Endometriosis UK
34,822 members31,041 posts

Need advice

Hi I'm new hear my name is Kerry I'm 28 my nan and mum both had endometriosis and u think I have it to . I'm m on the pill but I bleed every 2weeks get terrible lower back pain , been to my docs who referred me to hospital the gynaecologist I saw on Tuesday said that all my scans r clear and he don't no why I'm hear. He gave me an open appointment for 6 months so I'll think I'll make another appointment with another gynaecologist. Sorry it's long winded but I'm getting fed up now .

17 Replies
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Hi Kerry

Our helpline is open now and closes at 2pm if you would like to talk it through with one of our volunteers.

0808 808 2227

Also, please see our information about getting a diagnosis. You may find some helpful tips.

endometriosis-uk.org/sites/...

Louise

Endometriosis UK

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Do you mind me asking which pill you're on?

How were your periods before the pill?

X

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Noriday and ok I think it's been so long

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Are you in the UK?

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Yes

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You are at much higher risk having your mum and nan with it. Scans more often that not don't show endo and your gynaecologist clearly has little knowledge of how to diagnose it. You need to see someone with more specialist knowledge. We are not allowed to give medical advice on here but if you would like to join my private FB support group we can go through your history in detail and it is allowed to discuss surgeons too. It is so important that you are treated appropriately NOW as contraceptives are acknowledged as masking endo and leading to severe disease years down the line.

facebook.com/groups/1148144...

x

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Thank u but I'm not on Facebook I'm going to ring gynaecologist on Monday and ask to see another doctor, I no my body and I no sinthing is not right

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I don't use it for anything else but it is a vital resource. Most general gynaes have little experience of how to diagnose endo so be sure to request a referral to a BSGE accredited centre.

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Stupid question r they in hospital? I though all gynaecologist were trained in it ? Wen I'll ring I'll ask

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They are specialist centres in certain hospitals. No, the surgeons in BSGE centres have to have extensive advanced excision training. A totally different level of training than in general gynae. But your gynae is unlikely to refer you. Women usually have to do their own research and become experts in their rights.

bsge.org.uk/centre/

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Wen I went on Tuesday he didn't seem bothered he had a look and he said he can not feel endometriosis

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As previously said general gynaecologists are not usually specialised at all in endo so often fail to diagnose it. Most endo can't be felt and can't be seen on scans. Unfortunately it isn't allowed to name consultants on here to check them out. I suppose it all depends on whether you are bothered by your symptoms and want proper care.

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I've had enough I bleeding every two weeks horrible back pain but I'll ring on Monday , thank u

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Do consider joining FB just for the group. It is private so no one who knows you can see you and you can change your name to a nick name before posting anything.

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Thank u

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Hi I notice you say you are on noriday? I was on the same pill for 2 years and suffered terrible with constant bleeding approx every 2 weeks like u and sometimes they would even last 6 weeks. I also didn't feel like myself and my mood swings where very up and down. Eventually I got a doctor to listen to me and he swapped my pill. Now I can't take the combination due to DVT some years ago but he prescribed me cerelle. Whist still a progesterone only pill It did improve things for me. Very few periods and always light. It's an option to look at to help. I did some research on Noriday while I was taking it and it doesn't have good feed back from others either .

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Thank u but I have tried akot of things : the coil the unplaint the depo injection and so many pills

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