Don't Dismiss Those Migraine Symptoms

By Katrina Martin

3 min read

Migraine is a common comorbidity with endometriosis. In fact, a 2021 National Institutes of Health study shows that nearly thirty percent of women with endometriosis (The study only included cisgender women, as far as I can tell.) also have migraine, and that folks with migraine are 4.6 times more likely to have severe endometriosis.¹

For decades, I thought I just had really bad headaches (kinda like when someone says endo is just really bad cramps). Eventually, (mainly because my mom has migraine) I started calling my truly horrible headaches migraine headaches because they were debilitating. And I didn’t seek out a doctor; I just tried to push through them.

Migraine is more than headaches

Now I understand that believing the headache symptom of migraine is the entirety of the disease is incorrect; migraine is actually a full-body disease. It can affect your bladder, joints, brain, gastrointestinal tract, sinuses, and ears, and cause a wide range of symptoms. Migraine has four phases: the prodrome, the aura, the headache, and the postdrome. Long before the headache symptoms arrive, people go through other symptoms that can signal the attack is coming. This is called the prodrome.

My signs are dropping things frequently, my skin feeling extra sensitive (when it hurts for my bare arms to touch things, I know a headache is coming), my eyes drooping, and severe fatigue. Before diagnosis, I didn’t put these things together. I thought they were merely things that happened to me now and then.

Doctors downplayed my migraine symptoms

I’m thankful that I finally pushed to get a neurology appointment in 2021 (and, as these things go, I didn’t see a neurologist until 2022). However, I’d talked about my headaches with many practitioners. Most recommended NSAIDs and rest, and sent me on my way. They didn’t bother to ask if I developed sensitivity to light and sound before my headaches (yes), or if I had tracked what generally triggers my headaches (Dehydration is my top trigger, followed closely by exposure to strong chemicals or fragrances.).

I have known for at least twenty-five years that perfumes, colognes, laundry detergents, fabric softeners, and any kind of fragrance plug-in or spray makes me feel horrid within minutes. But when I would share that with my doctors, they would tell me to avoid those things if I could and didn’t offer any other solutions.

Endo pain distracted me from migraine diagnosis

It wasn’t until I filled out an extensive questionnaire for the neurologist that I began to realize how seriously my symptoms affected me. Before seeing her, I didn’t know that I was having up to thirteen headache days a month, that I had a large handful of prodrome symptoms, and that, by definition, migraine was a disabling condition for me. I’d been limping along for years trying to manage while suffering quite a lot. But, at the time, my pelvic pain and loss of mobility figured larger in my world than the headaches.

I didn’t know I could feel this good

Within the first five minutes of my appointment with the neurologist, I had a diagnosis. She told me she was shocked no one had ever put the pieces together and she didn’t know how I was managing life with such debilitating symptoms. Her surprise gave me pause. I had no idea how much better I could have felt all those years if my condition had been diagnosed earlier.

She prescribed a triptan, which was too intense for me the first time I tried it; I popped it and fell asleep fifteen minutes later. I am not a napper. So, I didn’t try the triptan again. But she also recommended a regimen of magnesium that radically reduced my attacks. Last March, I had thirteen migraine attacks, but now I have only one or two a month. I don’t lose work because of attacks. I am able to keep many more appointments, and as long as I keep my hydration in check, I can be guaranteed long stretches without attacks. My main struggle now is remembering to drink electrolytes and take my electrolyte supplements. I’m certain if I can build those habits, I’ll have some months without an attack.

Awareness is key

See your PCP or a neurologist if you suspect you have migraine. Read up on all the symptoms and the different ways migraine auras present. If you see yourself in even a fraction of the symptoms, talk to someone. There are an abundance of migraine medicines on the market, as well as a variety of products to help manage the symptoms, and you might well have an experience like mine where, once you’ve gotten a diagnosis, you’ll be able to get some of your life back.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Endometriosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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Tamien Elder Member
Thank you for sharing your story! This was very insightful and causes me to think about my experiences with extreme headaches.
1. Katrina Martin Member
 <inline-mention username="Tamien Elder" user-id="6912952"/> I'm glad it helped!
doriangray Member
Thank you for sharing this story. I’m curious if you found a good solution or solutions to your migraines. I had excision surgery one year ago and have been working with a neurologist for some time now to get the PMS/PMDD and migraines under control. Mine coordinate with my cycle. I get them from ovulation on. Some last 15 days! I have tried a bunch of medications and now Botox (fingers crossed). Wondering what can be done on the hormone side of the equation to help? I have a progesterone only IUD which probably isn’t helping the migraines, but helps the period/endo pain. I’m curious most about treatments for migraines for people with endometriosis. Thank you! 
1. doriangray Member
 <inline-mention username="Katrina Martin" user-id="4270344"/> Thank you so much for the detailed reply and great advice. It’s funny you mention seeing if my neurologist and GYN could have a chat, as I’ve been trying to make this happen unsuccessfully, haha! Why is there so much resistance here? On a positive note, I have recently experienced great success with Botox as a preventative for migraines and Ubrelvy as a rescue. I also, was just prescribed a progesterone only pill I’m going to try out. I used to experience auras in the beginning (20 years ago) but no longer do. It seems doctors are still hesitant to prescribe me estrogen…which I think I quite need at the moment as I’m also perimenopausal. Things are looking promising. Thank you! 
2. Katrina Martin Member
 <inline-mention username="doriangray" user-id="9816371"/> Ugh, I know...why are doctors so resistant to talking to each other? It's so important for complex illness patients. I'm glad to hear Botox is working well and Ubrelvy as well. Hope it continues to go well for you!
CommunityMember12c793 Member
I had my first migraine when I was about 10 years old. I knew it was a migraine before it started hurting because I described the colorful flashing light I saw. My mother and older sister knew exactly what it was because they had experienced the same thing, or very similar. They told me I was going to want to lie down and try to sleep, but I was a little excited and it really wasn't bothering me yet, so I wanted to keep playing or just observing for a little while. I don't remember how long it took for the headache to get bad enough so I didn't want to try to do anything but sleep. Sometimes if I got to sleep soon enough after the lights and the beginning of the headache, I could ward off the vomiting part. Usually I had to get out of bed and go throw up multiple times. I never thought of asking to talk to a doctor about my migraines. Maybe it was partly because I didn't need to be told what was happening, but I think it was mostly because I was a kid, and I didn't think it was my choice. I didn't make my own doctor appointments. By the time that I had any say in where I went or when, I had been having migraines for years, so it wasn't urgent or new, and I didn't expect the doctors to do anything my mother hadn't done. One of my sisters had a prescription specifically for migraines. I don't know if her migraines were worse than mine or if I just didn't complain to the right person at the right time. There were times when I was not sure I was having a migraine until afterwards. One time I was at school with a migraine all day because Dad was out of town for work and Mom had taken my 2 youngest siblings to doctor appointments that day. We didn't have cell phones yet, so there was really nothing I could do to contact them, and I'm not sure they could have done much to help me if I could have contacted them. I had to ask my first period teacher for permission to go to the bathroom and throw up. After that she let me go to the school nurse. I stayed in a small dark room, trying to sleep for most of the day, but I was too distracted to sleep much. By 7th period, I was not throwing up anymore, and I was so bored that I decided I might as well join my PE class before gathering assignments from my other teachers and getting on the bus to go home as usual. I don't remember if I had asked to stay home that day. I am pretty sure I had a headache before I got to school, but I often did, and I was often told I had to go anyway, because I never wanted to go to school. When I started having periods I had other things bothering me that I just had to deal with. I often had bad headaches while on my period, but usually that wasn't as bad as the other pain. Nobody suggested talking to a doctor about that either. I figured it was just something women had to deal with. People didn't talk about menstruation much, especially in mixed company. For most of my first period Mom was busy taking care of my baby sister who was recovering from heart surgery. I was expected to complete my Christmas shopping, even if I had to run to the bathroom in Toys R US to throw up. I told Dad about that, and he wasn't entirely unsympathetic, but didn't understand what I was going through, and didn't do anything about it except to comment something like, "no wonder it was so hard for you to focus on choosing presents!" The other kids still needed to finish their shopping, so i couldn't go home, and I had to go back out the next day with my oldest sister to finish my shopping. After that, most other period experiences didn't seem worse, so why would I complain later if I didn't get any help the first time? I don't remember if I ever saw any doctor for anything besides an emergency strep throat test from that time until I had a physical test was required for a coue of volunteer jobs I did at age 21. The PA who did most of the only compete physical I remember ever having referred me to a gynecologist because I was not sure how normal some if my experiences were. That gynecologist mostly just checked everything and said things were "normal". The next 3 decades continued many of the same challenges and more. I had to figure out where I could get health care without parental insurance after being diagnosed with depression for the seccond time, about 10 years after the first time, ehen nobofy told me what my diagnosis was. I thought thry were primarily concerned about ADD because they seemed mos concerned about my school performance. I had frequent changes of primary care providers if I even had one specific doctor. I learned on my 23rd birthday that I would probably need to take antidepressants every day for the rest if my life, and probably should have had them for most if my life before that. Doctors who didn't have or take much time to get to know me typically wanted to throw medicine at a problem without really discussing it much, or had generic advise. Eat less sugar. Exercise more. Give your egg yolks to the cat. Here's a free neti pot. I did get iron supplements a couple of times, because routine labs showed i was anemic. I tried taking "birth control" pills purely for period control. It did help. They didn't all have the same advise. I think most had particular things they said to most patients. I asked for a physical exam once. I asked not to have my usual provider, because she tended to dismiss or downplay my concerns. When I showed up for my appointment, she saw me and assumed I was there as a walk in patient. She told me not to come back for at least 6 months unless I had a new urgent problem. I had met her previously when I was being treated for irritable bowel syndrome in a study testing a new drug. I learned from that study that it is OK for me to take medicine for constipation even if nobody tells me to. I had that problem my entire life too, but my parents didn't notice becsuse i was the 3rd of 6 kids, and did not smear feces on the bathroom wall like my brother. My IBS symptoms had a definite pattern that was clearly related to my menstrual cycle. When I returned to the clinic after 6 months, I think the nurse who remembered me from the ibs studies was no longer working there. I had to start over with paperwork as if I was a new patient at the clinic, because I hadn't been there in 6 months, as requested by my assigned pcp, who would not allow me to see another provider. I was diagnosed with alopecia, and that felt good. Anyone could look at me and see that I was missing a lot of hair. It took my mind off of other things that other people didn't notice. Sometimes they would look at records and say I was due for another gynecologist visit, but all they ever did was the basic screenings. I still didn't know if what I experienced was "normal". Once I got a letter saying I was overdue for my anual physical. I thought that sounded like a great idea, but assumed they really only wanted the gynecology screenings again. I made an appointment to tell my pcp about the letter. She made me an appointment with a nurse who did some of the gynecology stuff for that clinic. I was instructed to get undressed when I arrived for that appointment. Then the nurse came in and said I was not yet due for those screenings, but she could look at my skin while I had my clothes off. She gave me a paper with questions to check about various symptoms and medical history. I noticed that they don't recommend birth control for people with migraines, and I was getting close to the age when they are more careful about it, and my blood pressure was starting to get close to the level they didn't like. I told her the story about my first migraine and how at 10 I thought the light show was kind of fun. She laughed because "A ten year-old would think that was fun." She told me to skip a pill and come in on Monday for a blood test to see how close I was to menopause. I went in on Monday, but forgot to bring the paper with her handwritten note. She didn't remember ever seeing me before, let alone scheduling labs. I told her the same story about my first migraine. She laughed again, exactly like before, as if she had never heard it before, but she did let me do the labs. I was not very close. As of today, I am apparently still not there. I decided to stop taking the pill because she said she fies not recommend it fir people who have migraines. I don't know if migraines are on my official medical record. I have had fewer migraines as I get older, and there have been times when I have gone months or maybe even years without one that I was sure was a migraine and not something else. I am always sensitive to light. I am always sensitive to noises. When my regular pcp was on maternity leave I got to talk to a substitute doctor on the phone only. The substitute ordered labs and determined I was anemic. She had me taking iron 3 times each day along with vitamin C. When she said something about finding a cause for my anemia, I told her I had suspected endometriosis for as long as I have known what it is. She requested an appointment with a gynecologist for me. She got to give me the results of the Cologard test my regular pcp had ordered, because I had to wait at least 2 weeks after receiving the kit before I could do it. The instructions say not to do it while bleeding. I had been experiencing sciatica and pain and/or tingling in both legs, but i was not allowed to do any MRI scans until after I had xrays and did some time in PT. At first i thought the sciatica was menstrual cramps, because it felt almost exactly the same to me, except that I also felt it when I was not bleeding, and eventually almost all the time. I went to urgent care thinking I might have a kidney infection, because it had been so bad Iwasn't sure I could stand or walk without falling. The substitute doctor got to tell me the results of my MRI scans. She started making arrangements for me to consult a dedicated spine surgeon as soon as possible. She also sent me for an urgent upper abdominal ultrasound because the report said I had masses in the adnexa. I remember her using the word "adnexa" and guessed it was another word for "adrenal", because she also said they were the glands on top of my kidneys. My kidneys looked OK. I transcribed parts of the reports in a chat with my sisters. One is a psychiatrist, so she remembered from medical school what "adnexa" really means. I had to tell the doctors and get a much more invasive ultrasound to discuss with my new gynecologist. The gynecologist proposed a diagnosis of adenomyosis partly because that tends to hurt more than most endometriosis. I showed him my calendar with all butb 7 days of the previous month marked with red. The bleeding had been especially heavy for about 8 days in a row That was bad evrn for me. I did have masses in both ovaries and in my uterus. I don't know how long they had been causing problems, but my guess is about 37 years. The gynecologist wondered why I was seeing him for the first time when I was almost 50 and all of this might be over soon anyway, but he listened, and it was so much easier for me to talk when I was fully clothed and he had test results to look at showing anemia and masses in my reproductive organs. He described several different treatment options and let me help choose. I have been taking myfembree for almost a year now. He said it had only been approved for up to 2 years of continuous use, so he hopes by then I won't need it and he won't need to do surgery. I think he said he does enjoy doing the surgeries, but he doesn't want to put me through it unnecessarily. Since being diagnosed with spinal stenosis, I don't always know if pain is from that or something else. If I.have a certsin kind of pain in the back of my neck before i getba headache and don't see lights, that might be my congenital cervical spinal stenosis. I thought I was having sciatica again a few days ago, but then I started seeing red. I must have accidentally skipped a pill or got my timing off enough to induce a cycle. I hadn't had anything but a little spotting for months. I have been having GI issues more lately. Sometimes I think I might throw up, but I don't. I might have a little reflux and heartburn and maybe hiccups and burping and a lot of abdominal discomfort. I am waiting for my first colonoscopy to be scheduled sometime in the next 2-3 weeks. I hope it doesn't mean I won't be able to eat right when I should be enjoying holiday treats. My doctor didn't say why she was requesting it. I thought it was probably routine screening, but maybe she listened a little more than I thought, or maybe it was requested by the dietitian rather than my newest pcp. I was disappointed by how fast the surgeon dismissed me, and Mom said it was ridiculous that we had to drive so far when she had her colonoscopy less than a mile from home. 
1. CommunityMember12c793 Member
 The gynecologist i saw about a year ago was great. I was able to talk to him pretty well, but he wondered why i wascseeing him at my age to talk about something most people get diagnosed decades earlier.
2. Katrina Martin Member
 <inline-mention username="CommunityMember12c793" user-id="5376723"/> I'm glad he was great! And we are all wondering why we have to wait so long to get diagnosed!
CommunityMember12c793 Member
Thank you. I have been getting better at telling people what I think. Sometimes it helps, like when I told the doctor on the phone that I thought my anemia was caused by endometriosis. My current doctor was happy to let me talk to a dietitian about IBS, but so far she doesn't want to send me to an allergist or immunologist or rheumatologist. I think some doctors don't like patients to self diagnose. I got in the habit of not saying exactly what I thought was wrong partly because sometimes people said I was wrong or even lying. When i was in first grade I told my mom that my tummy hurt and I didn't want to go to school. My sister said I was lying about the tummy ache because I just didn't want to go to school. Mom said to go to school and see how i felt later. I threw up on the bus before we got to school. I couldn't go home. We were living in Spain and our apartment building had not had any phone lines installed. This was about 1980. I think the school nurse called my dad at work, but he said he couldn't leave work. I was bored at the nurse's office and people kept asking if I felt better until i agreed that I did feel a little better, so they sent me back to class with instructions to tell my teacher if I didn't feel well. When i got up to tell her, she yelled at me to go sit down, and I gave up. That was about the time I decided I hated school and never wanted to go. If I didn't tell my mom how I felt, but she could tell something was wrong because of the way I acted or I had a hoarse voice because of a sore throat, she seemed more likely to act than if I just told her how I felt. Now I tell her how I feel most of the time, but not constantly. Nobody wants to hear constant complaints, and ever since I was a kid I figured if I said how I felt once, I shouldn't have to keep saying it again. When it comes to doctors, it seems like most only want to deal with one problem at a time, and they barely have time for me to tell them about one thing anyway. I often need to make an appointment and try to figure out what to tell the receptionist I want to talk about. Then when I get to the doctor I might need to be reminded which thing I said I wanted to talk about because it isn't the only thing bothering me. I might be making progress with the new one. Last time I talked to her she noticed that I was disappointed as she turned to leave. I had asked to talk about allergies because I have always had allergies, but I was never tested to see exactly what I'm allergic to. I have known people of all ages who have been tested, from toddlers to people over 80 years old. I was also hoping that an allergist might know enough about immunology to help me get in there. I tried to explain that to the doctor, but she just said to avoid allergens and prescribed 2 new allergy drugs. My sister who is a psychiatrist and was tested for allergies as a teen has autoimmune Issues and has been wanting me to see an immunologist or rheumatologist for at least a few years. I told my last doctor that my sister wanted me to see a rheumatologist or immunologist. The doctor refused because she didn't understand why. I told her about the alopecia and she expressed surprise, but didn't have anything else to say about it. My hair grew back after being almost half bald a couple of times, and it looks normal now. During Covid, my sister got long covid and was left with some side effects that still bother her. She was afraid the virus could be hard on me too because I had at least one autoimmune condition. I have had a little psoriasis, but the lesions are not always there, and they were so small that it took me a while to decide what it was. I showed my first spot to a doctor i had a few years ago and neither of us knew what it was. Since then it has not been visible on days when have an appointment, and the psoriasis itself never bothered me enough yo make an appointment just for that. So i don't think it is on my official record. 99 My doctor never had time for explanations of why i wanted to talk about autoimmune disorders. Maybe she didn't like my sister trying to manage my health from halfway across the country. Maybe she just thought I seemed too healthy to worry about. When I got covid, that PCP refused to give me any medicine for it. So I got it from other doctors. When I made an appointment to talk about arthritis, I was told that I don't have arthritis. To me arthritis literally means "joint swelling". I knew I had swollen and painful joints, not all the time, nor everywhere, but I wanted a diagnosis before it gets that bad. I asked to switch doctors at least a year before I was told I was getting a new PCP. When I told my new PCP about the alopecia, she said "It might have been a fungus." I wish I could see how they have my records organized on their computers. It seems like things like that should be easy to look up. I think it's ridiculous that I need to sign a release to see my own records. 
1. Lori.Foster Community Admin
 <inline-mention username="CommunityMember12c793" user-id="5376723"/> How frustrating. It does sounds like it's time, though, to take more control of your own healthcare and to try to put your past experiences behind you. Doctors are busy. They often don't have time to analyze indirect attempts at a referral. Because of that stress, they might jump to wrong conclusions. For instance, your doctor might have thought that you didn't agree with your sister that you need to see a specialist and, therefore, the doctor didn't refer you. If you really want a referral to a rheumatologist, bring a written list of symptoms you believe might be related to an autoimmune disease to your next appointment. Don't ask the doctor whether you need a referral. TELL the doctor you would like a referral. Keep it brief and be direct. Maybe at your next appointment, you can also tell your doctor you want to be tested for allergens because you are unsure specificially what you are allegeric to. It is a different issue, but you are not asking to discuss your allergies with your doctor, you are simply asking your doctor for testing. If your doctor declines, ask why. There might be good reasons for not giving you that referral that you are unaware of or, maybe, the question will help the doctor think it through more and follow through with a referral. If the thought of speaking up and speaking confidently makes you nervous, bring someone along who can advocate for you. You need and deserve to be heard and appropriately diagnosed and treated. You've got this and we are here for you. - Lori (Team Member)
CommunityMember12c793 Member
I triedcto hand the doctor a paper withnthings I wanted to discuss once. She just said "I'm not going to read that." I tried to read some of it to her. I think that was one of the times when she wanted me to pick one thing. Another time when we had a phone appointment she asked if there was anything else I wanted to talk about, and she did let me at least mention the things on the list that I had written months ago. I think part of the problem is insurance automatically denying things. I thought if they denied something it was just not going to happen unless something changed. Then I had a couple of specialist doctors who told me to call the insurance and complain and explain why the doctor felt it was necessary. I think one of those tines it was about MRI. It helped that I had records of the same thing being denied years earlier and requests from multiple doctors. The person I talked to on the phone was helpful. When I messaged my previous clinic to ask about switching back. I got a nice, honest. well written response. They said if I was waiting a few months to meet my new doctor, they probably couldn't get me in sooner at their clinic, because I guess we kind of have a shortage of doctors in the area. They said doctors get special credit for working in my area because it's considered rural and underprivileged. They don't live in the area. They work in the area for a limited time and then move on. We agreed that it was better to stay with my current clinic. I had carpal tunnel surgery planned and other things working that I didn't want to start over. The gynecologist who I like is with my current network of clinics. I think I have another appointment with him soon, but we made the appointment so long ago I will need to check calendars to see when it is. If I don't find it, I can call and see if they can tell me when it is. If I was supposed to call and make an appointment, it is time for me to do that. 
1. Lori.Foster Community Admin
 <inline-mention username="CommunityMember12c793" user-id="5376723"/> I wish your doctor had been kinder, more empathetic and more responsive to your list. It can be really difficut to find good, regular healthcare in a rural area. I live in a similar community and we often travel 45 minutes to an hour for doctors, especially specialists. After living in a couple of major cities for several years though, the trade-off feels worth it. No neighbors, no traffic, nature at my doorstep and plenty of space to stretch my legs. Warm wishes. - Lori (Team Member)