Anyone had the same experience or can give me some advice?

I had a laparascopy in September last year and they found mild endometriosis (even though my symptoms were horrible I was surprised it was mild!) and was okay for a couple of months but now I'm in agony again, it seems to be getting more intense every day and I don't know what to do? Anyone had the same experience and know what to do? Would be grateful for any help :) x

23 Replies

  • i haven't had your experience as i haven't had my lap yet but i do know from what other women say who have been diagnoses is that the amount of endo found inside does not always relate to how much pain is felt - some women have had lots of endo and not had any pain but it has been found through looking for something else, some women get lots of pain but only small patches of endo found, so don't think that just because they described it as mild endo that your pain is mild - go back to your gp, get the ball rolling again xxx

  • thanks very much for your reply :) it's good to know, i couldn't understand why i was in so much pain yet only had "mild" endo but i think i've read that too that symptoms and pain vary with each person and even if theres not much there can be very painful! i'm due to see my gp next week so i'll mention it, i just don't know what they can do for me cos i know it could just be scar tissue from the op but i also know it could be cysts or the endo itself could be back, but i'll see what she says. thanks so much - hope your lap goes okay xxx

  • Yes, I was told mine was 'moderate' after laproscopy, but there was nothing moderate about the pain! So you should take this seriously if it's causing serious pain.

    Other than laproscopy, did you have any treatment to stop the endometriosis or cysts coming back? I have the mirena coil, which so far is doing a good job of keeping the pain away, but which doesn't work for everyone. Definitely worth talking to your GP about the whole thing.

    Good luck.

  • I totally know what you mean Aquitaine, there has been nothing 'mild' about my pain even though the endo was mild! It's weird how it works isn't it? I was on the combined pill before (been on it for years) but having the monthly breaks so my GP said the best treatment is to tricycle it and just have a break every 3 months, she said that's the best treatment I could be on but it doesn't seem to be doing a good job of keeping the pain away! And no painkillers touch it, I used to take mefenamic acid which helped loads but when I take it now it makes the pain slightly less intense but does not go away altogether. It's really getting me down cos it's all the time now!

    I think you're right though I think it's time I discussed different options with my GP, I just want the pain to go away. Obviously I think other things like what if it's back and could be affecting my fertility but I guess that'll be dealt with when the time comes for me to try and conceive.

    Thanks for your answer, and glad the coil is doing a good job to keep your pain away! x

  • yes mine was mild/moderate as i have it on pouch of douglas and it is mild/moderate and i take mini pill and the one i am on is not helping as i still get period... i have tried the coil but it caused me a lot of damn pains and period all the time... i had it for 6 months and at least i have tried... when i am not having period i dont get much pain which is ok but i get intense tiredness and feeling worn out all the time as i work full time... i have my period now and it making me feel so tired and bowel movement all the time and that caused me having diarrhoea for a few days... did they say where you have endo?? hope you will put on a different painkillers... i have tried mefenamic acid and it didnt help me at all and i still get bad pains big time and i cannot take more than 4 days as i get bad ingestion... so go back to the GP and what you can take and i take ibuprofen in that red tablet and they are fabulous and they do reduce the pain a little and reduce the swelling... xxx

  • you're braver than me trying the coil haha i don't think i could even try, my friend got it and said it was so painful, she nearly passed out! suppose it's worth a shot eventually though cos you never know. i'd be worried about having a period all the time cos atm i'm happy just having one every three months so i wouldn't wanna have it all the time. well done you for working full time, i bet it's hard but it's good that you are. my period does that to me too i get exhausted and am in loadsa pain and don't stop going to the toilet it's horrible isn't it :( yeah my endo was on both my ovaries and i can't remember the name of the other place but it's like round my back or something :/ gonna try discuss with my GP other painkillers, i'm tempted to say send me for another lap but i don't wanna go through it again :/ will try those red ibuprofens thank you xxx

  • gosh me being brave blimey... hehe... yes it was painful but not trying to put you off but give it a shot and it it doesnt work then take it out... but most women works on them and some dont... it is exhausting aint it when having period and working full time... awww sorry to that you have endo on your ovaries and i am hoping not to have another lap as long it still the same i hope... i dont want it to spread... no problem about the red ibuprofens.. hang on i tell you what they are called "Nurofen Express" and it is a liquid capsules and they are fast to ease it down.. at the mo i am a little in pain and it terrible and make me so drained out... at the mo im bored lol... so i am gonna have a chill out evening with the dvd... hehe.. so hope it goes ok with you cheers xx

  • I have been told that I don't have a lot of endo but I have had 3 laparoscopies and the pain always comes back not long after the operations. I have read that you can only have a small amount of endo and be in as much or even more pain than somebody who has lots of endo. Also if they do a lap and miss some of the endo it's as bad as not removing any of it. I hate the fact that the consultants think I can't possibly be in as much pain as I'm making out as I don't have that much endo. I've been suffering with this debilitating disease for over 10 yrs now. I've hjust started GnRH injections with a view to having another assessment in a few months probably followed by yet another op. I'm hoping to have a hysterectomy as I'm running out of options now x

  • poor you having 3 laps :( and that's with mild endo? that's what worries me i don't think GP's realise how much pain you're actually in even when it's 'mild'. my doctor keeps saying my pains can't be endo cos it's so mild but like you said it doesn't matter it can still hurt so much! i can't believe you've had it for 10 years you poor thing, mine's only been about a year and a half and even that's enough for me! i hope the injections work out for you and you don't have to have another op. part of me just wants another lap to prove them wrong and say look it is back and this is why i'm in agony! but i doubt my GP will refer me for one and i don't wanna have too much surgery. i hope it doesn't come down to you having a hysterectomy but i know there's not much else on offer. i'm only 20 but if the pain keeps getting worse and coming back i would honestly think about that too even though i want kids more than anything! thanks for your answer, hope you are doing okay x

  • I am extremely lucky as I've been able to have two children so would welcome a hysterectomy as I don't want to have any more. You can only have the injections for up to 6mths at a time. I'll be 29 next month and can't bear the thought of putting up with this 'til I go through the menopause. My endo only took a couple of months to come back after each operation x

  • Hello

    I had a laproscopy in november 2011 i was told i have servere endo and the laproscopy did nothing the pain is back more than ever so i understand what your saying and going through.

  • so yours was around the same time as mine, it must not take long for it to come back! especially if it's severe like yours. are you getting anything done about it? hope you are okay x

  • i was told to just take cerazette for now and ive tried all different kinds of pain killers since the operation & i keep going to see the gyno.

    yes seems it comes back very fast!

  • After the lap she told me i had scar tissue and she couldn't remove it all because it was severe that she did the best she could so i guess that's how it came back more.

  • i think some of these doctors/consultants should spend a day in our shoes and see how mild they think it is after that - it almost like they are shrugging it off......'yes you have some mild endo, that's all' as if a lot of them don't already make us feel it's all in our heads xx

  • i totally agree with you there! it feels like i'm making it up but i know i'm not, they're not the ones who have to deal with the agony every day. i'm gonna be so persistent with my gp next time and tell her how bad it really is xxx

  • I tried this but they just give you more pain pills that don't do nothing. xx

  • I am in a similar situation - had 3 laps but each time they have said it is only mild/moderate (but it does keep coming back), but I was in pain every day. After my first lap they put me on zoladex with ad back therapy for 6 months. This didn't work for me but could for you so worth asking about it.

    Also I tricycle my pill - or in reality push it as long as I can without breaking, generally around 5 packs as my periods are still a nightmare. I was also given tranaxemic acid which I found worked better than mephanamic acid. Also just been prescribed buscopan to help stop cramping pains - but not really given this a go yet to say how it helps.

    Hope all goes well and thinks start to improve for you.

  • how long was it between each of your laps? was it quite soon or a reasonable amount of time? see my doctor says that cos it was mild it's doubtful it would return so quick or return at all but yours obviously has so it's clearly possible. what is zoladex? i'm gonna have to try explore some treatment options i think. at first i thought tricycling the pill was great but now the pains are back i don't think it's having an effect anymore.

    i'm sorry your periods are so bad, i think i'm quite lucky in a sense because my periods have always been fine which is why my gp was reluctant in the first place to say it was endo! the only bad period i had was the one after my lap and that was horrific. saying that i'm due a period next month so we'll see how that goes, i do get a lot of pain.

    will discuss things with my gp, thank you very much. hope you are coping x

  • I had a lap in 2006, 2007 and 2009 but with the first one all they did was a 'look see' instead of actually doing any treatment. I have to say my current view is I will do anything to avoid another lap as surgery can never be that good for you and my recovery period seems to get longer each time. I did also have to push for my second one as my doctor seem to think I was just a little girl who couldn't possibly know better than him....

    Zoladex is a GnRH agonist drug, zoladex is a brand name the drugs name is goserelin, it simulates your menopause which can help to clear up the endo and the ad back therapy is HRT. I know this can be really successful for some people so worth talking about it. They give you an injection once a month and then you take the HRT like you would the pill.

    The other thing I found that helped me was changes to diet, there is a book by Dian Shepperson Mills called Endometriosis A Key to Healing and Fertility through Nutrition. Some of the basic changes such as cutting out wheat helped me.

    I have found that it took a while but I did get mine to a manageable state but I do get flare ups every so often, fingers crossed and you will get it to a better state to!! Also remember you can always see a consultant or ask for second opinons x

  • Also meant to say I was 19 when diagnosed and it's really not the kind of thing you expect at that age and not something any of my friends could relate to x

  • I had my first lap when i was 21 ive had 2 more since and have recently been diagnosed with mild endo but im in agony all the time, ive had the zoladex injections they took some of the pain away for about a week each time i had one, im on tramadol, naproxsyn and a hormone pill, Nothing is working for me, oh ive also changed my diet cutting out wheat, gluten, dairy, red meat, coffee and alcahol as i bought the endo recipe book it does help with the changed diet as i know if i eat red meat or cheese i am in more intense pain i got lots of info on

    its worth a go its very hard to keep to, i also take vitamin D and iron tablets. all these things might help some people, ive got another app with the consultant fingers crossed as last time i saw him he just told me to have a baby my answer was you need to be able to have sex to have a baby and its too painful to do. :)

  • hey,

    I had my first lap when I was 18, after a very server period. Not fun working in a pub with cream jeans and having a bleed out lol. I was told I moderate with my first that was 11yrs ago, since then i have had a further 5 laps. My consultant joked about how they should have left a zip :-) I am currently on Tranexamic acid and was on mefenamic acid but had a reaction to that so on just diclofentic as mefenamic acid is an anti inflammatory. I had my last lapro in April this year and as usual there was nothing that they could see physically wrong with my womb, which is the main problem i am experiencing but now the endo is around my bowles and sticking together, They removed what they could and put solution around my bowels to help stop them sticking together.

    I have had 11yrs of tablets, injections and ops I am now demanding a hysterectomy as we have come to the end of the line and my periods are getting heavier and I as I have 2 small kids well 7 and 3yrs it is very difficult to move when I have bad episodes.

    Like you my endo came back quickly everytime.

    @ ruthbond, I cant believe your consultant said that! Thats rediculious as with some women it does help but with me it got worse with every pregnancy :-( . Hope everything goes well with your appointment xx

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