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It’s Kinda Ironic but We All Share This Same Emotion about Endometriosis

Hysterectomy

We are all over the world. Some of us are in India, Pakistan, Mexico, Iran, the US, Australia and yes, New Zealand. It is kinda sad that endometriosis is so wide spread and seems to cross all borders. It doesn’t seem to matter where we are, what part of the globe we reside in or what we do, we all share endometriosis and one particular emotion with it.

It is that feeling of being alone with endometriosis. We feel isolated, disconnected from others and like we have a dreadful secret we don’t quite know how to share with others. It is so personal and so private, so how can we possibly share it with others? This leaves us, hiding on some level. Hiding from the feeling that no one could possibly understand us or appreciate what we have been through. We become a little like hermits in this state, partly because of the fear of sudden onset of pain and inevitably having to somehow explain it to someone… a real dread! Partly though because we know that what we have is not the usual conditions. People can’t relate to it that easily. You say the words “endometriosis” and people inevitably respond with, “What is that?…What did you call it? Endom….what?” It is not like saying, I have diabetes or a heart condition. Somehow people are more unfamiliar with these conditions. They know about them and know how to respond to you when you tell them. With endometriosis, their reaction is seldom the one you feel like explaining. It is all so yucky to explain… we have cysts and clots in the wrong places—well you know…those womanly bits… em, em blush!

In most social circumstances we can almost avoid going there. People don’t need to know! It only really comes up if you start being fussy about your diet. I usually just say I am on a special diet… it really depends on who asks.

These days, I am much more open about it all. I actually embrace the questions and even more importantly the answers… kinda a given since I write this blog!

Since opening up, often to complete strangers, about endometriosis and delving into a number of the symptoms (hey, you never know if the girl you are sharing with might have it!) I have found a surprising response… it is usually quite positive. In many cases, women will open up and either share that they too have endometriosis or know someone that does. They are often quite sympathetic and understanding—not the response we expect really! Just don’t go trying this on men. You most probably will get more of the “endo what?”

It kinda got me thinking though… here we all are, in different parts of the world, living in our own little worlds, suffering with endo and getting through our daily routines with work, family, partners etc. and feeling all these emotions of being alone and the ironic thing is, we are all in this together. We inevitably share that same emotion! Ironic, don’t ya think?

It doesn’t matter how nasty you feel and how much pain you are in, there is someone out there who is sharing that same pain with you, somewhere in the world. It may not be in the same country or even on the same side of the world but someone is with you, in that moment in pain and somehow that is kinda comforting… don’t you think?

There are moments with this blog that I feel these strong desires to fly around to certain women that are suffering and just sit by their side and help them heal. I want to go to their aid and make it all go away! I want to console them, help them and ease the pain out of their poor battered bodies! It is hard being so far away and not being able to just pop over and be there for you all! New Zealand is just so far away!

The good news is that through this blog I can be there for you… give you hope and hopefully guide you to feel better. You can get better, you can get your life back and healing is within your reach… just keep trying and keep going and you will get there, I promise!

Hugs, Melissa x
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This Post Has 27 Comments

  1. Melissa

    Hi Amanda. I do agree with you but I guess it is hard enough sharing with us girls 🙂 I don’t think men can get endo ….as they don’t have a uterus or the cells that form endometriosis – but they could form in other parts of the body for men? not sure on this one.

  2. Amanda

    I know it’s hard to do, and I’m certainly not comfortable doing it in all situations, but more of us women affected by endometriosis need to tell men about it. We encourage sharing amongst women, but we need the other half of the world to get it, too! If 1 in 10 (or 1 in 20, or whatever the statistic is) women are affected, that makes 1 in 20 (or 40) humans. And anyway, men can have endo too, can’t they? Even if the incidence is far more rare.

  3. Melissa

    Hi Erica,
    At some point we need to trust in our own instincts and our own abilities to heal. Surgery is often an alleviator of pain for many of us and I guess pain can really stop us from seeing things clearly in life. You are right to feel confused as your body is telling you one thing but your specialist is telling you something else 🙂 Why don’t you explore some natural options out there and give yourself a deadline on them….maybe 6months. Explore Traditional Chinese Medicine doctors, Ayurvedic medicine, naturopathy, homeopathy – anything and see which ones appeal to you and which your body feel comfortable with. When you feel happy and like things are “right” then you know you have found the right one. Trust in those instincts – they are incredibly powerful 🙂 I am here for you sweetie, if you need any help at all 🙂 Melissa

  4. Melissa

    It is my pleasure! Thanks for reading 🙂

  5. Erica

    I apologize if I am not posting my question in the correct place. This site has provided me with such a wealth of info as well as much needed emotional support. I just now got the courage to post my question…I have an endometrioma and an appt scheduled to meet with a surgeon to see what my options are. I have never had a lap performed but was diagnosed via untrasound and family history. I’m hesitant to have the surgery if it is recommended bc I am fearful the cyst will just grow back and my endo will come back worse. I know my body can heal itself if given the right tools which is another reason I’m not too eager to have surgery. Any advice would be much appreciated as I’m feeling very confused and sad.

  6. Annabelle

    Thank you for always being there, for always being so supportive, for all the help 🙂
    HUGS!

  7. Melissa

    Thanks Lana. I hope the visit to the Naturopath goes well tomorrow/today 🙂 I always find they help you feel better, even if it is just for caring!
    I will do my best to do more video’s – I guess I just sometimes have bad hair days – ha ha….
    Hopefully one day everyone will appreciate just how sore endo is and we won’t need to say anymore than that 🙂

  8. Melissa

    Totally agree with that one V! Thanks for sharing! Hopefully we come up with a plan on how to make that happen!

  9. V

    I think we all need to do our part to let the world know about the impact this disease have in a woman’s life..is such a huge thing and so many people don’t even have a clue about what it is..if every other disease gets to have a spot and get all the help from every where else we should fight to have our spot..people need to know more..awareness so we can find a cure!!

  10. sarai

    you aren’t alone!

  11. lana

    Hi girls and Mel,

    very true about the if you could just touch someone and let them feel the pain, just for a minute, it would make everyone aware and compassionate. and it is very hard to actually explain in one sentence what it is, unlike when you say ‘cancer’ people can visualise exactly what that would look like and how it forms in the body.

    There needs to be much more awareness about Endometriosis globably. It seems unfair that it is a ‘female’ disorder that makes us feel different, men dont have to explain what happens in their reproductive areas and it is not just that but digestive and as someone else mentioned “rectal pain”…hard to imagen how it all comes together to someone else. But like you said, there is some comfort in knowing somebody else is sitting in their living room right now understanding. 🙂

    i have had a ‘bad’ period again this month, i was getting better in the last 3 months and when we get a painful one it makes us anxious/stressed. Also finding hard to find time and motivation to eat just vegetable meals but they do make me feel better. I will be seeing a naturopath tomorrow and hope she has some tips for me. Thanks again, for all the advice and inspiration.
    Also, i love your videos Mel, not in a creepy way, but it just makes me feel closer to what u are doing and the message you are putting out.

    Lana

  12. Melissa

    Hi – not sure of your name?
    Great to hear you have gone Raw! I hope you share again soon and tell us how you are doing 🙂 Looking forward to it!

  13. Melissa

    Hi Lara, I hope your doc appointment went okay and that someone gave you some deserved sympathy! You are not silly for explaining and the more we get it out there, the better. This condition needs to be taken seriously! Big hugs form NZ – Hope it is not too cold there yet 🙂

  14. Anonymous

    THANK YOU SO MUCH MELISSA, YOU HAVE BEEN WITH ME THROUGH MY JOURNEY WITH ENDO…AN I HAVE SO MUCH TO SHARE WITH YOU, I AM NOW 80% ON RAW AN 20% ON STEAMED VEGGIES, IT HAS BEEN GOOD SO FAR UNTIL THIS MONTH WHEN I HAD PAINFUL PERIOD AND I HAVE NOT FELT LIKE THIS IN A LONG TIME, BUT I LOOKED BEAK TO YOUR GRACIOUS EMAILS THAT YOU SHARE WITH US (THANK YOU)AND REALIZED ENDO PATIENTS HAVE IT ROUGH WHEN THE WEATHER CHANGES TO COLD AND I KEPT MY SELF WARM , ALTHOUGH I LOVE RAW FOOD , I HAD TO STAY ON HERBAL TEAS AND SOUPS AND IT INDEED HELPED EASE THE PAIN.
    I HAVE ALOT TO SHARE BUT AM AT A JOB NOW AND I WILL FILL YOU IN MY STRUGGLES WITH ENDO SOME TIME THIS WEEK
    TILL THEN, GOD BLESS

  15. Ciara

    Thank you, Melissa. This blog really filled my heart. 🙂

    Love, Ciara

  16. Lara

    Hi Melissa and all the world,
    I am blessed to have a very understanding and sympathetic husband who has done research and studied Endo so as to help me… I do find though that it is a very hard condition to deal with at work as people dont care so are unwilling to understand.
    I have a doc appointment tomorrow which I am dreading as I feel ‘guilty’ having to explain the pain, condition, emotions, etc., etc. OVER AND OVER AGAIN to the medical profession who tell me that it is basically just tough that I have it …. hope tomorrow goes well enough to get some understanding and then some direction …
    Thanks for your help and kind words Melissa – yes, many of us suffer but we do it with dignity and inner-strength, that is why we feel alone with it.
    Hugs from London
    xxx

  17. Melissa

    Thanks Liz! I love invading living rooms 🙂
    I think on some level we do need to be selfish and force time out from those stressful situations. Hopefully those around us love us enough to understand and appreciate that we are not making it up!
    Hugs back!

  18. Melissa

    Hi Crissi from Bardados – wow that sounds so wonderful right now! 🙂 It is such a private thing. after all we are talking about our womanly bits and it is kinda non lady like too 🙂
    It is amazing how many people we can find though, once we start looking!

  19. Crissi

    Greetings from Barbados,

    How much truer could you be on this one. When I was 1st diagnosed I was convinced I was the only person on the island with this condition. After being hospitalized, of course everyone took notice that something was wrong with me so my few lady friends and I got chatting we found out that we were not so quite alone. I was then made aware that some of my friends and family are also battling with this condition. Ironically one of the ladies in hospital with me also has endo and was overjoyed to find out that she was not the only alien species on our island with this horrible thing. What I must say is that I notice that even though we have the same condition some of us still feel so shut away and unable to speak openly about it (partly due to our cultural upbringing).
    Boy am I glad and ever thankful for the day I stumbled upon your blog. All I can say is keep up the good, encouraging, supportive work.

    God bless you!

    Crissi

  20. Melissa

    I know it is horrible to explain because it all sounds so minor when you put it like that! I sometimes we could touch someone for a minute and let them experience the pain, just for a minute and see how “minor” it feels then! It is soooo not in our heads and the more we can share it, the more people will hopefully appreciate the seriousness of it all! So not alone girl! Big hugs from New Zealand 🙂

  21. Melissa

    Thanks Kimmi! You are amazing too! We will meet one day! We just have to!
    It is my pleasure and thanks for your encouragement! It makes it all so worthwhile! Big cyber hugs!

  22. Melissa

    Hi Chanel – glad I managed to get you to comment on this one 🙂 I find in a way having endo makes us choose better partners, which is kinda a good thing out of it all – men who respect and understand us 🙂 Did you read this one? http://endoempowered.com/the-one-symptom-of-endometriosis-i-find-so-unfair-and-the-hardest-one-to-deal-with/
    Wow! You do certainly do heaps with your life! A model and personal trainer – you must look amazing 🙂 Heaps of pressure though, I am sure!
    We are special and we certainly have heaps more insight into many things others just don’t. Just remember, Endo will keep you “real”, unlike many of the other models you might meet in the industry 🙂

  23. Natalia

    Greetings from Slovakia 🙂 And thank you Melissa!

  24. Mary D

    Hi – I’ve been appreciating your posts lately. I hate the feeling (from friends, co-workers, even doctors) that I’m making it all up in my head and probably ought to just suck it up because what can you do anyway. The symptoms are so non-specific, come-and-go, that you can’t really explain to people who don’t know what it feels like to live with discomfort, and occasional real pain, in your mid section ALL THE TIME. How do you call in sick to work and say “I’m bloated, constipated, uncomfortable, aching, having rectal spasms and just generally feel bad.” Yeah, they’re not likely to get it. It is good to remember we’re not alone!

  25. Kim

    Melissa,

    YOU ARE AMAZING! I’m so glad I have you in my life (even if it’s cyberspace)! You really do bring me so much hope! You encourage me and inform me and you are willing to open yourself up to your own personal journey which, to me, is a God send! Even though we are across the globe we are connected so closely and it’s wonderful to have such a positive through all this negative. Thank you for all you do! I do wish we lived closer and maybe one day all of us could meet up. That would be so fun! But you’re right, we are all in this together no matter the distance between us. Thank you for what your do for us! Thank you for your encouragement! Thank you for your drive to continue to help all of us heal!

    Much love to you,

    Kim

  26. Chanel

    Hey Melissa!
    I always read your blogs, it puts a smile on my face.
    I’m from the UK.
    It is true though, we Endometriosis suffers, do feel alone.
    I definitely know I do.
    I’m certainly single and have been for just over two months. (due to my last boyfriend cheating on me after 8 months together).
    I dread getting into/being in a relationship because of my Endo. Even after trying to explain to men what it is, is hard enough. My Bestfriend Karl, is just getting his head around it (I was diagnosed two years ago and we’ve been bestfriends for six years).

    Everyday life doesn’t get any easier, even as a model!
    I’m a model, plus I’m at University twice a week studying to become a Personal Fitness Trainer. I tell you, I’m really not easy on myself.
    Especially with that I do!

    I hate having Endo, it’s such a selfish condition, yet us Endometriosis suffers can’t help it.

    Anyways, thank you for reading. I’m going to go take my 12 different tablets now and hope the pain goes away.
    Hope to hear back from you.
    -Chanel. (Kitty Valentine)

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