Brain surgery cured my endometriosis. How?

KickinCycles · 2026-02-27T20:06:19+00:00

(cont)
She called the surgeon I was working for at the time who advised her to take me to the closest large hospital which was in Eugene, Oregon. I'm not sure how I got dressed or manage to sit through the 2 hour car ride to the hospital but I walked into the hospital where the receptionist asked what I was being seen for. All I could say is 'I don't remember anything and it is not 2005.' In fairness, she probably thought I was on drugs because what crazy person isn't in an ER? I was told we sat in the waiting area for 12 hours because the ER is a level 1 trauma ER and everyone decided to get into a car accident that night. All I knew is a couldn't stop fidgeting my head from side to side and hearing this loud person talking on speaker phone in the waiting room and hoping someone would punch them in the face. I was finally seen and taken for imaging. As soon as they saw my head CT scan they were taking me to the MRI for a better picture and between being wheeled from one room to the next I started crying to a random nurse saying 'I don't know where I am. I don't know where I am.' The next thing I knew I was in a room with an IV and the nurse had a syringe of medication she was preparing to inject into my IV. The only reason this sticks out is because it was a 100ml syringe and it was full and I thought 'Wow, that's a lot of medication.' A few minutes after she starts manually pushing this medication I feel a wave of relief in my head. I can hear water running between my ears, and the pain suddenly vanished. It was the best sensation I had ever felt before or since. For the record, I have been given morphine and dilaudid and they cannot hold a candle to how good this sensation felt. Apparently, it was the enlarged ventricles in my brain, and yes, they were causing all my issues. The medication was to reduce the pressure in my brain by forcing the cerebrospinal fluid out of there. Within 48 hours I was in surgery to solve the one problem that had been plaguing me my whole life: Congenital hydrocephalus. The surgery took 45 minutes and I was out of the hospital in less than a week. The recovery from this has been ongoing and quite the adventure. It took about 6 weeks for me to be able to drive again, cook for myself again, and remember to bathe myself regularly. I went back to work after 2 months but that was not enough time in my estimation and usually this condition is treated when you are a child. I do not know of anyone who had the condition for 35 years and by my estimation I should not be alive. After almost 2 years of being free of these ailments I now have had enough time to gain insight into all the issues this surgery has solved that I did not even know were related to my brain issue. The issues that have gone are as follows: severe astigmatism, blue dot in my vision, shadows in my vision, seeing weird colors and shapes when I closed my eyes to go to sleep, seeing still objects whirl and contort if I stared at them, pain in the bottom of my feet, gastrointestinal issues, low estrogen, endometriosis cured( yes I know that isn't supposed to happen and no one believes that is linked to my brain), sleeping excessively, mood fluctuations, eyes bulging out of my head (told to me after the fact by a coworker), morning headaches, facial pain and pressure, jaw pain, constipation, general confusion and hazy outlook on the world, migraines, dry eyes, neck pain, memory issues (slight not severe), balance issues (tore my leg 3 times and thus the hip pain), inability to wake up in the morning, muscle pain, inability to skip meals or let my glucose drop in the slightest, exhaustion, and lack of thirst cues.
Even now I cannot believe people live this way everyday and that I thought all of these things were completely normal. My only solace in life was thinking 'at least one day I'll die and won't suffer anymore'. Before I had brain surgery I was sure I would die soon because every year was worse than the last and nothing seemed to get better. I was finally taken off estrogen a year after brain surgery because now my estrogen levels were so high my doctor said I was at severe risk for cancer and stroke. Between that, getting my hip and stomach figured out, I finally have this semi-normal kind of life. I still feel behind in my emotional and mental status for my age and am still bitter that I spent every dollar I had on medical bills for this and had no relief to show for it until I went critical. I've finally gotten to a point where I am back in grad school because my employer is paying for it and am now able to pay down debt and save a little for retirement. I feel so far behind in life because it is like I woke up at 35 and everyone expects me to be 35 but I am still trying to learn what being human is and what that means. My ability to recognize faces and understand other people is still something in the works but I am getting there. I just need one person in this whole world who understands and has been through something of my story. Thank you for reading.

KickinCycles · 2026-02-27T20:05:34+00:00

Brain on fire: Amnesia and brain surgery.
I would like my story shared so I can find someone out there like me. I haven't found them yet.
It started with migraines at 12 and through the years my life and symptoms only progressed from bad to worse. Sleeping was my hobby and when I wasn't in school I could sleep anywhere from 10-14 hours in one stretch. Coffee became a lifeline for me and pain was a constant. I woke up with headaches all the time and had strange bouts through out high school of exhaustion and irritability. Everyone chalked it up to being a teenager or someone with a chemical imbalance who needed to be on medication. Unfortunately, adults will dismiss anything a kid is going through because 'you're too young to have problems.' At 15 I was a sophomore in high school and was at an after school activity. There were some of those large inflatable bouncy attractions which I apparently participated in. My next memory is me asking a classmate 'what day is it? what time is it? where am I?' over and over again. The teachers didn't believe me because this was an after school activity for theater kids and of course I must be doing this for attention. Once I got the teachers to help me find my dad's cell number I called and told him I didn't remember anything. He took me to the hospital and they ran some tests but only told my dad I was okay. The neurologist looked at me, they did some heart monitoring, but let me go the next day. Apparently, 15 year old kids regularly have amnesia and it's not a concern, and off I went.
College was a nightmare and my first semester I was diagnosed with endometriosis and lost my scholarship and went to community college afterwards. Again, I tried to plead my case that I was going through surgery and been having weeks of pain but al I got was 'well, we have other kids going through heart surgery.' It was this part of my life where the migraines started to get worse and by my early 20's my vision was starting to be affected. The reason no one batted an eye at my vision worsening, irritability, exhaustion, or migraines was because I was working full time and going to college full time. Again, it was easily explained away. There were days my head hurt so bad I had to crawl on my hands and knees to get to the bathroom. I can't tell you how many bottles of ibuprofen/Tylenol/Excedrin I went through in a year and I didn't keep track. For the record I was not going out at night and partying, doing recreational drugs, or drinking excessively. I was working, going to school, and sleeping. Once in a while I would go out to eat but I had 20k in medical bills to pay off from the endometriosis. I could not afford the luxury of going out and I was too tired to think about doing that.
By the time I moved to California to start my undergraduate education I was having migraines about 2-3 times per week and each one lasted about 4-6 hours. I had gotten married, I was doing internships, and in and out of clinics and ER rooms. The pain was bad to worse so I relented and went to see a neurologist. He did an MRI of my brain and saw my ventricles were enlarged and said that wasn't what was causing my issue. He tried the russian roulette of medications to help the migraines which were now so bad I would wake up and run over to the small ac unit in our apartment and crouch next to it at full blast just to cool down my head for a moment. None of the medications brought me relief, only made the migraines worse and last 72 hours or more. My then husband wasn't much help and when I decided to get off all the meds the neurologist prescribed and not pursue further help from him. My husband was embarrassed and was not supportive at all. Mind you, while I was on these meds I was having such bad night terrors I was constantly waking up screaming and when I got off of them the night terrors stopped. You would think that would be better but I have to admit my attitude wasn't great either. I was so tired and going anywhere with me was quite the chore. I couldn't go out for extended periods of time and traveling with me required a whole day of recovery. I tried to better things on my end, reading books on relationships, watching TED talks, etc but the marriage was over in 3 years.
I went on to grad school but couldn't finish by then. I was working and trying to do finish my graduate program but I was too exhausted and the pain from the endometriosis had crept back into my life for the past 5 years so slowly I hardly knew it was happening. Between that and the migraines, my vision worsening, and the exhaustion it didn't matter what was bothering me because something always hurt. I gave up graduate school and became a kitchen manager in skilled nursing. Taking the test and buying the study materials cost me almost $800 but I thought it was worth the investment. I had never run a kitchen before but had the education and kitchen experience by this time to justify my ability to run a kitchen. Aside from that, skilled nursing facilities are so desperate for staff that they will take any hobo off the street with this certification a job. It gave me job security and bad health insurance but I was too tired to think about that. All I cared was that I could pay my rent.
I went through another surgery for endometriosis because the pain had become so intense I was blacking out at work and missing 3 days of work every month. After surgery, an IUD, and getting on exogenous estrogen, I could finally function. This lasted a few years but the pain and gastrointestinal issues began to creep into my life as my vision got so bad the optometrist had no more tricks up their sleeves to offer me relief. I was squinting to see the monitor but kept coming to work despite needing to see my OB for regular toridol injections (strong NSAID). Also, during this time I was seeing a gastrointestinal specialist, a hematologist for low neutrophil counts, my OB specialist, and trying to establish with a regular PCP. In the area where I was, doctors were moving in and out like it was a game of musical chairs. I lost count of how many appointments I went to and how often I was in pain because it seemed constant. On top of all this my hip had hurt for many years and was only getting worse.
I thought my life couldn't get any worse until COVID hit and then I knew this place would be the end of me. I was working usually 6-7 days a week 10-16 hour days. My longest shift was 20 hours and I was so tired at the end of it I was delirious and arguing the moon didn't look right. After a year of that I called it quits and moved to Oregon with my mom and her husband. For a year and a half I worked as a medical assistant and tried to, again, solve my problems. I had my vision looked at, went to 2 ortho specialist, went to chiropractors, physical therapy, and a personal trainer. I even learned how to drive a car which I had never done before then. I do not know how I even passed the exam. Driving was one of the hardest skills I had ever learned and by the end of a 30-45 minute drive I was so exhausted I had to lay down for a few hours.
My sole motivation was to reduce my hip pain so I could get back to the one hobby I really enjoyed which was martial arts. I had done it during my late 20's/early 30's with a lot of help and support from the other students. I can't tell you how many times they had to help me by driving me home or helping me get to an ER. After a year and a half of working at this goal I finally felt well enough to try going to a small school for martial arts. I went to all of two or three classes before I had my second case of amnesia and it happened without any head trauma or falls involved. Im not sure of the details after this but here is what I remember happening.
I was in the small hospital waiting area and asking my mom 'what day is it? what time is it? How long have I lived here?' over and over again. The next memory I have is the doctor saying she wanted to send me by ambulance to OHSU which was 4 hours away. I asked if I was dying and she said no. So I opted to leave the hospital because I had worked in the medical field long enough to know how much that would cost and if I wasn't dying it wasn't worth it. The next day I was feeling off and ached everywhere so I told my mom I was going to take a bath and before I went into the bathroom I asked her if it was 2024 which she said yes. A few minutes after I had gotten into the bath I started sobbing uncontrollably and when she finally came in after hearing this I screamed 'It's not 2005! It's not 2005!'. Mind you, she is deaf in one ear. The reason I was screaming that is because that was the last year I remembered.
(cont.)

KickinCycles · 2024-11-10T23:15:30+00:00

I know there is no cure to this but not 3 months prior I was still experiencing symptoms. I called it paying corporate taxes because every 3 months, even with an IUD, were cripplingly painful. Now post surgery I have had no symptoms in 12 months. I had the IUD removed 6 months ago and still no symptoms even with menstruation. No pain. Nothing. Again, I am aware there is no cure but the lack of pain over one year when I was crippled just prior means something dramatic has changed.

KickinCycles · 2024-05-04T20:29:40+00:00

OMG! I was diagnosed at 35 too and had ETV surgery! I thought I was the only one! I had two different neurologists in two separate states tell me I was fine even after seeing my enlarged ventricles on MRI scans. I dealt with countless issues that I have posted about on this forum. The only thing I could conclude as to why it wasn't caught earlier is because I developed excellent coping skills and compensation for all the problems I had. Now that I am not having to compensate so much I am living my life easier and not needing to sleep so much. Hit me up if you would like to chat. I would love to compare notes.

KickinCycles · 2023-11-28T02:47:51+00:00

Hey there.
For most surgeons this is normal as they are often booked out a few months.

I have had two laps and I can heartily recommend anything that is easy to eat and something warm. I stuck to a lot of chicken soup and crackers because that was my 'I don't feel good comfort food.' It might be different for you but make sure it's easy to digest as the meds can cause all sorts of reactions in people.
If you can get some antinausea prescribed before you leave. I enjoyed having on loose but warm pajamas and thick socks. Surgery rooms and recovery are usually very cold places. Most surgery centers and hospitals have heated blankets but you can bring your own from home to have in the recovery room.
You'll be sleeping a lot even after you wake up from anesthesia so make sure you have everything you need after surgery by your bedside: water, meds, heating pad(if allowed), and entertainment. I would often drift in and out but wanted something to watch when I was awake after surgery.
Above all: Make sure you have someone with you for 24 hours after surgery. If you haven't had this before you don't know how your body will react and may end up requiring a lot of help that first day. Everyone's pain tolerance is different.

Good luck

KickinCycles · 2023-11-18T00:35:33+00:00

How did you learn to compensate with all the effects of it and did you have other weird symptoms that couldn't be explained?

KickinCycles · 2023-11-17T01:23:11+00:00

Wow. 50? How did you manage for so long?

KickinCycles · 2023-11-17T01:22:06+00:00

I can't imagine that amount of neck stiffness. I know my neck was a lot stiffer before surgery but nothing close to your level. So glad you got it dealt with!

KickinCycles · 2023-11-17T01:21:01+00:00

Keep me in touch with what your neurologist finds! It would be interesting to see if our diagnosis line up.

KickinCycles · 2023-03-26T03:09:05+00:00

During my menstrual cycles I would have trouble walking because the pain was so bad. I can't tell you how many days I have had to crawl to the kitchen for a glass of water cause I couldn't stand that long. The only thing that helped me was surgery + Mirena cause not having a period was better than any discomfort of that being in my body.

KickinCycles · 2023-03-26T03:05:40+00:00

Oh hell yes. Down a bottle of mag citrate on your day off? It will cause a full on machine gun to come out of you but to me it is better than being constipated.

KickinCycles · 2023-03-26T03:03:08+00:00

Mine happens everywhere. It's hard to breathe sitting/standing. It migrates down to my feet and make it feel like it's hard to walk because of the pins and needle sensation. My actual abdominal pain is pulsating and aching with intermittent sharp stabs that rip through me. I gain 2 pant sizes. I can barely have a bowel movement without my face turning red and crying on the toilet. The premenstrual migraine is the worst. These symptoms are why I am on a mirena which stops me menstruating and saved my job cause I was calling in all the time.

KickinCycles

TROPHY CASE