I am so upset. Just been to see my gynaecologist to discuss my pelvic pain. He looked at scan notes (didn’t look at the scan itself) and said clear scan, no problem. So I asked, could there be anything that a scan wouldn’t see? To which he replied “some people seem to be looking for problems, this is a clear scan”. I said “I’m not looking for problems. I have the pelvic pain regardless of the clear scan and I am trying to understand the cause so I can help myself.” He said “Sometimes you just have to live with pain.”
He finally acknowledged there could be some endometriosis that would disappear with menopause and gave me an injection into my pudendal nerve which has scarring (a previously known problem).
He has really upset me. I don’t want to have pain...and I’m not going looking for problems. Quite the opposite, I’m trying to find an answer so I can help myself.
Apologies for venting, but I just feel like he was suggesting I am making it all up. Guess I just have to live with it and not mention it again for fear of being told I’m ‘looking for problems ‘. 😢
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KH509
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Endo doesn't always show on scans, so it's worth pushing for a laparoscopy (the only way to formally diagnose endo), you may need to go back to your GP and ask for a referral to an endo specialist or referral to a BSGE center. They will know what to look for and where, and will take your symptoms seriously. Check out the below from the Endometriosis UK Charity for more info:
During the laparoscopy and endo specialist can if requested sometimes excise the endo they find, take biopsies and perform a hysteroscopy (camera into uterus) to check for any problems there and again take biopsies.
If you're in pain something is wrong so you shouldn't just have to suffer and not mention it, you're right to work out you need something doing. We can help you with what you could do next.
It's one of those things we need to research and read up and push for a diagnosis and treatment, don't let yourself be ignored. You can ask to see a different doctor; that's freedom of choice - second opinion of your symptoms, focus on that; have a page a month diary of your symptoms, pain levels, medication, period, how heavy, how it affects your mood and activities like sports, shopping, work. It'll help your case when you get referred to an endo specialist or a BSGE center. x
I went through this for 16 years of my life ! It is incredibly frustrating. It’s only when my endometriosis got severe and I developed large cysts was I taken seriously. Before then, I was dismissed and not even treated. I was told I was overthinking it, and that period pain is normal. Mine wasn’t, I used to bed-bound for 2 days straight every month and no amount of pain killers helped. It’s sad to think if I was taken seriously, and diagnosed in a timely manner my endometriosis wouldn’t have gotten severe. Don’t let anyone dismiss your pain. Keep going back, again and again, until you’re taken seriously. See how you get on with your gynaecologists treatment plan, but do not shy away from going into the doctors office because you’ve been told you’re ‘overthinking’ it.
Sorry to hear your Dr is a twat. A clear scan does not by any means mean no endo endo usually isn't picked up on scans which is why it's not considered a way of diagnosising it.
Google Nice guidelines for endometriosis. This is the guidelines for how women wmmith suspected endo in the UK should be diagnosed or go through the process. It clearly states that a clear scan doesn't mean anything and they should still offer a laproscopracy. But I would recommend changing gynecologist if you can, for suspected endo only gynecologist with specialist interest should see you. And by their clear lack of knowledge they know F all about it.
Your GYN is talking absoloute crap. A diagnotic lap is the only way to diagnost endo, it is the gold standard for a reason, it normally doesn't show up on scans. Hell I'd even argue that a clear scan is more evidence of endometriosis than an abnormal scan, as it rules out several other things it could be. I would follow farahziya's advice and push for a referral to an endo specalist at a BSGE center from your GP.
Also endometriosis doesn't disappear with menopause, endometriosis tissue can produce its own oestrogen and continue on developing after menopause. They don't know what they are talking about, take no heed of it.
If your GP doesn't refer you to a BSGE center, change drs and find one that will. Remember you have the right to second opinons, and you have the right to change GP without any notice and without reason. It took me a good while to find a GP that I really like and I get on with and who fought tooth and nail for me. It's worth it.
My Gynae also told me that my scans were clear and when I mentioned that the ‘tugging’ pain often subsided when I was on my period (obviously having horrible period pains too), he said it definitely isn’t endo then. Anyway after my lap endo was confirmed. Do not listen to them, you know your body, you know if something isn’t right, please keep going back, go to another GP if you have too! Keep fighting you can’t live in pain xx
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