endometriosis and migraine

Migraines More Common in Women with Endometriosis

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Endometriosis affects upwards of 176 million women worldwide – approximately 10% of the menstruating population. It is one of the more commonly reported diseases among followers of Hormones Matter, with most women reporting over 10 years of pain and suffering before a proper diagnosis.

Data suggest that at least a third of women with endometriosis may also suffer from migraines. Researchers from Italy found a significantly higher frequency of migraine  (38.3%) in women with confirmed endometriosis versus healthy women (15.1%). The onset of migraine was five years earlier (16.4  years versus 21.9) in women with endometriosis and more likely to be a migraine with aura.

The co-occurrence of migraine and endometriosis has only recently begun to be investigated and clues to potential common causes are poorly articulated. There is speculation that migraines cause endometriosis or that endometriosis elicits migraine. Neither has sufficient supporting evidence. The search for clear genetic linkages between migraine and endometriosis is promising but remains in its infancy.

Perhaps we’re looking in the wrong places. As we reported in Endometriosis and Neuropathy, rodent models of endometriosis, suggest a clear neural-uterine connection that initiates endometriotic pain in some but not all. Specifically, some endometriotic tissue sprouts nerve fibers capable of sending pain signals to the brain. Regardless of the cause of the initial endometriotic implants, it is certain that the dynamic hormone biochemistry of the female body would regulate or dysregulate neural firing and pain signaling. The pain of endometriosis though regionally different, could be mechanistically similar to migraine pain. Just a thought.

 

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Reflections on Becoming a Woman

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Endometriosis Symptoms began with Menstruation

I remember that day perfectly.  I was eleven, in the sixth grade, 4’8 with brown frizzy hair – in the midst of that awkward transition from girl to woman.  It was the first time that my Dad had taken me to the doctor (the pediatrician to be exact).  My dad – a sympathetic and caring man – quite naturally hated seeing his daughter in so much unsubstantiated pain. Usually both he and my mother would accompany me to the doctor, but today that responsibility was left solely to him.   As we sat in the examination room, him in a plastic chair and me on the examination table – feet dangling off the side, I remember hoping not for an answer but for validation, validation that my pain was real.

When I was ten I started getting these mysterious ‘stomach aches’ they’d come and go and with each one I’d go to the nurse and the nurse would tell me I had to stop avoiding recess, or gym, or whatever activity I decided to skip that day.  To be somewhat fair, I would usually go to the nurse during gym.  My doctor sent to the gastroenterologist several times, with no luck.  The gastroenterologist suggested that maybe I was lactose intolerant and that I should take lactaid.  No tests were ever run – I was told; “take lactaid and if it helps, your problem is solved.”  My problem wasn’t solved but I still took the lactaid hoping that eventually it would work.

So there I was – at the doctor, missing yet another day of school, with my Dad in his suit, missing yet another hour of work.  The door opened and in walked my pediatrician, disapprovingly muttering my name at the sight of me yet again, in her office.  We went through the steps, her feelings my abdomen, asking me about my eating and bathroom habits, the works… Except this time she seemed more exasperated than usual “Jordan” she said emphatically “You are like the little girl who cried wolf, there is no reason for you to be in this much pain.  If you keep ‘crying wolf’ one day you might actually be very sick and no one will believe you.  Don’t make me send you for a sonogram!”

How I wish I wasn’t 11 years old at the time and absolutely petrified of a sonogram; which I assumed to be some gigantic needle that would be placed through my forehead or some other awful place. Needless to say, I never got that sonogram until about a year later, when I rushed into emergency surgery for a problem that a sonogram could have picked up a year earlier.

Endometriosis

The average endometriosis diagnosis takes 7 years; fortunately, mine only took 2 ½.  The day I found out I needed surgery I had an appointment with an endocrinologist to discuss why I was so short.  I was born with a Ventral Septal Defect (VSD) – a hole in my heart- which took longer to close than expected.  For some reason, unbeknownst to my doctors, I failed to thrive as a child.  I was mentally advanced but physically I was in the 1st and 3rd percentiles respectively for height and weight.  I was very small.

I had gotten my period for the first time 6 months prior to that appointment. My period would come every 7 days and last for about 11 days.  When I did have my period, I would be incapacitated for the first several days, writhing in pain, unable to move from fetal position. My doctor told me “Welcome to being a woman, you must have a very low pain tolerance; it should get better within a year.”  Well, it didn’t. So there, at the endocrinologist, I laid on the examination table, curled up in more pain than usual. I was sweating and barely coherent.  My mom stood there wiping my forehead with a cold paper towel. The doctor walked in took one look at me and her face contorted with horror.  “What’s wrong” she exclaimed as she made her way over to examine me.  As she made her way towards me I jumped up and ran across the room, barely making it to throw up in the sink. My mom followed after me; “she has her period” she nonchalantly conveyed to the doctor, since this had become the normal routine in my house. My doctor took another look at me, shook her head at the insistence that I had been lead to believe this much pain was normal and called for an orderly to escort me to the emergency room.

Uterine Didelphys: Two Uteri

Less than three hours and one morphine shot later, I was being prepped for surgery.  Turns out my periods were so out of sync because I have uterine didelphys – two uteri (aka the plural of uterus). One of my uteri, was blocked and so when I would get my period, the blood wouldn’t drain, rather it would collect in my uterus. Every time I got my period my uterus would contract and try to push out the 6 months worth of blood that had collected in my uterus – to hold all of this blood and uterine matter my uterus had filled to what was analogized as the equivalent of being 3 months pregnant.  They removed the blockage and told me that was it, the pain would be over.

Except the pain wasn’t over and six months later, I was back in the hospital for exploratory surgery to try and find the cause of my pain.  After an hour long procedure, it was discovered that I had mild endometriosis.  My surgeon told me they removed all of the endometriosis and that was it, the pain would be over.

Except, the pain wasn’t over and still isn’t.  There is no cure for endometriosis. While surgery has alleviated some of my pain, it has not cured the disease.   I am 21 now; I have had 5 surgeries for what is now stage IV, recto-vaginal endometriosis that is working its way up towards my liver.  Altogether I have had 15 surgeries – 9 for my eyes and one to remove a cyst unrelated to my endometriosis. I know pain better than I know my best friend but not once have I let pain get in the way of my life.  I went to prom with a 103 degree fever, half delirious from morphine, with my clutch overly stuffed with pads and tampons. In addition to my endometriosis, I have a lot of auto-immune and digestive issues.  I am highly sensitive to yeast, I have thyroid disease, glaucoma, and I suffer from migraines.

I have a secret though, a secret for dealing with my pain.  Even though on paper, I might not be healthy; I live my life as if I were healthy.  I decided that I wasn’t going to let myself (or rather my body) stop me from doing the things I love to do.  Some days that is harder than others but it is all about positive thinking and motivation.  Your body is your temple; you need to take care of it.  I am a vegetarian, I do yoga and I try to love my body, even when it doesn’t love me back.  My rough road to womanhood has taught me strength and has given me the ability to stand up for myself and what I know to be right; and for that I am thankful.

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My Battle with Endometriosis and Migraines

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Twenty-Five Years for the Correct Diagnosis: Endometriosis

My name is Angela Wice and I am 35 years old. I had one child with natural birth in 2003 and was diagnosed with Stage IV endometriosis June 2006. My Journey has been long, depressing and still not over 25 years later. Here is my story.

 

Early Childhood and Early Troubles

I was a very busy active, athletic, child growing up.  I would say besides being born with jaundice, I was healthy until I turned 7 years old. I was rushed to the hospital because I started bleeding rectally. I was operated on within hours of being at the hospital for intestinal volvulus and appendectomy. They sewed my bowel to the pelvic wall so it wouldn’t happen again.

By the age of 10, I started to get chronic headaches and was told to stay away from chocolate, peanuts and cheese.

The Pain of Endometriosis

I got my first period when I was 13. The second time I got my period is when the pain started. I had the worst cramps ever, my legs would go numb, I was nauseated, I was bloated, and I was in so much pain I would vomit. I remember them saying that you should only bleed 1 TBSP a period and I was like “Are you kidding me, I do that in an hour!!”

My mother took me to the doctor the same year. The doctor did an ultrasound and a transvaginal one as well. The pain was so bad on the left side when she inserted it inside me but other than that nothing showed up but she did say that I possibly had endometriosis. That was at 14 years old, nothing was done about it. I was given Naproxen and that was that.

Endometriosis and Migraines

My first migraine happened when I was working at around 16 years old. My whole right side went numb including my tongue. I went to the hospital and they said it was an Aura Migraine.

By 17, I was far beyond constipated and the rectal pain I had was so severe and sporadic. To be honest, I never really put two and two together because I could just be driving and all of the sudden it felt like was being stabbed with a knife in my rectum. That never went away. It was constant.

I knew I was getting my period because I would, all of the sudden, not have constipation and I mean literally evacuate all my bowels at one time. That was my sign to start taking the Advil, and by the next morning or the middle of the night there it was. Sometimes if I didn’t take the Advil in time it was too late, nothing would work. I would pump my system with so much of it until my period was over. During my period I could not have a BM at all until my period ended. It was excruciating. I got fed up went to see a gastrologist. I had a colonoscopy and was told it was IBS, which I did not believe. That was the first of over 40+ doctors/specialist I was to see until I was diagnosed.

Endless Misdiagnosis

For the next 15 years it became a blur.  I was depressed, angry, frustrated, disappointed, rejected and in so much pain that never seemed to end.  I went to doctor after doctor only to be diagnosed with fibromyalgia, chronic fatigue syndrome, restless legs syndrome, thoracic outlet syndrome, TMJ, irritable bowel syndrome, chronic pain, cluster migraines, complicated migraines, neuropathic pain syndrome, overactive bladder, depression, anxiety and I developed an eating disorder (Bulimia).

I was at the end of my rope in 2006 and had another ultrasound only to find out my results were misplaced until I called 3 months later to find out that I had a 10cm complex cyst.  I was sent to an oncologist who took blood work CA125 to see if I had cancer. The first test done was 37 on my period and 78 when I was ovulating. He felt positive it was endometriosis and sent me to a local gynecologist who told me nothing could be done about the Endo and to take Lupron. I refused, as I had done my research. She then put me on Marvelon21 and sent me on my way. One thing changed for sure right away from taking the birth control pill and that was the chronic nausea was gone within a week, acne cleared up and my mind was right. I really felt like I got a new lease on life.

The Power of Patient Groups

I ended up on Medhelp and found a great group of women that to this day we still talk. We have a private group of about 20 women on Facebook called the BBBC (Bulge Battling Battalion Cysters). Some of the women had cancer, some were in remission, some had Endo etc. They were my support and still are, without them I would have surely not been here today.

I did my research and found the best Endo doctor in Ontario. It took 3 minutes for him to find the rectovaginal cyst that had caused me so much pain all of these years. I was in tears, tears of relief that finally, finally someone knew what was going on. He couldn’t do the surgery because I had previous bowel surgery so he sent me to his protégé and he operated on me a month later.

My story continues. More next week.

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