© 2015 Nutritionista. Erin Luyendyk, RHN. All rights reserved.
March is Endometriosis Awareness Month! Endometriosis is among the most misunderstood conditions that one can experience. With so many misconceptions, it is easy to say things that dismiss suffering and strain or even end relationships. As a holistic health professional working with women with endometriosis, an active member of the endo community, and as an endo patient myself I understand firsthand the dismissive effects of these comments. Here are a few of the most common well-intended but hurtful comments we frequently encounter along with a few ideas on what would be helpful to say and do instead.
“I get bad cramps too sometimes. It’s not that bad; just take some ibuprofen.”
Endometriosis is so much more than “just cramps” or “bad periods”. While minor menstrual pain (defined as mild pain that does not interfere with one’s normal daily routine) is common, the pain caused by endometriosis is often much more severe. Imagine feeling as if your abdomen has been cut open from hip to hip and battery acid has been poured into the wound while your insides are being twisted until they tear. Pain that is so gripping that it causes vomiting, shaking, cold sweats, and even fainting. Now we are getting into the ballpark of just how intense the pain can become. To further put the degree of pain in perspective, it is not uncommon for women with endo who have endured unmedicated childbirth to share that for them, labour and delivery were actually less intense than their endometriosis pain.
Believe me, we have tried every over the counter medication, many prescription medications and every type of home self-care modality possible. We’re not being drama queens, faking it, drug seeking, or being “too sensitive.” It really hurts. We appreciate when you try to understand.
“Why don’t you just get a hysterectomy?”
While hysterectomy (removal of the uterus) can help reduce uterine pain (such as caused by endo’s cousin adenomyosis), endometriosis is by definition found outside of the uterus. This means that even if the uterus is removed, the disease still remains in place to wreak havoc. The good news is that an expert integrative approach combining expert excision to remove the disease, dietary therapy, pelvic floor physical therapy, and acupuncture is often very effective in permanently treating pain and even improving fertility. There is so much hope that this will get better!
“Just have a baby. My friend’s aunt cured herself that way.”
Although it is a common misconception, endometriosis is not “cured” by pregnancy or menopause. While some women find their symptoms improve during pregnancy and nursing, more often than not the pain returns. To add insult to injury up to half of all women with endometriosis struggle with infertility and subfertility. So even if this myth were true, it is out of reach for far too many infertile women who desperately want a baby.
“When are you due?”
Many people don’t realize this, but endometriosis can cause a lot of bloating. This bloating is often humorously referred to as “endo belly” in the endometriosis community. It can be due to inflammation, intestinal adhesions (scar tissue), bowel disease, food sensitivities and even muscle dysfunction among other causes. This is a problem when well-intentioned people mistakenly congratulate women on their “pregnancy” when in fact they are bloated due to a disease that is the leading cause of female infertility. It can be a devastating experience for everyone involved. As a general rule, don’t ask about or congratulate anyone on their “pregnancy” unless she herself has shared with you that she is expecting.
“I’ve read that if you don’t believe you have an illness, it will go away on its own. You must really want to be sick.”
This is perhaps the most offensive one we hear. Endometriosis is not caused by trauma, abuse, rejection of femininity, negative energy, or any other psychosomatic cause. The truth is that it develops very early in embryonic life, long before we have even developed consciousness. It is predetermined and truly is not something you have brought onto yourself. It isn’t a character flaw. It isn’t your fault. Effective treatment exists but requires expert professional care. The disease, unfortunately, cannot be wished away.
“What is helpful to say instead?”
Let go of old myths, dismissive attitudes, and misconceptions. Learn up to date information about this disease; most of the information and attitudes out there lag far behind modern research. We need to have an open, honest, and accurate discussion about endo and abolish any feelings of taboo, embarrassment or shame about having or discussing a gynecological disease or symptoms. Nothing will change if we keep the disease, research, and very real struggles a secret. Combining a keen modern understanding of the disease along with empathy and support can go a long way in improving quality of life and relationships. With accurate education, healthy coping skills, and finding effective expert integrative treatment, those living with endometriosis can live the healthy, vibrant and even pain-free lives they deserve.
Endometriosis Resources:
Pacific Endometriosis and Pelvic Surgery
Nancy’s Nook Facebook Endometriosis Education and Discussion Group
And of course many dietary resources here at www.thenutritionista.ca
What has been the most frustrating thing that people in your life have said to you about your endo? How do you respond to such comments? Let me know in the comments below, and on Facebook and Twitter!
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© 2015 Nutritionista. Erin Luyendyk, RHN. All rights reserved.
All material found on www.thenutritionista.ca is intended as general educational material only and should not be considered medical or nutritional advice. It is not intended to diagnose, treat, or cure any medical condition and has not been evaluated by the FDA. Please consult with your personal physician before implementing any health, nutrition, supplement or exercise program to ensure its safety and suitability for your specific individual situation
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The hardest thing said to me was just harden up and get on with things
I’m so sorry you are going through this too Carrie. I agree it is very hurtful when people minimize our pain and tell us to “just get on with things.” It isn’t quite that simple unfortunately. With expert integrative treatment it can get so much better; it is not a hopeless disease. But it isn’t going to go away on its own, we need effective expert care and ideally early diagnosis.
Like others out there I have gone through several surgeries and have missed a lot of work due to endo. At my last job I was asked several times if my surgeries were really necessary and if I would be able to come back to work the next day. Or if I called in because of my pain my female boss would say “if I can work during my period, you can too”. These were just some of things that would frustrate me. I really hope that more people become educated on this disease. It’s not just about having a painful period. I have pain even when I’m not having a period. Not to mention the pain that comes along with cysts, especially the one I had that ruptured, causing my ovary to rupture which then caused internal bleeding and bringing me very close to dying. I am so happy for sites like this that bring support and education about endometriosis. Hopefully with awareness month more and more people, men and women will be educated.
I’m so sorry that you are going through this Denise and thank you very much for your kind words. We all need to speak up in a united voice to raise awareness and educate on the realities and effective treatment for endometriosis and associated disorders. I agree it is incredibly frustrating when people – colleagues, doctors, relatives, friends – think that we just have “bad periods” or simply can’t handle a normal period, which obviously isn’t the case at all. I know I harp on accurate education for everyone (health professionals, patients and the public) all the time but I truly believe that is the way to dispel old myths, beliefs and stigmas that hold everyone back. Most of the time, when people know better and have a much clearer understanding of any disease their attitudes, beliefs and actions evolve for the better as well.
i had a dr tell me to just keep having babies. I was 23 and a single mom of a newborn. That wasn’t a solution for me. I had tried hard to have my daughter and her father left.
When I told my Mum that the Surgeon said “my ovaries were leaking blood into the peritoneum” and I might not be able to get pregnant……she merely said…….”well you’re not even married yet so why are you worrying”
I never did have a child although I was often pregnant (up to 6 weeks) before the foetus was expelled
I was told by a doctor once, who was supposed to be researching endo, that most women just learn to live with it.
I ended up getting blood transfusions and an emergency hysterectomy and ovaries removed, now 5 years later, no pain, but I take no hormones. Any suggestions?
I have suffered with it for 30 years been fortunate enough to have babies, several operations, including hysterectomy and at the last appointment got told there is nothing more that can be done for me. My insides are horrendous. It made me feel totally isolated and I know it is coming back worse than ever. I feel for each and everyone of you 🙁
i struggled with endometriosis from the time I was 12 until my hysterectomy at age 33. Thank you for your thoughtful, well written article. For me, the hysterectomy felt like a miracle. I’ve had no pain, no bleeding, no more birth control. I’m so grateful for the surgeon and the medical technology that freed me from the crippling effects of this illness.
I blogged this six years ago…
I was at the pharmacy today, waiting in line, feeling just fine, when I was suddenly doubled over with a cramp. A lot of them I can ignore and just move through. This one I could not. I clutched my middle, took a deep breath, and did my best to straighten up. The woman in line behind me was maybe 30 years old, and she was quite concerned, asking me if I was alright. I told her that I was fine. She kept asking over and over if I was sure. By that point, I really WAS fine. It had gone as quickly as it had come.
I suppose I should have just kept insisting that I was fine and not tried to reassure her via elaboration. However, I did not. I said, “I have endometriosis, so the pains come and go a lot, but I really am alright.” That reassured her alright. She replied, “Oh endometriosis. That’s nothing right? That’s just a bad period right? I get those. I know what that’s like, girl.” Oh okay then. Well good. I didn’t say anything else once she was reassured that I was fine because endometriosis is “nothing”, but I seethed all the way home.
This is what I SHOULD have said:
Just a bad period? You know what it’s like? Do you now? Really?
Endometriosis is NOT “just a bad period”; it is a disease. It is a disorder in which tissue normally found inside the uterus begins to grow elsewhere in the body—you know, OUTSIDE of the uterus, where it does not belong. It was finally classified as an autoimmune disease in 2008. All of that notwithstanding, I can supply you with a whole lot of personal experience.
So you know what it’s like, huh? Really?
Do you know what it’s like to go to work feeling fine one cold Wednesday morning and then wake up in the hospital four days later with no clear recollection of anything that happened in between? Do you know what it’s like to lose four days of your life?
Do you know what it’s like to hear that your white blood cell count was astronomical, that your temperature was spiking at 105 and maintaining at 103, that you were hallucinating, ranting, and combative, that you ALMOST DIED?
Do you know what it’s like to blow IV after IV because they are pumping fluids and antibiotics into you faster than your poor veins can keep up? Do you know what it’s like to be in a hospital bed surrounded by your family and friends, trying to convince them that you really are okay, when you are secretly wishing that you’d have just gone ahead and died because you’ve never been so miserable in your entire life, and that INCLUDES the time when you lived in the 3rd world and had dysentery?
Do you know what any of that is like?
Because I do.
Do you know what it’s like to spend five weeks on strict bed rest, yet be unable to actually rest? Do you know what it’s like to be unable to sleep in your own bed with your partner because it’s simply too big and not supportive enough? Do you know what it’s like to spend five weeks on the couch in a state that’s neither awake nor asleep? Do you know what it’s like to NEVER get more than 30 minutes of sleep in a row for WEEKS at a time?
Do you know what it’s like to throw up from the pain every single day, more than once? Do you know what it’s like to be totally unable to get comfortable? Not be able to sit? Not be able to stand? Not be able to lie down? Do you know what it’s like to be so weak that the book you’re reading is TOO HEAVY to hold?
Do you know what any of that is like?
Because I do.
Do you know what it’s like to be held together and temporarily patched up with antibiotics, painkillers, anti-inflammatories, and anti-nausea drugs to make it through the most important and anticipated event(s) of your life—your wedding and your honeymoon? Do you know what it’s like to be in a country not your own, during what is the happiest time of your life, with the threat of “relapse” ever looming over your head?
Do you know what any of that is like?
Because I do.
Do you know what it’s like to be thrown into abrupt, pre-mature, forced menopause in a quest for some relief of symptoms? In hopes that the endometrioma will shrink just a tiny bit? Do you know what it’s like to have hot flashes immediately followed by chills so violent that your teeth chatter? Do you know what it’s like to have the muscles in your legs ache so badly ALL OF THE TIME that they are never ever comfortable? Do you know what it’s like to have your insides cramp so violently that nerves pinch and make the SKIN on your LEGS hurt? Do you know what it’s like to weep violently for an hour over ICE CREAM? When you don’t even LIKE ice cream? Do you know what it’s like to go from being someone who, two years ago, could lift 350 pounds with her legs to someone who calls it an accomplishment if she can now take a 30 minute walk?
Do you know what any of that is like?
Because I do.
Do you know what it’s like to have a “routine” 20 to 30 minute laparoscopic surgery turn into a not so routine four hour surgery? Do you know what it’s like to wake up and hear your doctor tell you that you’ve got the worse case of endometriosis she’s seen in 25 years? Do you know what it’s like to discover that she’s had to unhook one of your ovaries, your uterus, and both of your Fallopian tubes from your abdominal wall? Do you known what it’s like to learn that she had to un-bury your other ovary from behind a wall of scar tissue, that you still have endo all over your bladder and bowels, that they removed all of the adhesions, endometrioma, and scar tissue that they could but that the damage was still extensive? Do you know what it’s like to hear the news that both of your tubes are scarred shut and the ONLY way you’ll conceive the child you so desperately want is via IVF, and that even with the IVF it’s not ducking likely to happen because your ovaries have been so compromised?
Do you know what any of that is like?
Because I do.
Do you know what it’s like to be so worn down, so weak, and so exhausted that you don’t recover from said surgery? Do you know what it’s like to go back to the hospital with a post surgical infection and have to stay longer than you stayed the first time? The time you almost died? Do you know what it’s like to develop an infected pocket of post-surgical tissue the size of a melon in your abdomen? Do you know what it’s like to have the prognosis be so dire that they call in infectious disease specialists to consult on your case? Do you know what it’s like to drink a half a gallon of barium so that they can get a clear look at your ravaged insides? Do you know what it’s like to struggle to hold down that barium until they’re finished with the MRI? Do you know what it’s like to publicly humiliate yourself by vomiting on the table? Do you know what it is to have your veins so decimated by multiple IV sticks and fast push, high caliber antibiotics that after every nurse on your floor takes their three stick maximum attempt, they have to call a neonatal nurse to finally seat yet another IV? Your SEVENTH in five days?
Do you know what any of that is like?
Because I do.
Do you know what it’s like to finally be sent home only to do another six weeks of strict bed rest? Once again living on the couch? Being unable to walk? To bend over? To sit? To lay? To stand? To poop? Once again existing in that state that’s neither asleep nor awake? Do you know what it’s like to be so bloated and in so much pain that you cannot fathom eating anything? Do you know what it’s like to live on a Slurpee for a week—one that you FORCE yourself to consume so your partner will stop worrying maybe just a little bit? That’s not a Slurpee a day for a week, by the way; that’s the SAME Slurpee all week long. Do you know what it’s like to run a fever of over 100 degrees for days on end? Do you know what it is like to be literally held together with pills and Gatorade? Do you know what it’s like to see your doctor THREE TIMES A WEEK for three months, twice a week for three more months, and once a week for three more after that before she finally feels confident enough to release you to yet another doctor?
Do you know what any of that is like?
Because I do.
Do you know what it’s like to hand over the fate of your reproductive future to a Reproductive Endocrinologist and an Embryologist? Do you know what it’s like to inject yourself with stimulation hormones, twice a day, for days on end? Do you know what it’s like to have your ENTIRE life revolve around your ovaries? Do you know what it’s like to be hopped up on about six times the amount of hormones that the average human female would produce on her own? Do you know what it’s like to ride that emotional roller coaster? Do you know what it’s like to be stripped of all privacy and dignity while you hang upside down in a chair, with your entire lower half naked and exposed to a room full of people while they put the paltry TWO embryos you managed to produce back inside of you? Do you know what it’s like to fail attempt after IVF attempt? Even worse, do you know what it’s like to succeed and have that happiness for a few days before you watch the life bleed out of you for days on end?
Do you know what any of that is like?
Because I do.
Do you know what it’s like to have all sexual spontaneity ripped from you? Do you know what it’s like to DESPERATELY want that intimate physical and emotional connection with your partner but have to weigh carefully how you have felt during the rest of the day or what you may have to accomplish the next day? Do you know what it’s like to crave the connection and the pleasure but still KNOW that at some point during the encounter that it WILL hurt? Do you know what it’s like to not even be able to prepare yourself for that eventuality, because it hurts someplace different every time—on penetration, or during the changing of a position, or if you move even a fraction of an inch the “wrong” way (but you never know which way the wrong way is), or upon orgasm? Do you know what it’s like to tell your partner “no” time and again when YOU DON’T REALLY WANT TO but you HAVE to? Do you know what that disappointed look is? Do you know what it does to a person? To both of them, in fact?
Do you know what any of that is like?
Because I do.
Do you know what it’s like to feel absolutely fine one second and be doubled over in pain, gasping for breath, with tears running down your face literally ONE SECOND LATER? Do you know what it’s like to lay on the bathroom floor in a puddle of your own vomit? Do you know what it’s like to have to PREPARE to have a bowel movement—to have to put a trashcan between your feet and wedge yourself tightly against the sink just in case it hurts so much that you either (a) vomit from the pain, or (b) pass out, or every once in awhile (c) both? Do you know what it’s like to be so physically exhausted that you cannot even provide a meal as simple as grilled cheese or spaghetti for your family? Do you know what it’s like to be so mentally and emotionally exhausted that a task as mindless and easy as putting away the dishes can reduce you to hysterical sobbing? Do you know what it’s like to go from being a die-hard gym rat to barely being able to drag yourself out of bed in the morning? Do you know what it’s like to be CONSTANTLY aware of your ovaries because they ALWAYS hurt—one shooting sharp stabbing pains and the other one sitting like a glowing hot ember low in your abdomen? Do you know what it’s like to not be able to make any real plans more than a few hours in advance? Do you know what it’s like to have to go in and have ovarian cysts aspirated (and I’ll even skip the details on how they go about doing THAT) every couple of months? Do you know what it’s like to have to give up nuts and seeds? Do you know what it’s like to do that while BEING A VEGETARIAN? Do you know, do you have any idea, what it’s like to have complete strangers say insulting, hurtful, and grossly uneducated things to you when they have absolutely no idea what they’re really talking about?
Do you know what any of that is like?
Because I do.
Do you know what any of this does to a person? Mentally? Physically? Spiritually? Emotionally? Do you know how it wears you down? How it eats away at your self confidence? At your self esteem? At your desire to do pretty much anything at all? Do you know what it’s like to have to watch the person you love watch you go through this? Do you know what that does to a person? The feeling of knowing they’d be better off without you? Of knowing that this whole mess really isn’t fair to them? The fear of wondering why they don’t just go out and find a whole and healthy person? Do you know what this does to a person’s outlook on the world? Do you know what it’s like to deal with all of this and still have to be strong and “give face” and be “on” so that you can be a functioning, contributing member of society instead doing what you REALLY feel like doing which is either sitting in a corner and sobbing, running shrieking through the streets, or on a really bad day simply shooting yourself in the head to make it all end?
Do you know what any of that is like?
Because I do.
So don’t you tell me that endometriosis is “nothing”. Don’t equate it with “just a bad period”. And unless you know what even ONE of these things feels like, let alone ALL of them, then don’t you DARE tell me that you know how it feels.
Because you don’t.
next time you get his reaction of someone please repeat all you just said here and then look at their reaction
may help the next one not be so stupid
Laura,
Thank you for sharing. I too have had the same experiences. 14 laps, total hysterectomy, 3 rectal abscess repairs. Plus took six months of Lupron twice to help. Plus two more abdominal surgeries to remove the endometriomas ,I now have been told that I have 5 large cysts and a right ovary. Guess it grew back. Where I live there are not any educated physicians and the last Obgyn told me it was scar tissue and I would just have to live with it. This disease takes your life away in more ways than anyone could imagine. I’m searching for a knowledgeable doctor but have yet to find one. I live in Kentucky, USA. I am truly tired of how this disease is treated. Where is the compassion?
Sincerely,
Sharon Grider
Sharon I am so sorry to hear of everything you have been through. Have you checked out the Facebook group Nancy’s Nook? They might be able to point you in the direction of an excision specialist. Good luck!