Silly question maybe...

[Lilou78]

Hi all,

I had surgery 7 years ago to remove an massive cyst on my right ovary. Went for just a day surgery to have it remove by keyhole surgery but as I had 5 cysts and loads of endometriosis, I had a c-section.

I had no support after the operation so it was a real nightmare. I was put on the pill non stop for 2 years 5 months after the op when my body said stop (palpitations, how flush etc...) since then I've been told I've got another cyst.

My GP is not interested. I saw the specialist 2 years ago who told me that I don't have endometriosis as it'

[Lilou78]

Showing first post! Lol not sure what I'm doing!

So the specialist told me that I didn't have endo because my scan was clear. Went for a scan again last month the girl told me the same thing.

Am I right to think that endo doesn't show on the scan reason why at my first op they didn't know I had it???

I feel I've got no support. I was told that I can't have kids after the op etc but no support. I'm starting fainting again due to the pain etc but feel lonely as nobody cares!

Sorry for the long post 😔😔😔

[Deb1511]

Hi Lilou

Sorry to hear you having a tough time. Hugs for you, it's awful and some doctors are clueless and simply don't care, I'm lucky to have a good doctor whom is very helpful though think this is cause she used to do gynea work, have they done a laparoscopy? I was told this is one of def ways to diagnose, I've had four MRI scans and it showed up on two my third MRI was only done Thursday so yet to hear what's going on now, are they going to remove this cyst? Xxx

[Lilou78 in reply to Deb1511]

Thanks, I was starting to think that maybe I've gone mad and maybe you can see it with a scan. They don't want to operate for the scan as I had an op already but it's completely nuts! I'm changing GP to see if it gets better. Will see!

[Deb1511 in reply to Lilou78]

If they told you you have endo when they removed the cysts it can't just have disappeared, did you have any treatment on the endo? Xxxxx

[Lilou78]

Nope nothing 😔😔

[Private70]

Someone asked about hysterectomy I had mine after 2 sons - it's great to not get menstral but being in 20's without children if u someday wanted I try other attempts. Even that said endo does return for life have discomfort but I wish you the best GOD bless as he helps with pain and cures. Call out for healing

[soapboxpudding]

Per my radiologist father-in-law, remote sensing imagery like MRI and CT scans are not all that effective in identifying endometriosis.

I had both in addition to ultrasounds, which only picked up the 5cm endometriomas in my ovaries so my surgeon wasn't expecting much from my lap. When I woke up after 3 hrs of surgery he told me "It was a real mess in there". I had stage 3 deep penetrating endometriosis and he said cutting into my peritoneum was like cutting into a normal piece of wood and finding out the it's completely rotten.

So keep PUSHING HARD for them do to do a lap. I suggest reading and quoting medical journal articles that highlight the limitation of imagery in detecting endometriosis to back up your argument. Good luck.