Rarer case of endometriosis at 22 years old

I am one of the rarer cases where I have endometriosis and I am 23 years old(diagnosed when i was 22). They discovered it as I had surgery to remove a medium size cyst on my left ovary. They found the endometriosis on my right ovary and in my pelvis. After my surgery the doctors only offered me to go on the pill in which I didnt want to take artificial hormones. I had a a lot of questions about my fertility but they couldnt offer any testing on me because they said I'm too young unless I want to have a baby right now.

I always knew i suffered with my periods being very heavy and painful and now I know why. But now I'm pain most of the time with no help and at a lost don't know what to do. I don't want to have kids right now but I don't want to say never. Im scared by the time i'm ready it will be too late for me.

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  • I hope this doesn't sound rude or offhand but endo at 22 isn't that rare, and if your doc is making it out like it is or theres nothing they can do I would ask for a second opinion. Don't let them fob you off with your age that's ridiculous you deserve better than that.

  • Hi!

    I had my first laparoscopy + treatment for Endo when I was not long 20 - I know there are a lot of young people on here in the same situation... You are not alone ❀

    I was offered a Mirena insertion during my first Op, but I turned this down because of similar reasons to yourself and having previously been on the pill which didn't agree with me.... But I ended up regretting this decision when I had symptoms return with vengeance within 6 months + then had it fitted at my second Op! The coil is different to pills in the way and level of hormome which is released I believe (a lower dose), so where the pill didn't agree with me, the coil was fine!

    It isn't fair for them to refuse to let you know about fertility though 😢 but being on a contraceptive will help to keep the Endo at bay until you are ready for that choice.

    Everyone is different and tolerates different medication in different ways - I have read posts of people managing their Endo with diet, so there is always things to try ☺ My Endo nurse suggested cutting out dairy + then gluten for 4 weeks each to see if either of them aggravate my symptoms, and I was relieved to find cutting gluten back did help!

    Sorry for my long reply... But I sympathise with you... Best wishes that you can start to feel well soon πŸ’ž

  • Hey! I was diagnosed at 20 but have been dealing with endometriosis since I was 14.

    I am now 26 and only just found something that works for my pain but everyone is different.

    I went onto the pill and that didn't work for me, then had the mirena coil which worked for a year and then stopped even when having a new one put In. I have had multiple surgeries and finally my dr has started zoladex injections with honestly are a god send! My life has completely changed!

    I have probably had the worse years growing up and my parents even can't believe how happy I am.

    So honestly, there are so many options after your first lap and it's really not that rare to get endo like you have described or if it's the fact you are young.

    Endo happens to a lot of women and as tmc182 said, if your dr is telling you it's rare you need to ask to get refereed to a specialist who knows what he or she is dealing with :)

  • I have a very severe case of Endometriosis, having my second surgery 6 weeks ago being told that my case is worse than most women my Nurse has ever seen ... and I am only 19. Having endo young isnt rare! You are lucky to be diagnosed at your age, it takes some women years and years.

    I know you said you dont want to take artificial hormones, but I dont think any of us want to take the medication we do if we had a choice. We take it as we need to control our conditions.

    I hope this doesnt sound rude, but you need to realise that medication is the only thing to control endometriosis, it wont magically go away. Yes it might effect your fertility, but cross that bridge for when you DO want a baby.

    Us women who suffer, we dont get a choice, we do what is best for us. If thats taking pills, having injections, having surgery regularly, that is what we do!

    Sorry again if it is rude, but I hope this helps somehow. Be strong :)

  • Hi, I'm 22 and I have a server case Endo, you are not alone. There are so many young women with endometriosis.

    I would suggest that you speak to your doctor about hormone treatment, they are so many options and you could find one that works for you.

  • wow all these responses are amazing! yeah the doctor told me its really rare so maybe he over sold it, i was also left in the dark not the best and i went to a private hosptial aswell. hmmm maybe i will get a second opinion thank you everyone reading these comments is lovely, i dont know anyone who has any sort of condition like this i'm the only one of my age that i know

  • Yes he definitely did over sell it, as that is a HUGE lie. Like I said, I have a really severe case of it and I am 19. I have met girls even younger. My first 'specialist' wasnt exactly helpful either, he told me my only hope is to have a child. I would suggest a BSGE centre as they are specialized in Endometriosis and are AMAZING. I did, and honestly since I have had my first appointment, they have been so understanding and supportive. They gave me loads of leaflets with my options, talked it through with me often, they are great. My Nurse even talked to me when I am worried about something.

    Good luck and remember that we are all here for support :)

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