Extreme period pains - anyone else

I just wondered if other people suffer very extreme and debilitating period pains? No idea if it's anything to do with Lupus, but prior to getting Lupus periods were barely noticeable, and since getting it they are extraordinarily painful, to the point where it's impossible to function for several hours (unless lying on the sofa crying counts as functioning).

Is this a change that's happened to anyone else?

8 Replies

  • Hi yakamalayo

    So sorry to read of your period pain problems. Lupus can make them worse as it's linked to hormones!. My Consultant told me that my Lupus treatment could be increased at this time to help symptoms. Can you ask your GP or Consultant about it as it's awful to suffer like you are?. Hope that's helped?. X

  • This sort of thing is dreadful, even ghastly...partly cause you have to go through it every few weeks...I did suffer & weep my way through this all my life until the incredible relief of menopause (but then my sjogrens got worse so a new set of gyn probs became my new ongoing routine dreadfuls). I cannot in any way minimise how extremely debilitating & distressing my monthly symptoms were (the muscle spasms were sheer agony, and along with them came migraine, nausea, diarrhoea & a degree of feever)...and I'm famous for toughing out the most severe of chronic spine pain syndromes amongst other forms of chronic pain

    Perhaps some part of my story can be useful

    Of course there can be a number of causes for extreme period pain syndrome. My lupus was infant onset, and my version of this took a few years to rev up to its most severe and consistent intensity in my mid 20s (as a younger woman I'd had amenorrhea for several years, so no periods to pain me). At that point I'd moved to the UK where my lupus diagnosis was lost because my mother kept it secret. But what we did know was that I'm a DES baby with reproductive system birth defects. So I assumed my period trauma was due to that. Now we know it was more likely to be due to endometriosis, which DES daughters are prone to. (DES is the notorious artificial oestrogen known as the silent thalidomide)

    The GOOD NEWS is that when my period nightmares had become consistently dreadful regardless of lifestyle management, I had a hero GP who prescribed the NSAID mefenamic acid 500mg (brand name Ponstan Forte) which worked like MAGIC so long as I took it the minute I felt the vvvvv first slight signs of my period pain syndrome. Even on mefenamic, my periods were tough to tolerate, but at least I could more or less function at home & at work. I soon realised that mefenamic also helped me control my migraines too when they started up between periods...so this wonderful prescription med has been a lifesaver and is THE ONLY NSAID that has been capable of helping me at all....over the decades I've tried most OTCs & been prescribed panty that were totally useless. Now I know mefenamic is v effective in treating endometriosis. And following my SLE re-diagnosis 4 years ago, my Drs have said it's v likely my migraines are partly due to my version of lupus. So perhaps my period pain syndrome was too...

    I hope you & your Drs figure out the dynamic causing this extreme pain promptly. Am vvvvv much feeling for you...and will read the replies that are sure to follow...misty's reply is vvvvv interesting (oh how I'm wondering now whether treatment for my lupus might've helped me all those years with my version of debilitating period pain...certainly they've reduced the number of migraines I get...). Sorry for going on & on about this subject...it just means so much to me

    Hope you'll let us know how you get on. XO

    PS these days the mefenamic info leaflet says SLE patients must take it with extreme caution....so my Drs have me take oesomprazole when I'm taking mefenamic

  • I get strong pain during my period and it feels like I'm in labour.. Truely unbearable.. I haven't asked the doctors but thinking of asking the doctors what can be done with this pain..hope you get some solution.

  • Could this be endometriosis?

  • Thanks to everyone who has replied. Will try to find a Gyny (fed up of the whole long drawn out GP process) and double check for endometriosis. Will also ask the lovely Lupus nurse in Birmingham.

    Any more answers/comments from others who've had similar experiences would be of great interest.

  • Hi yes I was the same could not function when I had my period felt like I was in labour. I had a procedure called an ablation which solved my problems, but this is only good if you have finished having or not wanting children hope things get better.

  • Hi, yajamalayo. My empathy to you. Endometriosis is comorbid with AI disease/syndromes.

    it came on second after allergies, followed by fibro, CFS, and on and on. I ate codeine/aspirin like candy. Please do see a gyny, a kind one. I had to give up on childbearing. Don't let it happen! Wishing you the best, molly

  • The irony. I read this and then ended up in A&E the following day having spent the night in excrutiating pain. I always have quite bad cramps but I can deal with them but this was something else and the paracetemol was doing nothing for me. I do have cysts on my ovaries and the doctor thought that it was probably just that playing up. She sent me off with strong cocodamol. I usually hate anything with codeine but I was so glad of these and the few hours of oblivion that ensued. Hoping that next month will be kinder. :-/

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