometriosis. Age 27-28 when I was on Lupron for treatment, not successful for me. 30 yrs old when I bled continuously from April to August suspecting adenomyosis which was confirmed last yr. 32 gave birth to baby girl, 6 weeks later disease spread to my nasal cavity and my nose sores would bleed when I would. Intense right shoulder pain started around that time. 33 gave birth to baby boy. 10 months later disease went to right lung. 35 complete hysterectomy in Nov 2016. Started Biote in Jan 2017. I felt horrible and very tired, flu like symptoms. Along with Biote (estrogen and testosterone). I was received Progesterone to take at night to reduce the fatigue and brain fog. One month later I started bleeding vaginally with no uterus or ovaries. My nose bled too and I started coughing up blood. I stopped progesterone and tried small amounts of estrogen and testosterone through Biote. I was sick each time I received Biote. Each time, I received smaller amounts of estrogen and last incert, I received testosterone only. I was still sick but felt a little better. Current Symptoms: shortness of breath, pressure in abdomen, difficulty breathing when lying down flat, pressure behind eyes, upper arm ache bilaterally, inconsistent right shoulder pain and intermittent left shoulder pain (like a screwdriver stabbing quickly), hair falling out, hair smells like perm, no longer curly, fullness in stomach, loss of appetite, lost 20 lbs, nausea, extreme back pain, neck pain, pelvic pain/cramps, lactating from breast if expressed (my son will be 3 in sept and I haven’t breastfed since he was 7 mo), headaches, intracranial pressure, attention deficits/brain fog, bladder pain. I feel like I have the flu all the time, pneumonia and stomach virus. I’ve stopped taking hormones completely I don’t know what to do. Ive wondered this year if I will make it to 40. I believe I have spread this disease over my entire body from the HRT. My best friend is a photographer. Photography by Brie, took this picture when I told her that for as long as I can remember I could hide the disease behind long curly hair and a smile. There is no more hiding, I’ve finally come to a place where I choose to embrace it. Finally, allow myself grace... more rest, more time, healthier choices, peace and the understanding that it is okay not to be okay.

2 Replies

Omg you are a miracle. You are the strongest bravest most wonderful women in the world for what you have fought and continue to fight through. My heart goes out to you and your family. Your are truely a warrior

1 like

Thank you MrsNGoo! I really appreciate your kind words! It is a constant battle... warrior is the perfect word for us!


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