Adenomyosis: The truth behind the pain: Abby

Hey, everyone welcome back to my blog. Today we are going to start a series I have been working on called Adenomyosis: The truth behind the pain. I have over 50 and counting women who are ready to tell their story. We will have a new story every week, even a few videos. Of course, we will still have blog posts about getting healthy, juices, boosting the immune system, and more. Thank you for taking this journey with me lets get started. 

1. Would you like us to use your real name or a fake one? 

I prefer to use my pen name, which is “Abby.”

2. Where are you from?

I’m from Malaysia.

3. When were you diagnosed? How old were you?

I was diagnosed with Endometriosis in December 2018, at the age of 25; I was then diagnosed with Adenomyosis in October 2019, when I was 26 years old.

4. How long have you had Adenomyosis?

My symptoms appeared at the age of 9+, since menarche. Still, I was only “officially diagnosed” with Adenomyosis at the age of 26 years old, approximately 16 years, since the onset of my symptoms.

5. Do you have children? On birth control or any medicine for ando? Or have you had a hysterectomy if so when?

Nope. I am still single. I have been on multiple treatment modalities, but have been somewhat unresponsive, till date. A hysterectomy was suggested to me, as my last option, but I don’t think I am prepared to undergo a hysterectomy, as yet.

6. If you have had a hysterectomy, do you still have symptoms? 

-NA-

7. What are your symptoms?

Prolonged Menstrual Bleeding, Severe Pain, Diarrhoea during menstruation, pain on opening bowel (Dyschezia), during menstruation, Nausea, Loss of Appetite, Fatigue, etc.

8. What do you take for pain, nausea, etc.?

NSAIDs, Morphine Syrup (via prescription by my HCP), etc.

9. How long did it take you to be diagnosed?

Approximately 15 to 16 years.

10. How has Adenomyosis impacted your personal life? 

It has taken away the quality of life (QoL) that I deserve from such a young age.

11. What’s craziest/dumbest thing some have said to you?

The pain and bleeding are just in your head // You are just “imagining” everything // The pain is just psychogenic.

12. What diet do you follow? Have you changed it at all since being diagnosed? 

Anti-inflammatory diet. Yes, I have. I’ve eliminated foods like chicken, dairy, certain types of fish and vegetables, sugar, salt, soy and soy-based products, processed foods, canned foods, all forms of preserved foods, and reduced my carbohydrate intake, for instance.

13. Any other comments or questions you would like seen answered or heard (what would you like the world to know about Adenomyosis)

It would be great if more awareness is created, and people around us, be it our HCPs, family, friends, etc., be a little bit more empathetic. Try to understand how it feels and helps us to improve our QoL, by being slightly more kind. That’s the least that could be done.

Thank you abby for speaking your truth.

I choose to start with this story because I feel I do not hear many like this often. As a child, you learn how to take care of yourself. If you are like me, you had a health class in school that explained periods, cramps, etc. But no one talks about chronic illnesses. I feel as though it’s taboo. Most people have the “that would never happen to me” mindset. Most people, especially men, assume “it can’t be that bad.” Even growing up, most women are molded to take care of every person. Women take care of the household, children, pets, and husband. Women bend, but we must never break. This space is safe. You are allowed to be in pain. You are allowed to be vulnerable. You are safe here.

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