Pain that people just don't understand

On Monday I was floored by searing pain. It was like someone was scrapping out my insides with blades whilst sticking a hot poker in an unmentionable place. I don't get this pain very often, but it's the reason I've been in a&e twice and why I first went to the doctor a year and a half ago.

In light of my very recent endo diagnosis, I think I can at least say I know what causes that pain. But it seems to me that whenever I try and explain what happened on Monday to my female family members, they automatically presume it's period cramp. And it's not (unless period cramp had suddenly changed to feeling like Satan is dancing on your ovaries).

They don't even seem to be willing to accept that it's a different pain altogether. I feel like they think that endo is just a name for bad cramps and heavy periods.

I'm at my wits end. I'm fed up explaining. I'm fed up playing it down. I've had enough of arguing.

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  • It's difficult when others don't have any understanding of how much you are suffering, and sadly this is common with endo. Sometimes it's easier to learn to let go, and not care what others think etc. rather than waste energy trying to explain!

    This is an excellent article that you can share though, that explains the difference:

    Are you seeing an endo specialist for treatment?

  • Thank you for the link! Unfortunately not, I don't think they consider my endo severe enough. I've had a merina coil inserted to help with the pelvic pain (I actually think it's made things worse). I suppose they're waiting for it to settle and see how things go xx

  • What part of the UK are you in? If it's England you have the right to be referred to a specialist centre. You shouldn't have to suffer like that. Mirena can help with symptoms for some women, it sometimes takes a while to settle, but it can make things worse for others, so it's difficult to know!

  • I'm in Scotland, I know there's a BSGE clinic in Edinburgh but I feel they'll not be willing to refer me given the inconstancy of that specific pain x

  • I believe it's more difficult in Scotland unfortunately. Hopefully the Mirena will start to help, but in the meantime it's still worth trying to get a referral there. It's often useful to keep a symptom diary, and try and give examples of just how much things are affecting your quality of life.

    This book I previously posted about is excellent, and would be really useful to help you understand endo, and learn more about the best type of treatment.

  • It's easier for men to understand us than women, in my opinion. Most women tend to just presume It's just a "normal" usual pain that most woman had once or something. And as soon as conversation is about it they don't even try to listen your whole explanation. But I understand your pain. If I may ask why do you think you have it? I have crazy pain on my ovaries and the doctor found huge cysts, which she didn't even care.

  • I find this too actually, my boyfriend has been amazingly understanding and supportive. I had a laparoscopy just over a month ago and they found endo under my left ovary.......although I swear there's more of it. I have reoccurring ovarian cysts which are apparently normal. I also have ovarian pain too. X

  • I have endometriosis and I know exactly how you feel. I've had one doctor tell me that endometriosis was just something a female made up as an excuse for bad periods. If anything I have found that the few men that I've spoken with about the excruciating pain are far more understanding than the females. I've had to stop working due to my heavy bleeding and pain but when I was able to work, the women there were so cruel and flippant about it as in 'how bad could it possibly be?' I've also met women who have endometriosis who are so inconsiderate just because they didn't suffer the way I do so they immediately think that its an 'over reaction.' Not that you would want others to suffer but I must say I do find comfort knowing that I'm not 'the only one' who's in this position. Ever since I was diagnosed a 12yrs old I've been told that I'm faking the pain and that no one else with this cruel disease has to take strong painkillers and have even been labelled a 'faker' just to get meds. People don't understand that none of us enjoy having to take medication that wreaks havoc on your body. I hope that you do manage to find more understanding people to surround yourself with because it just makes the situation all the more stressful to worry about being judged

  • I'm so sorry that you were diagnosed so young! I suppose it better that they "caught it" earlier.......still no luck on the support front, but thanks though ❀️ Xx

  • I understand. Me too.

    My mum is a nurse and has listened to my surgeon describe my severe stage 4 deeply infiltrating endometriosis, and yet thinks im a sook and gets so mad at me when im too sick to work.

    Screw them.

  • can't expect people who haven't experienced endo to know what it's like. unfortunately society in general thinks it's just period pains and it's normal and u should tough it out. hell no. but do not let urself get frustrated w them. that frustration will just feed your inflamation and pain. your mind and body are connected. focus on what you do know is your truth and don't let others misunderstandings of that hinder your healing. πŸ’—

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