Endometriosis UK
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Is their any link between endo and epilepsy and/or brain tumours?

Hi beautiful ladies! I'm recovering well from my lap, and having a lot of down time to research my recent diagnosis has led me to ask a few questions... As a child I had severe seizures for many years. It was later found that a benign brain tumour on my right frontal part of my brain was triggering the seizures. I've read upon many other girls who have epilepsy along with endo. Is their any known link or research going on between these two diseases/disorders?? I'm very interested to know. Is it possible that endo can cause tumours?

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I've heard of it infiltrating the brain causing migraines, disorientation, and sometimes even seizures during menstraution.

Were you born premature? I was and with a premature uterus, its believed that once a baby has fully developed all the misplaced tissues are normally taken care of. However premature babies have less time to do this so they're often left with the misplaced tissue. You can find the study about this if you google "Men with endometriosis"

Likewise benign tumours can show up for no reason, mine wasn't noticed till this year b/c my doctor thought I had a stroke from a pill and after my periods had neuro symptoms.

I know menstraul migraines are common in ladies with endo and my neurologist says their difficult to treat because of this.

Endo can heighten the risk for brain tumours and reproductive cancers all except cervical.

A benign tumour is a fancy way to say "non-cancerous growth" which essentially means it isn't cancer so a doctor doesn't have to worry about it or remove it unless if it starts to become an everyday part of life. So yes if you were premature it could be some random misplaced tissue in development. Or since your body was also prone to the growth of endo from your mothers side there's a possibility that other tissues could do the same thing. However unlike endo these tissues may not be hormonally activated, so they may be activated by something else. Have you discovered any triggers? The body uses hormones of all kinds to notify it what to do.

This is purely theory from studies I've read, mostly the one on males developing endometriosis when put on estrogen theory for reproductive cancers.

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Thank you Hannah, you really have done a lot to research this. I'm worried that if I ask my gynaecologist she'll laugh at me. It sounds silly, but my mother and I just really want an explanation to all of this. I hope you are doing well x

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Surely that's a question for your consultants?

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Yes I will be asking them too, but that doesn't mean they will have the answer. They are merely just gynaecologists - some people in this group do a lot of research on endo and things that link to it. I just wanted to know if anyone else on here has a brain tumour or epilepsy along with their endo... :/

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My mum has been worrying about it for a while and I just wanted to find other people out there like me

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I know it sounds silly.

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Sorry, I didn't mean anything by that. I hope you find some helpful answers to your question.

LBB x

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I apologise I'm having a bit of a bad anxiety day today - I'm not taking things the way I should be. Just going through a lot of emotions after my surgery :( x

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hi flower58, . i had symptoms of endo since the age of 19 but only diagnosed 2years ago after a ruptured endometrioma cyst and needed to have emergency surgery. I also had a left parietal meningioma brain tumour which was benign removed in 2001 at the age of 28. i was told it was a slow growing tumour and may be stimulated by hormones..i was told by the neuro surgeon to not ever go on hrt or contraceptive pill as this may stimulate regrowth. When i was diagnosed with endo i posted on this site to ask the same question and noone could confirm whether endo and meningioma tumours could be linked. I was only diagnosed with the brain tumour because i had a couple of seizures and then i had a ct and mri scan. I havent had any seizures since 2003 and my last brain scan in 2010 was normal, so dont have to have any more follow ups. i wish the endo was as easily treated. i had a lap in november last year and still have pelvic and back pains. you dont need to apologise flower58,feeling unwell takes its toll...big hugs x

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Thank you attummi1973 for your reply. I'm sorry to hear what you have been through! It's so hard living your life in chronic pain and everyone around you is able to enjoy their life to the fullest but you can't. I defiantly want to research more into endo and tumours, this is clearly happening to other people...I think its fair to say that we just want answers. xx

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No need to apologize for heavens sake.

If you can't come here and ( complain ) about your feelings then the board is not helping you

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Interesting! I also have Endo and controlled Epilepsy no seizures now for 15 1/2 years but still on meds as I was born with a cyst of some kind it's got a long name and off the top of my head can't remember iwhat it is called on my right temporal lobe. I also get migraines. Sorry I have no answer but just thought the question was good one.

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Very interesting! I'm very serious now about looking into this...theres clearly some sort of link going on.

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Interesting indeed. I was started on hormone contraception at age 14 because of severe menstruation (4 hours plus menstrual pain, rotational vertigo, etc). Now they know I must have had early signs of endometriosis at that young age. Then at age 31 I discontinued the contraceptives (after 17 years) to try & conceive a child. Upon doing so -- all sorts of things went wild (ruptured ovarian cyst, development of focal seizure disorder, crazy blood work (ie, exceptionally high IGG) and then a diagnosis of mystery brain tumor (2 cm mass) at age 33 (benign polyclonal plasma cell tumor). Then I went on long-term seizure meds and have been on depo ever since. During a short contraception break I promptly developed a 5 cm endometrioma, mystery ground glass opacity in lung and now have what appears to be atypical MS. My hunch is that the high IGG was caused by my body's immune response to the endometriosis. And as some literature states (b-lymphocyte stimulation).

Bottom line, hormone suppression of my endometriosis thru depo is the only thing keeping it all in check. Once I age out of depo....the next big bang is likely to hit. Perhaps time to get an appointment at Mayo clinic in the U.S.

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