Can endometriosis pain continue non stop for 11 weeks and can symptoms start mid to late 20's?

My gynaecologist said I can't have endo because it would have started in my teens. But since I came off hormone contraception 3 years ago, around my period I get the symptoms. Severe dragging, cramping, stabbing pains across the whole of my pelvis and lower back which causes my legs to go numb, fainting, vomitting. Pain opening bowels, bladder, during sex and made worse by stress and physical activity. All ultrasounds and tests have come back negative.

I've now got to wait 12 weeks for a second opinion but in the meantime I'm just desperate to have some idea of what's left me almost bedridden for so long.

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  • Hi I'm so sorry you're going through this. I'm 23 and the endo just started but they think with me it's only just been diagnosed as when I started my periods they were horrendous and I was put on the pill. They use the pill to manage the symptoms of endo on a lot of cases so they believe that's why mine was missed. My doctor was really good and never once said it couldn't be because of my age. It sounds like you ate similar to me as you came off contraception and the symptoms developed. It does sound like endo and it's awful. Is there no way to push to see someone sooner if it's that debilitating? They shouldn't leave you in that much pain. I hope you get some answers cause not knowing is awful to.

  • Yeah, its a twelve week wait because it's a second opinion and i've already seen one gynaecologist. But he was terrible.He said it was painful periods and wants me to try a Mirena coil for 3-6 months and only if the pain was still there after that time would he want to investigate further. One of my concerns is that the hormones will just cover up the symptoms and when I come off them I will have to go through all of this and the tests again.

    I'd rather have endo ruled out or confirmed now after going through this much and I've just heard of too many women having to fight with doctors for years to get a diagnosis.

  • Hi Millsy29- sorry to hear you're having a hard time and we all know too well what pain and discomfort you are experiencing.

    I was put on the pill since I started my periods due to how ill I was and now, after 30 years later of being on the pill my body is no longer able to tolerate it having a major breakout and I ended up in a 24 hour clinic having a lap D&C where my Stage 3 endo was discovered. My consultant told me that the pill had only "masked" my symptoms (even though it is one of the treatments available) and it had worked for me for all those years.

    You need to have a diagnosis in order to be treated.

    You might have to be brave and undergo a Lap D&C. Unfortunately scans and x-rays don't always show endo but at least then you can either rule it out or start treatment.

    Thinking of you - good luck

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