Stage 4 endo diagnosis and delays galore

[Snaffles78]

I have had endo since I was a teenager but only diagnosed when I turned 29. I had excision surgery in 2008 which significantly relived things. In 2024, I approached my GP over issues around major bloating and excruciating pain on defecation. He prescribed me laxatives on repeat prescription and this went on for about 2 months. He finally referred me for endo investigations and I had the first app in Oct and an MRI in Nov. It took until Jan to get the results of the MRI which showed an endometrioma and bowel involvement as well as showing that my uterus, ovaries and bowel were stuck together. I was told that someone would be in touch to discuss next steps. I was offered hormones and the coil and I declined as I just want excision surgery. It’s April and I really can’t understand why the delay. Am I over reacting when I say I am really concerned they are not reacting to th me findings at all? I am also afraid that the endometrioma could be sinister. Should I go private or just be patient?

[Msunited Moderator Moderator]

I completely understand why you’re feeling this way.

Waiting is incredibly stressful, especially when it comes to something as important as your health.

It’s frustrating that long waiting times are so common, but that doesn’t make it any easier for you.

There's relatable information from Endometriosis UK that might offer some comfort and insight.

endometriosis-uk.org/gynaec...

endometriosis-uk.org/press-...

Your concerns are completely valid and you deserve to feel reassured.

Here’s all the support available to you

endometriosis-uk.org/get-su...

All the best

[Sunset-lady]

I'd ring the hospital and find out where you are on the list. The waiting lists are long. I waited almost a year to see a BSGE endometriosis specialist and that was after a failed hysterectomy when they discovered stage 4 endo. There was no sense of urgency on their part. I ended up seeing the specialist private then going on his treatment plan whilst waiting for the NHS appointment. You could do Right to Choose but you have stage 4 so nobody should be operating on you unless they're a BSGE surgeon trained in endo. Good luck x

[Scoutybob]

There won’t be any urgency sadly so you are going to have to drive this yourself. My advice is to be persistent and on it and advocate for yourself. This can be done without harassing, just letting them know you’re there and moving things along otherwise they stagnate. Where’s everything at now? Who gave you the MRI results? You need to push now for a referral to a BSGE centre. From here, you’ll be in a queue but the right place and the process will start.

I was in a very similar position to you. I had an MRI diagnosing a similar level of endo severity from a general gynaecologist in dec 2023. They referred me to BSGE centre but I had to chase this in. The referral happened in feb 2024. As soon as that happens you’re in their system and for me, I was told you’re surgery wait time starts then even though I didn’t get a meeting with my consultant to confirm surgery until June 2024. I had to keep in regular contact with the consultants secretary and ensure I was put on the urgent list due to really struggling with my symptoms and the severity shown on mine. The wait list is generally a year+ as a minimum. In the end, I had to complain to PALs after the year mark and got a surgery date v quickly.

I’ve just had my surgery a little over a week ago. My endometriomas are being biopsied but I believe this often happens when they are past a certain size. I have been concerned on this, the same as you. But the chances are still very small. It just raises your risk profile slightly.

So all in all I would say from your timescales you’re looking around next summer for surgery if you can get them moving. It’s so painfully slow but it’s worse if you leave them to it.

If you really know you can’t wait that long then you will need to consider private as you mentioned. Although I was advised to stay on the NHS pathway due to how involved the bowel was so I needed a large hospital trust in case of complications.

Sorry this was long. Hope it helps! X