Diagnosing Endometriosis

Lau2108 · 2025-02-14T11:07:17+00:00

I've just booked a gp appointment to discuss symptoms of endometriosis. I've a long list of symptoms that have varied through my menstural life and been brushed off as various stand alone things. As I've looked in to endometriosis recently, it all makes sense. Has anyone got any advice for things to do/request going forwards with this? Endometriosis UK says it takes on average 8 years and 10 months to get a diagnosis, I know this isn't going to be quick. I want to arm myself with as much knowledge and experiences as possible to get through this.

worldwidetravel2017 · 14/02/2025 19:38

Theres a simple blood test called ca125

You can ask nhs gp for it

If your result from that is consistently / repeatidly abnornal - that could point towards it

worldwidetravel2017 · 14/02/2025 19:38

Also

Privately

Vista health

Could mri your pelvic region

( that could flag something)

worldwidetravel2017 · 14/02/2025 19:40

Also - if you get bloating - have you had being celiac ruled out ?

Also - if you get bloating - often good to ask for NHS transvaginal scan - to rule out things like pcos.

Rockfordpeach · 14/02/2025 19:41

My 14 year old has suspected endo. The GP is taking it seriously though because my mum, sister and niece all have a diagnosis of it. She has an ultrasound (external) next week. The GP said the only way to definitively diagnose is an internal ultrasound but obviously with her age we don't want to do that at this point

worldwidetravel2017 · 14/02/2025 19:43

Rockfordpeach · 14/02/2025 19:41

My 14 year old has suspected endo. The GP is taking it seriously though because my mum, sister and niece all have a diagnosis of it. She has an ultrasound (external) next week. The GP said the only way to definitively diagnose is an internal ultrasound but obviously with her age we don't want to do that at this point

Has she had a ca125 blood test ?

OnePearlFox · 14/02/2025 19:45

You should ask to be referred to gynae.

The only way endo can definitely be diagnosed is by a laparoscopy.

You can get a blood test to check CA125 levels but that’s really only an inflammation marker, it doesn’t tell you the cause of inflammation.

They may send you for TV ultrasound and MRI but endo can’t always be seen on them, so don’t be discouraged if you do get them and they can’t find anything.

It took about 20 years to get my diagnosis 😭 I was able to get diagnosed on the NHS - my timeline from referral for scans to seeing consultant was actually very quick. BUT the wait for a laparoscopy was going to be about 2 years, so I went privately for that.

Currently the only treatment for endo is birth control and I’ve found the mirena to be an absolute game changer. I wish I knew about it 10/15 years ago!!

Rockfordpeach · 14/02/2025 19:57

worldwidetravel2017 · 14/02/2025 19:43

Has she had a ca125 blood test ?

Show quote history

No I don't think so. She had a blood test recently but as far as I'm aware it was just to check iron levels because she'd had a month long period. I'll ask at her next appointment

Pineapplesunshine · 14/02/2025 19:57

I think it depends what you are looking for from a diagnosis. Is it around treatment or fertility or something else? For me, i didn’t find it hard to get a diagnosis - the doctor quite quickly said they thought it was endometriosis, but then shrugged their shoulders in terms of what they could do about it. I was given pain relief and mefenamic acid - neither of which did much for me. Eventually, when I was trying to conceive - and went private - I got an internal scan which confirmed the diagnosis but showed no endometrium in any significant places for conception. So for me it was a real pain - literally - but having a diagnosis wasn’t especially helpful. I am hopeful things have improved since I first got diagnosed, but I think it’s worth going in with a good idea of what you are hoping a diagnosis will lead to. Best of luck.

Original poster

Lau2108 · 16/02/2025 10:11

Thanks everyone for the replies.

I was already expecting gynae referral and was going to ask for the scans in advance. I will ask for the inflammation blood tests while I'm waiting for the referral too. I know it's a long wait for non urgent gynae so it will be good if I can go there armed with some results and cut out a couple of waiting lists.

Unfortunately private isn't really affordable for me at the moment but I will keep it in mind once finances have settled down a bit.

OP posts:

Original poster

Lau2108 · 16/02/2025 10:17

Pineapplesunshine · 14/02/2025 19:57

I think it depends what you are looking for from a diagnosis. Is it around treatment or fertility or something else? For me, i didn’t find it hard to get a diagnosis - the doctor quite quickly said they thought it was endometriosis, but then shrugged their shoulders in terms of what they could do about it. I was given pain relief and mefenamic acid - neither of which did much for me. Eventually, when I was trying to conceive - and went private - I got an internal scan which confirmed the diagnosis but showed no endometrium in any significant places for conception. So for me it was a real pain - literally - but having a diagnosis wasn’t especially helpful. I am hopeful things have improved since I first got diagnosed, but I think it’s worth going in with a good idea of what you are hoping a diagnosis will lead to. Best of luck.

I think for me it's about long term management/treatment. I have a lot of pelvic pain affecting my hips and bladder related pain and issues.

Having said that, I am wary about going back on to the pill. Since having my second ds 2 years ago, I've realised the difference it makes not having artificial hormones pumping around my body and its nice to just feel like me. But we'll see what happens and how it goes. It would be nice even just to get on top of the bladder element.

OP posts: