Endo on the brain?

[cejay-wiffen]

I have undiagnosed seizures, blackouts and been diagnosed with migraines. I have been reading the endometriosis for dummies book which tells me that these are symptoms of endo on the brain. Does anyone else have this? X

[Impatient]

There have only ever been two recorded cases, so odds are you do not have endo in the brain.

Those patients did not have headaches or any problem with brain function other than it affected their gait or how they walked, their mobility in other words was impaired. And on scanning the brain a tumour was identified and surgically removed and found to be endo.

Whereas millions of men women and children have migraines and headaches, fainting spells, seizures, and fits. Much more likely to be bad luck in the health lottery than it being endo.

If you have fits or seizures then you should be chasing your GP to get you a brain scan to check if there are any bleeds or tumours causing them. It's a whole separate medical issue to having endo though.

[Hidden in reply to Impatient]

Recorded doesn't mean that those are the odds. Endo on the liver and diaphragm are supposed to be rare, as are the various migraines that I suffer from. Yet I have them. She may not have endo on the brain but anything is likely with endo.

[Impatient]

ncbi.nlm.nih.gov/pmc/articl...

gives you the statistics

[spice47]

Hi cejay, this is something that i keep coming back to when I think of how I have been over the last few years, I have had black outs, a seizure or black-out when I passed out in bed one morning and my husband had to shake me and call an ambulance, I then passed out in A and E when they tried to discharge me, and spent a night there with a big lump at the back of my head. I also passed out at work one day, and also at a gym, falling backwards each time and have never had an explanation for why this happened, and it only started after having a burst endometrial cyst 7 years ago. I have heard also that you can have endo on the brain, I also have a floater in my left eye, not sure what it is but the eye hospital has seen it, this also appeared after endo. I was told I had a brain scan by a neurologist once but he did not go any further with results as I told him at the time that I thought I was only having a spinal scan. It is definately something I wonder about xx

[Jillanovitch]

It unfortunately is like a lot of things to do with endometritis, never investigated...;0(

[edeym]

hi. I have had full hysterectomy years ago due to sever endo, but now I have had estrogen only hrt for 6 months (as GP and gynacholgist said endo wld all be gone years ago).. I have had weird very very severe headaches lasting days and it felt like it was 'attacking' my brain and thyroid area and now I have stopped and hormones fluctuating and diminishing I can def say its the estrogen that's been making me feel very ill. It now feels like its affecting my whole body as well as my head still , and wondering whether endo is bleeding/moving around as estrogen drops off and stops 'feeding' it..( I had to reduce the dose to get headaches and dizziness to reduce until went to zero dose. )

CAN ANYONE RECOMMEND an expert pref in Yorkshire area or anywhere else as not getting anywhere at mo.

[KetraD]

I literally just decided to Google this very question! My seizures began at age 6, I'm now 36, and I had the worst case of Endo my Dr had ever seen when I had my first surgery at age 14. I'm definitely looking into this. My seizures have been diagnosed and rediagnosed about ten times. I have migraines so bad lasting days and even weeks at times where I want to literally stab my brain with an icepick. When I had my first surgery for Endo I had just turned 14, my then gyno said it was medically impossible for me to have Endo and at that severity . I'm def checking into this asap!!!!!! Luckily I also moved to a state with much better health care than where I spent the first 34 years of life.

[KetraD in reply to KetraD]

Also I'm not in the U.K and considering I have GP, Endo, migraines and seizures I happen to follow UK medical blogs and journals. It seems you're doing much better at these areas than the US