“No convincing evidence”

[EndoG]

I’ve just been told that I have “no convincing evidence of endometriosis” from my MRI results.

However my results were:

-uterosacral ligament fibrosis

- uterosacral ligament adhesions

- cervix displacement (to the right)

- vaginal and rectal adhesions

-enlarged ovaries

Is it just me or does this seem like fairly convincing evidence for endometriosis or at least further investigation?

Feel like I’m being fobbed off AGAIN! I fought so hard to get this MRI and when they told me what they found, I was so relieved.

But now they’re saying it can’t be endometriosis based on the results, and that I need to carry on with Mirena coil and just take the pill as well to stop the symptoms and pain. I’m concerned that I’d just be taking more hormones to mask the problem, rather than fix anything.

I’m trying not to go back down that spiral of thinking the doctors are right and I must be crazy/making it up.

[Moon_maiden]

Based on what you’ve said and mentioning adhesions you might need a second opinion. From my understanding MRI doesn’t show superficial endo only deep infiltrating. I was told the only real way to tell was laparoscopy.

Who gave you the results of MRI

[EndoG in reply to Moon_maiden]

Thanks for your reply! The results were given to me by a results phone line and then an endometriosis specialist nurse.

[Moon_maiden in reply to EndoG]

Not really sure what to say.

My diagnosis was slightly in reverse, I’d made a private appointment to discuss fibroids and came away with endo diagnosis and lap was the only way to confirm, although he was pretty convinced. Knowing what I do now, I’d ask for a copy of the report, you can get this through your GP as well as hospital, and seek another opinion. I’m not sure if what you’ve mentioned was told to you or you have the report. Have you discussed with GP? Maybe go back to endo nurse and ask what they mean by adhesions?

It might be worth calling the endo uk helpline for guidance.

On my MRI it said the uterus was pressing on the bladder. When I asked the endo consultant last week (different to first one) if they were stuck together with endo, he got a bit put out and said something like he couldn’t tell if there were adhesions. Didn’t like me using ‘stuck’ 😂.

[EndoG in reply to Moon_maiden]

Thank you, how do you go about getting a copy of the report? I’ve not seen it, only been told over the phone.

I hope you were able to get some support after finding out!

[Moon_maiden in reply to EndoG]

On the hospital website there should be a page to request records, mine said it can take a month. I got a copy from the GP surgery, give them a call, but they may need it in writing. I had to look up some terms. You do need to be prepared for seeing info you may not understand. I still found it useful.

I’m not sure the medical profession understand the term support 😂, GP has been better in the last week or so, but only because they keep screwing up and they know I have cause to complain.

[boboveena]

I would suggest see another gynae for second opinion or request for diagnostic laproscopy. That's the only sure way to confirm superficial endo that doesn't show up in scan or MRI. All my scans were normal. Perfectly clean womb. But I had all the symptoms. I fought with my doctors for a lap. Finally they agreed. When they opened up, they were shocked to see i had stage 3 endo. My womb was in a mess. Thus continue seeking answers if u feel that something is off.

[EndoG in reply to boboveena]

Thank you for your reply!

I’ll try and find somebody else to speak to! They don’t want to do a laparoscopy because they’ve said it’ll cause more adhesions and make it worse.

Hope you were able to get some support afterwards!

[Moonglo in reply to EndoG]

But it’s the only way to get a diagnosis. Oh my god don’t you want to knock their heads together!

[boboveena in reply to EndoG]

Yes. Right after my laproscopy, I was put on visanne for about 3 years. Just came off it last year as TTC. Hope you get some answers and everything works out for u