Here at Autoimmune Paleo, we don’t usually write about specific autoimmune diseases. Our mission tends to be broadly focused on the shared roots of autoimmune disease and the practical implementation of dietary and lifestyle approaches that are beneficial in managing those various diseases and other forms of chronic illness. In this case, we are focusing on the “seeking wellness” part of our mission.
The other part of our mission is “building community.” We work to do this in all sorts of ways, but for me personally, one of the most important actions is raising awareness and “rallying” around the causes close to the hearts of our autoimmune community members.
This month I decided to step out of the normal pattern to focus on a specific disease, endometriosis (“endo” as it’s known on the mean streets), because women who have it are in many cases also fighting additional autoimmune diseases. One in ten women have endo, and based on our blog traffic, that’s at least 13,000 women in our community alone. I am one of those women. March is a particularly poignant time to talk about this disease, because it is Endometriosis Awareness Month. I see endo, more than any of my other autoimmune diseases, as a social justice issue and I want to do my part, on behalf of all the women suffering with it in our community, to raise awareness.
Before we dig in, let’s get a few details worked out. Endo is one of those tricky diseases on the autoimmune list, because it is not yet firmly classified as autoimmune, but considered a “suspected” autoimmune disease. Personally, until scientifically proven otherwise, I operate under the “if it quacks like a duck” rule. Having two other confirmed autoimmune diseases, I can say without hesitation that endo feels suspiciously “autoimmune-y.” Its status as an autoimmune disease is just one of many uncertainties surrounding the disease.
What is known is that it is a disease in which tissue similar to endometrium, the tissue lining the inside of the uterus, is found outside the uterus. This tissue can grow outside of uterus on other organs, commonly the ovaries, uterus, bowel and pelvic sidewall, seriously injuring or even destroying these other organs. In these locations the tissue responds to cyclic hormonal changes, just like the tissue inside the uterus, which causes inflammation, bleeding, and A LOT of pain. Severe pain during periods is the hallmark symptom of endo, but other common symptoms are infertility, painful ovulation, pain with or following sex, abnormal bleeding, general on-going pelvic pain, and fatigue.
I know that many of us in the autoimmune community have faced injustices while seeking help for our diseases, regardless of what they are, so why do I hold endo apart as a distinct social justice issue? The core of a social justice is unequal access, support, or treatment, which is based on a trait. After dealing with endo for over twenty years, I’ve come to recognize something I would never have considered early on…the trait that results in unequal access and support for endo is gender. Menstruation is unique to women and dismissal of this disease as a “female problem” has lead to not only difficulty classifying endo as an autoimmune disease, but also even larger failures in thorough medical research and appropriate healthcare options.
I see this social injustice in four places:
1) There is breakdown in access to accurate information. Needless taboos surround discussion of women’s periods, which means many women have little to no information about what can be considered a normal menstrual cycle. Sadly, details about endo, if they are able to get any, amount to the worst kind of misinformation, often delivered by a gynecologist sticking to the status quo. Women are given incorrect information on everything from theories about the disease, to symptoms, and ineffective, even harmful, treatment methods. I was told on many occasions that “all women have cramps” and I was even instructed to “get pregnant” to treat the disease. This lack of access to good information leads to women being at a serious disadvantage in their attempts to take an active role in managing their disease.
2) There is a crisis in access to appropriate healthcare options. Currently, the only way to diagnose the disease is through visual confirmation during laparoscopic surgery. It is lack of research that has left us with only this invasive option, rather than accurate imaging or blood serum markers. The reliance on surgical confirmation of disease means a damaging delay in diagnosis for most women. It doesn’t stop with diagnosis. Although a combination of approaches, including a form of surgery, called excision, performed by an expert surgeon, along with dietary modifications and pelvic floor physical therapy are the most effective treatments (check out the Center for Endometriosis Care website for solid deets), what women are more often subjected to is outrageously outdated. I belong to several online support groups for endo, some with membership well over 10,000, and I see women sharing daily that they’ve been told they must have organs removed (even though hysterectomy is not a cure for endo) or that they must agree to hormonal manipulation that carries with it devastating side effects. This lack of access to appropriate healthcare options amounts to outright failure in women’s care.
3) There is also a crisis in the support offered for the pain experienced with the disease. The pain has recently been compared with the pain of a heart attack by endo experts! I can’t imagine any other situation where we would not take a person seriously if they were reporting pain of that kind. The pain can cause fainting, vomiting, sweating, rapid heart rate, and unrelenting cramping, but seeking help is often met with humiliation. I know this first hand, as I’ve had more than one emergency room visit where nurses or doctors literally rolled their eyes. Women may even overlook health emergencies, due to the fear of being told it’s “just a period” or being treated like an addict. Tragically, I observe over and over in support groups serious depression, even suicide. These realities for some endo patients are the result of enduring excruciating pain and feeling that effective treatment is simply unattainable.
4) Finally, there is a failure in terms of support for the financial losses of endo. A disease of “the private parts” is rarely legitimatized when it comes to paid sick leave or even in the worst cases, recognized as a medical disability. In 2012, the World Endometriosis Research Foundation carried out a study that determined endo costs the average woman, globally, over $12,000 a year in healthcare costs and lost productivity. As one Australian woman said, “It means that in our most productive years – and I don’t mean ‘reproductive years’ – women are being forced out of jobs, they can’t work physically. There’s a lot of really devastating effects.” That is an enormous burden for women with endo and their families, but these financial losses are not even a part of the conversation we are (or more accurately, aren’t!) having.
Endo is not rare. There are an estimated 176 million of us suffering with it worldwide. Dismissal of this disease on the basis of gender makes it a valid social justice issue. If we use all our voices, we can change that for the girls in generations to come. I encourage you to join me for the rest of this month and add your voice to this cause. I’m proudly providing the rallying cry that our community needs to #fightlikeagirl.
Resources To Help You Get Informed and Take Action:
- Endo Action Alliance (they are making moves!)
- Endo March (the march is tomorrow, March 19, 2016!)
- Endo What (the first documentary!)
- Center for Endometriosis Care (solid, caring, accurate info/resources)
- BTW, yellow is our color. 😉
Thank you Angie!
I almost died because I had my period when a endometriome the size of an orange ruptured on my right ovarie. It tok almost two days seeing four different doctors before someone believed my pain was more than monthly pain. I was undiagnosed and the surgery triggered ME.
I am very sick and I think it would have been different if I hadn’t had to wait so long. I had been asking my doctors for years if there could be something wrong. But everything is “normal” when it comes to menstruation it seems.
I hope that there will be useful research in the future, that can diagnose this early.
Thank you again for writing this very important post!
You are so welcome Vivian! My fingers are crossed too. Thanks for reading!
Were you floxed by fluoroquinolone antibiotics used in your surgery? I was concerned when you said that your surgery triggered ME. If you have multiple serious and cascading health problems, you might want to look into fluoroquinolone toxicity. There are facebook support groups for it.
All the best to you.
Thank you Angie for writing this article, I had no idea Endo was also considered Auto-Immune. That means I now have 3. Endo, Hoshimotos and EBV. I suffered with Endo for 15 years before finally having a hysterectomy which was my Dr’s only know solution. I was finally diagnosed with the Hoshimotos and EBV in January of this year. I never really healed after the hysterectomy in 2006 and was searching for the answer ever since. Dr’s always just kind of shrugged after only running a blood test to find nothing. It really makes me wonder which one came first and did one increase the chance of the getting the others. So much to learn and understand all while trying to heal.
Tina, Endo is a “suspected” autoimmune, but as I said in the article, I personally treat it as though it is one & use similar strategies to help manage it. I hope you’ll find lots of resources here on your healing journey. Don’t be worried about all there is to learn, just take it a day at a time.
I’m constantly having to battle the idea that ‘menstrual cramps are normal/inevitable’ in society in general, and in the medical world the answer is always hormonal birth control – which may be one option to manage symptoms but not the only option, and more often than not is given without investigation so you go years without a diagnosis. When doctors use hormonal birth control in this way it’s a big problem, not just because of issues of coercion and lack of informed choice, but when options like the pill are used as a menstrual problem cure-all it means lack of real treatment for the individual and lack of demand for medical advances.
Completely agree Kay! Thanks for reading!
Thank you for sharing this really insightful article and for acknowledging something I have long suspected as an auto-immune condition. I have found insights that indicate many women get ‘dispersed cells” but that other women are able to clean up these cells, without it every developing into Endometriosis.
I have spent the last 5 years studying Endometriosis and consider myself an expert on the condition and agree with so many things you have shared.
I would love to connect more with you both as I also feel the treatments for Endometriosis are terrible and completely pointless.
Have a look at my website and lets help more women together who need proper care for Endometriosis!
Hi Melissa, again, as I say in the article Endo is a “suspected” autoimmune, but I personally categorize it as such & use the same approach to managing it as I do my other autoimmunes. Your site looks great. Please feel free to reach out to us via the contact form. Thank you so much for reading & doing the work you do!
I too want to say thank you for this article. I think about the years of endomitriosis pain I endured and the Dr’s that rolled their eyes at me also. I was told over and over that most woman experience it, and that I needed to suck it up and quit complaining. I don’t think I fully realized how abnormal the pain was until I finally had a successful pregnancy (after 11 years of marriage) and was in labor. I was up walking around, laughing and talking, until I was dilated to 8 because the pain was exactly the same pain I experienced every month for two decades. When the nurses expressed amazement and told me they had never seen a woman up and around at that stage of labor, I knew I hadn’t just been a wimp for all those years.
Amen Gina! I so understand about the pain. I had the same experience w/ child birth. Thanks for reading!
My middle child was born on the road in the ambulance, because I’ve been so used to dealing with the pain.
[…] Then there are the conditions that affect the reproductive system internally, like Endometriosis. […]
Thank you for this powerful and important post, Angie. When it comes to externals (what we can see when we’re out & about in the world) it looks like equality for women is within reach. It’s when we consider the internals, anything to do with how women’s bodies work (even when they are working well!) that inequality is still obvious. And when things go awry with women’s reproductive systems, as you have so eloquently pointed out, regressive and patriarchal attitudes are still alive and well. The solution is to speak up. Make the internal external: visible, understandable & knowable. So much gratitude to you for doing just that so beautifully in this post.
Lady, you inspire me w/ your work too! Thank you so much for reading Petra!
[…] Four Reasons Endometriosis Is Social Justice Issue […]
Wow! All kinds of bells going off in my head as I read this! I know I had endo years ago because I had surgery to diagnose & remove it. Which, I have to say, helped immensely. But now I’m wondering if residual endo might be playing a role in my cyclical gut changes between normal & constipated. Thank you for speaking out!
No problem Jana! Thanks for reading!
I was diagnosed with endometriosis maybe a year and half ago after a lot of debilitating and frightening pain, via surgery, which now doesn’t seem like it was really necessary (the doctor scared me into doing it). And hormonal treatment re-triggered serious PTSD. It was quite intense. I really think that this is a social justice issue as well, being told to get pregnant…let’s just say that I gave that doctor a piece of my mind. No one really helped me, I ended up helping myself. The autoimmune paleo diet as well as other eliminations really has seemed to help lessen my symptoms. Menstruation has an overall negative connotation in the world, and is steeped in shame and secrecy. This has to end. It’s beyond ridiculous that the medical community is still so oblivious to our reproductive health. Our organs are treated as if they have no viable use if we don’t need them to make children, which is wrong on so many obvious levels, including the biological one. The lack of research specific to women’s health is a major disadvantage and is oppressive. Thanks for trying to help stop the silence.
You are so welcome Janelle!! It is my privilege & pleasure to speak out. I agree w/ you on everything you said.
Thanks so much for writing this article! It has made me do some rethinking. I have been complaining to my gyno for 3 years about pain and have had numerous ultra sounds and doctors looking at me like I’m crazy when they can’t find anything, and they just tell me I need to relax more. It’s actually from complaining about this pain that the doctor ran a thyroid test and I was diagnosed with Hashimotos. I really don’t want to do an exploratory surgery, but it may be my only option to get an answer. What are some ways I can treat this disease?
Erin, thanks for reading! I would go to the Center for Endometriosis Care website for the best, most accurate, & caring information about diagnosis and appropriate treatment of endo. There are good options, but finding a specialist is key.
I wish I had known this information when I was younger. It would have made a huge difference in how I felt physically and mentally during my twenties and early thirties when I too had symptoms endometriosis.
For years I had symptoms and thought that is was just part of being female as my physicians were never alarmed. I thought it was something that I would just have to live with.
Many of the symptoms I experiences were nondescript or generic. I had gas, bloating, diarrhea, body pain, and headaches. I was tired. I was moody. I also did not have the stereotypical heavy periods or bad cramps that many with endometriosis report having. I endured these generic symptoms for several years on a very consistent basis. And then one day the severe pain started…
I remember the exact moment that the severe pain started. I was sitting on the couch in the evening, enjoying the sunset coming through the window and was working on my graduate work when my right side by my gallbladder and my lower left abdomen suddenly felt like I was stabbed. It really came on all of a sudden. From that moment it hurt to walk. It was very uncomfortable to go to the bathroom (I am talking about #2), and I did not feel like eating.
The day after the severe pain started my husband Nolan and I wanted to check out a new Asian fusion restaurant. I remember trying to walk up to the restaurant, feeling like my abdomen was going to fall out of my body at any moment and it was so painful to walk. When we got inside and sat down I told Nolan that I didn’t feel like ordering anything. That was huge red flag for Nolan (he knows how much I love to eat). We immediately left the restaurant and Nolan took me to the ER. The doctors found nothing wrong with me. I then proceeded to see my general practitioner or his nurse practitioner when I couldn’t get in to see him. Eventually I was referred to a GI specialist and I was having abdominal pain. They ran every test imaginable over several months…still no answers. After months of appointments, tests and no answers, my GP suggested that I see an OB/GYN at a specialty clinic.
It took quite a while to get an appointment at the specialty clinic as a new patient. Even though it was a long wait and I am glad that my GP recommended that I go there. Within 10 minutes of meeting the OB/GYN, telling her about my symptoms and being examined she said, “You probably have endometriosis. The only way to know for sure is to do exploratory surgery and if needed endometrial ablation.” Here is where I need add that I had never heard of endometriosis. None of the previous medical professionals who had treated me over the years had mentioned endometriosis as a possibility.
So there I was, sitting on the exam table, in the lovely gown that opens in the front, with a Dr. I had just met less than 10 minute ago, and I was actually excited about her cutting me open. I was that desperate. Within a week I had laparoscopic surgery. It is minimally invasive with inserting a camera through the belly button and the ablation tool through the side of the abdomen. The only downsides to the procedure was having to be put under and being catheterized. The positives were that within days I felt so much better and the pain was gone.
It has now been about 10 years since I had endometrial ablation. Even though it has been almost a decade, I still worry that it will come back. Every time I experience one of those generic symptoms I wonder if it is starting again.
Terri, I’m so sorry to hear of the pain you experienced, but also glad you found relief w/ your ablation surgery. Ablation is not normally effective long-term (the best method is excision), so you have definitely been lucky w/ 10 yrs of relief. Thanks for sharing!
Thanx for posting about this cuz both in New York and Florida docs are in disbelief of this condition. I have heard everything from maybe I should use birth control to regulate my hormones, after my first kid I’ll feel better, change diet, Endometriosis, Cystic Fibroids, an abnormal pap smear which is normal for women 21-40, to Naproxene (which gave me pains sporadically at nights). Everyone glosses over this issue and just the women in pain deal with it alone n ashamed. This is a medical issue n if it does render me barron I will never shut up about my painful periods. I’m vocal about it now n finding a cure. This cannot be life. Thanx for shining some light. Thank you.
Thanks for reading Andrea!!
Until I started into peri-menopause in my early 40s and investigated my new migrane symptom in a bookstore, I was told I had endo. I had a ovarian cyst removed the size of a grapefruit back in the late 70’s, had pain all through my 30’s and was only given prescription Naproxen or ibuprofen (back then that’s all they offered me). Every month, painful cramping. Some months so painful I was throwing up and on my way to the emergency department. Not one doc EVER tested my hormone levels. I read in a book, standing in a bookstore in my early 40s, about low progesterone causing the peri-menopause stymptom of migraine and the solution, as told in this book, was OVER THE COUNTER progesterone (ProGest cream). I immediately went to the health store, bought the cream, and NEVER had PAIN AGAIN! I think ALL THOSE YEARS, month after month, was due to low progesterone – NOT ENDO! I never had children and will always wonder if I had only been told my progesterone levels were low, would I have avoided the pain and childless life I have. Please, if you have been told you have endo and have pain EVERY month, go to the health store and buy over the counter progesterone cream and see if it helps you. The doctor will only prescribe removal of your ovaries. Totally unacceptable. I am now on bio-identical hormones in my 50s and in menopause, but am so much more knowledgeable about all this because of that first book in that bookstore so many years ago. Good luck to all of you who are given this as a diagnosis, because there is hope out there for you via the Internet and your own personal education into hormones and the body! By the way, I now have the autoimmune disease Hashimotos, and am working on reversing via all the great information online. I discovered the Hashi’s myself via reading about it online, and asked my doctor to test for and I think the discovery that low progesterone was my answer to the painful monthy cramps in my 40s pushed me into discovering that I am in charge of my health, not to depend of some pharma educated drug pushing doctor. It changed the course of my life, my family’s life, that YOU are in charge of your health! Thank you so much for this post, it was eye opening.
Thanks for reading & sharing your experience Elle. I agree that we are in charge of our health. I do advise caution to women considering any kind of hormonal manipulation though. It sounds like it was the right answer for you, but it can be a very messy & difficult process for women to manipulate hormones, even w/ bio-identicals.
The women of today have it so much easier as they can go to the Internet and learn all about it, join forums to discuss experiences, etc.. I had none of that and had to rely on the doctor’s knowledge. I should have mentioned that I had 2 surgeries, one at 19 and one at 30, both at top institutions. Neither surgeries helped with the pain long term. It always came back, so I was desperate in my early 40s in peri-menopause, with the same pain and a new symptom, migraines. I went to MANY doctors in 3 different states over those 2 decades, and none checked my hormone levels, or I could have taken their prescription Prometrium. It was never offered, so going to the local store was my last resort, as I tried the doctor route with surgeries, for over 20 years. I am thankful over the counter progesterone cream was available during my 40s because I did not have pain that entire decade. Now in menopause, I use Prometrium, (which is a bioidentical progesterone) and that works great, along with my other bioidentical hormone creams that are rubbed on my arms (not messy at all). I believe, for myself, it was always a hormone issue. Of course, when young women reach menopause, they will have to learn & decide if they want to use bioidenticals. Endo was painful MONTHLY, menopause is something you have to deal with HOURLY, so bioidenticals are a lifesaver for me. Quality of life is what I’m after. Good luck to everyone!
I was diagnosed with Stage 4 Endo 30 years ago. I was furious at the time that my male doctor was most concerned that my poor husband might be suffering because I found sex painful and avoided it whenever I could. It was, afterall, my ‘duty’ to engage in intercourse frequently for the sake of my husband whether I enjoyed it not. Here I am with a serious lady part issue and all he could think about was how this might affect my man!! I’ve been on countless hormone altering medications over the years and am now a hot hormonal mess. I hope greater awareness will lead to better treatments
I am so sorry you had this experience. Shockingly, I hear about this ALL. THE. TIME. in support groups. It STILL happens! I am also hoping for greater awareness! Thanks for sharing!
Fantastic post Angie! Thank you for shedding light on an important subject. I’ll be sharing far and wide.
Thanks for reading & sharing Rory!
Wow. I found this community to assist with auto-immune issues. Now that I’m here I realize that my years and years or pain may go hand-in-hand with my other health issues. I also am told to get pregnant or take birth control as treatment by every single doctor I have been to. Thank you for sharing your personal story. I will be following closely and learning from you. Thank you!
Thanks for reading Kimberly!!
My 26 years of endo was driven by my estrogen dominant state, possibly from xenoestrogens, food sensitivities, early trauma, who really knows. I had burning pain in my abdomen and shooting pain down to my knees, up to 30 days a month. I missed holidays, vacations, so many special events. I lived with a heating pad on my stomach. Everything helped a little, but nothing lasted. After every baby, it came roaring back with a vengeance. In 2006, facing hysterectomy, I read John R. Lee’s book: What Your Doctor Won’t Tell You About Menopause, which also addresses hormonal issues like PMS and periomenopause. I started using high dose natural progesterone in Vitamin E oil rubbing it on my gums. Two months later, I had yet another exploratory lap to plan for the hysterectomy. To my amazement, the surgeon recommended against hysterectomy, which I did not want anyway, noting that the implants were dying off. In six months, I was mostly pain free. I went into complete remission. I’m sharing this with the hope Protest- from Vitamin Express (com) will help someone else. I have no financial or any other interest in the company. Praying for your health and complete wellness.
Thanks for sharing Crystal!
That should be PROGEST-E
most interested in results. Suffer till 1979……but wondering now of the residual effects that could be running amuck causing harmone/heart/thyroid /lung issues.
According to Endo guru’s it can not be autoimmune. Even though autoimmune and endo are common together. Are there any studies that show a link between the two?
Thank you for writing this and being an endo advocate.♡
Ter, as I said in the post, endo sort of has this “maybe/maybe not” status as autoimmune. To my knowledge there are not conclusive studies showing it is firmly not autoimmune or firmly autoimmune. We need more attention on it, so we can get more research! And thank you for reading, it is my pleasure to be an endo advocate.
Add to your list another women currently working on her Hashimotos’ auto immune disease that has endometriosis in her background. I spent my 20’s and 30’s in pain, bloated and suffering and living on Motrin while trying to work and raise my to sons. I had to get my months worth of work in my one good week. It was not a pretty sight. Now I have Hasimotos’, adrenal depletion, throat nodules and chronic fatigue. I know in my gut they were connected. Than you for the work that you do!!
Donna, I so understand! Thank you for reading & you are welcome! It is my pleasure to speak up for our community.
I was diagnosed with adenomyosis, a form of endo. I had excruciating pain, always causing me to vomit or pass out. I was told I should have a hysterectomy.
I began taking magnesium supplements everyday for another reason, but found my periods eased, so that I could go without painkillers. It works like a miracle for me.
I did the same thing Jeanie except I used potassium in the form of black molasses. I read potassium and magnesium go hand in hand and once you regulate one the other fixes itself. I took it to get rid of ovarian cysts but it worked for my cramps too. I take it daily.
I also eat no dairy. I noticed an immediate difference with that. Meat only once a week and no red meat. A high plant based diet literally the only thing that works for me. While I still have a ways to go since in just started a few months ago I already feel 80 percent better. I thought i was going to have to go on disability before since it was so bad. Also my doctors couldn’t fix me without more surgery or hormone therapy so I took it into my own hands. Even though the surgery removed the effect, the cause was still there so I can just remove it every year like that.
[…] and Endo related blog posts from Angie Alt – here and […]