Endometriosis stage 4

[Carla1982]

I was diagnosed with stage 4 endometriosis on the 20th of December last year.I have been in constant pain since September last year and am finding hard to get my head around this.

I was admitted to hospital in September with what I was told at the time that was a absess on my left ovary was treated with iv antibiotics and sent home with a 2 weeks supply of them.

Was then back in hospital in November and again was given antibiotics for the supposed absess .

In December was sent for a scan and was referred back to gynaecology as an emergency and was admitted for pain made and mri. Apparently mri showed endometriosis which has affected bowel and blades too.

Was sent back to my gp for him to refer me to a endometriosis centre. Have my first appointment on the 16th of February but don't know how mu h longer I can cope with the pain.

I am really after some advice I have been reading up on endometriosis and from what I have read the only way to diagnosis is with surgery. Can anyone help me clarify that the mri gave the right diagnosis please.

Any advice would be appreciated I'm tired weak and confused

Many thanks

[Lindle]

A diagnostic lap is no longer the gold standard for diagnosis and is considered outdated. It is correct to do imaging first, usually a transvaginal ultrasound which is very good for showing rectovaginal endo (if done by an expert). When deep disease shows it would be followed by MRI to ‘map’ the pelvis to show a wider picture to guide surgery. Deep endo can be in places that can’t be seen at a lap. So don’t worry, the MRI is the best approach.

[Carla1982 in reply to Lindle]

Thank you

[Reethi19 in reply to Lindle]

Hi Lindle, do you know if the recommendation to have MRI before laparoscopy is in any guidelines yet to reflect this change? I am in a similar position to you Carla 1982 but haven’t had MRI. It is good that you have been referred to a specialist centre, hopefully they can give you some treatment options. Let us know how you get on if you’d like to of course x

[Lindle in reply to Reethi19]

Yes it’s in the ESHRE guideline (2022) which uses the expression ‘outdated dogma’ for the diagnostic lap. That’s not to say it doesn’t have its place as when scans are clear the diagnostic lap would then be appropriate.

eshre.eu/Guideline/Endometr...

[Sunset-lady]

Hi, I was diagnosed with stage 4 from an MRI scan in December. I'd already had an abandoned hysterectomy where the surgeon was pretty sure it was endometriosis but couldn't say for certain as it was not his skill set. It sounds like you are having swift and very good treatment and you're not having to wait long at all which is great. I went private as the waiting list for the endometriosis clinic is 10 months to a year. I also paid for my MRI. Unlike you, I don't have pain just constant heavy bleeding. Good luck x

[Carla1982 in reply to Sunset-lady]

Hi. I'm sorry that the wait was so long for you that you had to go private. I have been in constant pain since September and currently have no quality of life.It's appalling that people are waiting for over a year for treatment especially because this affects life in so many different ways.

I've now had 2 prostap injection and has not made any difference to the pain.

How did you get on privately? Did you get treatment options?

Good luck and I will keep you updated once I see the specialist next month

[Sunset-lady]

Zoladex is the current treatment option. They need me to go through menopause. They don't want to operate because of the risks x

[Sunset-lady]

I'd recommend going private to anyone if they have the money.