19 with possible Endometriosis

Since the beginning of this year I have had severe lower abdominal pain which is leading to back and hip pains (I had inflammation in my hips a couple of years ago and my hips and back feel like they're inflamed again). I've been passed around from Dr to Dr doing different tests and antibiotics and more swabs and blood samples....nothing. Today I went back to the Dr's and have been told I need to go for an ultrasound scan to eliminate the possibility of having endometriosis. However I've read on the NHS websites and other medical websites that this doesn't always show this condition in a scan and the only way for diagnosis is keyhole camera through the lower abdomen. To be honest I'm fed up of it all it's making me feel horrible all the time because its been a pain for 7 months and I feel nothing is being done about any of it i'm just being fed pain killers and antibiotics which don't work. Hopefully this scan will show something and I can get it sorted.

How have others been diagnosed? I don't want the Dr's to eliminate this possible condition considering I have shown most of the symptoms when they haven't checked properly.

5 Replies

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  • Ultrasound didn't detect my endo, but it did rule out a lot of other possible causes of the pain, so it's good to have - at least for your own reassurance as it can detect a number of other conditions. I had to have a laparoscopy and had my endo removed during the procedure.

  • Prior to all three of my surgeries that removed really extensive endo I had scans, none of them showed anything at all! If they suspect endo you should have the scan to rule other things out but if they want to rule endo out you need a lap. Request a referral to your nearest specialist centre you can check here also bsge.org.uk/ec-BSGE-accredi... then you can be assessed by endo wizards instead of general gynaes who generally don't have a clue unfortunately.

    Best of luck getting answers xxxxx

  • My endometriosis.was picked up this way simply because my ovaries weee twisted round the back and adhered somewhere else!! Which showed up on the U/S and made them.do a lap x

  • You dont get diagnosed with endo with a scan, because they cant see it. The only way they can do this is with key hole surgery. Scan will be usefull for other things and can see cysts as well if they will be there.

    Painkillers dont help me either and it is always easy to say by GP's because they dont know what is wrong. Painkillers are good for a short period of time, but you dont want to take them every day....

    Make sure you keep going back if you are in pain, make a diary with what sort of pain and show it to your gp.

    I was diagnosed during keyhole surgery. I had a large cyst and caused me a lot of pain and discomfort and when they did surgery they found endo as well and taken care of that. After surgery i thouht evetything was going to be ok, but i am still in pain and still go back to GP and this is going on for a year, so keep go back and make sure they found out. Painkillers etc are not a solution.

    Good luck and i hope it gets sorted soon!!

    Naomi

  • This is what has happened to most of us, I was diagnosed last year at the age of 19 too after going to the doctors & hospital for over 7 years complaining of stomach/hip/leg/period/bowel/bladder pain & problems, I had 2 examinations, an external and internal ultrasound and a million blood & urine tests before they agreed to do the laparoscopy - it is still a 'major' operation despite being keyhole and is not a decision to be taken lightly especially at our age; its good that they are doing all other tests first at least they are trying to find problems & rule out anything else. I had my lap last October which confirmed minimal endometriosis in locations which did not correlate to my bowel/bladder symptoms and have since been sent for an MRI scan which has led to a referral to a bowel & urogynae specialist (I haven't yet been told the results of the MRI but I'm guessing there was something if I now have to see the other specialists). You're on the right track to getting a diagnosis, you have to stay strong and positive and bear with it whilst they try to find your problems a label! Hope you get sorted very soon x

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