and I'm an invisible chronic illness. I am now velcroed to you for life. Others around you can't see me or hear me, but your body feels me. I can attack you anywhere and any way I please. I can cause severe pain or, if I'm in a good mood, I can just cause you digestive problems and fatigue.
Remember when you and Energy ran around together and had fun? I took Energy from you, and gave you Exhaustion. Try to have fun now! I also took Good Sleep from you and, in its place, gave you Brain Fog. I can make you tremble internally or make you feel cold or hot when everyone else feels normal. I can make you feel anxious or depressed, and I can make you catch every cold and sniffle that comes around. If you have something planned, or are looking forward to a great day, I can take that away, too.
I hear you're going to see a doctor who can get rid of me. I'm rolling on the floor, laughing. Just try. You will have to go to many, many doctors until you find one who can help you effectively. You will be put on pain pills, sleeping pills, energy pills, hormones, told you are suffering from anxiety or depression, massaged, told if you just sleep and exercise properly I will go away, told to think positively, poked, prodded, and MOST OF ALL, not taken as seriously as you feel when you cry to the doctor how debilitating life is every day.
Your family, friends and coworkers will all listen to you until they just get tired of hearing about how I make you feel. Some of them will say things like "Oh, you are just having a bad day" or "Well, remember, you can't do the things you used to do 20 YEARS ago", not hearing that you said 20 MONTHS ago. Some will just start talking behind your back, while you slowly feel that you are losing your dignity trying to make them understand, especially when you are in the middle of a conversation with a "normal" person, and can't remember what you were going to say next!
In closing, (I was hoping that I kept this part a secret but I guess you already found out). . . the ONLY place you will get any support and understanding in dealing with me is with Other People With Endometriosis."
AUTHOR UNKNOWN
Written by
Amb43
To view profiles and participate in discussions please or .
Don't forget if your really really lucky endo robs you of the chance to have a very very longed for baby! So on the days you do feel well enough to be with people you catch sight if a happy mother holding her baby, pushing her 2yr old on the swing tying her child shoe lace running after a wondering toddler and then to really kick you when your down (because you haven't suffered enough obviously) you see someone with 5 kids telling them she wishes she ever had them calling them desgusting names telling them if they don't stop dragging their feet she's going to batter them all the while pushing a small child (not strapped in) in a filthy pushchair with junk food smeared across its mouth!
Don't apologise for your feelings. You're amongst understanding people now. I thank you for your comment about children as its been impossible for me to open up that topic for fear of endless tears and despair.
I'm in the same boat as you, but can't afford to think about it.
We need a national society to lobby the government and get this disease recognised for what it is.
Think I will print this off and give it to my consultant, he told me endo doesn't cause fatigue, it was down to me still getting over my op which I had 7 weeks ago to remove my cyst, ovary and tube! Why can't they just listen to us instead of fobbing us off! X
Love this piece, Endo often feels like something foreign inside of you and this is perfect!
The loss of control is the most unbearable. Having something inside you that is controlling your life. Regaining control over it is part of winning the battle.
Very well written, thank you. Like alot of the other comments I shall be printing this to remind those around me when I am in a foul mood, upset for no reason other than being fed up with myself and general peeved off that I just cant help it.
Actually it's suitable for the people only beginning the journey but I find it a bit of an understatement, it doesn't capture the complexities that CAN complicate your life along with it, like the possibility of being faced with menopause because you had to sacrifice your ovaries and not being given HRT's to help you deal with that because that would only defeat the purpose, and so now you get to look at other diseases like osteoarthritis. And let's not forget all the other gifts endometriosis brings to the party, like IBS. It implies it with the digestive problems mention, but it doesn't take you on the trip of getting to the bottom of all the other diagnosis' you will encounter on your quest to find the answer to all your symptoms. All the fears of not knowing and all the misdiagnosis' that you will receive. And just never knowing but somehow still anticipating where it could lead. All the medications that you try and risk jeopardizing what little health you feel you have left, that don't slay the dragon anyway. It doesn't capture the intensity of jabbing, excruciating, relentless pain that historically is described as period cramps<hahahahaha. The defeatism of your next encounter with a medical professional who has no concept of what this is doing to you emotionally, physically, mentally. But you must endure it because you cannot demonstrate to them what you are experiencing. And to complain is futile. How you may be faced with conflict with your subordinates or superiors because you can't carry your weight like you did before. How you may infact have to give up your career because the stress feeds your hormones which feed your sites of this horrible disease. How it may take your marriage, because eventually don't we all tire of even listening to ourselves complain. And your sex life well the two go hand in hand. You begin to question your partners fidelity, in the back of your mind and it poisons your happiness. How it may rob your dreams of ever having children, and all the weight that goes along with that in a relationship. Acquaintances who unknowingly make jabs like "you look pregnant are you expecting?" And thus eventually where will you find yourself once you reach the golden age once you eliminate all the people in your life that don't understand!
Brilliant. I think this would help all those people bored with hearing about it to just understand the basics and to see why this is what we think about most of the time! Thank you x
Could not have said that any better! Just read it to my boyfriend and he actually looked pretty upset that he didn't realise the daily struggles I go through. So glad I joined this forum x
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Endometriosis?
Personal Independence Payments Appeal for Endometriosis
Endometriosis diagnosis (without being told) 
Does endometriosis comes back???
