Adenomyosis The truth behind the pain: Karen

Hey everyone welcome back today we are here to read another story and how this disease impacts women all over the world. Today we meet Karen. 

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

Just Karen (only 1st name) would be fine. 

2. Where are you from?

Boston 

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

I was diagnosed at 19, and I am 24 now. 

4. How long have you had Adenomyosis?

Possibly my whole life (but symptoms started since the age of 10), but things have progressed dramatically since I turned 19 and continues to worsen with every month. 

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

I don’t yet have children. I have tried numerous bc pills, but all of them cause side effects and constant breakthrough bleeding and, for some reason, even more pain after the first few months. My cycle seems to override the pills after the 1st two months. It’s awful. I have to take Tranexamic Acid/Lysteda (pro-clotting medications) during my period so that I don’t bleed out and end up in the ER. I also take NSAIDs for pain. 

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

NA

7. What are your symptoms?

Extremely heavy periods to the point of hemorrhaging every month. Pain for around 2 weeks (Week before and during my period) and occasional ovarian cysts. I have extreme pain and contractions during my period. I have leg pain, back pain, and a general heavy uterus. 

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

NSAIDs like Advil or naproxen and sometimes prescription pain meds if it becomes unbearable, but usually I stick to OTC. 

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

About a year

10. How has Adenomyosis impacted your personal life?

It impacts every moment of my life. When I am not in pain or bleeding out, I am worrying about it. My period takes away 5 days of the month where I am bedridden and so debilitated that I cannot function like a normal human being. It takes away my life. I can’t go anywhere or do anything with this massive level of blood loss and pain. 

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

“People need to suck it up if they have cramps- it’s not that bad. People are wimps”, was said to me once. Also, my own mother said, “well, I don’t see you collapsed on the floor with blood everywhere. If you’re not in that state, then you have nothing wrong with you” the next month, I actually did pass out from blood loss, but even then, she has no sympathy for me and does not take it seriously.

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

It is a heartbreaking and debilitating condition. Chronic pain is no joke. It takes away your life. Blood loss has to lead to severe anemia in my case. I have lost all energy and just moving hurts most days. I am balding because all of my iron stores are depleted. I have chest pain and brain fog, and I have heart attack symptoms because of the severity of my anemia. I am scared for the future and my fertility. I don’t know if I will make it to the point of having kids. I want to get everything out, but I am scared that even a hysterectomy won’t be enough. I believe a lot of people have adeno and endometriosis together, and it seems to be the case for me. The pain is often localized to my uterus, but sometimes it is everywhere in my pelvic area along with ovarian pain and cyst rupturing as well. It is a nightmare to deal with both of these issues. 

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

I would like to see success stories and what people do to manage the pain and the bleeding. I haven’t seen enough success stories out there, and I would love to see some hope. 

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

I am a vegetarian, and I minimize dairy when I can. I am a healthy eater and still fit and lean despite the toll that this disease has taken on me. I am no longer able to be a competitive dancer, so I try to eat healthily to keep myself lean.

3 thoughts on “Adenomyosis The truth behind the pain: Karen

  1. This was amazingly touching. I feel for Karen and wish her peace and wellness however she can find it. Pain is a very tricky thing – if people can’t see you “collapsed on the floor with blood everywhere”, they don’t take your pain seriously. And why shouldn’t they believe you! I’m sorry, girl. Sending my love xxxxx

    Like

  2. Oh my goodness, I’m so sorry that you’re going through this Karen and all the other women featured. I never knew a condition like this existed. Thank your for sharing.

    Like

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