Feeling alone

[Lunaloo123]

Hi, I’m new to this so be gentle with me…

I think I have endometriosis, I have been to the doctor but have had no luck with anything. They sent me for an ultrasound a few months ago and because it came back clear, I was forgotten about.

There’s a lot going on in my life right now, and this just seems to be the icing on the cake which keeps me from doing my every day things.

The doctor said that the only way of finding out if it’s endometriosis is to have an operation and that she didn’t think I wanted that.

Is this the only way to find out?

Thank you in advance. 🥰

[Avourneen]

That is caterorically not true. Did you have an internal ultrasound ? An internal ultrasound should show it up but quitea lot depends on whether the sonographer doing the ultrasound is a general sonographer or a sonographer with specialist knowledge of endo.

You can also have an MRI which will show but the same thing applies the person doing the scanning has to know what they are doing,

You can get an internal ultrasound done in London by a proper expert done privately it will cost you about 400 pounds but then you will know for sure if you have endo, and I guess it will pick up anything else gynaecological that could also be causing the pain.

Personally I would do this as it's hard to know what kind of sonographer will be doing your scans on the NHS. Good luck

[oceandaisies]

So sorry to hear about your experience so far, it seems to very often be the case that doctors brush us off and it’s very frustrating.

In terms of diagnosis, there are some endo specialists out there who can diagnose via scans. Maybe you already saw one of these, but they can see things that a normal gynaecologist would miss. Saying that, a lot of the time it still doesn’t show up on a scan, even with someone who knows what to look for. This has been the case for me, so the only way forward is the laparoscopy.

If endo is having a big effect on your day to day llife, I would really recommend trying to push for at least being referred to a specialist endo centre if there is one in your area. You can find a list of these by searching ‘BGSE endometriosis centres’ on google. That way, at least you might have a chance of avoiding an operation for your diagnosis. I’m at the point now where I’m going to push to be added to the list for the laparoscopy as the symptoms outweigh the risks and discomfort of this, but I think a lot of people will just go on the assumption that they have it and have treatments based on that assumption (eg hormone treatments).

I really wish you the best of luck and hope you are able to feel heard by your doctors and get a diagnosis or treatment that will help you xx