Endo or just dysmenorrhoea??

I feel like I'm going mad, I have been to so many doctors for so long, I'm 25, I get extremely painful periods, I can go 3 months between them, they are really heavy when I do get it, I get pelvic pains all of the time that build up significantly towards my period, as well as ibs, among several other symptoms I have told doctors about for a long, im just being told that it's just primary dysmenorrhoea. My doctor says because of my age it will be primary dysmenorrhoea and secondary dysmenorrhoea is usually when you are older, but on looking it up myself I've read that secondary dysmenorrhoea is caused by another problem such and endo amongst other things. I just wanted to get the opinions of people who have endo, does this sound similar? I've argued with my doctor to refer me to get a second opinion finally with the help of my partner, who has had to take the lady few days off work (he works away offshore so had to stay home) because I was in so much pain I couldn't drive back home myself, I've missed my atop on the train from uni because I can't move, I've missed an important exam because I'm home alone and can barely move to find painkillers and i'm being told this is just normal? :/ one doctor just rolled her eyes at me when I tried to describe the pain, I feel like I'm going mad, I can't get any doctor to take me seriously and i'm worried that when I get an appointment with this specialist (she just wrote someone that deals with pelvic pain, after asking to be referred to a gynaecologist) they might just act the same, am I being ridiculous for wanting to find out if there's more to this? Does simply having dysmenorrhoea include all these other symptoms too?

Sorry for the long post, I feel like I'm hitting my head off a brick wall, anyone with any advice or opinions would be so much appreciated item.

Thanks

3 Replies

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  • Hello

    I'm 25 and have had a ten year battle getting an endometriosis diagnosis. I knew for years something wasn't right and my doctor kept dismissing it. Finally I insisted I was referred and wouldn't leave the surgery until I was, saw a gynaecologist who confirmed something wasn't right. I've just had a laparoscopy which found endometriosis on my ovaries, pelvic wall, bladder and a problem with my womb.

    I know it feels like a battle but you just have to keep insisting to see someone - you know yourself when something isn't right and normal for your body. And once you have a diagnosis you can start dealing with it!

    Don't give up love - perhaps a different gp or a complaint letter to your docs would be worth it?? I think often when you are young they dismiss what you are saying easily and don't take it seriously and they really should.

    Keep smiling and chin up :)

  • It might be endo - but the fact that your periods are 3 months erratic would hint that perhaps there is PCOS at work here. It should certainly be checked out and if that is confirmed then that will impact your diet and determine what sort of action to take on the periods and getting them back under control.

    It is a different treatment for PCOS than for endo.

    You do need to have an ultrasound scan to rule out many other possible causes even if it cannot detect endo. That is arranged through your GP.

    Depending on the results of that - then request a referral to a gynaecologist to discuss further what if any surgery you might need.

    PCOs doesn't need surgery as a 1st line of treatment. Whereas endo would need surgery to confirm diagnosis and treat it. But there are a number of possible causes that need checked before you head down the surgery route.

    Do keep on at the Doctor, change doctors if you need to if your GP is not being supportive and is not taking this seriously and getting you tested and scanned. You might even need to move surgical practise to find someone to listen - and do something.

    It can take many years to finally get an endo diagnosis - so do keep pushing.

    A lot of that extra time is because we are far too quick to trust the GP knows what they are guessing at, and quite frankly most of them know diddly squiddly about ladies gynae problems - much less the impact that these problems have on our quality of life. So be brave, be bold and keep on at them till you get them to listen and take you seriously.

    They will fob you off if you let them and they can get away with it.

  • You can have endometriosis from a young age, don't let them fob you off with, you're to young. There are many teenagers who sadly have endo. I thought that I had it in my early 20s so I went to the dr numerous times, had a very unpleasant internal and of course nearly 20 years ago you didn't have the wealth of info that there is on the Internet now. 10 years later I am diagnosed because it got so bad I had to have an op.

    Believe in yourself and your own ability to know something isn't right. You need to find a specialist, pain like that isn't right. From what you are saying the ibs symptoms are exactly what I had. You may have a cyst or endo spots. I have incredibly bad cramps that take my breath away with pain, I'm sure it's what labour feels like.

    You are not imagining it and any health care provider that responds to you by rolling their eyes is not behaving in a professional manner, you can have no trust in that person as a care provider. This makes me cross on your behalf and every other woman myself included who have not had the right care of treatment in time. I think it's largely born out of ignorance as they just don't know what causes it properly. But there are treatments that can slow I'd down, make it less painful.

    You need an internal scan to make sure there is nothing large in there like a cyst that can be seen. The only way they can diagnose endo for sure is by giving you key hole surgery. I would only have this surgery if they plan to remove all endo at that time, if you have abdominal surgery even to just have a look you risk getting adhesions and it may be best to treat your situation with the pill, back to back to give you a break from the pain.

    Either way you need a referral to a good gynaecologist. You push on that, do not take no for an answer, go private if you have to.

    I hope things improve for you. X

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