I’m so fed up

[MegVarny]

I am just at Guys Hospital and have met with Professor Rymer. She told me that she wants to book me in for an operation and I’m having my pre assessment checks now which is all good. However, I had my MRI results back and it’s only shown PCOS which I knew I had. I asked her does that mean the Endo isn’t there anymore (I was diagnosed 5 years ago) and she said not at all, and the only way to check for the disease is through laparoscopy. I couldn’t help but break down in tears as I just find it all so exhausting and frustrating. Do you ever feel like your going crazy? Like your just imagining all of this pain? I actually wish the MRI showed Endometriosis so that it could give me an answer but now I’m wondering what happens if she does the operation and can’t find any Endo? What does all this pain explain? Can you be diagnosed and then all of a sudden it’s gone? Surely not. My symptoms have only got worse over the last five years. Pain during toilet movements, stabbing pains up my vagina and bum, massively increased pain during ovulation, on top of all of the other symptoms I’ve been having for years. I’m so exhausted with it all. I’m sorry for the massive post I just needed to rant. Has anyone else ever had clear MRI results but Endo was found during an op?

[Rorydog10]

My MRI, Multiple CT scans and ultrasound (including internal) all came back clear and then at surgery I was diagnosed with Stage 4 Endo everywhere! Bowel, bladder, Ureters, Uterosacral ligaments, Rectovaginal nodule, appendix.... and many more places. So please dont be worry that your MRI has come back clear. Endo is sneaky and still the only way to truly diagnose it is through surgery. Xx

[MegVarny in reply to Rorydog10]

I have heard this happen to a lot of women as well. I have just been fobbed off so many times since diagnoses that it puts doubt in my mind. I’m really hoping she can find where the Endo is growing and her it out xx

[Rorydog10 in reply to MegVarny]

I fell the same, had my diagnostic surgery with a general gynae. No under a Nook doctor and worried that when he operates he wont find anything even though it has obviously been found at surgery before and not removed!

I think because we are told so many times everything has come back clear and that the pain is in our heads you start to doubt yourself, even when you have a confirmed diagnosis!

Stay strong, have the surgery and hopefully start to have a better quality of life again x

[MegVarny in reply to Rorydog10]

Thank you, you too!!xx

[luthien]

I didn't have an MRI as my specialist said there's no point as it doesn't always show. I did have an ultrasound to check for PCOS first and that found a few fibroids but no PCOS.

I had my lap and they found lots of endo, had it excised at the same time.

Worrying about the lap results is understandable, just try to focus on a few things:

If they find endo request to excise it in the same lap (means you don't have to wait)

If they find other stuff such as cysts they take biopsies

If they can do a hysteroscopy at the same time (camera in vagina through to uterus)

Remember if there's no endo it's not in your head, you still need answers and support on what to do next xx

[Laumcd]

How are you getting MRI’s I desperately want one to check for adeno but because my uterus looked normal during my lap they don’t want to investigate further but I’m still in so much pain and you can’t see adeno anyway unless on a MRI so it doesn’t even make sense?

[anaulke]

I just had ct scanand it showed little endometrioses, however I insisted to have a lap.

I just had my excision Monday at St.Thomas Hospital and they found endo stage 3, my bladder was full of it.

I am recovering right now and I am glad that I did the laparoscopy even though they wanted treat me just with medicines.

Please, go ahead with the surgery it is the only way to really get a diagnose and get away of it.

I see the surgery as a miracle and a blessing in my life because I couldn't live with the symptoms anymore.

PS: St thomas and guys hospital have specialist in endometrioses. I had my lap with Dr Holland. Maybe you can ask to see him.

Be brave!