Hi I am 26 years old and was diagnosed with endo back in November last year after having scans and a laproscopy. I was put on the pill when I was 16 as the pain used to be so bad and my periods used to be really heavy. After having been on the pill for 6 years I had to come off. Then I had the contraceptive injection. I was on it for a year and just did not get on with it. Since then my periods are much lighter, but the pain is still intense. I get pain in the tops of my hips, my ovary area and lower back even when not on my period. Because of my family history (my mum had it then had a hysterectomy, luckily after having had her children, and my aunt unfortunately could never have children she had to have a hysterectomy when she was quite young) when I had started to get pain again (after having come off any contraceptives) I was diagnosed pretty fast. When I had the Laproscopy they didn't remove anything, as the patches I have are small in size but there are loads of them. My uterus has also fused to part of my bowel. The thing I am terrified of is not being able to have children. Sorry for the long rambling message.
I had over 30 years of heavy and painful periods and, like you, aching or pain even when not on my period. When I was on the pill it did help though. I was diagnosed this year at the age of 47 with stage 4 Endo with EVERYTHING stuck together. Gynae said I have probably always had Endo! I have 3 children aged from 12, 19 and 23. All conceived naturally. Don't worry about infertility until you know for sure that there IS a problem! It is NOT a given that you will not be able to have children; your Mum had you after all.... : ) XXXXX
I wouldn't worry about fertility so much, even though I do. I have Endo on back of womb and in POD ( google it ) and my womb is retroflexed which means my cervix goes forward and my womb bends in an L shape backwards towards my spine. I've been told that just because of how my womb is I will struggle to get pregnant and have the most painful pregnancy and birth but its not stopping me, I will fight to get what I want, which is at least one baby. Unless you have other things going on then I wouldn't worry too much, Endo can cause infertility but mostly if its accompanied by something else. If you're worried about something else then its best to ask for an ultrasound inside and out, and MRI and ask for lap results in a letter, that should give you a lot of info on what they saw and that will help you understand your body a bit more. If you wanna chat or need any support, I'm free to talk any time, just pm me.
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