I’m a woman. It doesn’t define who I am, but it shapes my experiences. This is the story of my suffering. This is the story of my journey to overcome my incurable illness. This is a story of hope.
In my blog, I talk about my experiences, how my incurable disease affected how I interact with the world and how the world interacts with me.
You are not alone. I want our plight to be heard. There is still a lot of prejudice and ignorance associated with the disease that makes its victims feel abandoned, misunderstood, confused and on occasions mistreated.
Follow my blog and share the posts to spread awareness. Your comments are critical so please be vocal. You can also share your experiences with me via the following channels:
I have stage IV complex endometriosis.
It took 11 years for my diagnosis. I’d been misdiagnosed with polycystic ovary syndrome; low progesterone level; and being a woman (treatment suggested: “just deal with it”).
In June 2014, I was finally and firmly diagnosed following an MRI.
I was referred by a musculoskeletal specialist, following a mystery pelvic and lower back complaint which I thought to be a sports injury. By this time, I’d been in chronic pain for seven months and the quality of my life was seriously affected.
My symptoms include painful and heavy periods, clotting, abdominal pain, back pain, other body pain, chronic fatigue, low moods, irritable bladder, irritable bowel, bleeding after sex, painful sex, bleeding throughout the month, and infertility. I have experienced chronic pain, including over a number of years at levels 3-5, with acute pain of up to 9 on the pain scale of 1-10.
I underwent five laparoscopic surgeries between 2014 and 2020. These included treatment of endometriosis and adhesions in the abdominal cavity, on the outside wall of the uterus, on the bowel, and on the appendix, resulting in an appendectomy, as well as multiple endometriomas on my ovaries.
I thought that my experiences were shared by other women. I thought all other women were braver than me for enduring their monthly pain in silence and getting on with their lives so easily. Now I know that that I’m not like other women. Now I know that I’m not well. I have endometriosis. Welcome to my world.
Hi! I love your blog. You are doing a fantastic job and are a true inspiration. Great work! 😀 I have nominated you for the Premio Dardos Award. If you are interested in accepting the award, all of the details can be found here: https://painwarriors.wordpress.com/2015/04/07/premio-dardos-award/. I look forward to reading your future blog posts. Have a great day!
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I agree . You have concisely explained so clearly what you go through. I can only say that I feel you are describing me and how I feel.Especially about fatigue.Thank you.
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Thanks for bothering to leave a comment. I hope you’re ok and pain free. It helped me to know others have similar experiences. It makes me feel slightly exonerated. Weird, ha?
Hi, I also have endo and have very recently started writing my own blog- it’s very cathartic isn’t it? I’ve been amazed by all of the positive comments and feedback I’ve received- the power of the internet eh?! I will continue to follow your blog and follow on Twitter. I hope you don’t mind that I quoted you on my blogs today and included the link for people to follow. Like you, I also want to raise awareness of this condition. Please let me know what you think of my blog and feel free to follow me! 🙂 @angel_pie84
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I’m putting together a zine compiled of art work, stories, poems, etc from others like myself who are dealing with endo. Heres the event page and more details if anyone is interested in participating! https://www.facebook.com/events/1777206322568843/
As a stage IV endometriosis survivor and having a full hysterectomy, with the exception of a partial ovary spared so I would not go in to full menopausal at the age of 39, I am still in excessive pain and blood tests show that at 41, I am in full menopause. Many people suffering endometriosis do not realize that they can have adenmyosis which is where the inner lining of the uterus (the endometrium) breaks through the muscle wall of the uterus and causes extreme pain and bleeding. It was only after two IVF failures on two absolutely perfect embryos that I needed the surgery anyway for 3 endometriomas on my left ovary and 2 on my right ovary. At that time, I had suspicions of adenomysis so told them to take my uterus. There is no other way to biopsy the uterus unless it is removed from the body because it is such a blood filled organ, they would be unable to control the bleeding with just a biopsy. I suffered in pain from the age of 10 to 39. The Lupron injections made me suicidal-I highly recommend you speak in depth with your doctor before using them. I will soon be undergoing yet another surgical procedure to completely remove my right ovary and see where else the endometriosis has grown since two years ago. Please, I ask this for all of you out there that think “I’m going to this doctor and they’ll take care of it!” I beg you, please do you research on doctors and before they put you on any treatment plan, please research it and check it out. I’ve learned the hard way that some doctors are NOT doing what’s best for you!!! Thank you for allowing me to share my story on your blog. If anyone has personal questions for me, I am a Cerified Surgical Tech, currently going to school for nursing: firstname.lastname@example.org