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Endometriosis pain

Discussion in 'Health and wellbeing' started by tassiegirl, May 29, 2011.

  1. A friend recently told me that her sister, who suffers badly with endo pain likens it to the same as giving birth. As it you nearly want to pass out. The only benefit with birth being that you get a baby!

    Does any one else have something to compare this debilating agony too?
  2. A friend recently told me that her sister, who suffers badly with endo pain likens it to the same as giving birth. As it you nearly want to pass out. The only benefit with birth being that you get a baby!

    Does any one else have something to compare this debilating agony too?
  3. That sums it up - sometimes like being stabbed with a jagged glass bottle and even like you're being shot - it's awful.
    Any woman that doesn't suffer it should thank their lucky stars every day IMO.
  4. And then having the wound rubbed with gravel and having a too hot water bottle placed on the wound
  5. I used to pray that I would pass out so that I wouldn't have to feel the pain.
  6. I didn't have the stabbing pain but I constantly felt as if I had a huge weight in my stomach pushing down whilst being kicked and this was when I was on the pill. Goodness knows what it would have felt like without being treated with the hormones of the pill. I'm so happy that I had it lasered off but fear it returning.
    A friend of mine was absolutely riddled with endo and faced years of pain and many operations. At one point she only had a quarter of an ovary left and managed to fall pregnant. This is what scares me witless as we are seeking help with fertility and I have no idea what impact this has left on my ability to conceive.
    It's an awful condition that is often misunderstood.
  7. I had several operations, including the removal of part of my ovaries. I was told that I would be unable to have children. I went on to have 2, so please don't worry too much. Having children also seemed to alleviate the symptoms, and then I went on to have a very early menopause, which was great, in a way.

    It's an awful condition that is often misunderstood.
    I totally agree. The pain is excruciating and the condition so debilitating. I used to want to scream at people who used to say 'Oh, I have heavy periods and period pain too!. Normal period pains do not compare. At all.
    Woo, try not to worry [​IMG]
  8. I too have this awful disease
    After having each lap I would manage about four (five if lucky) of pain free living. Then out of nowhere it would all return. The pains - random sharp ones initially - the ones that felt like you were secerely bruised/had been kicked, Then there would be the onset of the most horrific pains you could ever imagine that literally felt like I was being split open and dying - accompanied by ridiculous temperatures and tiredness.
    Like many women I have been around the pain killers roundabout - and the hormones meds. Sadly due to being allergic to so many nothing worked and just made things worse! (Rare side effect but some of the treatments can do this!)
    Mirena's managed to slow things down - but not enough to give me my life back in entirety. Am now on zoladex - horrific side effects - but I actually seem to be tolerating it and can honestly say that the symptoms are finally abating to some degree, so there maybe light at the end of this tunnel for a little while atleast...
    As for children - Consultant has said it need not be impossible, but unlikely - but if I was going down that route would need to do it straight after this or a subsequent course on zoladex.
    Of course, it could transpire that the endo will have shrunk so significantly that I become a typical woman until the menopause?
  9. I am now in the injection induced menopause. The side effects for the first 10 weeks were awful - for me - but now I have less of the horrific side effects and endo symptoms (not cured lol). Don't miss out on the HRT or you will feel even worse!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
    Have you tried the lesser options first?
    It's expensive, I was told £150 a shot, so GP unlikely to want to let you have it - but if conso has recommended it they should give you the first couple of scripts for it...

    ATM I can say this is the only thing even with the side effects that has remotely touched the endo - short of being cut up more and more...
  10. I have suffered for many years with eno & pcos, but am finding the pain to be totally sporadic in recent months. Last week on a year 6 residential i had what i can only describe as a 'spasm' which was a new pain and nearly took me off of my feet. As other posters here have said, taking tablets relies heavily on precise timing, and i must have missed the window this time around as so far i have spent half term very uncomfortably trying to settle down! Fingers crossed it will soon settle, and i can get down to enjoying some of my holidays!!
  11. Thanks for this info, hope to start the injections next week, been put on Prostrap and each injection will last 3 months I think, will know more when I see gp, willing to give anything a try at this stage!
    What lesser options were you referring to by the way?
  12. Pill. Coil.
  13. If anyone is trying injections, have you given mirena at least a years try first? It took about 4 months to kick in bu it's mad a difference. Please discuss it with your gp/specialist as they told me injections were really one of the last option, short of a hysterectomy
  14. Do any of you lovely ladies suffer bladder problems with your endo? I had a uti recently but feel like the symptoms never really went away things like needing to go to the loo more frequently, a feeling of pressure around the bladder area and a burning pain after urination, I've sent in numerous samples and they always come back clear.
    The gynae consul said it may be coming from inflammation due to the endo but I thought he said there was no endo on the bladder when he did the lap. Just really confused, if it's not caused by endo I'd really love to know what is causing it.
  15. This sounds exactly like my mum, who although never officially having endo has had many problems, and had a hysterectomy 12 years ago. They left her with one ovary as HRT wasn't the desired route in the future. Over the last year she has been treated almost continually for water infections etc, but the samples never came back indicating there actually was an infection. After several trips to GP we went to see a specialist, who has CT scanned to observe ovary and kidneys. They have now found a growth on her remaining ovary which they believe to have been the cause of the 'infection' like pain etc. (We have specialist on Monday as they are now concerned it could be ovarian cancer - suddenly everything has been tested and organised within a week). Its a case of wait & see I guess. [​IMG]
    There is every chance bladder problems could be linked to the endo - I have had water infections before & have been told that endo & pcos both increase the likliehood of these happening. Each time though the sample has indicated an infection. If you keep getting clear results I would recommend asking for a scan etc - certainly better to be safe than sorry.
  16. Yes this is one of the syptoms that is the worst for me, as I find it very difficult to know whn I actually have an infection and when it is just the endo creating these symptoms - basically if it's the endo there will be no bacteria in the sample and it is a case of drinking lots and waiting for it to pass - the worst thing is to stop drinking as this creates more issues in my experience!
    Even if the lap showed no obvious endo on the bladder, it doesn't mean it's not there - but too small to be seen or that it hasn't now migrated there too....[​IMG] Sorry!
  17. Thanks for that YOI Teacher, I've done a lot of googling and I know you shouldn't but it seems bladder problems with endo are really uncommon or at least I couldn't find much evidence for it but when I think about it it does make sense.
    You mentioned that you drink loads and wait for it to pass, my symptoms started with a uti in Feb and they've been constant every day since then. To be honest I actually feel slightly better if I drink less than normal during the day but I know this isn't ideal as it encourages kidney stones and utis.
    I'm due to start prostrap injections this week so just praying they will get rid of the inflammation and hence the bladder symptoms as I actually find them harder to deal with than the pain. At least with the pain you can take painkillers but there's nothing that helps with the bladder symptoms or the urologist I've seen couldn't recommend anything either. I was really scared it might be interstitial cystitis as I've read loads about it and there's no cure but when the urologist did the camera test and looked inside my bladder it appeared normal so at least that's good!
    This thread has been really reassuring, thanks everyone, Tassiegirl, thanks for starting it!

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