Stage 4 endo really sucks!!!!

[Swa_24]

Dear fellow warriors,

I'm 28 and I'm reaching out today to share my experience with endometriosis and to seek support from those who may have experienced a similar situation.

In 2019, I underwent surgery to address stage 4 endometriosis, hoping to find relief from its debilitating symptoms. However, it's disheartening to report that the condition has returned, as confirmed by the MRI results.

The report reveals a retroverted and anteflexed uterus with adenomyosis on the left side. It's disheartening to learn that there's extensive disease involving the adnexa, including a fluid-filled cyst on my left ovary and distortion of the right ovary. Moreover, there's concerning involvement of the left ureter and bowel, accompanied by extensive fibrosis and distortion in the posterior pelvis, indicative of endometriosis.

The frustration mounts as I await surgery through the NHS, enduring my third course of Zoladex in the meantime. It's been two years since I've been waiting for this second surgery, and the uncertainty and pain are incredibly difficult to bear.

If you've navigated a similar journey or have any advice or words of encouragement to share, I would be immensely grateful. Let's lean on each other for support during these difficult times.

Sending strength and solidarity to all who are battling this relentless condition.

[fed_up_of_endo]

Swa, I am with you.

The realisation that endometriosis has come back after surgery is absolutely heart-breaking.

There's nothing worse than knowing how much easier life can be after a few hours of surgery but it not being accessible and still runs the risk of it returning. I completely empathise with you on a waiting list myself.

I wish I could offer more than empathy here, but solidarity will have to do I'm afraid. It really does suck.

Hope you get your date soon. x

[Contra21]

If I may ask, coming here to look for answers, how is endometrosis diagnosed? A scan? I'm having no pain every with my periods up until last month, and not just on my period everyday. So sorry with what you are going through, you will get through this ❤️

[Swa_24 in reply to Contra21]

Hi Contra21 Thanks so much for your kind words. Endometriosis is usually diagnosed with ultrasound these days and ofcourse if you have symptoms you can let your healthcare professional know. I don't hope any one to suffer from this state ever 💟

[Contra21 in reply to Swa_24]

I had a vaginal ultrasound and just a small fibroid.. I read operation is needed to diagnose?

[KittyTherapy in reply to Contra21]

Hi,

I think imaging like ultrasound and MRI can show suspicion of endo but as scans can miss a lot and be misleading- often diagnosis is given after a exploratory laparoscopic (this was the case for me anyway)

[Swa_24]

modern sonography can reveal endometriosis and its underlying complications could be further analysed by an MRI. Operation(lap is performed these days to remove the lesions/adhesions) My endo was diagnosed through ultrasound/MRI.