Not Endo? So confused: Been to see a... - Endometriosis UK

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Not Endo? So confused

Lizziemay160
Lizziemay160

Been to see a specialist today to ask for a laparoscopy. He gave me an examination and asked about my symptoms and said he doesn't think it's endo, or at least it's unlikely. I have no idea what to do now. My period pain is NOT normal, excruciating pain that can't even be helped with maximum dosage of painkillers and the contraceptive pill. I asked him why , if it's not endo why I have such severe pain. He said I may have some that he cannot tell without a laparoscopy, but that if so its probably mild. So confused. Cannot have sex anymore. It's so painful like a burning sensation (sorry for tmi!). He said this isn't a usual sign of endo? Please help!

9 Replies
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Think you need to push to have a lap as thats the only definitive way of finding out. and from everything I've read painful periods and pain during sex are two classic symptoms of endo. Also I'm not sure what he means by 'mild' endo. There's no correlation between how much endo a woman has and the pain she experiences. Some woman have debilitating sypmtoms and yet only small amount of endo.  Maybe you can ask for a second opinion, see a different gynaecologist maybe. 

Lizziemay160
Lizziemay160 in reply to Larrie7

Thank you, yes I think I may ask for a second opinion. The very first specialist I saw said he thought I have endo and that, like you said, even if you have a small amount of endo it can cause a lot of pain and vice versa. And I thought they couldn't tell if you have endo without the laparoscopy which has confused me more.

Larrie7
Larrie7 in reply to Lizziemay160

The gynae's I've seen have been useless. My GP suspected I had endo and sent me to gyno who diagnosed me with central sensitization syndrome (which a bullsh!t diagnosis)  and said I probably had a bit of endometriosis but just keep taking the pill back to back. I can see why it takes women so long to get diagnosed!  I've had enough, and this week booked to see an endo specialist which is going to cost me £140 but I reckon it'll be money well spent. And he has links with one of the specialist endometriosis centres. You could search for one of those online and ask for GP referral or pay to see a private consultant within one of those centres. 

This is the link to the list of centres:   bsge.org.uk/ec-BSGE-accredi...

Lizziemay160
Lizziemay160 in reply to Larrie7

Thank you for your reply, I hope the endo specialist can help you - I think it will be worth the money. I've had a look and the gynae i saw was under a bsge centre. Im guessing he knew what he was talking about? He gave me 3 options; stop taking the pill and either change to the implant or mirena coil, or go for the laparoscopy even though he doubts i have endo, or a lot of it anyway. 

Are you under a bsge centre, so many general gynes don't know what they are talking about when it comes to endo, unfortunately there isn't much training in the curriculum for it, get a refferal to bsge centre, xx

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Lizziemay160
Lizziemay160 in reply to Hidden

Thank you for all your help, i will have a look. I feel a fool to be so unhappy after being told I don't have endo. Everyone around me is saying that its a good thing I don't have it, telling me to cheer up and be more positive - but all I keep thinking is that my gynae couldn't explain why I have such severe period pains and all these other symptoms that are so characteristic of this disease. I think I'm going to consider the laparoscopy even though my gynae is so sure it's not endo - that way I will find out for sure. I've been having all these problems for about 5 years and want answers.

Hi Lizzie,

Sorry to hear about the awful time you are having. Your immediate symptoms seem like endo and similiar to what I have experienced before, with the painful periods & painful intercourse.

The only way to diagnose endo is via a lap which isnt always the most convenient. My doctors tried to diagnose me with IBS & then appendicitis before someone actually started listening to me! I ended up having both my laps privately as i get private healthcare through my work.

I would continue to push and ask to be referred to a gynae. you are entitled to a second opinion, especially a specialist that knows a lot more about endo than a GP that has all round general knowledge. All i can really advise is keep pushing for a referral.

Best of luck!

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