Endometriosis UK
34,813 members • 31,034 posts

Needing a diagnosis, almost certain I have it!😞

Hi everyone, I’m knew to this but have been reading everyone’s posts and getting advice for the last 12 months, so thanks😊

I’m 25 and I’m almost convinced I have endometriosis, since my first period I have what can only be described as crippling period pain, my whole body is racked with pain so bad that I can’t stay still and lose control of my bowels. I’ve been back and fourth to the doctors with my pains and been told to try different pain killers but after a while they all seem to stop working, I have not yet actually been tested for endo but I’ve read so many of your stories and I have the majority of symptoms I’ve brought it up in conversation with my doctors but they don’t want to send me for any tests it’s so frustrating! Anyway I got my letter about going for my first smear test and was wondering will any sign of endometriosis show up on this? And if not what can I do to try and get a diagnosis I’m really worried it could be serious and i am in a lot of pain, even when I’m not on my period I feel bloated and get shooting pelvic pain.. id love any type of advice thank you 💖

3 Replies
oldest • newest

Hey, I’m only young (18) so I’m nowhere near as knowledgeable as any of the other guys on here but my story with my endo diagnosis was horrendous..

I started to get the pain a month after I started my period (14 I was quite late) back and fourth from hospital, just period pains they said, i pushed and pushed for the doctors to send me to a specialist got nowhere for 12months, my periods were abnormal I would physically pass out from the pain it was horrendous and then the whole time I was at gynae they told me they couldn’t diagnose me with endo until I turned 18 because the only way to diagnose someone is through a laparoscopy..

I was put on morphine and tramadol and condiene and all different types of ibroprufen like naproxen which caused me stomach ulcers from the get go and although I don’t and never had an addiction to the pain relief my body is just so immune to it, so when I am in pain the only way I can have pain relief is when it’s that bad I go into hospital and have diamorph..

Turn out I have stage 4 endo, like I screamed to everyone that told me nothing was wrong, you know your own body and you know when something’s not right!

Go to the doctors and say bottom line I want to see a specialist they can’t refuse you because it’s your care and it’s your decision.

Hope this helped a little xx

1 like
Reply

Completely agree with Sarah- it took years and years for my diagnosis. I was mid- diagnosed with so many things (PCOS, IBS, crohns). You need to request a referral to a gynaecologist and unfortunately a laparoscopy (I’ve had many smears and although very important they won’t pick up endo)

Good luck x

1 like
Reply

Hi, I'm 23 and was diagnosed with Endo following a laparoscopy just over a week ago, after 7 years of symptoms. Like you I struggled to be heard by doctors and told it was "normal" to feel this amount of pain. Again, for me the painkillers they suggested didn't do anything to touch the pain for years. Only co-codamol seems to work, which they only suggested 6 months ago. So I can more than understand how frustrating this is all for you to deal with.

It only recently got taken seriously by my doctors when I was completely honest with them about how much work I was missing due to my periods. I get flushes, faint, nausea and of course the incredible amount of pain, that I have often had to take a week off work when I'm on. I'm not sure how it is where you live but at my gp it seems they won't refer unless they understand how greatly it is impacting your life. If you haven't already it might be worth bringing this up with your gp. Alternatively, I would definitely say it is worth seeing as many gps as you can until you are listened to. It shouldn't be this way I know, but it certainly helped in finally being refereed to a gynacologist in my case. Also changing doctors surgeries could be an option if that fails. At the end of the day you know your body and you shouldn't have to be putting up with this amount of pain whether it be due to Endo or another condition. Wishing you all the best, I know this isn't an easy journey to take.

Reply

You may also like...