Awaiting diagnosis: Hi everyone I'm hoping... - Endometriosis UK

Endometriosis UK
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Awaiting diagnosis

Nelly_Star
Nelly_Star
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Hi everyone

I'm hoping you can help. I first got symptoms when I was 14, told it may be endometriosis in late 20s/early 30s but when pain reduced on pill back-to-back told it wasn't and discharged.

I've now had to come off the pill due to high risk as I'm 42 and the pain is back with a vengeance. My GP referred me for a scan, which showed my ovary is 'stuck down' and endometriosis is again suspected. The pain during menses is pretty chronic - I'm taking mefenamic acid which I take alongside paracetamol. I am also getting daily stabbing pain, deep ache like period pain throughout the month. Symptoms during periods include the above but awful plus headache, leg pain, back pain.... the list goes on. I was also diagnosed with IBS in my early 20s which I'm guessing is caused by Endo having researched the symptoms.

I've been referred to hospital and I've been told I won't get an appointment until February at the earliest. They think I should see an endometriosis specialist (because it says suspected endo in my notes) but can't guarantee.

Have you any tips on whether there's any way to get seen sooner on NHS (as I've been waiting 28 years for diagnosis I'm a little peed off). And also, any tips on managing the pain as it's getting worse each month.

Thanks

Helen

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IsabellaofLocksley

Hi Helen, sorry to read you are suffering. I don't live in the uk so I can't advice on wait times but from what I have read on here it is ridiculously long for lots of ladies! So annoying and so bad when you are in constant pain.

I can't believe they told you it wasn't endo because your pain reduced with taking the pill!

It is definitely a good idea for you to try to see a specialist in endo because it can often be missed by a general surgeon if you are going to do a lap.

For pain relief, I can never find anything much that helps but I love my heated pad that I sit with on my back and on my tummy, it really helps and you don't have to keep filling it up like you do with a hot water bottle so helps when you are in a lot of pain!

I know it's not much but I just want you to know also You aren't alone and keep pushing for a diagnosis, you have waited so long all ready! Your pain is not normal!

X X X X 💛

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Nelly_Star

Thank you for your advice and support IsabellaofLocksleys

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Purplewitch18

Hi hunny, i feel your pain i really do! If you can i recommend going to see an endo specialist and pay private. I did this and it cost £150. It will move things along quicker, and im in the uk too.

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Nelly_Star

Hi Purplewitch

Thank you. Were you able to get treatment on NHS after being seen privately? I am concerned if seen privately won't get back into NHS for treatment and don't think I can afford an op privately xx

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Purplewitch18

It wont affect anything, your private dr will write to your gp with what they think you need to have done and what was talked about in the consultation. It should mean you get put straight in for the op instead of having to wait for the consultation aswel. It takes months to even get a consultation so it cuts that time out then you are just waiting for your op x

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