Adenomyosis The Truth Behind The Pain: Sue

Hey, everyone, welcome back to my blog. Today we will be continuing a project 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. I was a little discouraged, but I realize these stories need to be read. 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? 

Sue

2. Where are you from?

I’m from Virginia 

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

Suspected for many years but not able to diagnose until age 40 with robot assist lap. Had multiple tests, scan imaging, and surgeries, including two laps, Drs were sure they would find endo but never did. Just fibroids and ovarian cysts. 

4. How long have you had Adenomyosis?

She answered in question 3. 

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

No kids. &11-Was told by many Drs forever that if I had a child, it would make my pain go away. Over the years since puberty, I took oral BC pills. Many years continuous oral BC pills to prevent period. Depo Provera shot worked for about ten years, preventing period. Depo had to be administered every 8-10 weeks instead of 12 to stop breakthrough bleeding. Dr refused to give me a depo shot after weight gain came on sudden and believed it was the depo causing that. I tried Mirena IUD. I was on the doorstep the next morning, begging dr to remove it due to pain unless I was lying flat on my back. He said IUD could cause pain in women who have not had children. Hysterectomy leaving ovaries May 27, 2020.

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

No symptoms so far since hysterectomy.

7. What are your symptoms?

Severe cramps and clots since puberty. Pain became in my 20s constant, not just on my period. Pelvic pain pressure and feeling like my insides were going to fall out through my vagina. Pain and bleeding after intercourse. Bloating. Back pain. 

Unknown if associated -migraines, IBS w constipation, weight gain

The only reason for hysterectomy was continuous bleeding with excessive clotting for three months straight. 

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

Drs I saw would only prescribe ibuprofen 800 and alternate Tylenol. A heating pad helped with pelvic pain.

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

Until age 40 as all my previous doctors would not do hysterectomy due to not having tried to have children

10. How has Adenomyosis impacted your personal life? 

The pain reduced my overall quality of life: depression, relationship issues due to sexual aspects due to pain.

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

You have ovarian cysts and fibroids, but that’s doesn’t cause the pain you describe 

12. Any other comments or questions?

-it’s debilitating on overall life and unfair to make women wait for relief with a hysterectomy because of their marital status and pregnancy attempts. The pain needs to be controlled. We are not drug seekers

13. What would you like to see on the blog?

How each woman’s symptoms differ, and treatment plans differ. Is there any correlation with other medical problems such as cervical cancer, PCOs, retroverted uterus, endo, PID, etc

I choose to start back with this story because I do not often hear many like this. 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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