cursed!

endo is hereditary and there is no cure! you have had it since you were born but it doesnt trigger off until u start ur first period! i started when i was 11 i had extreme pain and was taken into hospital through out my teen years they thought i had kidney stones, the pain would come and go but it wasnt until i reached 31 they finally found endo! i have had pills, the coil, injections and laparoscopies now waiting for my thrid, i now have irritable bowel syndrome as it has spread and my tubes and ovaries are damaged! i have endo on the left side but get pain on the right too and when i told my nurse i was worried it would spread further she said that it was already there it always has been. i had the chance to have children when i was 23-25 but being young i thought it wasnt the time but now its not likely that i would ever have children. if i had known or if i had been treated earlier even without cure i would of had a better chance as im now 33 going for the third laparoscopy and one of my tubes have to be taken out. so far with all the stories i have heard other people my age have had theyre children but have had to have hysterectomies. do i wait and hope one day that i mite meet someone and mite have a child while in pain or do i have the hysterectomy and cut off all my chances? i understand that everybody is different but i wish that i had of known this earlier or if i could of been told realistically instead of sugar-coated words!

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  • I understand your going through difficult time,but if I were you I would not go for hysterectomy your still too young.I also had advanced stage 4 endo and they told Me both my tube is damaged.but I recently been treated with radical excission where they cut out all the area effected by endo but preserving the ovary and stuff,I also had dye test and both of my tube are absolutley fine.the only thing is there are not many consultant who is able to do radical excission as they need to be highly skilled and experience.

    If you google Mr ashwini trehan,in his website he advices on how to go about treating endo and what you can ask or request from your consultant. I hope things works out well for you.

  • A hysterectomy is a major decision, and if you feel this is the only option available to you maybe you should consider it, although it isnt necessarily a cure. Im 27 and considered hysterectomy many times, usually a DIY one when im lying on the bathroom floor, but like yourself I dont have children and am not in the position to be starting a family right now. kids is the only reason I havent even though Im not entirely sure whether Im fertile or not. I hope you come to the decision thats right for you, stay strong :-) x

  • Hi. I feel your pain, but agree with the others that hysterectomy is not the option for you yet. I am 32 and was finally diagnosed with endo last year after having this since I was 11. And although I had been trying with no success to be pregnant, and then told I pretty much had no chance, it happened and I'm now 4 months gone.

    I also have a relative who has endo and was diagnosed many years ago, and also has fibromyalgia. She basically had no chance of getting pregnant after having her eggs removed and ovaries nuked. and after 10 years of trying, 4 failed ivf, it has miraculously just happened on its own.

    Every person is different, but I just wanted to say that there is always hope.

    As for you having pain on the opposite side of your endo, that sounds a bit like me. I get my pain worst on my left near my ovary, but no endo there. But I have read that endo can damage the nerves and cause people to feel pain in places where there actually is no endo. i.e. Endo pain does not have to be localised to the areas where endo is found.

    Hysterectomy is not a cure for this disease, and not every person is pain free after having this procedure. I know 1 person who at a young age (under 35) decided to have this done, and has regretted it ever since and been in just as much pain and suffering (if not more) since then, and now medically not able to work.

    Look at all your options, see several doctors if necessary. But at the end of the day, this is your decision, a very big one, and one you have to be 110% sure of.

    I know from my own experience last year, that endo can leave one feeling every depressed and alone. but try and find people to talk over your options with (even on here), and talk with your doctor about pain management or try some alternative therapies.

    Good luck!

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