Endometriosis and me – part 1

In December 2014, I went to the gynecologist for the first time in…well…a long time. My “annual” exam schedule had somehow ended up on a twice-per-decade schedule. I blame a lack of insurance to some degree, but of course I can also blame myself: after all, I spent years with no insurance and was able to gather together enough money to see doctors to treat my migraine, even if I didn’t go as often as they recommended.

Over the last many years, I have noticed a few things about my cycle.  My periods were getting longer and longer, but I just figured I was one of those women who bled longer than others.  They were also getting heavier, and I just figured I was one of those women with heavy periods.  My cramps got worse, but over such a long period that I didn’t think of the pain as a worrisome change—I just thought my body’s patterns were changing as I got older. My ovulation pain (also known as “mittelschmerz”) would be really bad one month and kind of mild the next. For awhile I had a constant discomfort on the right side of my abdomen—it got worse during ovulation and during my period, so about half the time it was uncomfortable. Sometimes it was painful, but usually it was just distracting and annoying. It felt like a gas bubble in my intestine. I didn’t really think much about it.

When I went for my long-awaited exam in December, the nurse practitioner asked me about my cycle, my periods, any irregular pain or bleeding, and the like.  The longer I talked, the more I realized I had to tell.  It was like, “Oh yeah! And this. Oh yeah! This also happens to me.  Oh yeah! This hurts sometimes…well…all the time.”  Her expression turned from one of patient interest to concern, complete with an involuntary frown.  She retrieved a sonogram machine and looked at my pelvic area, then called in the doctor, who has more experience and expertise.  They couldn’t be 100% sure, but they were pretty confident they were looking at an endometrioma on my right ovary. An endometrioma is a type of cyst formed when endometriomal tissue grows outside of the uterus. Based on the size of the growth, the doctor recommended surgery.  An option would also be to wait and see and check back in six weeks, but she looked over my history and heard complaints of my discomfort and heavy bleeding and asked that I consider surgery as an option. The only way to know for sure if the growth was endometriosis was to have laproscopic surgery.

After much hemming and hawing and bank account balancing and talking to friends and family, I decided to move forward with the surgery. In mid-January, I had the procedure. Biospies confirmed that the growth on my ovary was indeed a part of endometriosis, and the doctor removed endometrial tissue (which cannot be seen in scans in advance) from my pelvic area. There was even some attached to my bladder that she lasered off.

Why am I telling my story of endometriosis on a website dedicated to migraine? Well, it’s because of the correlation between endometriosis and migraine in women.  (Remember your introductory statistics class: correlation does not imply causation, meaning one illness is not proven to cause the other). Diana Lee’s article from 2011 is excellent. Dr. Susan Hutchinson’s book The Woman’s Guide to Managing Migraine explores the relationship between so-called “women’s issues” and migraine and comes highly recommended.

If you are a migraineur (or not!) who suffers from pelvic pain, heavy periods, long periods, an irregular cycle, painful intercourse, painful bowel movements, or any other signs of endometriosis, please visit your gynecologist and report your symptoms.

Stay tuned for future articles on how life has been since my surgery, how I’m treating my condition now, and the like.

In the meantime, let us know if you have ever been diagnosed with endometriosis.  What has your experience been like? 

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

Comments

View Comments (18)
  • MissyP
    3 years ago

    I’ve been both a sufferer of migraines and endometriosis since I was in my early 20’s… I’m now 46. Diagnosed with stage IV endo in 2003 following surgery for severe pelvic pain due to ovarian chocolate cyst. Surgery was attempted as laparoscopic but had to have “C” section incision due to severity of endo-it had grown not just inside uterus but webbing was attaching bowels, stomach, kidneys, and all other abdominal organs. Had 1 year of Lupron following surgery. Cycle and pelvic pain stopped but migraines worsened. Lupron also completely changed my behavior and mental state-I absolutely do NOT recommend it for anyone.

    I definitely feel there is a correlation between endo and migraines. If you have PCOS or anything related to hormonal insufficiency or overproduction, no surprise that there is a likelihood of migraines. I suffer almost daily from migraines but still push on. What else can you do?
    Thank you for this article and forum. It’s nice to know you’re not crazy!!

  • MissyP
    3 years ago

    Oh-one other thing… I also have Intracranial Hypertension or also known as idiopathic pseudotumor cerebri, which is an overproduction of spinal fluid causing inflammation of the optic nerves. Neurologist thinks it’s either from allergic reaction to doxycycline or Lupron. Also contributes to severity of migraines especially when flying cross-country or when barometric pressure changes. Endo makes the spinal fluid change thereby increasing severity of migraines. Vicious cycle!!

  • Jhansen44
    3 years ago

    I was diagnosed with Endo in my early teens. The OB said to have kids early or not at all. I had twin girls at 23 and a boy at 26. My first migraine happened when pregnant with the boy. I was diagnosed with Occular Migraines in 1997. When I was 33 I was having really heavy periods and clotting. It took a year for them to act but eventually I had a laporoscopy which determined I had Endometrial Stromal Sarcoma – an very rare form of Uterine Cancer. They recommended and I went thru with a total hysterectomy and removal of both ovaries. Due to cancer I was unable to take hormones for the first 5 years post op. I am now on low dose of Estrogen (I know, I know…cancer risk) but I was miserable. I have had chronic migraines for the past 10 years and am now on my 3rd round of Botox. I feel for all of you and am so glad to have this forum to connect.

  • Mandi123
    3 years ago

    Wow! I never thought about this connection. I was diagnosed in my teens with endo. Took Lupron and had 4 lapcroscopy surgeries. I was lucky enough to have a son at 24. Had a hysterectomy at 30 — was able to keep my ovaries. I did not have migraines until about 3 years after my hysterectomy. I have daily headaches. I’ve been on Botox for almost 2 years and it has helped some but I really want my life back. Oh and I’m allergic to all triptans so no relief there! I have no energy; cannot exercise without getting sick; my quality of life is just pitiful. Yet all my blood work shows my hormones are “normal.” There’s got to be a connection! Thank you all for bringing this up and helping me not to feel so lonely!

  • USMCwife
    3 years ago

    Diagnosed with severe endo and adenomyosis at 18. Three surgeries later, at 24, was told to have kids now or never. Had 2 pregnancies and 2 kids by 27. My migraines became severe during second pregnancy. Diagnosed with fibromyalgia by 30. Hysterectomy at 30 – was able to keep one ovary. Migraines slowly got worse over next several years. They are now disabling. Hysterectomy improved some things, and I would do it again. However, my overall health has gotten worse. Reading these comments, perhaps I should see a GYN and have that ovary checked out. The surgeon that did my hysterectomy was unhappy about my choice to keep my ovaries and predicted that I’d be back on the table within 5 years for their removal. It has been 10 years. I would never recommend Lupron or Danazol to anyone. Have the surgery. Curiously, I wonder what the link is. My current GP thinks I have some unidentifiable autoimmune disease – is that the link?

  • Trisha27
    3 years ago

    I had surgery in 1985 for endometriosis. My left ovary, and a growth the size of a grapefruit, also areas on my intestines, were removed. I had been told for 6 months by my doctor it was PMS. Luckily, I was able to have 2 children in my 30’s! In 1995, I had my first migraine and have been a chronic migraine sufferer since. I am finally staring to go through menopause,(age 56) and my migraines are lessening to 10 a month. Hopefully, they will keep retracting! I truly believe there is a tie between the two diseases.

  • JoG
    3 years ago

    This is the Law of Attraction working – only 2 days ago did I start to research any possible links to endometriosis and migraines after suffering from both for nearly 30 years. I agree with jmbeatty’s analysis of living with both of these conditions: “like living in the Seventh circle of Hell”.

    Any future research or advise on how to manage these 2 combined conditions would be much appreciated. I’ve had 2 rounds of surgery to remove adhesions and I can now cope with the endo, but the migraines remain to plague every day of my life.

    I’ve recently had botox injections, and I now feel worse than I ever did before, and a loss worse off financially. Every day is a struggle for me and my family who are wonderful and very supportive.

    Huge respect and best wishes to everyone and anyone suffering from either of these conditions.

  • Ann
    3 years ago

    I suffered from hormonal migraines and I still do. During my late 30s, my periods were extremely long and heavy and in my early 40s I went to the ER with excruciating pains in my lower abdomen. A gastroenterologist suggested I see my OBGYN. I did and a laparoscopy with removal of the tissue plus a course of Danazole for almost a year ended my plight. I managed to get through without earlier problems because of the fact I had 4 term pregnancies, and then later my age plus my closeness to menopause precluded all the problems others have mentioned in their posts so said my OBGYN at the time. Now 20 years after menopause, I still suffer from hot flashes, monthly hormonal migraines with spotting at least once or twice a year (I’ve been checked and there is no sign of anything amiss). I also suffer from migraines many other times during the month. I understand endometriosis is an autoimmune disorder and I suffer from Hashimotos and Fibromyalgia which occurred post menopausal and are also and the comorbidity is migraine for them too.

  • Ohio Gal
    3 years ago

    Hello. Just read the endo article. 16 year migraine sufferer. Had endometriosis and adenomyosis terribly and had to have a partial hysterectomy at age 29, but kept my ovaries. No idea if it is related to my migraines, but I definitely suffered from extreme forms of both conditions.

  • body
    3 years ago

    Endometriosis has been comorbid with migraine for me the greater part of my adult life. I had hysterectomy when I was in my late thirties, which was great for the horrible symptoms related to endometriosis, but did not relieve my migraines. In my early 40’s, due to an ovarian cancer scare, I had both ovaries removed (thank goodness,turned out to be severe endometriosis). A daily low dose of estrogen helped some with relief of migraines, but I continued on to chronic, with medication overuse headache, regardless. Taking charge of my triggers; healthy lifestyle habits like diet, sleep and exercise; and, stress management techniques like meditation and biofeedback, along with regular acupuncture helped me remit to infrequent episodic migraine and I now live a happy, healthy life with migraine. Warm wishes for the same for each of you.

  • chienjouet
    3 years ago

    I’m 67, so it was a long time ago, when options for patients with endometriosis was hysterectomy. I was about 26 and it triggered an early menopause. I wouldn’t have made that decision today, being better informed with better options available and an entirely enlightened view of women’s health. I began having migraines at about 32.

  • Josiezee
    3 years ago

    I had endometriosis for five years in my early thirties, culminating in a total hysterectomy at age 34. I had had occasional migraines, but at 38, they became chronic. Most of my adult life has been dealing with chronic pain. I feel for you ladies, and it’s good to know I’m not alone.

  • Josiezee
    3 years ago

    By the way, if you are considering hysterectomy, I highly recommend it. There has not been one day since the surgery that I have missed my uterus and the pain from the endometriosis.

  • SouthernUtahGal
    3 years ago

    I had child onset migraines starting at around 8 years old. Started having horrible abdominal pain in my early teens, finally diagnosed with Endometriosis in my early 20’s after years of misdiagnosis and grief. 9 surgeries and 20+ years later, I am still struggling with Endo on my bladder, bowels, and other areas. Migraines and Endo, NOT a fun combination.

  • 3 years ago

    having stage 4 endometriosis and migraine with aura is like living in the Seventh circle of Hell. Seriously. It’s debilitating. Quality of Life is very very low.

    About 7 yrs ago while on vacation in Hong Kong, I had severe vomiting, vertigo, headache and GI symptoms with my period. I thought it was just “food poisoning”, being in Asia, this seemed like a logical assessment to me. took some Pepto and soldiered on. I was ill for a week on the vacation and when I returned home Canada, I seemed to be ok.

    Over the next 5 yrs, I had progressively worse headaches, was diagnosed with migraine with aura.

    Then about 3 yrs ago, after much cajoling of my GP, I got a referral to a GI specialist for GI bleeding and other GI issues. she did a scope and everything seemed ok (ie: no cancer), so I was diagnosed with IBS and put on a special diet (Low FODMAP). In addition to already avoiding my suspected dietary migraine triggers.

    one thing I was never asked about by either my GP (whom did my annual physicals including pelvic exam), Neurologist or GI specialist, was my Periods.

    Yes, they were heavy and hurt a lot, which was never a thing for me before the migraines & GI Issues.
    The GI specialist checked my Iron and found me with less than 1/2 of my iron stores depleted, from the heavy periods.

    So last Fall I went on Iron infusions. But it wasn’t until I ended up twice in the ER Hemorrhaging with 13 to 16 day periods, that I was able to convince my GP to refer me to a GYNE.

    That GYNE, got me a surgical referral within two months.

    so I had a diagnostic laparoscopic surgery done in Jan. 2015, that’s when I was diagnosed with Endometriosis.

    The Surgeons felt that the level of disease was too severe to try to excise any then and there. They did a cystectomy for the 7cm endometrioma on one of my ovaries. The next surgical option I’ve been given in hysterectomy, which I’m not in favour of.

    The endometrioma grew back within 5 wks of surgery, even with being on an IUS for months prior to surgery.

    I’m only 34 yrs old and have been ill for the past 5 yrs. Very ill for the past 3 yrs. currently i’m unable to work in a career that I’ve been building for the past 10 yrs. I have no life anymore, I go to doctors and physio therapy, that’s my life now.

    Doctors, especially GPs, have got to get better an Early Diagnosis and specialist referrals for Endometriosis.

    This disease is a phenomenal mimic. Along the way also tested for Colon Cancer, Crohn’s Disease, Celiac, Ovarian Cancer, which were all ruled out, prior to finally getting to the proper diagnosis.

  • Jill M.
    3 years ago

    Janet,

    I’m sorry that you have had to deal with this, but I’m glad you have a good doctor to care for you. This can be such a painful disease. My sister was diagnosed several years ago at the age of 18 with endometriosis and has had two surgeries to remove growths. So, while I myself have not personally experienced it, I experienced the pain and emotional turmoil through her eyes.

    I wish you the best of luck, and hope that your condition stays managed and relatively pain-free.

    Jill

  • KimmyKay14
    3 years ago

    I began experiencing migraines around age 19. When I was 24 I began having painful periods and was diagnosed with endometriosis, cysts on my ovaries,so surgery was recommended. This was in 1994. Since those 25 years have gone by, my migraines have also transitioned from episodic to chronic. The episodic migraines were strong but came along infrequently. Now I am dealing with constant med adjustments, trying to lower the frequency but they are occurring 1-3 times per week. They are milder but more disabling. My neuro suggested that they may be more difficult to treat due to my having had a hysterectomy at such a young age. Another interesting pattern I’ve noticed is that I tend to be guaranteed to get a cluster of migraines during the same time each month. My ovaries were removed, and I do take a regular dose of hormone replacement daily. Apparently the brain is still sending out signals but nobody’s home! Thinking of all of you!

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