Endometriosis & the Brain

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Krang, from TMNT, seemed appropriate for this one…

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).

Down to the nitty gritty science! (These studies can be accessed below in “Resources”):

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.

Resources:

American Journal of Roentgenology : 2014 (Article) Cerebellar Endometriosis

U.S. National Library of Medicine : 1993 (Abstract) A Case of Cerebral Endometriosis Causing Catamenial Epilepsy

U.S. National Library of Medicine : 1987 (Abstract) Cerebral Endometriosis. Case Report

U.S. National Library of Medicine : 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

27 thoughts on “Endometriosis & the Brain

  1. 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!

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  2. 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!!

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  3. 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.

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    1. 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. ❤

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  4. 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.

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  5. 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

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  6. 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.

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  7. 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?

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    1. 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

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  8. 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.

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  9. 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

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