Another rare location I’ve heard can be invaded by Endometriosis is our brain. Yep. Our gray matter. But, again, curiosity led me to find documented cases, symptoms, and treatments. So I’ve scoured the interwebs for just such a thing, but it was difficult to find much of anything! This is not meant to scare anyone, or to create an Army of Hypochondriacs. It’s meant to let everyone know that, yes, it does happen. And this is what to look for…and what can be done for it..
From what I can find (which was very, very little), it appears that symptoms may include headaches or seizures. As of 2010, there have only been 3 documented cases of cerebral Endometriosis (at least in English-language literature).
Let’s get down to the nitty gritty science!
A study published in the April 1987 edition of Journal of Neurosurgery was of a 20-year-old woman who had suffered from headaches and seizures for the past 3 years. CT scans showed a cyst on her brain, which was surgically removed. It was “a chocolate-colored cyst,” which was biopsied and discovered to be Endometriosis. I do not know if she had a previous, or subsequent, pelvic Endometriosis diagnosis.
In December of 1993, a study in Neurology was presented of a 31-year-old woman who suffered from repetitive seizures on the first day of her menstrual cycle. She underwent surgery to remove the lesions on her brain and was subsequently treated with Danzanol. Her symptoms were controlled. Unfortunately, the abstract doesn’t give any details, but intimates that the lesions were Endometriosis. Again, I do not know if she had a previous, or subsequent, pelvic Endometriosis diagnosis.
In June of 2004, the American Journal of Roentgenology published a study where a 40-year-old woman was suffering from issues with her gait (walking) and also headaches. She suffered from a condition (hydrocephalus) which built up fluids on her brain. When she was just 2 months old, she had surgery (ventriculoperitoneal shunt) to relieve that pressure, and had repeated this procedure multiple times throughout her lifetime. Her last procedure was 2 years prior to these new symptoms. She had CT and MRI scans performed to make sure that her shunt wasn’t blocked, causing fluid build-up and her new symptoms. They were not; however, the presence of a cystic mass was found on her brain. During surgery to remove the cyst, it was noted to be filled with “chocolate-colored fluid with flecks of yellow.” A biopsy of the mass met the criteria for Endometriosis. Her symptoms improved after the cystic mass was removed. A review of her medical history did not show any issues with infertility or pelvic pain. And, unfortunately, since her symptoms had resolved, she did not have a laparoscopy, and we may never know if she had any pelvic Endometriosis.
But how does Endometriosis end up on a brain, nearly the polar opposite of where it is usually found? Physicians and scientists have nothing but theories on the origins, inner workings, and migration of Endometriosis: 1) you’re born with it in your pelvic area (mullerian ducts, peritoneum); 2) retrograde menstruation may allow for the implants to travel throughout the body via the lymphatic or vascular system, or even through surgical manipulation; 3) a combination of 1 and 2; and 4) it’s a disease brought on by other issues, such as an immune deficiency. In the case of the 40-year-old woman with the shunt surgeries, they wonder if her shunt scarring was a pathway for the Endometriosis to invade her brain.
The authors of the 2004 study stated it best when theorizing how Endometriosis can be located in extrapelvic regions:
Although endometriosis is one of the most frequent problems in gynecology, its pathogenesis remains controversial and poorly understood.
My interpretation : dedicate more time, resources, and energy to truly understanding Endometriosis! Not only how and why it forms, but how to stop it…
Think you may have Endometriosis on the brain? Sounds like such a crazy notion…but if you’ve suffered from unexplained headaches and seizures, you may want to talk to your physician or get a referral to a neurologist, and have some imaging studies done to search for any masses or cysts. From what I read, it could be in sync with your menstrual cycle, or not.
(Updated March 25, 2019)
Resources:
American Journal of Roentgenology : 2014 (Article) Cerebellar Endometriosis
Neurology : 1993 (Abstract) A Case of Cerebral Endometriosis Causing Catamenial Epilepsy
Journal of Neurosurgery : 1987 (Abstract) Cerebral Endometriosis. Case Report
Journal of Laboratory Physicians : 2010 (Article) Endometriosis – Morphology, Clinical Presentations and Molecular Pathology
~ Again, I am a layman. I do not hold any college degrees, nor mastery of knowledge. Please take what I say with a grain of salt. If curious, do your own research 😉 Validate my writings. Or challenge them. And ALWAYS feel free to consult with your physician. Always. Yours ~ Lisa
Bloomin' Uterus 
I’m so freaked out by this! Super creepy.
LikeLike
Ubbbbber rare. But uber creepy, huh?
LikeLike
I knew a lady who had endometriosis in her lungs! It’s a horrid disease.
LikeLike
It truly is!
LikeLike
Wowsers, when our bodies go crazy they really do go crazy
LikeLike
My cousin developed endo on her bowel tract & it wrapped around it & blocked it & she has to have emergency surgery & a hysterectomy right before her bowel tract ruptured!
LikeLiked by 1 person
I am SO glad they caught it in time!!
LikeLike
This is so interesting! I did not know this at all!! I feel like this needs to be shared more!
LikeLike
My 17 year old grand daughter has suffered Endometriosis for 2 years. First in pelvic, then in lungs, and now they suspect it has spread to her brain. She has seizures, severe pain, coughing up blood. No one seems to know what to do!!
LikeLike
I am SO sorry! I’m hoping they can surgically remove any Endo implants or cysts in her brain. Please keep us posted on her progress. How terrifying it must be for she and your family.
LikeLike
I don’t know if I have endo in my brain but I have some weird symptoms I’ve had ever since I can remember. I used to get what I call black out spells. I could be walking and all of the sudden a sharp pain in my brain would occur (always the same spot). When this happened everything would go black for a few seconds and I couldn’t move. When I could see again it was like when you get stand up too fast and see rainbows.
This doesn’t happen anymore but I still get the same brain pain on occasion. I also used to have migrains often as a child but most people told me I was too young so I was never taken seriously. I’m almost 26 and I have the memory of an old person. I get tripped up a lot and have difficulty in retaining anything. Ovbiously there’s something going on just not sure what.
On top of this I also have all the symptoms for endo in my thoracic region. Definitely the diaphram and good chance for the lungs, symptoms are a lot worse during ovulation and my period. My pelvic region is covered in endo as well as it being present in my bowels. The gynocologist I saw said I was the worst case she had ever seen.
My hope is someday to see a specialist probably at the CEC for how extreme my case is. I feel like I’m deterioating fast and all that has helped give any relief is the endo diet. I wouldn’t wish this disease on my worst enemy.
LikeLiked by 1 person
I’m sorry it took me so long to read this! I’m glad that you’re no longer having the neurological symptoms! And please keep us posted if you are able to see an excision expert. ❤
LikeLike
My daughter-in-law has endometriosis in her pelvic area, and now they believe also in her brain. She’s only 28, fortunately she had her children before it got too bad, since then she’s had a hysterectomy ?? everything taken out that could be. Anyway she is in horrible pain, can anyone tell me how she can deal with the seizures and pain? She is on Obama Care/Medicaid. We live in Northwest Arkansas.
LikeLike
Please reach out to a neurologist. I’m not sure how Medicaid works for referrals to specialists, but she absolutely needs to seek one out. And ask for imaging studies of her brain. A search on this link comes up with 237 neurologists that practice in Arkansas that supposedly take Medicaid.
Best of luck and please let us know if we can help in any way.
LikeLike
So it was recently decided that I most likely have endometriosis on/around my diaphragm and possibly lungs. Several doctors agree and I’m just waiting on a surgeon capable of performing the surgery to be available(as well as with my insurance).
I have to wait for surgery because I recently started having neurological symptoms that the doctors feel would be made worse by use of hormones to suppress the endometriosis. I have Idiopathic Intracranial Hypertension(which means I have too much fluid on my brain), a new Cyst has appeared in the backside of my brain (it was not present in other Brain MRIs from before I developed Endometriosis in my pelvic area). I am also having head and facial pain. Thanks to a daily medical journal I keep I have now discovered that all these things developed and have been flaring with my Menstrual cycle.Now this could still just be hormonal related without endometriosis being involved but I think Endometriosis may be a viable cause.
Now to bring it up to all the doctors without having them deem me crazy. LOL
LikeLike
How scary. Be strong in your advocacy and please keep us posted!
LikeLike
My daughter had endometriosis and chocolate cysts the doctor said it could move to the brain and when it does life want be worth it.She is now having problems that might be related,she goes back to her doctor Monday to be re-evaluated.
LikeLike
Please keep us posted. And if it does develop on her brain, they may be able to remove the cysts.
LikeLike
It’s 2016 and I think I’ve had this for the past 15 years, both in my right lung and in my brain. Every couple of weeks, most often around menstruation and ovulation, over a span of about 36 hours, I experience several (1-6) weird, intense, 40second long, seizure-like events where I don’t lose consciousness but do have nystagmus (which makes the room spin). There are many other sensations as the experience is full body and really scary. Powerlessness for half a long minute at a time.
In 2002, I was diagnosed with epilepsy and so for the first 7 years, like a good girl, I took all different types, combinations & dosages of seizure meds – to absolutely no avail. In 2009 when my new neurologist (an epileptologist) saw first-hand one of my events, he un-diagnosed me from epilepsy, which left me the medical mystery I am today. Seizure meds are serious drugs with bad sides; they didn’t work because these episodes aren’t seizures.. I tried to tell them that.
It isn’t vertigo or inner ear related either; I had all the vestibular testing there is. It isn’t MS; I had the spinal tap which also ruled out brain cancer, Lyme and a number of other things. It isn’t my heart; I wore the 30day holter monitor, which even captured several events. My heartbeat increased yes, but not abnormally so for being frightened during the events, said the cardiologist who confirmed my good heart with EKGs and a tilt table test. In 2002 on a 2Tesla machine, my MRI was clear. In 2008/2009, several MRIs on a 3Tesla machine showed a spot on my right parietal lobe. No one said it was a tumor. They never said what it was, but that we should “watch” it. I haven’t had another MRI since so I don’t know, but my episodes haven’t changed much, if any, over the past 15 years, and that was 7years ago. My gynecologist did a catscan of my abdomen around that time to rule out a possible adrenal tumor since my spinal tap revealed a sky high cortisol level. Other than some endometriosis in an amount not uncommon for some women my age, she said I was all clear.
The only thing that ever stopped these weird spinning episodes was the depo provera shot which worked like a charm for 18months, but then for the next 18months it didn’t work anymore. Anyway, that depo shot is not good for us gals. Did you know they give that shot to male sexual predators in prison to curb their sexual appetite? When I saw a good lookin guy standing next to a tree and thought how beautiful the tree was, I knew I wasn’t right lol. So I finally stopped dumbwishing the depo would start working again and stopped taking it.
What has changed over the years of having these weird episodes, is my breathing. The day or two preceding the room spinning events, my right lung seems to leak or collapse, I don’t know for sure.. I don’t go to Western doctors anymore. When it’s happening I always think I should get to an ER (*yikes*) but I am so phobic of doctors and hospitals by now that I would rather die at home…not to mention my loss of faith in them after the 10 years of trial and error and testing with no final answers – that all broke me. So these days I eat right, all organic and such, and totally make a point of enjoying whatever I got left of life.
I have had a pneumothorax before, albeit 25 years ago, so I know what a leaking lung feels like. I have a lot of scar tissue around that lung where doctors back then botched me with a trocar & chest tube and then performed two major surgeries to try to fix their botches (now you know why I avoid ERs). I wonder if their pin up job on my lung isn’t holding up – or if perhaps endometriosis has travelled to my lung and set up shop there. One current theory is that endo migrates during surgery and likes to find a home in surgical scar tissue. Off and on for two days before my room spinning episodes, my automatic breather just checks out and goes on break – but doesn’t tell anyone, which leaves me frantically manually breathing my own self’s lungs, something I feel completely inadequate doing. I visually “sync up” with the rise and fall of your chest and try to gauge that how much air I’m breathing in, is approximately how much I’m breathing out. There is pain involved with this lack of proper lung functioning but the problem seems to always resolve itself by the time my spinning events are behind me a few days later. Then I’m good to go all normal again and enjoying life…unil the next bout in a couple of weeks. I think I am gonna post my case on crowdmed dot com. What do you think?
LikeLike
Holy crap! No wonder you fear ERs!!! You may want to talk to your gyno or PCP about the possibility that the watchful spot on your brain may be Endo. They’ll refer you to another neuro. More scans. Blah blah blah…if you have the energy : push for it. Otherwise, like you said, enjoy life as best you can. ❤ And yes, do CrowdMed. Keep us posted
LikeLike
I have been having seizures since April this year. First time ever. And in November this year I was diagnosed with stage 4 endo. At this point, no body can work out whether the seizures are related to the endo or not. But I only have seizures around that time of the month. About five years ago I had my second round of spinal surgery. My lumbar is fused. They put rods either side of my spine, screws into my spine and a plate. During the second round they removed all of the metal as I had lost so much weight that the screws were bruising my skin from the inside. I have been doing so much research to try and find a link between the endo and the seizures and I had read that in rare cases it can get into a persons central nervous system. I wonder (Im no nurse, doctor or anything medical) if its a possibility that due to having had spinal surgery that the endo may have gotten itself attached to my spine and be blocking nerve signals from my spine to my brain. I have recently had a zoladex impant, implanted which has put a stop to my pain, yet the seizures are still occurring. I intend to bring this up when I see my consultant for the first time soon I hope. The referral has been made from my specialist to the consultant. I find it very unnerving that these things are not taken more seriously. I have been in and out of our e.d many times this year with seizures. Thankyou enormously for this blog, if it werent for this blog, I would honestly feel that I am the only one that has thought of these possibilities.
LikeLike
Thank you, Emma. Hold onto that courage and bravery when you talk to your doctor. And please keep us posted. ❤
LikeLike
Thank you so much!! So grateful for the support and for your blog!
LikeLiked by 1 person
you not alone emma we hear for you
LikeLike
my name is leea i have had this for most of my life i am now 29 years old two years ago the doctor finally discovered it is endometriosis. last year my breasts became so painful it was almost unbearable the doctor said it had spread now for the past couple of weeks i have been experiencing such terrible and painful headache which let me in bed for weeks unable to walk i left terribly weak and my lips went numb and my head hurts so much nothing helps could it have spread to my brain
LikeLike
I just saw this comment, and while I don’t know nearly enough about this, I say there’s nothing wrong with a second (or third or fourth) opinion. I hope and pray that things have improved since you posted this.
LikeLike
I thought I was crazy to believe this might be a possibility, but things around my period have progressively gotten worse as I’ve gotten older (as I write this, I’m 32). While I started out okay, after an intestinal issue in my early 20s, my periods became increasingly painful to the point that now, unless I take painkillers, I can’t function for the first day. What’s more, now I’ve started having seizures and headaches around that time. I’ve had seizures for seven years and the headaches for the last couple of years, but in that time, only 2 (possibly 3, not sure) have occurred anywhere outside of my menstrual cycle (one of them being around ovulation). I wonder if I have endometriosis near my brain (possibly caused by retrograde menstruation while I struggled with the intestinal problems?) or if I just have catamenial epilepsy. My old neurologists (older men) always blew my concerns off as nothing, or at most, hormones lowering the seizure threshold, but since I’ve sought a new one who wants an MRI and sleep-deprived EEG, I’m going to make as certain as I can that it occurs during menstruation.
LikeLike
I am suffering of Endometriosis since 14 and.now I am 40 … Last year’s got brain pressure like, unclear vision, the worst sleepy ever… sleep and feel the same sleepy tired…. And all come arround ovulation, when before ovulating I am extremely sad, crying, irascible and is like I am a crazy woman, quarrel and yelling at everyone…. Unable keep relation with anyone including family, etc. Very false elsergized before ovulating and.once I touch day 15-16 when probably already ovulated, I feel exhausted of tired ! Black around eyes ! just like cancer ill person… Terrible sleepy… Very unclear vision, vomiting and unable go in any bus or car because feel brain pressure and instantly vomit in cars ! I done MRI and even professor Dr. first told me is brain ischemia, but then he arrived at the conclusion is Endo on brain which made lessons, kill brain cells, affected optic nervic……… I am desperate and cannot keep a job, a husband or friends because all no need such person who is ill all the time !!! Please help us ! The Dr. should be more trained on this issue !
LikeLike
I am so sorry, Karla! Did your doctor offer any type of treatment plan? Or a referral to a neurosurgeon?
LikeLike
I have had Catamenial Epilepsy for 19 yrs. Now I see that I really have endometriosis from getting my tubes tied 19 yrs ago when I had my daughter. None of the dr.s I have went to have told me the truth. They told me my hormones were messed up. My estrogen is too high. Yeah, it is but they should have sent me to someone else or gave me some progesterone. I WAS asking for it for years. Then I gave up and got brain surgery so I didn’t have to have 3 seizures a month anymore. That was 5 or 6 yrs ago. Now I have them every 3 or 4 months. They have always been while I am sleeping – except a few. None of the Neurologists act like they know that there is such a thing as Catamenial Epilepsy and they certainly don’t tell you that endometriosis could be causing your seizures and pain. Once you start getting that too. My lower back has hurt a couple times before. I didn’t know why and couldn’t figure it out. It gets two lumps sticking out above my butt. They are about 3 in across and kill.
Every time I bend over it kills me. This time my neck started hurting first and making some cracking and popping noises that go into the bottom of my head when I bend it back. My right shoulder blade also makes a bunch of cracking and popping right by my spine. My right boob is sore and gets sore every month and this month when everything else was happening I could feel and see an actual lump.
I can feel the difference between that one and the other one. I have got every problem you can have from it. People should be able to sue their Dr.s if they lie to them for ten yrs, dont give them the right treatment, or send them to someone else who knows how. If he was mad that I was going to a Neurologist instead of an obgyn then he should have sent me to one when he found out my tubes were tied or when I went to one let them give me progesterone because he wouldn’t. I had a partially collapsed lung from it too. I was able to open up my right nostril and get it to breathe, that made my ears pop and the pressure behind my nose and ears go away. Now I feel alot better. I didn’t even notice it before but I sure do after. It happened after I quit smoking so much. But anyways, I wonder how many women get Catamenial Epilepsy from getting their tubes tied? I don’t think I ever would have gotten it if I didn’t. No one warns you. When I was in the hospital for some of my seizures some of the nurses would touch my scar on my stomach from getting it done and say what’s that? I thought that was kind of weird because I was thinking don’t other people have scars there from it too? But I guess they were trying to tell me to check it out. The hospital was always asking me WHO my Neurologist was. They didn’t think he was doing his job is why. He only wants to see me once a year. He has been over billing me saying he has done a c section, heart attack, lung failure, collapsed lung of other things on me since 2015.
LikeLike
Thank you this is a great page!
LikeLiked by 1 person
I have had Catamenial Epilepsy for 19 years. Now I see that I really have endometriosis from getting my tubes tied. None of the dr.s I have ever went to have told me that getting my tubes tied can mess up your hormones. None of them have said go to an obgyn. When I did and wanted some hormones he didn’t want them to give me any. He said it wouldn’t do good with my new meds he put me on. He just wants to keep me as a patient. To keep charging me for whatever he could think of a heart attack and a lung collapse that I didn’t have. I did have a collapse lung, alot later, but he didn’t fix it. He tried to say he did a cecarian on me buy I have had my tubes tied since 2001. I should be able to sue him for lying about my health history and not taking care of me like he should have. He thinks they are all things that could have possibly happened so that’s why he is trying to get away with it. I have been going to him for at least 5 yrs because that is when the fake charges start in 2015. It has probably been longer though because it seems like my surgery was at least that long ago and I was going to him before then. He didn’t want me to have surgery. I had been having seizures for more than 10 years 1,2,3 a month from Catamenial Epilepsy. I went to 5 or 6 dr.s all any of them do is give you seizure meds. They ought to tell you the truth. I went up to Central Dupage hospital they have a womens Epilepsy or hormone section and my Neurologist never sent me to them in his same building and hospital. He knew that getting my hormones tested and worked on would help me but he wanted to keep me as a patient. He is a greedy loser doctor who doesn’t care about the health of his patients. Thanks for telling people about this. I never knew til yesterday!
LikeLiked by 1 person
I would have liked it if you put my comment on there. I have had this for 20 years now and THE DOCTORS DON’T tell you the truth about what is wrong with you. They all knew I got my tubes tied a year before all this started happening to me but not one of them even said go to an obgyn for it. I tried even but my Neurologist didn’t want her messing with my hormones too much. He told her what to give me. Every time I would take it the skin at the top of my buttcrack would get raw and peel off so I couldn’t take whatever she gave me. Women should be told that getting their tubes tied can cause serious problems. I love not having to worry about birth control or having another baby but not that my body has went through this for 20 years because of it. I really wish you would have put the last one I wrote up there. I told people how the Dr.s screwed me. Mayo gave me brain surgery for Catamenial Epilepsy after we went up there saying that none of the dr.s around here would do anything. I was having 1 2,3 seizures a month then. After surgery I have one every 3 or 4 months. I just had one this month with my neck, brain, boob, back by my shoulder blade, and by my ovaries all killing me. That was a week ago and my back, boob, back, neck and head all still feel it too. My lower back is killing. I can hear little crunching and popping noises when I tip my head back too. When I move my shoulder blade it makes the same noise. That is the tissue going up to those spots and bleeding. Then in the end it makes that noise. I told you thank you yesterday for putting this page up. Please post this one and let other women know that these things are happening. They let me go to Neurologist for 20 yrs. They NEVER told me to go to an obgyn. I needed my seizures treated I didn’t know what caused them but he did. He should have sent me to one. It should be against the law to not give your patients the right treatment on purpose. ESPECIALLY IF YOU ARE A SPECIALIST. He tried overcharging me too. He was mad mayo did my brain surgery a right temporal lobectomy and on my hypothalamus so he wanted to say he did something to me to make some money too. He even had me down for a collapsed lung surgery. He knew my breathing wasn’t good. After I quit smoking I was able to adjust my nose to get more air into the right side. When I did that my top left lung started to lift up and fill with air. I had to use my chest muscles to move it back and forth for a little while but now I can breathe better. My ears popped and I don’t have a ton of pressure inside my head anymore either. Now I can feel when the pressure is building back up and pop my ears. My head feels alot better. I really hope you put this up so people can see what a terrible thing it is and how the medical community pretends it’s not there. I was going to our hospital 3 times every month they couldn’t stand me. But NONE OF THEM would tell me what is really wrong with me either. They are all just out for 20 yrs of my insurance payments. They don’t care about my health. Dr.s only care about $$$$
LikeLiked by 1 person
This is very new to me. I have not heard of cerebral endometriosis before either and when I did a quick search I could literally find no information on this type of endo. This post is both educational and eye opening at the same time. Tell me about the symptoms then, I wish to learn more.
LikeLike
Unfortunately, there’s not a lot of info out there. But then again, it is considered exceptionally rare. Any symptoms I’ve learned of are included in the blog entry above. ❤ This disease always amazes me!
LikeLike