Help! Have I been fobbed off again?!

So I haven't been diagnosed with emdometriosis but I've been reading for months about it and I'm convinced I have it! I've been having problems for about 2 years now with symptoms including: stomach pains, pelvic pains, nausea, certain foods upsetting me, really bad periods and bowel problems! I've had blood tests, ct scans, mri scans, endoscopy, telescope in my kidney and nothing has shown up which is extremely frustrating considering how rubbish I feel! I had the last test in July and was told that I was being referred for a laparoscopy, I waited 4 months and I had an appointment with the general surgeon today and he basically said that they're going to refer me to a pain specialist and that this mystery illness will probably pass in a year...I'm feeling so deafeated and don't know what to do next?!

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  • Hi

    This is similar to me! My GP was certain that i had endo due to a range of tests being clear ruling out other thibgs and all symptoms being signs of it- nausea, not wanting some foods, not hungry then suddenly hungry, extreme pain in lower back and lower tummy so bad i think im going to pass out and heavy periods. So today i saw my gyni consultant who summed it up; yes you have endo, no im not referring you for a lap, get on with it, too much risk for someone with no children and only 25. I said this wasnt helpful as id like yo know what stage and even though all involved are certain i have it a lap os the only way to actually know! Ao he just wanted me to go on the pill which i told him doesnt agree with me but at that point i felt like he just wanted to cross me off his list!

    It sounds to me like you have endo. I think we are both going to have to become pains and nag and nag. My last period saw me at the docs 3 times and once straight after i plan to do the same again and try to be referred for a second opinion. Please do the same. Dont let them fob you off. I need to know where i stand for my physical and mental health. Im sure youre the same.

    All the best

  • You need to fight and fight!!! I was given the choice of the coil or the mini pill as the rest of the normal pills made me suicidal...

    Fight your corner, Frigging get upset if you have to. Do your research before you go in... Pm me if you want to chat. Xxx

  • Hi I had the coil fitted which helped alot with periods but symptons seen to be coming back again thick and fast, feel at wits and today x

  • Hey lovely,

    I'm really sorry about the way you've been treated... Im27 no kids and have PCOS... ( so I don't get periods but I get all the hormonal crap instead) 3.5 years ago I had my appendix out as it was inflamed and making me ill.... Since then I've been in pain... Inside my pelvis, above my pelvis(kinda waist line) and was having to take cocodamol and have a permanent hot water bottle to sleep.

    I complained and complained to my docs who said it was scar tissue from my appendix op. They did bloods, ultrasounds... Yes they found cysts (well I knew about those) but they didn't find anything else. I was referred to gynae who then did all the tests to see whether it was IBS, and to do with my bowel (after my appendix surgery) they all came back negative so the consultant out my name on the waiting list for a laparoscopy. In the past I had had, multiple UTI's including kidneys infections where I was passing blood from straining. Pelvic inflammatory disease with my appendix op, and supposedly IBS...

    When they did the lap, they found mild endometriosis, they removed lots of scar tissue from my appendix site and removed some endo but I have some on my urethra so they couldn't remove it...

    I complained and fought my corner for 3.5 years until a consultant actually believed I wasn't making the pain up. You need to be referred to gynae not general surgery... General sergeons don't know what they are looking for!!!

    All i would say is you're not alone and fight your corner!!

    Hope that helps xxx

  • I agree with the others - insist that you get referred to a specialist. The only way to effectively treat endo is via surgery. Putting you on pills will only delay things and could make you worse long term.

    I had a similar problem so paid to see a specialist privately. He agreed that it was endo and put me on the NHS waiting list for a laparoscopy. Just because you make a private appointment doesn't mean you have to pay for the operation. Its a really good way of getting seen quickly and by an expert. You can find a list of your local endo specialists on the BSGE website.

    Good luck and keep pushing!!

  • Just stay persistent. It's so frustrating but keep at it, a laparoscopy is the only sure way to diagnose endometriosis and I think that's what you need! Even if you don't end up having it it's a good way to rule things out. Good luck! Xx

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