Stage 4 endo really sucks!!!!: Dear fellow... - Endometriosis UK

Endometriosis UK

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Stage 4 endo really sucks!!!!

Swa_24 profile image
2 Replies

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.

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Swa_24
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fed_up_of_endo profile image
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 profile image
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 ❤️

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