My Experience with Endometriosis

I was visiting a fellow Endo Sister's blog,  Journey With Endometriosis (which is great BTW, check it out!) when I found a post I found to be really interesting: 30 Things About Living with Endometriosis You May Not Know.
It is a survey with questions regarding Endo and you share your experiences. I thought it was cool because I like to see the thoughts of others with Endo.. to see our similarities and our differences. Since Endometriosis is so complex and so much is still unknown its hard to diagnose. No one person with Endometriosis has the same symptoms as someone else. After reading her answers I decided I would post the survey myself and fill it out.  Let me know what you think!

30 Things About Living with Endometriosis You May Not Know

1. The illness I live with is: 

I'm just going to go with EndoJourney's answer because it is the same: Endometriosis. It's when the lining of the uterus is implanted outside of the uterus, for reasons unknown to the doctors and researchers. Every month during your cycle, these implants also bleed but with no exit, creating internal bleeding and a bruise inside your body. Over time these implants can turn into scar tissue, damage organs and cause infertility.

2. I was diagnosed with it in the year: 

2011

3. But had symptoms since:

1998

4. The biggest adjustment I've had to make is:

Adjusting to a new way of life. I never had restrictions, limits, as far as the foods I ate, the amount or effort of exercise I did,  so it's hard to get into that new groove of having to restrict myself.

5. Most people assume: 

Endometriosis is just really bad period cramps. I actually had someone say to me, when I told them I had Endometriosis, "Isn't that just, like, bad cramps?". So badly did I want to slap the ignorance out of the person but I politely smiled and said "Oh, no. It is much more than that".  People don't realize their are other side effects of Endo besides pain.

6. The hardest part about mornings are: 

Going to the bathroom. It is always painful, even more so when I have my period.

7. My favourite medical tv show is: 

House

8. A gadget I couldn't live without is: 

My laptop. I can sit in my bed with my laptop so when I'm having a bad "Endo day" and cant sleep, at least I have something close by I can grab and do stuff on.

9. The hardest part about nights are: 

Sleeping in general is hard for me, especially if I'm on my period. The days I have my period I swear I don't sleep, I toss and turn all night long. Other nights I just wake up frequently.

10. Each day I take 6 pills and vitamins (no comments, please): 

6 is like a regular day, if I am having a lot of pain and nausea, its more than that. I hate it but when I don't take my medication my symptoms are so much worse.

11. Regarding alternative treatment I: 

I've tried so many things and nothing seems to really do much so I have kind of given up hope at this moment of something alternative. I'll stick with the plan I've got, for now.

12. If I had to choose between an invisible or visible illness I would choose: 

EndoJourney quoted this person and I will do the same:

To quote a new endometriosis friend: "Invisible. As much as I hate the frustration and the isolation of an invisible illness at least I look good because if I looked the way I feel, I would scare you."

13. Regarding working and career: 

Work has been hard for the past few years. I started to get really ill in 2010 and they couldn't figure out what was wrong with me. I missed a lot of work because I would be throwing up a lot, fainting from the pain. I lived 45 minutes from my job so driving there while feeling faint, not a good idea.

14. People would be surprised to know: 

How much endometriosis affects your entire life. Your relationships, self-confidence, hope. So many things are affected and really takes a toll on you emotionally.

15. The hardest thing I've had to accept about my new reality has been: 

I may not be able to have children. I don't know for sure, I've never tried. But, it's possible. A lot of women with Endo have fertility problems. I am SO scared and am hoping I can have a baby of my own some day.

16. Something I never thought I could do with my illness that I did was: 

Find others who understand what I'm going through. No one in my "real life" really understands, they try but it's just not the same as someone else who suffers with you. I found a strong support system of women on Twitter-Endo Sisters and I also started a Facebook Page, Endo Sisters Unite

17. The commercials about my illness: 

EndoJourney was right on with this answer: 

Do not exist. It's so frustrating about how little information there is and how few discussions there are on this apparently common illness!

18. Something I really miss doing since I was diagnosed: 

Going out whenever, wherever and not having to worry about "Am I going to start feeling pain soon, am I going to throw up if I have a drink?". I never had to worry about these things before.

19. It was really hard to have to give up: 
My social life. I miss out on a lot because of this illness.

20. A new hobby I have taken up since my diagnosis is: 
 
Blogging and Crafting.

21. If I could have one day of feeling normal I would: 

Get all my girlfriends and go out dancing and drinking and have a fabulous girls night out!

22. My illness has taught me: 

Life isn't always fair. Life doesn't always make sense. I have to appreciate what I do have and that things could be a lot worse.

23. Want to know a secret? One thing that gets under my skin is: 

People who say "Maybe you just have a low pain tolerance" or people who try to push me to do things when I try to politely decline, I know my limits.

24. But I love it when people say: 

"I'm so sorry you have to go through this", "I may not understand from personal experience but I am here for you anyway". Many of my best friends have said this to me and it just makes me happy and realize why they are my best friends :)

25. My favourite motto, scripture, quote that gets me through the tough times is:


I don't have one in particular but let me give you my favorite of the week!

“... Whatever condition we are in, we must always do what we want to do, and if we want to go on a journey, then we must do so and not worry about our condition, even if it's the worst possible condition, because, if it is, we're finished anyway, whether we go on the journey or not, and it's better to die having made the journey we're been longing for than to be stifled by our longing.” ― Thomas Bernhard 

26. When someone is diagnosed I'd like to tell them: 

Trust yourself. You know your body better than anyone. Research the illness and others experiences. Find support if not from family and friends but also other people who suffer, Endo Sisters as we like to call each other. Find a doctor who will listen to you and believe you and if you feel they aren't doing as much as they could, find someone else. Never take no for an answer if you feel something is wrong. You know yourself.

27. Something that has surprised me about living with illness is: 

The ignorance of others, lack of understanding. How much your life can change so quickly.

28. The nicest thing someone did for me when I wasn't feeling well was: 

A coworker brought me to the ER one day and stayed with me for hours until my mother could arrive. She had to hold my hair back while I vomited, she held my hand when they took blood. She was just there and that meant so much.

29. I'm involved in Endometriosis awareness month because:

I have endometriosis and I'm determined to make more people aware. It is more common than anyone realizes and there is so much more opportunity for awareness!

30. The fact that you read this makes me feel:

Happy. Thankful you took time to read about me and my problems. Interested in what you thought or got out of this. And hopeful that this was helpful to you, as when I read it for the first time, it helped me :)