Frustration: a deep chronic sense or state of insecurity and dissatisfaction arising from unresolved problems or unfulfilled needs

If I had to choose one word to decribe endo it would be 'frustration'. For me there is no rhyme or reason to my endo. There is no discernable cause and effect, no food or drink that relates to my symptoms, no pattern whatsoever. The only thing that makes the pain worse is activity. I drive myself crazy every time I have a bad episode analyzing every aspect of my day, trying to work out a link. Hoping I'll find one simple thing I've overlooked that will explain everything and the problem will be solved.

Endo is so topsy turvy. A patient riddled with it can have no symptoms whereas a patient (like me) can have the rather missnamed 'superficial' endo and be in agony. Despite thousands of women suffering in this country it's stll taboo. For example, a friend I haven't seen in a while will say something like "How's your *nods towards my abdomen* these days?' It's like endo is the voldemort of diseases! shhh don't say it!!!

What other disease do you have to explain intimate details of your sex life to (usually) a balding middle-aged man? Explaining exactly when and where it hurts is hugely embarrassing but nonetheless essential for diagnosis!

So, add to that the unknown cause of endo, the difficulty diagnosing it, the roulette of treatment, and completely unpredictable outcomes, endo gets my vote for the top 10 most frustrating diseases.

12g codeine, some ibuprofen, 40g ami, cerezette, loratadine

5 Replies

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  • Endoem you def need to start your own blog! A couple of people on here have really inspired me and hit the nail on the head as to how i'm feeling.

    I feel like such a fraud on a endo support group when I don't even know if I have endo...I don't know anything any more!

    Like you I cannot stand the frustration I feel. If I just knew my triggers or could know exactly where the pain was coming from rather than just radiating all over my lower half.

    If I just knew tomorrow I was going to have a better day, todays tears wouldn't feel so helpless and desperate and if I just knew what I could do to make it stop I would...

    BUT am just soooo tired, exhausted, drained...

    My eyes and mouth are dry, my jaw aches where I keep clenching teeth where so tense from pain, my legs are so fed up of trying to go forward and are tingling and want me to sit, my skin is burnt from heat packs and tens machines which is sore and itches in places here will soon be cut, my pelvis is heavy and throbbing, with occasional sharp stabs and twinges, my hips feel like they are 80 and can't do this any more, my back is so angry and the knife like pain is heading to middle of my body and I feel like I'm sitting on something soooo uncomfortable, my head is so busy with thoughts, so mushy with anger and denial and so emotional it makes me mad...back to dry eyes that have run out of tears :( the meds make you feel sick or spaced out or give you side effects that make things worse and you constantly chase answers to make things ok...frustration you couldn't be more right!

    One thing that has helped me is a free pain tracker app on my mobile. I was useless at keeping diarys. The one I have tracks triggers, severity, duration, site of pain hich you drawer onto a body map, treatments, stool chart, changes in treatment and notes it even gives you graphs so you can see whats most common etc and you can downlload to pc so you can print and give to consultant...a worth while tool!

    Hope you find some answers soon xxx

  • Thanks for the tip about the ap. When I can afford a better phone I def be getting that ap. Part of the reason I started this blog was to keep track of everything as the meds make me so dozy I can barely remember what day it is!

    Don't feel like a fraud, anyone in pain deserves support.

    Hope you also get some answers soon xx

  • this was a really well written blog, spot on... thats all I can say x

  • Great blogs again guys!. Felt a little emotional reading them as it's so true to my life, our life!I'm not very good at expressing myself through written word,.so I find it refreshing to find others who feel as I do and can express themselves. High five the blogs :-) xx

    Dee xx

  • You made me laugh so much at the Endo/Elmo thing. I now have a picture in my head of being at a party and saying '..and this is my frined Endo. She's from Peurto Rico'. If I had a choice I'd re-name it 'Horrifically painful life changing disease' but I guess that's a bit of a mouthful :-)

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