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All Endo, PCOS, Adeno, Hysto's, Pelvic Pain this is the link to our new Exchange. It will take some time to get everything re-entered...but WELCOME ALL!!!
getting to know you...GTKY
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brandib01 posted:
well sadie found this list and i think it would be good for not only our internal use but if you ant to post it or email to someone you could.

30 Things About My Invisible Illness You May Not Know
1. The illness I live with is:
2. I was diagnosed with it in the year:
3. But I had symptoms since:
4. The biggest adjustment I've had to make is:
5. Most people assume:
6. The hardest part about mornings are:
7. My favorite medical TV show is:
8. A gadget I couldn't live without is:
9. The hardest part about nights are:
10. Each day I take __ pills & vitamins:
11. Regarding alternative treatments I:
12. If I had to choose between an invisible illness or visible I would choose:
13. Regarding working and career:
14. People would be surprised to know:
15. The hardest thing to accept about my new reality has been:
16. Something I never thought I could do with my illness that I did was:
17. The commercials about my illness:
18. Something I really miss doing since I was diagnosed is:
19. It was really hard to have to give up:
20. A new hobby I have taken up since my diagnosis is:
21. If I could have one day of feeling normal again I would:
22. My illness has taught me:
23. Want to know a secret? One thing people say that gets under my skin is:
24. But I love it when people:
25. My favorite motto, scripture, quote that gets me through tough times is:
26. When someone is diagnosed I'd like to tell them:
27. Something that has surprised me about living with an illness is:
28. The nicest thing someone did for me when I wasn't feeling well was:
29. I'm involved with Endometriosis Awareness Month because:
30. The fact that you read this list makes me feel:
Brandi 27dx'ed.infertile06'w/male factor also-first lap 09'endo stageIV/PCOS/2-m/c08'09'my angels hormone deficient 7 rounds of clomid~~co admin..
Reply
 
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BrittneyisaMommy responded:
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Endometriosis
2. I was diagnosed with it in the year: 2010
3. But I had symptoms since: 2010
4. The biggest adjustment I've had to make is: figuring out my relationship with my husband... Sometimes I want to hang a Do not enter sign around my waist... And I was never like that before.
5. Most people assume: The pain is in my head and I just want pain meds.
6. The hardest part about mornings are: waking up ;)
7. My favorite medical TV show is: off the map
8. A gadget I couldn't live without is: my phone... although its lost
9. The hardest part about nights are: falling asleep
10. Each day I take __ pills & vitamins: 2
11. Regarding alternative treatments I: use hormonal health
12. If I had to choose between an invisible illness or visible I would choose: invisible... I have seen many beautiful ladies marred by the effects of lupas and RA... even though u can't see I am sick I would rather it that way I think...
13. Regarding working and career: I start my job on Monday
14. People would be surprised to know: That I am scared to death that I can't have more kids and that I will fail at raising the two I do have.
15. The hardest thing to accept about my new reality has been: the fact that AF lasts 7-10 days now instead of 4
16. Something I never thought I could do with my illness that I did was: ?
17. The commercials about my illness: don't exist...
18. Something I really miss doing since I was diagnosed is: nothing yet :)
19. It was really hard to have to give up: eating and drinking with no regard for my digestive system... darn u ulcers
20. A new hobby I have taken up since my diagnosis is: baking, crafting
21. If I could have one day of feeling normal again I would: take a second honeymoon :) for a year :)
22. My illness has taught me: patience with myself and others
23. Want to know a secret? One thing people say that gets under my skin is: I know exactly how you are feeling (even when they dont have endo... u have no idea what cramps are til you have endo I'm just sayin)
24. But I love it when people:
25. My favorite motto, scripture, quote that gets me through tough times is: Be still and know that I am God Psalms 46:10
26. When someone is diagnosed I'd like to tell them: There is hope and there is help. Keep searching and be your own best advocate.
27. Something that has surprised me about living with an illness is: how tired I get at times.
28. The nicest thing someone did for me when I wasn't feeling well was: Gave the kids a bath ( i am not the biggest fan of bathtime lol)
29. I'm involved with Endometriosis Awareness Month because: I have endo and I know that there are many others who do and are going about undiagnosed and struggling with pain that people continue to say is all in their head.
30. The fact that you read this list makes me feel:Happy :) I will read urs too :)
Mommy to a 2 year old little girl and a 1 year old little boy. Diagnosed with Endo. after DS was born. Three M/C 9/2010, 11/2010,
 
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hollyri replied to BrittneyisaMommy's response:
Thanks for posting this. It's a great way to get to know y'all and what your experiences with endo are.

30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: endometriosis

2. I was diagnosed with it in the year: 2002

3. But I had symptoms since: 1983

4. The biggest adjustment I've had to make is: learning that planning for a life doesn't mean it will happen the way you wanted it to

5. Most people assume: it's not a disease, and that it's all in my head

6. The hardest part about mornings are: getting out of bed because I tend to have pain

7. My favorite medical TV show is: I don't have one

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

9. The hardest part about nights are: relations; I'm always scared I'm going to hurt

10. Each day I take __ pills & vitamins: 2

11. Regarding alternative treatments I: tried several including acupuncture. I ended up in more pain for some reason

12. If I had to choose between an invisible illness or visible I would choose: neither

13. Regarding working and career: due to the illness I developed while on treatment for endo, I can't be away from the bathroom. I used to teach, but it was a relief to give that up. No more poise pads and fear that I would have an embarrassing situation because I was trapped in my classroom with students

14. People would be surprised to know: I've tried all I could to have children, and even experienced a failed adoption. I have too many other reproductive issues

15. The hardest thing to accept about my new reality has been: the loss of relationships. It was part of the reason I ended up divorced, and I fear that I could lose my boyfriend because of this too. It's more how I handle it, and I am trying so hard to be brave.

16. Something I never thought I could do with my illness that I did was: run during that time of the month

17. The commercials about my illness: are non-existent as far as I know

18. Something I really miss doing since I was diagnosed is: Well, more like something I miss since I developed a horrible issue during treatment: I really miss taking road trips. Now I have to stop every hour, and road trips take forever. I don't even like to shop because I always have to find the bathroom.

19. It was really hard to have to give up: some of my dreams

20. A new hobby I have taken up since my diagnosis is: cooking

21. If I could have one day of feeling normal again I would: spend the whole day at the beach eating all sorts of bad things, lol.

22. My illness has taught me: you never know what life will give you

23. Want to know a secret? One thing people say that gets under my skin is: They tell me that I don't matter because I don't have kids. And they make me feel like all this was my choice. I usually feel fine about it, but there are times when the comments hurt. These people don't know the problems I had or the treatments I did or about the MCs or the adoption. And they really don't deserve to know if they say comments like that. Let them live in ignorance.

24. But I love it when people: ask me for help

25. My favorite motto, scripture, quote that gets me through tough times is: Douglas Adams's quote: I may not have gone where I intended to go, but I think I ended up where I needed to be.

26. When someone is diagnosed I'd like to tell them: life does get better. The pain eventually does get better too. I'm turning 40, and I feel great compared to how I felt just 2 years ago.

27. Something that has surprised me about living with an illness is: the way it can take over your thoughts. I had to really watch myself to make sure I didn't let endometriosis and infertility define me.

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

29. I'm involved with Endometriosis Awareness Month because: it matters. I don't want this to affect my niece the way it did me.

30. The fact that you read this list makes me feel: valued
 
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endo2002 responded:
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: ENDOMETRIOSIS
2. I was diagnosed with it in the year: 2001
3. But I had symptoms since: 1991
4. The biggest adjustment I've had to make is: learning to deal with my disease without help
5. Most people assume: I am healthy just overweight
6. The hardest part about mornings are: finding enough encouragement to get out of bed.
7. My favorite medical TV show is: House
8. A gadget I couldn't live without is: my heating pad
9. The hardest part about nights are: not being able to get comfortable enough to go to sleep and then staying asleep
10. Each day I take __ pills & vitamins:
11. Regarding alternative treatments I:
12. If I had to choose between an invisible illness or visible I would choose:
13. Regarding working and career: My work had no idea I was sick until I filled out FMLA paperwork for my surgery on April13th. ( 10 years and they were ignorant)
14. People would be surprised to know: It took me 10 years to accept the disease.
15. The hardest thing to accept about my new reality has been: the disease and how it effects me.
16. Something I never thought I could do with my illness that I did was: Honestly, graduating high school ( due to missing soo much school from the pain) and keeping my job without any interruptions for 10 years.
17. The commercials about my illness: none.
18. Something I really miss doing since I was diagnosed is: the long endless nights of passionate love making.
19. It was really hard to have to give up: sex and lots of foods I love.
20. A new hobby I have taken up since my diagnosis is: researching and educating myself even more.
21. If I could have one day of feeling normal again I would: Spend the entire day with my hubby and enjoy the hours of foreplay and love making.
22. My illness has taught me: to be strong and if I put my mind to something I can actually accomplish it.
23. Want to know a secret? One thing people say that gets under my skin is: I know how you feel. ( It pisses me off because they have not clue how I feel)
24. But I love it when people: ?
25. My favorite motto, scripture, quote that gets me through tough times is: I really don't have one.
26. When someone is diagnosed I'd like to tell them: be your own advocate and educate yourself. Only you know what your body is doing.
27. Something that has surprised me about living with an illness is:
28. The nicest thing someone did for me when I wasn't feeling well was: helped by keeping all my employees calm while I had a major pain attack at work.
29. I'm involved with Endometriosis Awareness Month because: I want to spread awareness about the disease so maybe in 15 yrs my nieces will have better chance of diagnosis then I did.
30. The fact that you read this list makes me feel: honored.
Tabitha
 
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iheartdoxies replied to endo2002's response:
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Endometriosis
2. I was diagnosed with it in the year: 2007
3. But I had symptoms since: 2006
4. The biggest adjustment I've had to make is: Altering my dreams, accepting my body can't handle the high powered career I wanted
5. Most people assume: I'm really not in pain and using my illness as an excuse to avoid responisbilities
6. The hardest part about mornings are: Getting ready to face the day
7. My favorite medical TV show is: Scrubs
8. A gadget I couldn't live without is: My Thermo Pack, for cramps
9. The hardest part about nights are: Falling asleep when Chris is out of town
10. Each day I take __ pills & vitamins: 4
11. Regarding alternative treatments I: Don't regard them at all
12. If I had to choose between an invisible illness or visible I would choose: Invisible. I love being in control, and at least I can control who knows about my illness if I can't control it
13. Regarding working and career: If I was being honest, I wouldn't work if I didnt have to. I wouldnt leave my house...
14. People would be surprised to know: How unhappy I really am
15. The hardest thing to accept about my new reality has been: Having to have surgery every 3 years
16. Something I never thought I could do with my illness that I did was: Going three months without missing work
17. The commercials about my illness: Don't exist
18. Something I really miss doing since I was diagnosed is: TMI warning....uninhibited sex
19. It was really hard to have to give up: See question 18
20. A new hobby I have taken up since my diagnosis is: Being a pet owner
21. If I could have one day of feeling normal again I would: Again, question answer 18 lol
22. My illness has taught me: Who my real friends were
23. Want to know a secret? One thing people say that gets under my skin is: Suck it up (or something to that effect)
24. But I love it when people: Don't bother to ask, I'd rather not explain anyway
25. My favorite motto, scripture, quote that gets me through tough times is: "Fake it 'till you make it" and "Life is what happens when your busy making ofther plans"
26. When someone is diagnosed I'd like to tell them: Haven't had the opportunity, but I'd say... A good doc is key, dont let anyone bully you into a treatment you know isn't for you. Find an OB who really listens, and join wed md!
27. Something that has surprised me about living with an illness is: Just how cold and ignorant people can be, to their own family
28. The nicest thing someone did for me when I wasn't feeling well was: Everything. Chris lets me relax and he takes over the show, as well as extra hugs and kisses :)
29. I'm involved with Endometriosis Awareness Month because: it is important to me
30. The fact that you read this list makes me feel: Hopeful
 
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Shanikin responded:
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Endometriosis (stage 4)

2. I was diagnosed with it in the year: March 2011

3. But I had symptoms since: Apparently I've had symptoms my whole adult life (well at least since I started my period) and didnt even know. I didnt have any pain until January 2011

4. The biggest adjustment I've had to make is: my diet and exercise routine have both changed.

5. Most people assume: that having Endometriosis means chances of children are slim. This is exactly what I though and from reading your stories and researching, i'm finding out that this isn't always the case.

6. The hardest part about mornings are: not having coffee to start my day :-(

7. My favorite medical TV show is: The Doctors

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

9. The hardest part about nights are: realizing what I still have left to do that day and not enough time to do it!

10. Each day I take: I do not take pills or vitamins

11. Regarding alternative treatments I: I have just started "attempting" to do the endo diet - we'll see how it goes :-)

12. If I had to choose between an invisible illness or visible I would choose: invisible, I tend to be a pretty private person and would rather not announce to the world what I go through. Although, I wouldnt be ashamed of a visible illness either.

13. Regarding working and career: I'm lucky to have a very flexible job with a very flexible schedule. I work with 2 women who have experience with endo who have really helped me understand.

14. People would be surprised to know: This disease doesn't run in my family. Out of all the women in my family I am the only one who has ever had abnormal/painful periods or trouble with fertility.

15. The hardest thing to accept about my new reality has been: realizing that, symptom or no symptom, pain or no pain, this is a disease that I will have to deal with the rest of my life. I want to do anything I can to keep it at bay.

16. Something I never thought I could do with my illness that I did was: I can do anything I put my mind to, and so can everyone else :-)

17. The commercials about my illness: nada

18. Something I really miss doing since I was diagnosed is: Ask me this in a few months, I'm a newbie still

19. It was really hard to have to give up: COFFEE! have I said that yet? :-)

20. A new hobby I have taken up since my diagnosis is: message boards :-)

21. If I could have one day of feeling normal again I would: Considering I've had this disease for YEARS and didnt know, I guess this is "normal" for me.

22. My illness has taught me: that I dont know everything

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

24. But I love it when people: make me laugh, which isn't hard to do :-)

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

"I believe that everything happens for a reason. People change so that you can learn to let go, things go wrong so that you can appreciate them more when they're right, you believe lies so you eventually learn to trust noone but yourself, and sometimes good things fall apart so better things can fall together." -Marylin Monroe

26. When someone is diagnosed I'd like to tell them: I dont feel like there is a whole lot that I can say about this now. But when I got diagnosed my mom sort of panicked because she doesnt understand what it is and I told her "Things could be a lot worse, this isn't a death sentence. Everything will be alright" I am a firm believer in optimism!

27. Something that has surprised me about living with an illness is: learning exactly how many other women are diagnosed each year, and how little doctors know about it.

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

29. I'm involved with Endometriosis Awareness Month because: I'm newly diagnosed, and trying to learn all I can

30. The fact that you read this list makes me feel: loved :-)
Shannon - diagnosed with stage 4 endometriosis during laparoscopic surgery in March 2011. TTC baby 1 :-)
 
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Angie22PR replied to Shanikin's response:
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Endometriosis
2. I was diagnosed with it in the year: 1998
3. But I had symptoms since: 1995
4. The biggest adjustment I've had to make is: Accepting my limitations.
5. Most people assume: I am a healthy person.
6. The hardest part about mornings are: Getting out of the bed when my body wants to sleep more.
7. My favorite medical TV show is: ER
8. A gadget I couldn't live without is: laptop
9. The hardest part about nights are: my night sweats
10. Each day I take 2 pills & vitamins:
11. Regarding alternative treatments I: feel skeptical
12. If I had to choose between an invisible illness or visible I would choose: visible
13. Regarding working and career: I try hard to manage it.
14. People would be surprised to know: I am in pain (one or another) everyday.
15. The hardest thing to accept about my new reality has been: that there is no cure for it.
16. Something I never thought I could do with my illness that I did was: go for my Masters and have a happy marriage.
17. The commercials about my illness: what commercials? No one talks about it!
18. Something I really miss doing since I was diagnosed is:
19. It was really hard to have to give up: food like lactose and coke
20. A new hobby I have taken up since my diagnosis is: scrapbooking
21. If I could have one day of feeling normal again I would: enjoy it to the fullest, run around the park and enjoy!
22. My illness has taught me: How strong I really am
23. Want to know a secret? One thing people say that gets under my skin is: when are u gonna have babies? You been married for 5 years already!
24. But I love it when people: Complement me and my husband.
25. My favorite motto, scripture, quote that gets me through tough times is: this too shall pass...
26. When someone is diagnosed I'd like to tell them: I'm so sorry and give them a hug
27. Something that has surprised me about living with an illness is: how little people know and care about it.
28. The nicest thing someone did for me when I wasn't feeling well was: my husband always takes care of me and helps me to feel better.
29. I'm involved with Endometriosis Awareness Month because:
30. The fact that you read this list makes me feel: HAPPY!!! :)
 
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mcgalla responded:
1. Illness I live with is: Endometriosis and IBS
2. I was diagnosed with IBS in 2007 and Endo in 2008.
3. I've had symptoms since 1997
4. The biggest adjustment I've had to make is scheduling my life around the pain and when I have my period.
5. Most people assume that Endo isn't a big deal because you don't die from it or because they know someone who has it and for that person it might not be as painful, they don't realize there are different stages and levels of pain and everyone feels it differently.
6. The hardest part about mornings are getting out of bed when my lower back and pelvic area hurts so bad.
7. Not into a medical show at the moment but I used to love House.
8. Not too much of a gadget-y person, but I could not live without my hair straightening iron.
9. The hardest part about nights are that I always have a hard time falling asleep, sometimes it takes me hours. Not sure why that is.
10. Right now just sticking to prenatals, before I took prenatals, an herbal supplement to balance hormones, and painkillers during my period.
11. Regarding alternative treatments I visit my chiroprator occasionally and for IBS I rely on herbal teas like ginger, fennel, peppermint, etc, they get me through the rough times without having to rely on antispasmodic drugs.
12. Not sure about this one, can I choose not to have an illness, lol?
13. I am a landscaper and work for my family run business (which also includes a farm). I'm outside working and also take care of all of the office work as well.
14. People would be surprised to know that I don't like going to the movies. I like watching movies but I hate sitting in a theater to watch a movie because it always feels so much longer, and I can't sit for that long, lol
15. The hardest thing to accept about my new reality has been that if I have a daughter, there is a chance she might develop endometriosis too.
16. Not sure about this one either.
17. I don't think there are any commercials about Endo. There should be
18. Nothing I guess.
19. Its been really hard having to give up foods that I like to eat but are trigger foods for my IBS. Sometimes I still cheat but certain times I can't and its hard watching other people eat things that I wish I could eat too.
20. Our Endo board has in a way become a new hobby for me since being diagnosed.
21. If I could have one day of feeling normal I would definitely choose a day when I have my period and I would choose to be able to go out with friends and not be home stuck in bed in pain, and I wouldn't have to worry about being near a bathroom since my IBS is crazy during my period. Oh to have a normal day!
22. My illness has taught me that you never know what a person feels, you have no idea the pain they might deal with on a daily basis or the challenges/obstacles they may face.
23. When people don't believe endo is real or they don't think its that bad.
24. I love when people are genuinely kind.
25. "Tomorrow is always fresh, with no mistakes in it" -Anne of Green Gables
27. How much your mind/attitude can affect how you feel. Its hard not to get overwhelmed by endo but when I remind myself that really I'm truly blessed in so many ways and that my pain could always be worse or my situation could be worse, I remember how good things really are. And then I start to feel better.
28. Nicest thing someone has done would have been to pray for me when I'm not feeling well, and also take care up me.
29. Because we need to bring awareness to this disease that so many women suffer in silence about.
30. Special!
Carrie
 
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mcgalla replied to mcgalla's response:
forgot # 26: I would tell someone to not let doctors make you feel like you are crazy and that you make the pain up in your head. I was treated that way for years before I was finally diagnosed. And to learn as much as you can about endo to help yourself because its hard to find a dr. that knows enough about this disease.
Carrie
 
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Haleyubcstudent responded:
1. The illness I live with is: Endometriosis and Rheumatoid Arthritis
2. I was diagnosed with it in the year: Endo-March 2011 Arthritis-2009
3. But I had symptoms since: Endo-2005 Arthritis-2006
4. The biggest adjustment I've had to make is: fitting in doctors appts around school
5. Most people assume: i am healthy and over-exaggerating to get attention
6. The hardest part about mornings are: stiffness and getting out of my warm bed
7. My favorite medical TV show is: grey's anatomy
8. A gadget I couldn't live without is: my ipod-music is my escape
9. The hardest part about nights are: getting to sleep
10. Each day I take __ pills & vitamins: 5
11. Regarding alternative treatments I: am in debt to them! they literally saved my life when doctors couldnt figure out what was wrong with me
12. If I had to choose between an invisible illness or visible I would choose: invisible, i dont like people knowing lots of personal things. i like being able to choose who knows and who doesnt
13. Regarding working and career: i try to fit it in around school
14. People would be surprised to know: that i get crazy pelvic bone pain that gets worse with exercise
15. The hardest thing to accept about my new reality has been: having doctors down in my lady parts!! lol
16. Something I never thought I could do with my illness that I did was: have kids when i want them! i thought endo meant no kids so i was so happy when my gyno/ob said everything should be good when i am ready!
17. The commercials about my illness: are non-existent. why is that?
18. Something I really miss doing since I was diagnosed is: not sure! hasnt been long enough!
19. It was really hard to have to give up: competitive sports
20. A new hobby I have taken up since my diagnosis is: web md!!
21. If I could have one day of feeling normal again I would: go out with my friends and party like a normal kid!!!
22. My illness has taught me: that women are by far the stronger sex!
23. Want to know a secret? One thing people say that gets under my skin is: i know how you feel. esp when its a guy! how does he think he knows!
24. But I love it when people: dont make a big deal of my pain attacks, they just leave me alone! :)
25. My favorite motto, scripture, quote that gets me through tough times is: life is not fair (its the only reasoning i have for all of my medical problems!)
26. When someone is diagnosed I'd like to tell them: they arent alone even if it feels that way and to check out web md!!
27. Something that has surprised me about living with an illness is: how often i find myself thinking about it and the long road i have ahead!
28. The nicest thing someone did for me when I wasn't feeling well was: my bf brings me a cup of tea, snuggles me and rubs my back
29. I'm involved with Endometriosis Awareness Month because:
30. The fact that you read this list makes me feel not alone anymore!!!


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