Under investigation for Endo

[AR24]

Hi all,

I am new to the forum. My name is Abbi. I am currently under investigation for endometriosis and other gynae things my symptoms may be a result off.

My main symptoms include: bloating, urinating a lot/feeling urgency to urinate, painful sex especially in certain positions (sorry if TMI) and quite bad period pains on the first few days of my cycle and it’s a heavy cycle on first few days too. Did people have similar? I have an ultrasound scan next week which I’ve had previously and didn’t show anything. I was then referred for a laparoscopy but moved area so starting the process again.

Was anyones serum 125 CA elevated too when they received their diagnosis?

Many thanks

Abbi xx

[Lindle]

CA125 can be raised for many reasons so isn't a specific test for endo but when it is raised as a result of endo it is usually associated with endometriomas and/or deep disease.

An ultrasound shows endometriomas easily unless they are very small but these endometriosis cysts are often associated with deep rectovaginal disease. Pain with sex is a typical symptom but there will often be lower back pain, and referred pain down the sciatic nerve to the leg as well as bowel issues. Symptoms are typically (but not always) left sided.

Bladder issues can also be a sign of endo but it would only show on ultrasound if endo lesions are large enough. A negative scan doesn't rule out superficial endo.

It is very important that the sonographer knows how to look for the cardinal sign of rectovaginal disease, especially if an endometrioma does show. This is called the 'sliding sign' to see if the bowel and uterus slide freely against each other but basic sonographers aren't trained to look for it. So before the scan starts I would be sure to ask if they are trained to look for the sliding sign.

When it comes to a lap they must be trained in endo and have a special interest so be sure to check that too when the time comes. If dep disease does show on the scan you would need referral to a more advanced team in a tertiary endo centre.

[AR24 in reply to Lindle]

thank you so much for this. I have never heard of the sliding sign before!

Thank you!

Abbi x

[Dee_EndoUK Moderator Endometriosis UK]

Hi Abbi

A really warm welcome to the forum - it's lovely to see that Lindle has reached out to you already with advice and support.

Along with our forum, we also have face-to-face support groups all over the country, where you can discuss endometriosis and the issues you are facing with other sufferers. You can find out if there's one in your area here: endometriosis-uk.org/find-a...

Wishing you all the best with your forthcoming ultrasound scan x