feeling frustrated - how long did it take people to get diagnoised and has anybody had a negative laoproscopy

iv had one lapo where nothing was found been suffering for 10 years its finally come to a head and my doctor is treating me for endo at the moment due to go back to gyne. i have constant urine infections, blood in my urine with no explanation, pain under my left rib and low tummy, very very tired, ibs, headaches, mood swings, gushing periods, period pains all the time feel like i need to wee, clots and i came off the pill had copper coil and oh my god the pain and sickness was terrible.

i have had numerous gyne appointments over the last 10 years to find out 5 years ago that the laporoscopy showed nothing.... i was confused and upset could not get my head round it so had every test done under the sun with every department going. my doctor finally said enoughs enough i think you have depr4ession so treated me for that i felt very stupid and as though i was making it up, i decided not to go back and live with my pain on a daily basis.

i then decided to change doctors as i was admitted to hospital with excusating pains in my tummy all test were negative however they said we belive you have had a cyst. i decided to have the copper coil fitted as my doctor had advised me thgough the hormones were messing me up when it was the fact i was very unconfatable most of the time.

the coil fell down and i had a scan there was fluid in the womb and i was in so much pain even after the coil was removed. the doctoer started treating me as if i had endo with hormones its taken 6 weeks im still very unconfatable but can put up withthe pain at the moment im doing 3 months back to back then off to gyne for the doctor to request a 2nd laporoscopy she has said she belives me and that its not always visible via a laparoscopy if itis internally in an organ and can easly be missed.

im now douting the gyne consultants in my area as its been 10 years of nobody knowing whats wrong non of them specialise in this field and unfortunatly for me iv seen every single one of them in the 3 local hospitals.

If anybody has any advise or insite into their diagnosis i would be greatful as feeling very frustrated at the moment.,

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5 Replies

  • Hi gemmap, I sorry to hear you are going through this. I think everyone here has been through something similar. For me everything hit the wall it aug chronic fatigue,constant pain, pain and bleeding after every bowel movement, 15 day periods despite being on microgynon. Sent for lots of blood tests all fine. Got told I was depressed and lazy and to start doing more ( she was completely unaware I run a manufacturing business a smallholding and owning 2 Collies!) I pushed for for a gnye referral got told no I don't see the point. So pushed for a private referral got told to take cerazette for 3 months then come back. Once I got my appointment, from ultrasound to lap was under a month. I had an irregular cyst and endo. So for me it was 11 years but only because I paid for it. Its the best money I have spent. If you do decide to go private make your gp refer you as if you do it yourself the gp doesn't have to acknowledge their opinion! X

  • Have a look at the website for Adenomyosis.. very similar to endo, but hidden inside the muscle walls of the Uterus rather than endo lesions everywhere but the uterus.

    It is certainly worth considering adeno when a laparoscopy didn't show up any endo lesions but you have all the symptoms of endo.


    Do your reasearch yourself- don't expect your GP to know much about endo never mind adeno...they rarely know that much about either.

    Took 29 years for me from 1st visit to the Doc with severe period pains erratic periods and so on...to finally having an op. average is 9 years. But for everyone diagnosed under 9 years there is one of us waiting longer than that.

    You do have to become your own advocate and Doctor in many ways.

    Do your homework when you can manage to, learn all you need to know about the various gynae conditions that could be causing your pains and then push to either get them diagnosed or eliminated as possibilities. a lap 5 years ago is a long time in endo terms and even if that didn't show up anything doesn't mean you didn;t have endo or don't have endo now. However it may be that you don't have endo and instead have adenomyosis in which case the next step is an MRI scan while you are on a period and that should pick up if there is bleeding and swelling inside muscles. Endo is on the surface, Adeno is hidden inside.

  • thanks to both of you for your advice you suddenly start to dout your self when they keep drawing a blank but whilst things have got worse i know its not in my head and im determined to get to the bottom of it, the only thing im worried about now is find a specialist who is compitent in either of these condition as i have seen all the specialsts at the 3 local hospital all who have been disissive. I keep looking on doctor foster but never seem to find anybody specialising in endo just intrested... i am going to have a little look into adeno and see what the score is thatnks it not something iv ever heard of and never been mentioned to me.

  • Hi it took me ten years to get diagnosed with endometriosis and then the only treatment i had was 3 months of HRT. It has then took the last three years to get another laproscopy done and this time they have found that i had two cysts as well as severe endometriosis attached to my bladder and rectum. I also have other health problems and do sometimes think why me but get on with it. You have to fight for anything you need these days and i am sure everyone on here will support you.

  • thanks shopaholic1 x

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