Sunday, July 7, 2013

For The Endo Girls : What NOT To Say To A Woman With Endometriosis.

In dealing with all the emotional and physical pain that comes with endometriosis, there are a lot of situations where kind-hearted people want to offer support, but don't know what they should say. And often, in an effort to be loving and comforting, they end up being accidentally insulting.

So I am sharing a few less-than-helpful comments that I've heard from nurses, doctors, friends, family, and coworkers multiple times.

Not to embarrass anyone who has said these things to me, but to hopefully explain why these things aren't appropriate to say to women with endometriosis and provide some positive alternatives for moments when well-intentioned people are looking to provide comfort.

If you know a woman who is suffering with endometriosis, please don't say....



"Have you tried Ibuprofen?"

          This is a really common one. I even got asked this a few times in the Emergency Room, while I was crying in pain. Women with endometriosis have often been dealing with severe, chronic pain for at least 5-10 years. Just go ahead and assume that at some point, they've tried Ibuprofen, Midol, and anything else they could get their hands on in the medicine aisle of their local grocery store. And for the majority of the time, those pills do not even touch the pain which is why they turn to heavier medications.


"I mean, you look like you feel well so it can't be that bad."

          This one's always a little rollercoaster for me. Starts as a compliment, ends as an insult. "Thanks! Oh, waiiiit... that's not a compliment, you think I'm a liar." Endometriosis is labeled as an "invisible illness". Everyone's body handles it differently. Some women have severe bloating in the abdomen and you may be able to tell when someone looks tired, but just because someone has learned to function in their life and brush their hair through their flare ups, doesn't mean their pain doesn't exist on an extreme level.

"You just want people to feel sorry for you."

          Most girls with endometriosis who decide to share their experiences, do so for several reasons :

                    1) they want to raise awareness for a disease that many people have never heard of.
                    2) they want to explain themselves to the friends they constantly flake on or the boss they're calling in sick to
                    3) they want to connect and relate with other girls with endometriosis
       
         Attention and sympathy don't come up on that list. I guess maybe for some girls, but not for most.

"If there isn't a cure, you're going to need to just toughen up and get over it."

          First of all, don't ever let someone take away your hope like that. There isn't a cure but there are many treatments that women have found relief from. It's a long process, but eventually improvement can be found if the right treatment is introduced to the right person. Second of all, women with endometriosis are tough so much of the time. This goes back to endometriosis being an 'invisible illness'. People assume it's something small enough that you can get over it, but it's not. It's emotionally, physically, and mentally draining on every level. Keep your hope but don't ever feel like you should be able to 'get over it'.

"It could be worse, at least you don't have cancer."

          I never know what to say to this, so I will just share one quick quote from a doctor I recently started seeing. He is a naturopathic doctor, married to a woman who was having surgeries for her endometriosis every 2 years, like many women do, with no relief from pain. He went into natural medicine to try and find a way to help her because he saw the struggle firsthand and couldn't believe the lack of understanding that the surgical professionals had about endometriosis cases. His words at my appointment validated me more than anything ever has :

            "People who haven't seen it firsthand refuse to see endometriosis as something serious and detrimental because it isn't life threatening. No, it isn't going to take your life. It's just going to stop it completely. You'll be alive, but incapable of living. You'll work twice as hard for half the success in life. It's not living at all."

          Every day, I am very thankful that my condition is not worse, but please do not belittle the struggle I'm going through by saying something like "at least it's not [insert other disease]."

"I knew a girl who had that and she was fine."

          Endometriosis targets every woman differently. The same diet doesn't work for everyone. The same treatments don't work for everyone. The same surgeries don't work for everyone. Everyone is different. I'm glad your friend was fine. She's very fortunate.

"You're so lucky, I'd love to take that many days off of work."

          I live in constant fear that I am going to lose my job because of how many days I am unable to get out of bed and get to work. And those days that I miss are miserable because I'm sitting at home, taking medicine that I need a paycheck to afford, but not able to work for that paycheck. It's not a vacation. It's an anxiety ridden, terrible, painful situation. I would give anything to never call in sick again. Nothing about that is lucky.

"You just need a more positive attitude."

          A positive attitude isn't going to detach endometrial adhesions from the sides of organs. A positive attitude isn't going to give an woman with endometriosis a sure chance at children. A positive attitude can be helpful for a person mentally, but after years of surgeries, procedures, medications, doctors appointments, and emergency room visits, sometimes it's really hard to keep that positive attitude. And that's okay. You're allowed to be sad and discouraged sometimes.


And my absolute least favorite....

"Yeah, I have cramps today too."

::insert screetching brakes sound here::

          Endometriosis is not cramps. It's not even "bad cramps". It's chronic pain caused by internal bleeding and inflammation. There are two types of endometriosis pain : tolerable and intolerable. It can't be solved with over the counter medication or a heating pad. It's not the same thing as cramps. When they have an endometriosis flare up, most women are unable to move at all. Comparing that to cramps is incredibly degrading.

-        -         -         -         -

Again, I understand the people who said these things had good intentions and were just trying to provide help in some way, but these words cut more than they heal. 

So what should you say?

The next time you see a woman going through the pain of endometriosis, instead of telling her it could be worse or that she needs a better attitude, you can tell her you think she's a strong person, because she is.

Or instead of telling her that she looks good so she must feel well, you can tell her that you admire her ability to handle pain as gracefully as she is.

Instead of telling her she is lucky to be sick and you wish you could call-out too, you can tell her that you're sorry she had to miss work. You know that must suck. Or you can ask if there's anything she needs.

And there probably won't be anything! There's not a whole lot that anybody can do, she just has to wait it out. Better days will come. But your consideration and willingness to help will mean the world and will provide much more comfort than any other recommendation or "advice" you could give her.

For the endo girls : Did I leave out any that you've heard often? What would you rather have someone tell you instead?

To the rest of you, as always, thank you for reading and allowing yourself to be more informed.

Love and blessings to all of you. xoxo

Wanna swap pain relief tips? Go Here.

110 comments:

  1. Thank you for sharing. Being that I have never heard of this before reading your blog, I appreciate the info. you are providing. Like the whole 5-10 years before being diagnosed... that is horrible. keep being strong :)

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    1. Thank you so much for reading and learning a little more about this! The more people who are aware of it and what to look for, the better for the other girls who have yet to be diagnosed!

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  2. These are the same things people with Crohn's (and every invisible illness, actually) hear. It's hard, but we're tough. Hang in there, Kelle! :)

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    1. We should start an invisible illness club. Toughest club of medicated kids in town hahaha

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  3. Thank you for sharing Kelle. I have had a few run-ins myself with some less than appreciated comments in regards to food sensitivities. However, since I started avoiding those foods, the pain has subsided. I feel horrible for you, because I remember being afraid that the pain would not subside. I hope the naturopathic doctor is working for you, and I hope that you and other girls with endo begin to feel better as a result. It's like people who have never experienced these kinds of things think those who have are weak, but it just shows lack of perspective. You are an incredibly strong young woman, and your positive energy and attitude will help you emotionally and hopefully help to find a cure/treatment. Hugs to you!

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    1. Sometimes it amazes me what people think is okay to say to another person! I'm glad that you've been able to get your pain under control - I hope for a similar outcome for myself! Thank you for always being so full of kindness and encouragement, Kristin! So glad to know you!

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  4. This is so enlightening. People say things that can be meant well, but are actually really insulting. Good for you for sharing all of this to help educate. xx

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    1. Thank you so much for reading, Nathalie!

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  5. From one endo sister to another, THANK YOU!!! You hit the nail on the head!

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    1. So glad you can relate! Thank YOU for reading! <3 Stay strong, dear!

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    2. I agree with Rachel!!! Thank you Kelle!! With your permission I will forward your article to every person I know!!!!!!!!

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  6. I honestly can't BELIEVE some of these. I just can't.

    Your doctor made a good point - even though it isn't life-threatening, it still keeps you from living. That almost seems worse/more frustrating. I think it's great that you share these things.

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    1. I had a friend text me and ask if people really said these things to me because they just seemed like common sense, haha. I thought the same thing the first few times I heard them but after a while assumed maybe people just really don't know! Thank you so much for reading, it means so much to me for girls who DON'T have endo to have an interest in learning about it.

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  7. Great post! My endo pain is in my legs, and I can't tell you how many idiot doctors were stumped by this (apparently my endo is on the back of the uterus, so when it flares up, it pinches a nerve in my back that runs down the front of my legs). One nurse gave me a "maybe you walked too far today". Seriously???? Some doctor thought the muscles in my legs might be degenerating. Right. Every month during my period. Because THAT makes sense.

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    1. Hahaha, the things they come up with sometimes... So frustrating when you are sure it's something more serious and they just brush you off! Hope you've been able to find something that helps leg pain - no fun!

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    2. I often feel the pain in my right foot. I also have it in my pelvic area, but the right foot thing seems to stump doctors. I know it's endo related because the only time I have pain in my foot is during a flare up. Surprisingly, when I'm in pain my husband's awesome foot rubs sometimes help relieve the pain in my pelvic area. The body is a strange thing!

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    3. Carrie, this is an excellent point you bring up about your husbands foot massage helping with your pain & you said you weren't sure why that is so I wanted to help you with that love. There is a homeopathic pain relief practice called Reflexology-where the feet & hands are used to help with chronic pain among other ailments. It works by using pressure points in our bodies to relieve the trigger point of our pain. I have used this method for years for my endo & it has done wonders without all of the nasty side effects of the rest of the treatments being thrown at us. You may even be able to find more relief & in other areas of your body aside from your foot if you do some research to find out which pressure point coincides with the areas you experience your pain. (((Hugs)))

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    4. Hi Amy,
      I have always had pain in my left hip, tailbone and down my leg. Mine was also on the back of my uterus! My most recent diagnostic lap showed some visible endo, not nearly the train wreck I've become accustomed to. So when I had a robotic hysterectomy last month my surgeon was amazed at how much was stuck together "in the back"! While I know a hyst is not a cure, it's the best thing I've ever done. I feel better in my legs and I have a feeling like my body is no longer toxic. I can think clearly for the first time in 18 years. I know it's not a popular choice but I'm glad I did it. I don't know how long it will last but I'm rocking this pain free life as long as it lasts!!!

      I wish you pain free days and hope for a remedy that helps you get some relief! Hugs!

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  8. Thank you for posting this, it means a lot. I am in the middle of being diagnosed... My doctors are not sure whether or not I have Endo, Crohns or Poly Cystic ovaries- which is what they are telling me now. Good to know that when I feel like I am alone and no one understands what i'm going through that someone does understand. :)
    -Bethany.

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    1. I'm so glad you were able to stumble upon this read! I've also got PCOS and apparently sometimes the symptoms between that and endometriosis seem really similar. I hope you are on your way to a proper diagnosis and feeling better soon! Thanks so much for reading and take care! xo

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  9. Hello!
    I am from Germany and would like to translate this and put in my endo-group, if you wouldn't mind? I really like, that you pointed out, what instead to say! Could be a great help for our endometriosis groups here in Germany, we are trying to raise awareness to this disease!
    Thank you for you wonderful block :)
    Greetings and God bless you
    Katja

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    1. I would be honored if you would do so! Thank you so much for your kind words! Best of luck to you with your health and thank you for spreading awareness!

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  10. Maybe it's because I'm in California, but the most common rage-inducing comment I get is:
    "Have you tried yoga? It'll make all your pain go away."

    'Cause yoga will somehow stop my lesions from bleeding and the adhesions from yanking my ovaries out of place?? Right. Sure. Uh-huh. Oh, and btw, I've tried yoga. And acupuncture. And cutting dairy from my diet. And raw food. And meditation. Etc etc ad infinitum. It's important to remember that just like "regular" medical treatments, alternative treatments and modalities work differently (or not at all) for every woman with endo.

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    1. Hahaha, yes! I feel you on this one. I actually started doing yoga on that same recommendation and although it does NOTHING for my pain, I've found that I enjoy it on the days I feel well enough to do so, so I've kept with it. And you're absolutely right! The different diets, holistic treatments, surgeries... no two women will react exactly the same way to any of these approaches. It's important, I think though, to continue trying new things until we find the thing that works best for us specifically, and to try not to lose hope in the process!

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  11. I have adenomyosis, which is very similar to endometriosis. It's funny because I actually say some of those things to myself to try and cope. Especially "toughen up", "at least you don't have cancer" and "you just need a more positive attitude."

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    1. I think that is so interesting! The biggest thing I say to myself during my pain is "just get through it - it will end eventually". I will repeat it over and over until the pain decreases. Something about remembering that it isn't going to be that bad forever helps me, I suppose.

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  12. Thank you for writing and sharing this! I was diagnosed with endo in 2005, and since then have not had a period (suppressed by medication), just to prevent monthly hospital visits and complete misery. So, you can imagine how wonderful I feel when I tell other women about this, and they respond, “Oh my god, you’re so LUCKY! I wish I had that so I didn’t have to get my period!” It’s excellent. I also spent a year during undergrad doing research on endo, and can’t tell you the number of times people referred to endo as “enderomertri…what??” (If you're interested, check out my blog: http://blogs.stlawu.edu/sluendo/)

    Thanks again for posting, your blog is great!!

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    1. That's actually the method that my doctor is trying now too, is constant medication as a prevention method. It's something I haven't told many people about for that exact same reason. I have noticed an improvement in my pain, although certain days are still pretty rough, haven't had to go to the hospital in over a month! (Knock on wood.) Thank you so much for reading and I hope that you continue to feel well! I will definitely give your blog a read! Thank you again!

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  13. Great article! Someone shared it on FB and I hope it goes viral and educates as many people as possible - especially potential sufferers to not give up getting diagnosed and treated.

    One issue I didn't see covered is what the attached uterine tissue does to the organs to which it attaches. My diagnosis took more than 10 years. I was a stage 4 and the lesions were mostly on my intestines. As the lesions had grown slowly over decades, I just thought my chronic constipation and intestinal cramping was a "nervous stomach" inherited from my mother.


    After a ruptured ovarian cyst, I had to make an issue with my HMO at the time to get to a referral to an OBGyn preferred list who knew how to treat uterine issues properly.

    After the surgery I was shocked how much better my system worked. Luckily the one surgery was enough for me.

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    1. Thank you so much for the kind words! Ugh, it sounds like you've been through a lot. I'm so glad to hear that the surgery was a success for you the first time around, that's wonderful! I hope you continue to feel well! Thanks for reading!

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  14. So eloquently, politely and respectfully explained. I agree that anyone with invisible illness has to put up with these sorts of hurtful comments. Thank you for explaining the negative effects of such 'advice' so well but also for suggesting suitable alternatives for well-intentioned people to say. As a sufferer of endo and adeno, I fully endorse everything you have written in your article, and share the experiences of fellow correspondents above, especially about the anxiety about having to take time off work. I have lost jobs because of absenteeism, (people who have never suffered a chronic illness can be very impatient and judgmental) but what can one do when one cannot even move let alone get out of bed. Thank you for writing this important article.

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    1. Thank you so much - I really appreciate your sweet comments. I'm so sorry that you have lost jobs due to situations that are clearly out of your control, but you are right. There is absolutely nothing you could've done. :( I guess we all just learn to roll with the punches as we go. Thank you again for reading and I hope you are able to find good health and relief of pain in some way. Take care! xo

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  15. As an endo sufferer this made me smile :-) Love your blog x

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    1. Thanks so much! I'm overwhelmed with the response from other women with endo on this post - makes me feel like part of an awesome family instead of a terrible club. ;)

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  16. I was diagnosed at 14 and have had 7 laps for endo (including an oompherectomy and a hysterectomy) and the thing that I always hear when I am in pain that drives me crazy is "You've gotta do something, you can't go on like this". I know people mean well when they say that so I say "I know, I just want it to be over with", but what I really want to say is "Are you kidding me?! I've tried EVERYTHING, probably even some treaments you never even knew existed! Trust me, I want to feel better waaaay more than you realize!" Just something I've always heard that I'm sure a lot of endo sufferers have to deal with. :/

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    1. Holy moly, girl. You've really been through the ring. I so admire your perseverance! I LOVE your quote contribution.. I have heard that many times as well and you're right, it's so hard because you know it's coming from a good, caring place but of course they HAVE to know that you are doing all you can. Breaks my heart every time. Thank you for reading and for your comment - stay strong <3

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  17. My least favorite is "Just have a kid, that'll take care of it." (I've actually been told this by a doctor, "have a kid or two and we'll give you a hyst and you'll be fine.")

    Number one, I probably can't have children thanks to this horrible disease, multiple surgeries, AND having celiac disease.

    Number two, how do these people who keep telling me to have a child know that I even want kids?!

    Number three, THAT ISN'T A CURE!!!

    Thank you for the great read! I can 100% relate.

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    1. Yikes, a doctor said that to you?! I can't believe so many of them throw around "hysterectomy" like it's nothing! I heard it from almost every doctor I saw and it made me feel like it was my only choice - such a hopeless feeling. Thank YOU for the comment - you seem like you have a lot of determination and I really hope that you are able to live a life free of pain someday. Praying that for all of us!

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  18. these are perfect. ;)

    someone shared the link in an endo group on FB that i am an admin in (a very good one, i might add - 2 very well known excision specialists, plus other endo educators, participate there): https://www.facebook.com/groups/endometropolis/

    *all we can do is spread the word, so maybe in the future girls won't get diagnosed so late & lose organs (like myself) & parts of their lives.....

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    1. Thank you so much, glad to be a part of that Facebook group - it seems like a wonderful resource! And yes, that is my greatest goal in sharing my experiences! Stay strong and take care - thanks again!

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  19. Thank you sooo much. I had a total hysterectomy and om still suffering. I just wish others could read this and understand.

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    1. I am so sorry to hear that :( My heart breaks for you... I hope that the people who don't have endometriosis that read this are able to get at least a little perspective on the situation and I hope that somehow you are able to find improvement and relief from your pain. I'm so sorry - sending a hug to you. <3

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  20. take your cramps and times them by 10 or more then come talk to me about having cramps I've had endo since I was 12 was diagnosed at 17 with it was very bless at 20 with my only child a little girl and now at the age of 35 had a full hysterectomy June 11 2013 and when ask why I had a hyst I still get them looks and people has even said well now a days they will give anyone a hyst if the complain enough do you know how bad that hurts people don't understand and never will if they don't live through it

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    1. Oh my gosh, the things people say.. I'm so sorry to hear that people have been so insensitive with their words. Obviously, a hysterectomy is never something a woman goes through without a lot of thought and consideration - especially in a case like this. I'm so glad to read that you have a beautiful little girl. I hope someday people are informed enough to know better than making comments like that but in the meantime we just have to keep doing our best to be patient and fill them in on the things they don't understand. Take care, dear!

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  21. Thanks for sharing this. I just recently found out in November 2012 I have endometriotris. I have a mild case and I feel incredibly lucky, but at the same time crushed. This condition is making my dream to be a mother seem farther away then I could ever imagine.

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    1. Oof, girl, I hear you on this one. I feel like getting diagnosed can be such a bittersweet experience. It's so nice to finally get an answer but then you just ask yourself "But... what do I do now?" I have struggled so much with the idea that I may not be a biological mother in my life and it's something I've yet to completely come to terms with. How does any woman really come to terms with that? I'll be keeping you in my thoughts and prayers as you continue on your journey with endometriosis. Hoping the best for you - thanks so much for reading.

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  22. I have heard from a doctor that I need to buck up and stop using endo as an excuse. That was one of the worse things I was REALLY mad. Its so hard when people don't understand or believe you. I got forced dropped this year from my school because I missed a lot and I guess they didn't believe me or understand even if I had a doctors note. It was my senior year :( Thank you so much for posting this stuff it makes me realize I am not alone.

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    1. Wow, that is unbelievable. I'm furious just reading it, I can't even imagine how you must've felt! I'm so sorry to hear that you got dropped from school.. It's amazing how uncooperative teachers and school districts can be with chronic illness. I really hope you can see from all the comments from other strong women like yourself that you are definitely not alone. You are a part of a really special and extraordinary group of girls and if you ever need encouragement, they're there for you! Try browsing the endometriosis hashtag on instagram or twitter, or looking for an endometriosis support page on Facebook. Those have helped me more than most things a doctor could recommend. Best of luck to you. xo

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  23. Thanks for this post! I was diagnosed with endo early this year, but had been living undiagnosed for years. I find myself trying to educate my family and friends so they understand, but at the same time my instinct seems to be do downplay my symptoms (yes, I often use the awfully inappropriate term "cramps") so they don't worry about me. I need to stop doing that! I know this post is aimed at people talking to women with endo, but you've also helped me figure out what not to say to others about my endo. Thanks a bunch!

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    1. Thank you for reading! I'm so glad to have been able to help in some way! Take care and hope you're feeling well!

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  24. I get so many of these remarks ALL the time. Someone said to me last night (as I was in pain at a social event), 'oh my sister gets period pain, try taking a blood thinner two days before your period is due'.. I laughed inside but didn't want to make her feel bad. I said 'thanks for the suggestion, but I am actually on a big protocol for my condition, it's not just normal period pain, plus I am in bad pain and my period isn't due for another 6 days'. She tried to explain that you need to take it two days prior because you ovulate 2 days before your period. Haha, right...
    It's such a tricky disease, and so very frustrating. I've had my appendix out because they thought it was appendicitis when i was 15. Still no pain relief, in and out of Emergency so many times when I was 23, and I had doctors telling me it was everything from Pelvic Inflammatory Disease to kidney infections, and that 'you simply don't look sick enough to be here, just continue taking pain relief daily'. I wanted to slap him and spit in his face. I sobbed. Why do you think us women don't 'look sick enough'?! Because we have a high pain threshold and know how to tolerate pain better than most!! IDIOT!
    Sorry about my rant, I get emotional thinking about that experience. I've journalled most my stuff on my blog: kimberlydhyani.tumblr.com
    XXX

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    1. I shuddered when I read that they took your appendix out because they thought it was appendicitis! So many misdiagnoses that should and could be avoided! I'm so sorry for the struggle that you've had to go through and will be reading your blog for sure. Hope that you are having days where you feel well and are able to enjoy yourself! Take care!

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  25. Thank you so much for this! I've heard almost everything on this list. When someone says one of these things it's hard to describe how it makes me feel. Angry, astonished, alone, misunderstood, neglected, enraged...

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  26. One more thing. I agree about asking if there's anything you can do to help when someone you know has endo. I often flake out on social engagements, and on these occasions I have one friend in particular who always texts me and asks if I need anything. Usually my answer is no, but I feel so incredibly grateful that she asks. It makes a world of difference, even though there's not much anyone can do.

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    1. I really think it's one of the greatest comforts! Even though the answer is usually no, just knowing someone is willing to help if they can means the world! Take care! Hope you've been having good days!

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  27. so very true..................
    Like · · Share · 3 hours ago

    Endometriosis Australia Thanks. Where is this from Mairin?
    47 minutes ago · Like

    Mairin Mccubbin-
    Thank you Wendy Tuohy ! your article in the Herald Sun today(17/2/13) is spot on!
    (page 98,Wendy Tuohy on the Perch)
    I agree that most don't know or realise they are so cutting in their remarks but it does hurt occasionally & we do miss the friendships that change because of it....but that is nature v nurture isn't it?
    25 minutes ago · Like

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  28. I was not aware of endometriosis until you started posting about it on your blog, and I just wanted to say thank you so much for sharing. I've become more aware and informed about it, and I'm always looking forward to hearing what you have to say. My eyebrows are still raised at some of the things that people have actually said to you, but I know from personal experience that when something is unfamiliar to many, there is usually some form ignorance that comes along with it—even if people mean well with what they say. I'm sending each and every one of you very strong women many hugs!

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    1. Thank YOU for being interested and wanting to learn more about it. The only thing we can do to combat ignorance is to raise awareness about the things people know little about. :) Thank you again for your kindness!

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  29. A favorite of mine..."You're in pain again?" YES! I am in pain again. Do I want to be in pain again? This isn't something that I am not going to feel next month and the month after that. I MAYBEEE get a decent WEEK out of a month. My pain is never at a 0/10. At best, a dull aching 3/10. That gets to me. Prayers and love to all my Endo Sisters <3

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    1. Absolutely. I hate when people ask how I'm feeling, I say "good" to be polite and they say "See? All better!" Haha it's like you said, 3/10 isn't all better. It's just tolerable pain. :( I hope that you are able to find relief in some way. Thank you so much for your comment. Take care!

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  30. Thank you so much for sharing this!!! I have run into the exact same situations & these seem to be the more popular comments made by those that aren't afflicted with Endometriosis.

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    1. So glad you stumbled upon it! Thanks for reading!

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  31. I had my hysterectomy 20 years ago. My doctor told my family I could never have told them his awful I felt. Thank you for approaching this subject. I have fibromyalgia as well. Joined a support group and many of the ladies have endo as well. Believe you can feel better. Surgery was the best thing for me. Hopefully you are all finding answers that are best for you as well!

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    1. Thank you so much for sharing! The last few months have shown major improvement for me, so I'm really hoping that I've finally found something that keeps the pain under control. Support groups have proven to be the absolute most helpful thing for me as well. Glad you have that same encouragement from a group for fibromyalgia! Best of luck!

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  32. This is so fantastic - I'm sad to hear some medical professionals are so unsympathetic. They of all people should know the human body better than that. Endometriosis reminds me a lot of lupus, in that it attacks whenever it wants, and there is no cure. I grew up, and continue to see my mother struggle with it. No one can control when there will be good days, or bad days. Stay strong, girl.

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    1. Thank you for reading! So exciting to have a future doctor learning the story from an insiders perspective. Thank you very much for your understanding and kind words. :)

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  33. Hi Kelle! I just found you on instagram and you write beautiful! I expend all my free times of the day reading your blogs. They make me smile, and some make me almost cry. I ,actually, have not had the courage to tell people around me that I have this condition. I feel ashamed, and at the back of my mind I don't want to accept it. For all that comes with it. Only my close family knows. As a wife of an awesome husband, we always get ask "are you pregnant? " ...."well you look pregnant! "..... "why you guys don't have kids?, it is selfish of you seek for success before kids"... the sad reality is that we have tried for a long long time... and it is just difficult SO difficult to make so many sacrifices and don't see the light. This might sound childish but sometimes I think that this will go away some how... but as a scientist I know that it is difficult. On the other hand I want to keep my hope up and think that some day I will be a mom, and all the pain was whorted. It is nice to meet you thought your blog and God bless you lots!!!!

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  34. Hi Kelle! I just found you on instagram and you write beautiful! I expend all my free times of the day reading your blogs. They make me smile, and some make me almost cry. I ,actually, have not had the courage to tell people around me that I have this condition. I feel ashamed, and at the back of my mind I don't want to accept it. For all that comes with it. Only my close family knows. As a wife of an awesome husband, we always get ask "are you pregnant? " ...."well you look pregnant! "..... "why you guys don't have kids?, it is selfish of you seek for success before kids"... the sad reality is that we have tried for a long long time... and it is just difficult SO difficult to make so many sacrifices and don't see the light. This might sound childish but sometimes I think that this will go away some how... but as a scientist I know that it is difficult. On the other hand I want to keep my hope up and think that some day I will be a mom, and all the pain was whorted. It is nice to meet you thought your blog and God bless you lots!!!!

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    1. It is so hard to write on my cellphone, lol... anyway I hope, it makes sense....

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    2. Wow, thank you so much! It is always so nice to connect with other endosisters and I'm so thankful that you stumbled upon my instagram and blog. I hope that one day you are no longer ashamed of your condition. You deserve to feel so proud of how much you have gone through and continue to go through, but I completely understand why you are held back from feeling that way. Everyone is different and your family and friends will hopefully understand one day that their comments are not helpful, they're hurtful. :( Your thoughts don't sound childish at all. You sound brave and strong and lovely. I hope you find health and happiness in spite of your struggles, my dear. Stay in touch!

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  35. That was spot-on. After struggling with endo for the past 10 years (I'm 22yrs old), I have heard every single one of those comments and have reacted the same way to them. I wish people were more aware. The majority of the people I hear it from are nurses in emerg. - not something you want to hear when your screaming in pain curled up in a ball begging for relief.

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    1. Exactly! We are the same age and have been struggling for about the same amount of time. I'm sure we could relate to each others stories on a huge level haha. I hope that in the future you only come into contact with doctors and nurses who are compassionate and understanding! That's the biggest thing I pray for any time I am on the way to the hospital. I will pray the same for you! Take care!

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  36. I've been taking birth control pills to help with my endo for 2 years now. I took a break in January cause my prescription was expired and had ended up not making an appointment until July. I got on the pill last Thursday. This month is the worst pain I've ever been in. I've taken the strongest meds I have, I've laid on the couch, smeared my belly and back with "lasting touch" and put a wet/cold washcloth covered ice pack on the worst spot. It's been 3 days of pain...with 1 hour relief today. I've been able to deal with the pain the past...but this month is excruciating. I'm fighting back tears of frustration and pain and I feel like a wimp - even though no one says I am....I just am not used to not being able to handle pain. I have a very high pain tolerance. I am so thankful I found this blog. I haven't told many people about my Endo.....so I haven't had to deal with too many people saying ignorant stuff. I was thankful for reading this, not because of your suggestions (although brilliant) but because I found someone who "gets it" - Even though we are not in the same room or even on the same content I feel like I have a comrade. Thank you thank you THANK YOU!

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    1. Ugh, man! You poor thing - I feel for you, girl. I really do. You know in your heart that you are absolutely not a wimp, you are stronger than you get credit for! I know what you mean about having a high pain tolerance and being thrown off when it hurts too much in spite of that. I really hope you are feeling better soon and I'm glad to be someone who "gets it" even if we haven't personally met. If you ever need to vent, you know where to find me! Take care, my friend. <3

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  37. My absolute favorite thing that people tell me is "You're being over dramatic. Every woman gets their period." Ironically, I get this from other women just as much as I do men. My boss has actually told me that menstrual cramps are not an excuse to keep calling off and if he didn't write me up for it, then it wouldn't be fair to my female coworkers. Unfortunately, I think unless you've seen how endometriosis affects someone's life first hand, you're always going to think its just a bad period. I remember going to the hospital one night, I was curled in a ball unable to walk because of pain. I had to have an ultrasound done to rule out cysts and the ultrasound technician was so rude. I told her I have endometriosis, and this was just to make sure there wasn't anything else going on. She said my pain was due to being constipated and when I started bawling my eyes out from the internal ultrasound, she said it couldn't be that bad. She could have been a little more sympathetic. Oh! I'm 22 and I was wondering does anyone else get the “Your periods will get better when you get older" thing?

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    1. I've been fired from jobs for having Endometriosis. I understand this. And as far as periods getting better when we get older..... I'm 36. It's no longer about periods now. It grew from being bad periods. It went on to being bad periods and bad ovulation. Excruciating pain every 2 weeks. And now, at 36, I'm bedridden. In excruciating pain every day. So bad that I'm nauseous, vomiting, dizzy, passing out, fatigued, etc. Every single day. And it scares me!!!! Especially vomiting every day. And it all scares my children too. They are 9 and 11. They don't get to go outside and play. They are stuck in the house taking care of their sickly mother. This disease only gets worse over the years and the whole family suffers. I've tried everything. Nothing has helped. And some things have made it worse. I've been robbed of most of my life. And my children are being robbed of their childhood. Bedridden, I cannot work. I have no insurance. I have no pain medications. I only get to suffer in the raw. It's hell; a living nightmare. I'm not living. I'm alive. I'm stuck in my bed just waiting for my time to die.

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  38. It runs in my family and I am so blessed that my doctor caught it early in my life to where we could start to work towards keeping it in a mild state. I'm still learning about the disease and almost passed out from anxiety when he was discussing it with me, as I just found out a week ago. I'm 21 and after reading much about the disease I know I am extremely lucky to not have to experience such pain and that it was discovered early. I'd love to learn how to raise awareness..

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  39. It runs in my family and I am so blessed that my doctor caught it early in my life to where we could start to work towards keeping it in a mild state. I'm still learning about the disease and almost passed out from anxiety when he was discussing it with me, as I just found out a week ago. I'm 21 and after reading much about the disease I know I am extremely lucky to not have to experience such pain and that it was discovered early. I'd love to learn how to raise awareness..

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  40. Thanks for posting this! Just had an operation last june due to endometriosis. I'm now on hormone therapy, just worried that i also have bowel endo, i was diagnosed with IBS before the endo happened.now i don't know if it's really IBS or it,s because of endo :(.

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  41. I agree with your pick of the worst thing to hear: "Yeah, I have bad cramps today too." That drives me crazy! However, the only women I have heard that from are ones who really think you are full of s***. One I have heard before that really gets me is the cancer one. Yeah, things could always be worse...& there is always going to be someone out there in the world that worse off than you. BUT, with that being said, if someone ever says that to me I want to be like "Hey, at least they can cure Cancer. & at least people care about Cancer." sounds messed up, but that is how I feel. I love how that doctor's quote explained it...I wish there were more ones like him out there! Thank you so much for your post...it means a lot to me as an Endo sufferer, & after posting it on my FB page I hope many of my friends & family take the time to read it & possibly get a better idea. You are awesome!!! (Plus, my stumbling upon this post was perfect timing, since I JUST had my 3rd lap done yesterday =D Stating strong!)

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  42. I hear a lot of the "I get bad cramps too", and lately I just find it hard to be nice to a response like that. Lately, I've had pain so bad that I'm ready to give myself a hysterectomy. I usually just say something like the pains are so bad that I have to brace myself against the wall to walk, that I'm hunched over in pain, I get dizzy and nauseous, and that my Mom sticks to my side like glue because I'm so pale, she thinks I'm going to pass out. Anyhoo, I'm glad that I've found your blog! I haven't been "officially" diagnosed with endo, because I get the "you're too young" schtick. Not to mention that when I talked to my gyno, she said cramps are normal and you have PCOS...then she sent me on my merry way. Now I'm looking for a new gyno lol. I value your input and thoughtful blogs, makes me feel like I at least "belong" somewhere. I look forward to more of your blogs! :) We're all strong beautiful women.

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  43. Great blog. Thank you for expressing the frustration we all feel. The one I hate is, "You should get out more. Get your mind off of it". Because its just sooo easy to forget about debilitating pain while you go paint the town instead!

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  44. I enjoyed this post! I am in the process of being diagnosed with endo, I will have lap on the 16th. I changed dr.s when my dr told me that "you might have endo., but I don't want to do surgery. Try Aleve."

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  45. I too have heard everyone of those, have been dismissed by dr.'s it took me 13 years to figure out what I had wrong and so I went into the gyn and said I believe I have endo and want a laparoscopy to confirm or deny it...the gyn did ultra sounds and actually said I don't think you have it because nothing shows up....but he would do the lap...it was so bad he closed me up and thought perhaps my appendix had burst due to the adhesions being so dense, so he told me I needed hysterectomy with ovaries removed to cure it...well, years of period "cramps" curling me up in fetal position even on heavy narcotics...I just wanted relief so I had the hysterectomy with bso... which put me into instant menopause and complete hormone hell...took years to figure out what form of hrt would help me not be a suicidal crazy woman and I woke with a patch on my tummy because of being so young the surgeon felt it in my best interest...but my body ate the estrogen so fast...the dr. actually thought I was not doing it right...so after 13 years of "painful periods" that was a bit better, but I still had pain and was having problems with bowel movements, but every dr. said can't be endo you had a hysterectomy...so 6 yrs later I had a endo specialist go in and I did in fact have endometriosis still growing and had moved up my ureter...my colon had hooked to the side of my body and once again...my organs had been glued together with adhesions. Last year I had another surgery for removal of adhesions and more endo, half my colon was removed and I had developed pelvic organ prolapse (entrocele, cystocele, rectocele, vaginal vault prolapse and rectal intussusception) I now have mesh holding my organs up and this all started because of "bad periods" and guess what...I always hear the "well you look great" lol...we with endo...our pain scale is much different then others...there 10 is our 2...endo is not going to kill us like cancer that is true, but it sure does make life hard...I never had kids or a career because of this disease...now I am trying to get the central nervous system to quit sending pain signals for normal pain that shut me down...so thank you for writing this to bring awareness to people that this is NOT just a BAD Period...it changes our lives completely! My life is still beautiful and I love my life...it has been wonderful despite the challenge of endometriosis...to all of you out there just getting diagnosed...stay away from the lupron type drugs...find a true specialist (many claim to be, but they are not) excision (cutting the endo out like cancer) is the only way to truly cure the disease...sometimes a hysterectomy is necessary, but make sure they tack your vagina up to prevent prolapse issues, keep your ovaries at least until you are 45 a true specialist can help you keep your ovaries which will prevent instant menopause at young ages which effects every thing! I wish I had found my specialist before that first surgery! Please take good care of you and to those who have not had endo or had an easily managed endo process count your blessings because those of us with the deeply infiltrated version our outside appearence may look fine but our insides are like raw ripped up bloody hamburger and the pain is excruciating! We are just trying to live a some what normal life and just because we look fine doesn't mean we don't go home and sit on heating pads and cry and when the words you say could be just the push we need to take our life...due to the pain and toxic existence we live! BE KIND...you never know what someone else is having to deal with...even if they look healthy!

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  46. Maybe it's because I live in California, but I've gotten "Have you tried yoga? It cured all my aches and pains."

    Hey all you yogis--I don't have aches and pains. I have a chronic debilitating illness. I'm sure yoga would be great for my secondary musculoskeletal pain, if only I could get a handle on the pesky severe pain that keeps me from being able to do things like drive a car or walk more than 30 feet or take a shower without needing a nap afterward.

    In the meantime...downward dog yourself.

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    1. LOL...I hear what you are saying about the chronic debilitating pain of endo, but I do the yoga...it has helped me with managing the emotional side of this disease...but it won't heal endometriosis...it was my life line through all this though and I would hate to think how much worse things would have been in my body if I had not practiced my yoga! BUT I do hear you and your frustration on people acting like Yoga is the cure all because it's not and they should walk in our shoes for a few months ;) I do alot of restorative yoga when the pain is too much for a stronger practice...LOL...people really don't get this disease though unless they have it! It's torture!

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    2. Liz, you made me smile tonight. Thank you! Sometimes it's hard to do anything but blink.blink at these people!

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  47. " It must be nice not having kids, Don't do it they cost so much and you never get time to yourself"
    Um, did I stutter on how much I have been spending on treatment, Time at the doctor or recovering from surgeries and what the main goal of all of this is? I am sorry and a bit disgusted at the fact that you can not appreciate what I would give my own life for.
    It's now to the point where my poor husband has to walk away before he starts yelling at people because he can see the pain in my eyes as I calmly dismiss people.

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  48. Chalin, I hear you. Good on you for your grace under fire. I can't believe my ears every time someone (and they always have kids on their own) has told me, "It's not the end of the world if you can't have kids". I get so angry and have started to snap back at those people. The emotional pain that goes along with infertility is terrible. Every time the end of my cycle comes and I'm not pregnant it's like an emotional punch in the gut. When the evidence of that "failure" is accompanied by an endo flare-up... that's emotional rock bottom. I had a miscarriage at five weeks last January (the only success we've had since we've been trying for a year and a half) and the emotional distress from that was worse than the pain, which seemed like an endo flare-up times twelve. Keep the faith and don't let those people's words take away your right of wanting to be a mother.

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  49. Spot on. I shared this on my Facebook wall. I could have written it ... but I didn't, and I thank you for writing it.

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  50. Thanks so much for what you are doing. I to am fighting and struggling with endo and this all to well sums up what I have to hear on a day to day basis. Im finally reaching a point after 3 years and my disease getting much worse where Im fighting more than struggling. I commend you and everything your doing to raise awareness. Peace and love to ya!

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  51. I know it's not the same but much of this is extremely relatable to me. Being a type 1 diabetic, i hear a lot of similar things from people and it's very difficult to explain to people how ill you're feeling when you look completely normal on the outside and the cancer one is an awful one for me, it actually really hurts when people say that one! Thanks for sharing, I learned some things about endo (:

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  52. I've also had "How long does it take to recover from?" as if it's an illness that goes away after a while. Even from close friends and family who still think it might just 'clear up' one day. While at my grandparents after my last lap my nan said to me "Don't worry, once you've recovered you can start thinking about kids again." (we'd been trying pre-diagnosis). It took all the strength I had to explain to her my tubes are blocked and kids aren't on the cards without medical intervention instead of just sobbing my heart out.

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  53. Thank you for posting this.

    Having suffered with Endo since my early 20's (I'm now 52) and finally being correctly diagnosed and treated with multiple laparoscopies along with fist fulls of heavy pain meds throughout my 30's and into my 40's.

    After years of hearing 'it's alright, dear, take these (a couple of advils) it'll make you feel better' - or - 'it's only period cramps. Some women get them worse than others, hang in there.' among other dismissive B.S. 'medical wisdom'.

    At the age of 35 I was finally diagnosed with severe Endometriosis. For years the only relief I was able to obtain was through an annual laparoscopic removal of scar tissue/adhesions, sometimes twice a year.

    Until the day came when multiple chocolate cysts simultaneously erupted and caused enough pain that I thought I would die from it. I was rushed by ambulance to emergency surgery that day, and woke with the knowledge that A) I will never have children, and B) I will never have endo pain again. Kind of a double edged sword.

    I had just had a complete hysterectomy and completely unprepared for what was to come next. I was thrown into full blown menopause within a couple of months of the surgery and that alone changed my life so drastically that I now look back and think it was more of a blessing than a curse.

    I say this because, like many, I was a drone. A 'successful' one, but none the less, still a drone. Waking day after day, putting on my mask (makeup) and uniform (biz. suit) and taking the business world by storm.

    After my surgery, menopause emerged as I mentioned, then a severe depression reared it's ugly head. It lasted for years. In fact, I still suffer from it, although I am no longer depressed to the point where death seemed like the only viable option.. which IT IS NOT. NOT NEVER.

    I'm telling a small part of my story to offer hope to others that may be suffering through what I've been through, and to tell you that, there is hope. There is an end to the misery. There is an end to the hopelessness and endless crying, and that deep profound sadness. It will end, it will take time, but it will eventually end.

    The blessing? Emerging on the other side of hell with a whole new understanding of who I am, what is 'really' important, and what really isn't.
    (That's a whole other story and I'm trying to keep it short.)

    Suffice it to say, Endometriosis is a debilitating disease that can rob young women of what most people take for granted. Even after all these years, it's alarming to know the amount of medically trained people (doctors, nurses etc) who still know nothing or very little about endometriosis.

    I eventually had to research my own diagnosis and bring it to my doc for testing, leading to the first of many laparoscopies.

    My hope is for other women to listen to their bodies, do their own research, and never fear to respectfully insist that your doctor do more than an ultra sound before they dismiss you as another 'girl on her period'.

    I believe the latest results show that over 5.5 women in N. America alone currently have some form of Endometriosis.




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  54. I had a total hysterectomy after being diagnosed with adenomyosis. When I try to tell people what my life had become in the year leading up to the surgery they all try to understand but I get a lot of the comments you listed here. Now my niece has endometriosis and I feel for her. People don't mean to be hurtful but they forget that they probably aren't the first person to say that to you and that you might be sick of hearing it. Also, a lot of what people say is more to slap you with kind words than actual kindness on their parts. For instance, I have had a number of people point out that during the year leading up to my surgery, at least I was a stay at home mom and didn't have to "miss work" on the days I couldn't get out of bed. I always love that one!

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  55. All of these are so true for me. I shared them with my family and it has really helped a lot with our relationship. I especially here the "At least you don't have cancer" one a lot! Thanks for sharing!

    Jessi
    http://oddsnendo.wordpress.com/

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  56. My best friend is an intelligent woman, but a little slow on the uptake of certain things. I like to remind her whenever she feels stupid that she 'does amazing things in her own time'
    She once tried to comfort me in saying that she had cramps too. I went absolutely insane in my head. 'YOU HAVE NO IDEA WHAT YOU'RE TALKING ABOUT!!!!'
    I quickly composed myself. I was right. She had no idea just how much pain I was in, so who was I to be angry with her over something she hadn't experienced for herself.

    I smiled and offered her a backrub. Being crampy sucked for her too.
    I try to remember always that some words are not though a lack of sympathy.

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  57. Most girls with endometriosis who decide to share their experiences, ... couchbedsforteens.blogspot.com

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  58. Thank you for sharing!

    This post made me feel better today (I'm curled up on the couch, heated magic bag to my stomach and feeling guilty for calling in sick to work).

    My battle with endo is getting to be much harder. My husband and I are trying to start a family; therefore, I cannot take any type of medication for the pain. Dr is talking about yet another surgey (this will be the 4th in 6 years). It's hard to remain optimistic.

    But your blog makes me feel better. I like hearing from other women who get what it's like to live with endometriosis.

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  59. Thank you for sharing, I would like to share this on my site www.heallhyhappycoeliac.com as I have Endo too and think this will help others. Any issues please let me know, thanks.

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  60. I have heard some of these same comments myself. My husband, James, gave me the greatest compliment of all. In July I had laparoscopic surgery to find out that I had severe endometriosis. One of my husbands good friends texted him and asked James how I was doing. James told him that I was very tough for dealing with everything that I had dealt with.

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  61. This is all so very true!! I was diagnosed at 14 and im now almost 30. Ive had several laperoscopies and even a hysterectomy leaving one ovary and yet it still came back! Now awaiting insurance approval for lupron yet again and another laperoscopy. Hearing people make comments like that after everything i have been through all because they cant see what is wrong is blood boiling!!! Knowing im not alone is comforting.

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  62. This is all so very true!! I was diagnosed at 14 and im now almost 30. Ive had several laperoscopies and even a hysterectomy leaving one ovary and yet it still came back! Now awaiting insurance approval for lupron yet again and another laperoscopy. Hearing people make comments like that after everything i have been through all because they cant see what is wrong is blood boiling!!! Knowing im not alone is comforting.

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  63. i have been following this blog for a while now and today i felt like i should share my story because i was a victim too. I had endometriosis for 18 years and i never thought i would ever get a cure due to the terrible symptoms i had and this made it impossible for me to get pregnant even after 12 years of marriage and it was a serious issue. I got to know about Dr. Aleta who treated someone and the person shared a story of how she got a cure and let her contact details, i contacted Dr. Aleta and she actually confirmed it and i decided to give a try too and use her herbal medicine that was how my burden ended completely. My son will be 2 this december and i am greatful to God and thankful to her for medicine too. If you have (Endometriosis, PCOS, Fibroid, Ovarian cyst, Ectopic Pregnancy or any infertility issues) just reach her on (aletedwin @ gmail. com) she has professional advise and a cure too.

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