Endo Pain.... It hurts soooo bad!!!

Discussion in 'Long Term Trying To Conceive' started by purechaos109, Jan 28, 2011.

  1. purechaos109

    purechaos109 Mom to a Perfect Pair

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    I don't know who to talk to about this! None of my friends or family understand the pain I am in except for my mom and I think even she has forgot how painful it can be! My GP found a huge build up of Endo gunk on both sides of my uterus and a endo cyst on both ovaries! The pain has been getting worse for the last 2 months and no one gets it! I'm in so much pain 85-90% of the time that it hurts to stand for prolonged periods of time, it hurts to sit, it hurts in general! I'm sick of being in pain but I have to wait for my referral to go through so I can go see a specialist so that I can go get surgery (my GP can't refer me for surgery it has to be done by an OB)! I wish this would get over with! I'm sick of taking pain killers! I'm on CD 10 Af stopped by CD4 this month (I usually have 5-7 day cycles) all in all its been a weird cycle down to the massive amount of CM the few days prior to AF and a mucus plug looking thing in the cm twice!!

    Sorry to rant and ramble!! Does anyone have any suggestions on how to cope with the pain? I'm sick of taking the Vicodin I don't like that I've been taking them for the last 10 days straight (1-3 a day)! Please I'm begging you can you please give me some kind of trick that will help? :sad2:

    Thanks for reading!!
     
  2. Monsterpops

    Monsterpops Well-Known Member

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    Hey hon - I feel your pain, whilst i dont have endo anymore I used to and had a 17kg cyst removed, which had strangled my right fallopian tube! I do however, still suffer with extreme period pain that literally stops me from moving - its so bad now its similar to the pain i suffered with my ectopic :-(
    The only thing i can recommed - other than strong drugs is the use of heat and also acupuncture. I amcurrenlty having acupuncture to prepare for ivf but my acupuncturist has done amazing things to relieve the pain i suffer - she applies heat aswell - i dont know how much this will soothe a constant pain - but i would, if i were you, just keep reiterating the agony you are in too your doctor. I even went to A&E a few times, with endo and afterwards due to horrific pain.

    Hope this is of some help to you x
     
  3. raf-wife

    raf-wife Well-Known Member

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    hi i dont know what country your in but in the uk we have feminax specifically for period pain and i have found it fantastic i sometimes get such intense pain i feel like im going to faint and i start vomiting its awful, that is the only medicine ive found that works for me, i am also doing accupunture x
     
  4. purechaos109

    purechaos109 Mom to a Perfect Pair

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    Monsterpops wow that's insane!! I've thought of going to an acupuncturist but unfortunately I live in a super small town (less than 5k people) and there isn't one here! Worst part about it is a have a dr referral (which means insurance would totally cover it) and I can't even use it! :( I haven't tried heat yet I need to get a good heating pad the town I live in wants to charge like 40 USD for a crappy heating pad! Maybe I should look into ordering one online!

    raf-wife Im in the US I've never heard of feminax! We have Midol here but it does NOTHING at all for my pain. It never has. Not even as a teenager!!

    I so wish I could try acupuncture!! Maybe I can try to get an appt when I go to the city next! But from what I've heard it is a reoccurring thing that only helps if you keep going! :'(

    Thanks you guys! Today the pain is better but I've tried to stay down most of the day! I got up about an hr ago to make dinner and now the pain is coming back! :( This soo sucks!!
     
  5. roseymia

    roseymia Member

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    Hi, I totally understand. I have Stage 3 endo.
    Things I've heard/read/experienced to help are heat (pads, tens machine, warm baths, hot water bottle) reduce your intake of wheat, caffeine, alcohol and sugar, try acupuncture/reiki (I personally felt reiki worked more for me) keep moving and exercising.
    Feminax is an anti-inflammatory which contains ibuprofen type meds and anti-inflammatories are supposed to reduce the pain. I personally can't take them so stick to codeine mainly.
    Good luck x
     
  6. purechaos109

    purechaos109 Mom to a Perfect Pair

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    Thank you!! I just ordered a heating pad! I don't think I've seen a Hot Water Bottle since I was 5 lol I wouldn't even know how to use one lol! On the average day I really don't eat that much wheat, I have cut back from a soda every day to one every 2-3 days and sometimes I'll go over a week without having one, I really don't drink at all, and Sugar is my huge downfall But I have been trying not to do it so much!

    My biggest issue is the Exercising and moving part! I have Fibromylgia and ya its recommended for that too but in order to get to a level where I can exercise normally if at all I have to quit ttc for a few months and go on a whole new set of meds that is suppose to help with my energy level and the pain! :(

    I wish this would all just go away! I hate hurting!

    Thank you guys for giving such great advice!!
     
  7. raf-wife

    raf-wife Well-Known Member

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    you could order some feminax online just to try, for me its a wonder drug i was doubled over yesterday with a hot water bottle after having af induced with provera and had none left so had to take paracetamol it did nothing at all to help so dh went to the chemist for me and within 15 min i went from agony to feeling perfectly fine it is ibuprofen but also has something else in it too, standard ibuprofen doesnt work for me x
     
  8. purechaos109

    purechaos109 Mom to a Perfect Pair

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    My body has issues with Ibuprofen :( When I take it I get sick!
     
  9. roseymia

    roseymia Member

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    purechaos - I'm the same. Anything ibuprofen based makes me sick, cause I have problems with too much stomach acid. I stick to codeine and only take on a full stomach x
     
  10. purechaos109

    purechaos109 Mom to a Perfect Pair

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    Ya I don't know why I can't take it I just have never really been able to!

    On the bright side it seems to be a lot better today! IDK whats changed but if this is any indication of how long I'm gonna be in pain after each period I'm scared! :( I do have vicodin and that helps some and I ordered a huge heating pad maybe between the 2 I can get it under control!
     
  11. Flake-y

    Flake-y Proud mama & pregnant!

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    Hi there, I don't have endo but I do get really bad period pains, I usually take paracetamol & ibuprofen together but it doesn't help much. I've also tried voltarol & co-codamol together but still no luck! And I've tried Feminax with no luck either!

    I've given up on painkillers but I've found that doing pilates when I've got bad cramp actually helps! Not mild exercise though, it has to be serious muscle stretching, my theory is that if I'm getting mucsle-stretching pain, it cancels out the period pain, & I'd rather have the muscle pain cause it's not as horrible!

    It seems to work though, although I was up in the middle of the night last night exercising so it's not always practical!!!lol
     
  12. cottonlily

    cottonlily Well-Known Member

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    I've been "lucky" enough that most times I have what I call endo flares they've been brought on by something at home - sex, going potty, heavy cleaning or house work. Rarely does it hurt at work or in public and it's not a constant 24/7 pain. However, when it did happen...it was pain like I'd never felt. Like make you nauseous and faint pain. Lying absolutely still - not even breathing deep - heat and pain meds help. It was bad enough that I had to take muscle relaxers.

    So I definitely know what you're going through. It's very real and not something to just dismiss. But I've found that constant complaining made it less important or significant to those around. I guess they felt that if I was really hurting that badly I'd be in the hospital or something so maybe they thought I was overreacting.
     
  13. purechaos109

    purechaos109 Mom to a Perfect Pair

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    I have had issues making people aware of what it is but luckily once the dr said I should get the surgery to remove it and wants to refer me to a specialist DH started treating it like it was real and I wasn't lying! He now is on the band wagon telling me to take it easy and take meds when I'm in pain! I try to only take them when I have to but some times it is quite a few days in a row and it gets old!!

    My DH's family doesn't really seem to get it either they are pressing me about helping with DH's grandma and taking on some responsibility for her care and I'm worried about if I get a flare up on one of those days! I was over there for 3 hrs today visiting and by the time I left I was in a lot of pain!!
     
  14. alocin55

    alocin55 Active Member

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    Hi, i have severe endo too and definitely know and understand what you're talking about. I have just had a scan and the docs said i also have endo cysts. They treated me with injections in my stomach which actually stopped my cycle and believe me it is like having a new life. No pain for the last 3 months and just waiting for my cycle to begin again. Unfortunately they haven't reduced the cysts but they must have done something!
     

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