Don't know where to turn

[bethykat95]

I had my first laposcopy on Thursday and now I'm at a loss. I have almost every endometriosis symptom and after years of back and forth to the doctors and hospital ( they've taken out my appendix, checked for cysts and blamed it on ibs or spasms) I finally got my referral. After the op my surgeon said he found nothing suspicious had no idea what was causing the pain. I feel like crying as I was hoping to finally have an answer and now I feel as if the surgeon thought I was making it all up. I don't know what to do, im young (18) which makes me feel like he's fobbed me off should I get a second opinion? Xx

[aimee22]

Hi bethykat.

I had my first lap just over a week ago, and have been diagnosed with endo. I was so happy to finally get a diagnosis.. Especially because, in my pre op assessment, i was told that even if i do have endo, there is only a 50% chance it will show up in the lap. I was convinced, like you, that i would be told nothing was found.

I went to see my gp a few days after my pre op, but he wasn't there so just saw a locum. Turned out the locam was brill. (Far better than my own gp!!) He told me that because i'm having the surgery done by a general gynae surgeon, that's why i may not get any answers. He said if that is the case, then he would strongly advice to research an endometriosis specialist and make an appointment with him/her. It costs a lot of money (we found one and were quoted £180 for an appointment), but then the specialist would write to my gp and ask to be referred back to him on the nhs. So wouldnt have to pay for further treatment etc.

My advice is to try not to be too disheartened by your results. I too went from appendix to ibs to endo etc, like you. And i told them from the start that i thought it was endo. We know our bodies well!!

Look into endo specialists, and if you can afford it, then make an appointment. If you cant, then maybe speak to your gp and see if he will refer you to a specialist. I would never consider this with my go as he's bloody useless!! But sounds like yours agrees with you, so you might get the referral.

Good luck with everything. Stay positive. Xx

[bethykat95 in reply to aimee22]

Thankyou! It's just gutting as I thought I'd finally have an answer and now I feel as if they all think im faking it. Like you said we know out own bodies! And we know when somthings wrong. I'll have a look at some specialists and see what I can do. I'm a little worried about being referred by my gp as i'm worried they will just turn around and say what's done is done. I've found out from many people that my local hospital is terrible with diagnosing endo which I wish I had known previously as I would have requested another hospital! Thank you for your kind words xx

[sammyrobinson_x in reply to aimee22]

Am 21 and I was just diagnosed with endo 12 months ago, I first got pain at 13 so took my appendix out they found it wasnt that when they opened me up then my pain stopped till I was 16 and ive been in pains ever since, I kept getting told the ibs story then getting told I was making it up and I was a morphine addicted finally 5 years after the pain started I finally got a laparoscopy after everyone refusing to do one as there was apparently nothing up with me, I was really scared about my laparoscopy as thought thay they wouldn't find anything and that I was going mad, but when I woke up the lovely nurse in recovery told me they had excised endometriosis and ureterolysis I was over the moon I was diagnosed and that I proved the hospital wrong that something was wrong with me, my gyane consultant said to me endometriosis is a pain to diagnose as sometimes its only visible under a microscope. You can get refered the BSGE Accredited Centres for endometriosis here is a linkbsge.org.uk/ec-BSGE-accredi... and you are entitled too a second opinion good luck hun x

[aimee22]

Your very welcome. I only came on here about a week ago and have found it a great help to talk to women who know what i'm going through.

Like you said, it's as if people think we are faking it. Those that do think that, they really havent got a clue what it's like to be in pain every single day and basically not have a life.

Hopefully you can go and see an endo specialist and then finally get some answers. You could always tell your gp aswell that you'd like another opinion. You are entitled to do that.

best wishes. Xx