5 Things to Do Before Your Endometriosis Surgery

5 Things to Do Before Your Endometriosis Surgery

Unfortunately, surgery is something that every endometriosis patient has to endure in order to find lasting relief for her symptoms.  The phrase many doctors use to introduce surgery, “Well, let’s go in and take a look” sounds simple enough, but there are deeper implications of what that means to the patient.

I just recently had my 6th endometriosis surgery, an endometriosis excision with Dr. Seckin. The idea of having surgery means something very different to me now than when I first learned I had to have my appendix out almost a decade ago. I don’t know if it that I have gotten better at having surgery or it is just that I now have a better surgeon, but these past couple of recoveries have been a lot smoother overall. I also attribute my post-op success to knowing what to expect during surgery and being able to physically and mentally prepare for it.

Here are 5 things I do before every surgery:

  1. Get my body ready: My past surgery was an extensive one, so I wanted to make sure I was in the best shape possible going in. I tried to go for walks when I felt up for it just to get my body moving and feeling strong. I made sure I drank at least 64 ounces of water every day starting two weeks before the surgery to be nice and hydrated.

Why Surgery Can be Ineffective in Endometriosis Treatment

Originally posted on discussion group.Why Surgery Can be Ineffective in Endometriosis Treatment by Nancy Petersen

 

Why does surgery not work? There are a number of issues, and I will try to cover them here. (at least some of them) Endometriosis gets about 15 minutes of lecture time in med school. Many med schools are still teaching Sampsons theories about endometriosis, 1. black disease on the ovary. 2. caused by menstrual fluids backing up and the cells fall like snowflakes and implant and grow where ever they land, 3. caused by delayed child bearing (career womans disease) and a few other idea.

 

Later an OB/GYN when doing a c section noted a black blood filled cyst on an ovary of a women who had NOT been diagnosed and who had NO symptoms of endometriosis. He removed the cyst and sent it off to pathology, and the report came back as a cyst with old blood, containing no endometriosis. Conclusion? This asymptomatic woman had endometriosis cured by her pregnancy! Surprised me too, lol. On that one case presented to medical groups and published an entire industry of pregnancy/bc’s/ period suppression was born. That is the science behind medical therapy for endo.

 

Well, Sampson’s theory was also a driving force in treatment. But both were wrong, and yet the tide of mis-information proven over and over cannot be turned. One has to ask why?

 

First retrograde menstruation happens all the time, more often in china where second pregnancy abortions are common. The suction causes a back pressure that draws blodo and fluid into the pelvic cavity. Yet they have no higher rate of endometriosis than elsewhere.

 

Next, to transplant a tissue from one part of the body to another, initial attachment is part of the process. If you do skin grafts, the burn will be covered but you will always be able to see where the attachment of the new cells take place,. It does not go away. This is missing in Endometriosis.

 

Next when a tissue moves from one place to another, (endometrial cells from uterus to abdominal/pelvic cavity) they do not change their appearance and function. And yet when you compare endometrial cells from the lining of the uterus and the endo implants you find hundreds of differences but the most glaring is the lack of estrogen receptors( little gateways for the cell to take in estrogen and other hormones).

 

Many other difference exist so the implants and the lining of the uterus while similar are clearly not the same tissue. So one has to wonder if it really could be cells from the uterus. Most thinking people would say no. And yet, we have come up with one hormonal therapy after another for cells that are immature , contain few receptors, and then we tell patients the drug therapy will “cure ” their endo, when it primarily shuts down estrogen production. Yet patients often have break through pain while on medical therapy. It makes sense but way to many patients are told that is not possible.

 

In addition to side effects, there is real danger than gnrh agonists, destroy bone that cannot be replaces and I have heard one patient after another comment that their ovarian function never returned to normal. For older women this might be ok, for younger women still hoping to conceive, this is not a good thing

 

You can find a more intelligent discussion of Sampson and where he went wrong in things I posted a few days ago, or you can go to Dr Redwines page and click on the articles link. It is important to understand the basic beliefs about endo have been proven wrong through multiple researchers as long as 27 years ago, but are still taught and guide practice today.

 

Statistically, endo appears in 9 other areas of the pelvis and abdomen more frequently than the ovary, Could that with the black powder burn concept, which is only positive for endo half the time, and you miss 75% of the disease, left behind to be a source of continued pain.

In the early 1980’s, Dr David Redwine was starting in private practice in Bend Oregon. He had the usual 15 minute lecture on endometriosis in medical school like everyone else. However he noted when taking histories from patients, and when taking patients to surgery he was finding things that were not covered in medical school. You may remember from part one that Dr John Sampson sent the industry on an erroneous path in 1925 when he began espousing that endometriosis was black powderburn disease on the ovary. We further went astray because he proposed that delayed pregnancy was likely a causative factor was was retrograde menstruation (period blood backing up through the tubes), and that no matter what you did endo would always come back. This was followed by an observation by an OB doc who did a C-section on a woman who did not have endometriosis, nor any symptoms of endometriosis, and found a dark colored cyst on an ovary, which he removed.

 

That specimen was sent to the pathologist and came back as negative for endometriosis. Yet he proclaimed and presented in the literature pregnancy cured endometriosis.

 

On those two doctors “findings” an entire industry was founded on endometriosis treatment, later came bc’s and gnrh agonists to stop periods and cure endo. None of this worked, but fancy targeted marketing convinced busy doctors this was the way to go.

 

Now as Dr Redwine began to see these things he did not previously learn about, his curiostity was piqued, and added to that, his first wife had endometriosis.

 

He began seeing things in the pelvis which which clearly were not black powder burn disease described in text books and medical school lectures. So he began systematically biopsying everthing that looked abnormal. White stuff (often refered too as burned out disease, so left behind), clear blister type stuff, red stuff, orange stuff, blue stuff and yes even black stuff. Each and every lesion was sent off to the pathologist for study, and most came back positive for endometriosis. The black stuff came back as endo only part of the time, the rest of the time it was coming back as iron staining aka hemosiderin. Hemosiderin is the iron in the blood. Since endo caused bleeding in the surrounding tissue (early endo does not have blood vessels or nerve supply) it made sense that over time some iron staining would be left behind.

 

These findings prompted him to do a complete review of the available literature on endometriosis that had been published at that time. He found some amazing things, first that Meigs in the 1950’s found that careful removal of endometriosis implants caused very few patients to have recurrences. He also found an obscure article in Arizona Medicine in 1969, an article by Jansen, that described the endo he was finding in the pelvis as clear papule, red, yellow, orange, blueberry, and black and in some patients all of the appearances were present at the same time. Whoaaaaaa Nellie.

 

No he didn’t say that, I did when I first attended one of his lectures, I said to myself, how could we be so dang far off??

 

After he completed his review of the literature, he designed and pursued several studies and data accumulation. He found the following (apologies to the researcher if I leave anything out)1. Endometriosis evolves in color as it ages

 

2. Black powder burn lesions are not always endometriosis. So taking into account these two findings, if you are looking for black powder burn disease, taught in medical school, you miss 75% of the disease, left behind to continue to cause pain and disability. Regardless of how many surgeries you have, if the operator does not know this, you are in trouble

 

3. Statistically endometriosis occurs in 7-9 other places more often than on the ovary. So again if you are looking for black powder burn disease on the ovary your chances of freeing the patient of pain are likely to be very low. He also found the smallest of lesions were around the size of a human hair easily seen at arms length.

 

4. He found that endometriosis implants when you look at them do not have blood vessels or nerve tissue, and so they do not bleed, but they appear to cause bleeding in the surrounding tissue, and endo will be someplace other than where the blood is.

 

5. He found that endometriosis was a static disease, meaning that women who had the disease longer did not have more areas involved. You would expect that the longer you had the disease, the more it would spread. This is not the case. It is important because doctors were pessimistic about surgery thinking it would always come back, There is a small percentage of patients who will have recurrences in areas that were previously resected. This may be in metaplasia or in the dna. But meticulous excision considering all of the issues here, color, location, a patient could be permanently relieved of symptoms, and now over 3000 cases this has held true. (his cases, there are many more with some of our advanced surgeons like Robbins, Albee, Dulemba, Sinervo, etc)

 

6. He found that endometriosis did not transplant. When you transplant a tissue from one place to another, there is evidence of initial attachment. The place where the tissue attaches has a line that does not go away, it is always a transplant. So retrograde menstruation theory so prevalent in the industry is unlikely the cause of endo

 

7. He found in his literature reviews that endometriosis lesions are very different than the endometrium of patients with the disease (in dozens of ways). The most glaring is that endo lesions in the pelvis do not have the same hormone receptors that endometrium (the lining of the uterus) does. Makes one wonder how these lesions could predictably pick up hormones to destroy themselves. The question that has always troubled me is, how to you destroy ectopic endometrium (endo lesions in the pelvis) with out destroying normal endometrium (lining of the uterus.). Or how do you wake up ovaries after they have been supressed. I have spoken to a number of women who’s ovarian function never returned to normal after gnrh agonists. This is important when one wants to retain fertility.

 

so to recap about surgery not being effective or dozens of surgeries not working, (most in one patient I saw was 22 surgeries before finding an excisionist)

 

you have to know where it is found statistically, you have to have skills to access it everywhere (diaphragm which actually requires a small incision)(retroperitoneally outside the pelvis, on uterosacral ligaments or on small bowel) (floor of the pelvis, behind and below the uterus, not everyone has developed skills to work there), you have to know the color manifestations the disease has in different stages and to know all stages can be present in the same patient, you have to have a bowel surgeon on had or have privileges certified in the hosp where you work to do your own bowel surgery, you have to use some method of finding more subtle diseaes whether you use the robot, or you use blood painting * , (a way of using fluid found in the pelvis to wash over the peritoneum. the fluid will wash around lesions like a shallow stream over pebbles.)or you push your scope closer to the peritoneal surfaces in the pelvis and over lying the organs and look for abnormalities. A physician can teach himself or herself with simple magnification how lesions look and how removing them improves the patients lot.

 

As surgeons come to excision they will not be proficient until they have done a number of cases and maybe reoperated on a few. But this is the scienfic way, develop an idea, try it, study it, measure results, re-try failures, measure results.

 

To get the best out come from a surgery, we need to buy the best skill we can afford, it is unlikely that a ob/gyn with a booming baby and gyn practice can or will have the time to commit to the devastating pain and disabilty that women with endo face. If we keep doing what we have always done, we will get what we have always gotten, poor outcomes at surgery,

 

While endometriosis may infact be two different kinds of disease, clearly the majority of us, can be helped significantly with excision of disease, and many of us now pain free for 15-20 years consider ourselves cured. That is possible for most. But we will not change the industry until we vote with our feet and seek endo care from the best of the best. Where finances are a problem, then make a plan to accumulate what you need, rely on those willing to help, do what ever it takes to get into the best possible hands.

 

Dr Redwine’s work has been dubbed Modern Concepts because he reviewed the literature and looked for the scientific methods used to determine what endo was, where it was found and how it was treated and found science lacking in almost all of the conclusions that had been made about this disease. He set about studying it in his own population of patients from around the world and found stunning conclusions, now confirmed by many others, some of what he found in the literature was accurate but so deeply buried it never had a chance to reach mainstream application,

 

Initially it was just him doing this surgery, then came Bob Albee and now many others in the US, and Dr Redwine has taught these surgical techniques around the world and many surgeons have gone to Bend Oregon to watch his work, some even came with their patients.If you are still with me, thanks!

18 Women With Endometriosis Reveal What They Want Everyone To Know About Their Struggle

1.

Fiona Phillips

“It took me nine years (of agony) to be diagnosed with endometriosis!”

2.

Jessica Brandon-Nelson

“I’m scared I may never have my own baby… and that is all I want!”

3.

Althea Atherton

“They told me I was imagining my pain, but it was endometriosis.”

4.

Andrea Hess

“Every time I had my period, I felt like I had the flu.”

5.

Ashlee Rohnert

“I’ve always had ‘bad’ periods. A recent endo diagnosis felt validating and islolating.”

6.

Susan Parker

“Because of my endo I was never able to run or do any type of exercise that involved jumping or bouncing.”

7.

Madison Featherston

“I saw over five different OBGYNs by the time I was 18.”

8.

Gabriel, Karishma

“[Endometriosis] makes me feel defeated and angry.”

9.

Tamara Main

“I would have one ‘good’ week a month.”

10.

Lia Seth

“I assumed that my pain was ‘normal’ for YEARS.”

11.

Jessica O’Connor

“The pain is 24/7. Endometriosis has become my other half… that scares me.”

12.

Danielle Lavieri

What it feels like:
– Imagine the worst cramps you’ve ever had
– Now multiply that pain x10
– Now imagine that pain being a NORMAL, FREQUENT part of your life.

13.

Kelsey Kaste

Kelsey Kaste

“Pain, hospital visits, medications, imaging, pelvic exams, ultrasounds, exhaustion, massive procedures, trial and error, rectal exams, and unknown have all become routine.”

“But yet, nobody has an answer because endometriosis can’t be seen on the outside and I look “OK!”

14.

Olivia Kindschuh

“My treatment put me through menopause at 23, and left me with chronic migraines.”

15.

Narmin Jarrous

“It took four years of being called a hypochondriac before I was diagnosed.”

16.

Lara Parker for BuzzFeed

“I get so bloated that I legit look 5 months pregnant.”

17.

Corrine Mihailovic

“My doctor believed that I was lying about the pain for years just to get drugs.”

18.

Brittany Curtis

“I was medically put through menopause at the age of 15.”

20 ESSENTIAL THINGS TO DO WHEN YOU ARE DIAGNOSED WITH ENDOMETRIOSIS

Self-help bridges the gap between the debilitating effects or illness and the regaining of health. Patient empowerment can help to motivate people to regain their ‘wellness’.

Once you have been diagnosed there are therapies which you can use on the road to recovery which have nothing to do with drugs and surgery.

Never assume anything. Always ask questions. Ask the consultant. Ask your doctor. Ask other women with endometriosis – and keep asking. Your answer is out there somewhere and you are collecting pieces of the jigsaw which will be your individual key to health.

  1. Endometriosis is not a fatal illness. The pain is real and we have to learn how to control it. Learning about pain helps to ease it with the right treatment for you.
  2. Take charge of your treatment. Ask yourself what you want and organize the strategy you want to follow. Choose your healing team and work with them towards your goals, be they pain reduction or regaining your fertility.
  3. Ask your doctor some useful questions.a. Where is my endometriosis growing?

    b. Have you done biopsies?

    c. What stage is my endometriosis according to the American Association of Reproductive Medicine scores?

    d. What additional tests are needed?

    e. Would laser surgery be the best option?

    f. What are my treatment options?

    Be active and ask all the questions that you need answers to.

  4. Get a second opinion. If you feel unhappy about what is being recommended to you, seek help elsewhere. It is no crime to want the best for your body. Women in your local group/chapter or at the charity office may guide you to consultants who do specialist research if that is what you need. Talk to them.
  5. Informed Consent. You can only know which treatment is right for you if you have read, talked and reviewed your treatment options. Find out as much as you can from other women. Many use a combination of orthodox and complementary therapies to help them heal. The point is that you must choose what feels right for you as an individual.
  6. Be sure of your doctor. At times when you are wracked with pain or feeling depressed because no pregnancy has occurred you need the best doctor. Find one with good interpersonal skills – the one you can talk to, who listens and works with you. A doctor is meant to be your friend and guide, never your enemy.
  7. Think hard about your treatment decision. Check that you have been given consistent information. You must be satisfied that your information gathering has been complete. Listen to the women who have got well and then decide.
  8. Give Informed Consent. You need to know in detail the risks from taking drugs, from having surgery, the effects of anaesthetics and from complementary therapies. NEVER sign a consent form unless you are crystal clear about the procedures. The consultant should explain everything to you openly. Cross out statements you do not consent to. Write in your own statements if necessary – like ‘I do not wish to have any organs removed without being consulted after exploratory surgery’. Make sure the procedure is described to you before you consent.
  9. Believe. If you are happy with your choice of treatment it will make a difference. Optimism is infectious – if it feels right go for it, wholeheartedly. If not review your options.
  10. Appointments. Take a friend or partner with you to appointments. The information you and your doctor share are an important part of your recovery. Trust and honesty play key roles. Be open and assertive as to your needs and expectations. Say thank you when they respond in kind. Your doctor is your healing partner.
  11. Lifestyle is a personal choice, but some of the keys to healing involve a good diet, gentle exercise and relaxation and stress reduction. Do what you can as these factors play a role in your healing.
  12. Total wellness, living well, feeling content is important to you. You have to take care of yourself. Decide to be well, it is your goal. Aim straight and true.
  13. Eat well. It is important to give your body the tools it needs to heal. These tools come from the food available. Chose the freshest options and ditch the manufactured foods. Go for gold, the top nutrient intake.
  14. Avoid stressors. Foods which stress your body are coffee, strong tea, chocolate, fizzy drinks, alcohol and cigarettes. Decide what is important in trying to heal. Only you can.
  15. Drink fresh water. Replace your body fluids frequently. 8 cups of water per day is optimum. Use a water filter or bottled water.
  16. Use nutritional supplements as a tool. They can boost your cells. Be careful, read and study what you will need. Consult a nutritionist who specializes in women’s health. Combined with a healthy eating programme for 3-4 months they may speed up the body’s ability to heal.
  17. Rest, sleep and exercise. All are important. Give yourself permission to be ill and allow your body the time it needs to heal. Go gentle walks, maybe visit your local pool and just allow the water to take your weight. Sleep when your body tells you it is tired.
  18. Read books. As you heal it will help you to read and understand just how your body can heal itself. Endometriosis is a challenge. Adequate rest and relaxation give you more energy to help yourself to heal.
  19. Use visualization. Imagination sets you free to be just what you want to be. Make mental pictures of yourself bouncing with health. Visualize your uterus and ovaries as pink and glowing with health. Imagine your cysts and endometriotic implants shrinking away. Be positive. We know women who do heal – why not you?
  20. Learn to laugh and play again. When we are ill, in pain, trying so desperately to get pregnant we lose a part of ourselves in the trauma. Find your smile again. Watch funny films, do things which give you pleasure into your life. Chose to spend time with people who fill you with joy.

12 Things Women With Endometriosis Wish Everyone Knew

It took far too many years and way too many doctor’s visits for me to realize that I have endometriosis. My pain was downplayed; I was misdiagnosed; I was told to “suck it up” and I was told I had a slew of other potential problems before I realized that what was ailing me every month wasn’t just a “bad period,” but a very real, very debilitating, chronic disease. It didn’t take me very long, however, to realize that there are so many things women with endometriosis wish everyone knew, because I am one of those women and I have been faced with some rather uncomfortable, rather frustrating conversations because people either don’t know what endometriosis is, or don’t care.

“Period talk,” in this country is considered “inappropriate” or “uncomfortable'” or “gross,” so we don’t talk enough about what is ailing an estimated 176 million women worldwide, and 1 in 10 girls and womenin the United States. Instead, women whisper about endometriosis with their close friends and loved ones and healthcare physicians, pushing through a horrific pain and remaining relatively silent because, sadly, we’ve all come to learn that a woman’s health (especially a woman’s reproductive health) isn’t much of a priority in this country. As a woman with endometriosis, I have learned that my pain, no matter how severe, is rarely, if ever, taken seriously. So, instead of focusing my precious time and energy on attempting to convince those around me (sometimes even my loved ones and doctors) that my pain is legitimate, I simply deal with my symptoms as best as I can.

But that’s not good enough, and no woman living with chronic pain should be forced to suffer in silence. As a society, we need to value women, their reproductive health, and their overall health, in general. So, with that in mind, here are just a few things women with endometriosis wish everyone knew. It’s time to start a conversation. It’s time to stop whispering.

What Endometriosis Actually Is

giphy

So many people in this country, honestly, have no idea what endometriosis is. This makes it pretty damn difficult for women who are suffering from endometriosis to adequately explain what exactly they’re living with on a monthly (and sometimes daily) basis.

So, for those who don’t know, endometriosis is what happens when tissue usually found inside a woman’s uterus, is found in other parts of her body. Most commonly, this uterine tissue can be located in a woman’s ovaries, bowel, fallopian tubes, the exterior of the uterus and other internal parts of the body. As a woman experiences hormonal changes during her menstrual cycle, the tissue breaks down into painful adhesions or scar tissue. Symptoms can include painful cramps (that can occur even when a woman isn’t menstruating), nausea, vomiting, a heavy menstrual flow, periods that last longer than a week, painful sexual intercourse and infertility. Most women don’t realize they have endometriosis until they try to conceive a child, and approximately 30-40 percent of women who have endometriosis experience issues with their fertility.

No One Knows What Causes Endometriosis

So many aspects of endometriosis are misunderstood, and require further research so that we can better understand endometriosis and, most importantly, how to treat and help the women who suffer from it. So, sadly,there is no known cause for endometriosis. What’s important to know is the following:

  • Endometriosis is not “contagious” and cannot be passed from one person to another through sexual activity (or any other kind of activity).
  • There may be a genetic component to endometriosis, although it has yet to be isolated. However, women with a close female relative who has endometriosis are 5-7 times more likely to have endometriosisthemselves.
  • It’s believe that the immune system and the body’s inflammatory response system may contribute to endometriosis, although more research is needed to confirm this suspicion.
  • Some research suggests endometriosis can be present in developing fetal tissue, and is activated by puberty, as autopsies performed on infants have shown evidence of endometriosis.

That Our Pain Is Real…

giphy

Our culture is cavalier at best when it comes to women’s health, especially women’s reproductive health. Unless certain government officials are attempting to control women’s bodies, they don’t seem all that concerned with caring for them.

I can’t tell you how many doctor’s offices I have sat in, begging a physician to take my menstrual pain seriously. I can’t tell you how many romantic and/or sexual partners I have had to “convince,” when it came to my pain and how real it was (especially when it hurt to have sex). I can’t tell you how many people have told me I have a “low pain tolerance” when I need to take a day off school or work, because I can’t walk during the first few days of my period. My pain was rarely, if ever, validated because I am a woman and it’s a “woman’s pain.”

…And We’re Not Making It Up For “Attention”

I’ve never understood the notion that a woman would simply make up or lie about having a horrific pain in order to “get attention.” I mean, trust me when I say that the attention a woman gets when she openly speaks out about menstrual pain (or any pain, for that matter) is rarely if ever positive. We’re called “babies” and we’re called “weak” and we’re ridiculed for not being “as strong as men.”

The women who speak openly about endometriosis and how painful it is, are doing so because it’s a necessity. They’re doing so because our culture needs to start caring about women in a real, tangible way. They’re doing so because far too many people have no idea what endometriosis is, and that ignorance is no doubt keeping women from seeking the treatment and the support they need. Instead, women are in pain, suffering in silence, because no one takes them seriously.

Sometimes, It Hurts To Simply Walk

giphy

For the first two or three days of my period (sometimes a few days prior to my period actually arriving) I can barely walk. In fact, I can barely move. Every step in any direction is painful, and it’s extremely difficult to cope with that kind of pain without a steady regiment of narcotics.

That’s the kind of pain we’re talking about (for some) and it’s deplorable at best that we, as a society, don’t take women seriously when they say they’re in pain. Endometriosis isn’t just menstrual cramps (and, honestly, those are horrific, too) and so many of the symptoms of endometriosis can’t be “managed” or “cured” by over-the-counter medicines. This is why additional research is so vital, so that healthcare providers can better understand endometriosis and figure out a more effective way to treat it.

It’s Just As Important As Any Other Chronic Pain And/Or Illness

Perhaps it’s because endometriosis is, for the most part, found on a woman’s reproductive organs. Maybe it’s because our culture gets all weird and certain people cringe when we talk openly about a woman’s uterus or fallopian tubes. Maybe it’s because sex and reproductive education in this country has been lacking for so damn long. Maybe it’s just good old fashioned sexism.

Regardless, the pain a woman experiences at the hands of endometriosis is just as real, just as valid, and worthy of just as much attention as any other pain any other person could possibly experience on any other part of their body.

Not Every Woman With Endometriosis Wants Children…

giphy

While it is sad that endometriosis can cause infertility, that isn’t the only reason why it’s debilitating and why science needs to spend time better understanding it. A woman’s worth is not determined by whether or not she wants to, can and/or does procreate, so simply saying, “We care about endometriosis because it causes infertility,” is not enough. We need to care about endometriosis because it causes countless women pain. Period.

…But The Fact That Endometriosis Can Make It Difficult To Conceive Can Be Debilitating

However, I am one of those women currently experiencing fertility issues because of endometriosis. I am one of those women who got pregnant with twins, than lost a twin at 19 weeks and, while it can’t be said for sure, endometriosis very well could have been the reason why. I am one of those women trying to get pregnant again, and have suffered a miscarriage. Again. I am one of those women who might need to invest thousands of dollars on IVF in an attempt to get pregnant, knowing that IVF (when you have endometriosis) only increases your chance of securing a healthy pregnancy by 9 or 10 percent.

Endometriosis Can Make Sex Extremely Painful

giphy

It’s a symptom that’s not often talked about, because sex isn’t talked about enough. However, it needs to be. A woman shouldn’t feel like she needs to put herself in physical pain in the name of intimacy, yet so many men in relationships (and men who aren’t in relationships, actually) feel they are owed sex by their partner or the women in their lives. So many women feel like they need to put their physical comfort on the back burner in the name of sexual gratification or intimacy.

Consent is vital (and necessary) when having sex. Anything else, from coercion to sexual assault, is wrong on a number of disgusting levels. If we, as a society, were more open and honest and transparent about the number of women who feel pain when they have sex, perhaps more women would feel empowered to tell their partners that they don’t “feel like” having sexual intercourse when their endometriosis symptoms are at their worst (or, you know, any time they just aren’t up for it).

Telling Us To “Suck It Up” Doesn’t Help. At All.

“Pop a Midol,” isn’t helpful and, “Man up,” isn’t helpful and, “Get over it,” just isn’t helpful. Again, and sadly it is worth repeating; just because a woman’s pain is found in or near her reproductive organs, doesn’t mean it isn’t valid and real and worthy of treatment and someone else’s empathy. We must, must, start valuing women and their bodies. We must start believing women, instead of downplaying their very real pain and asking them to “act like men,” as if men don’t experience pain (and complain about pain and cry because of pain and seek treatment to ease their pain), too.

We’ve Probably Had To Fight And Advocate For Our Pain To Be Taken Seriously

giphy

If a woman with endometriosis looks exhausted, her symptoms aren’t the only reasons why. Chances are, she has had to fight for treatment. Chances are, she has had to convince someone that her pain is real. Chances are, she has learned how to advocate for herself on a daily basis, and that is as exhausting as it is frustrating.

There Is No Cure For Endometriosis

There’s a pretty powerful myth constantly circulating the internet thatclaims pregnancy to be a cure of endometriosis. Nope. There is no known cure, so a woman who has endometriosis, for now, will have it the rest of her life.

It’s More Common Than You Think, So It’s Time You Start Caring About It

giphy

An estimated 5.5 million women in the United States have symptoms of endometriosis,and 176 million women suffer from endometriosis worldwide. Yet so many people have never even heard of it. It’s time that we start caring about women’s health, in any and all capacities. Educate and inform yourself, talk to other people about endometriosis and, most importantly, listen to women and believe women and trust women when they say they’re in pain.