Endo and Auto immune diseases

Hi,

I have just come back from an appointment with my consultant. I have been on Prostap for 3 months (No HRT), and have had little improvement in the pain. I have also had a resistant UTI and kidney infection which my urologist thinks could be due to endo. My consultant has said that the pain I am in may not be caused by my endo at all as he feels it would have improved with the injections. He has now reffered me for tests for Lupus and Crohn's disease.

I am not sure how to take this. He says that frm the extrenal ultra soundscan he does dot see any significant adhesions or signs of more endometriosis than was present 8 months ago. I am not entirely happy with this, but I am more concerned about the tests he has requested.

Has anyone else been asked to have these tests?

I am having pretty much every 'oscopy you can think of as well as being used as a pin cushion!! Any advice would be brilliant as I am feeling so down about the whole thing!

Thanks

2 Replies

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  • Hi

    I have been all the 'oscopy checks too. They actually started with these and after being through a nightmare i ended up having a lap that showed endo and some adhesions.

    Your doctor should have known better that almost all cases of endo and adhesions CANNOT be seen in scans mri, ct and ultrasound.

    I have done all of these too and everything appeared normal, and as in your case i have no crohn disease as this can be checked during colonoscopy and blood test.

    I would suggest to have some checks of what they are suggesting but make sure you are monitored from a good endo gynae at the same time.

    Prostap is just a treatment and everybody react different in this, it works for some and not for the rest. This doesnt mean that you dont have endo, even a tiny spot of endo could cause great pain especially if it affects some nerves too.

    Jo x

  • Hey I am so sorry you are having a tough time, I have not had the tests you have to have but I have had other tests and they all came back negative so I sit there thinking it has to be Endo.

    Endometrosis can not be seen on a MRI/Internernal or External ultrasound normally, it can normally only be seen by doing surgery.

    If you need to talk give me a message.

    Kind Regards

    Emma-Jane

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