Possible endo?

[Snorri18]

Hi, I’m 19 and have suffered with horrendous period pain since i first started when I was 11. I’ve been to the doctors, what seems like 100’s of times, over the course of 4 years and haven’t really got anywhere. I had an ultrasound and they said I have cysts on my right ovary and a blocked tube but kinda ruled out endo due to my age. I then went to uni and transferred doctors and the investigations seem to have come to a stand still. Is it likely that I have endo or something similar as I have been dealing with endo symptoms for multiple years but doctors don’t seem to want to look for it.

Thanks for your help x

[Moon_maiden]

Have you been referred by your GP?

Fairly sure age isn’t an issue and you should see a specialist. Make notes of symptoms and when, etc., this will help.

Doctors can’t just tell if you have it or not. When I saw the consultant he was fairly sure, but did say can’t ultimately tell until surgery.

I hope you manage to talk to your GP soon

[Snorri18 in reply to Moon_maiden]

Thanks for replying!

I got referred to a gynaecologist where I had an ultrasound, they then found the cysts and blocked Fallopian tube. They’ve seemed reluctant to do any further investigations apart from a blood test to rule out ovarian cancer.

I’ve been on tranexamic acid and mefanamic acid for the last 3 years but that’s they only thing my GP has suggested

[Moon_maiden in reply to Snorri18]

Maybe see a better gynaecologist, or at least one that’s a bit more open minded. Ultrasound can see certain things, I was told it wouldn’t show endometriosis.

Have you looked at the NICE guidelines? Quite a useful guide to know what to expect.

[Bubble_by]

I was 19 when I first started experiencing endo symptoms too. Of course I didn't know what it was then and just pushed it under the carpet (bad idea cause it only got worse) and it took a good 5-6 years before anyone even listened to me.

It's rubbish when gynaecologists tell you 'you're too young for endo'. In fact my last one said it to me and I knew there and then I needed to find a new one. I did and and I was offered a laparoscopy first time around (which I took and they found mild endo in various places).

I think things often get lost in translation when you change doctors, and it may also depend on where you move to (i.e if you're from a small town and move to a city, it may take longer to be seen or get reffered). Obviously given the current situation it may be a bit tricky to see a doctor now, but perhaps when things have calmed down a bit, it may be an idea to give your new doctor a reminder and hopefully they can pick up the referral process.

I know it's crappy going from pillar to post, saying the same thing over and over again (believe me I've done it enough myself) but please keep persisting and you will get the treatment you deserve.

[Snorri18 in reply to Bubble_by]

It’s comforting to hear from someone that’s gone through a similar thing so thanks for replying!

I’m deffo going to persist with my new GP once everything has calmed down and hopefully get referred for a laparoscopy as the pain is getting progressively worse the longer I leave it.

If you don’t mind me asking, how long did it take from being offered a lap to actually having the procedure done?

[Bubble_by in reply to Snorri18]

Yes good idea. Mine was spreading to my ovaries before they caught it in time.

Well, I went private with mine (my family were kind enough to pay for it... I think they got fed up with my whingeing 😅) so it was about a month I think?

[Snorri18 in reply to Bubble_by]

I honestly may go privately as well as my family have said they’ll help out, it seems to be a lot quicker!

[Bubble_by in reply to Snorri18]

Ah that's nice of them - hope you find answers soon! 💕