Voices of Endometriosis
Like many things in Western society, illness is something which many individuals aren’t quite sure how to navigate socially. There is a culture of fear that surrounds illness, a fear of saying the wrong thing, a fear of misunderstanding, a fear of the unknown, and the list goes on. Another complexity that comes into play in terms of illness is the subjectivity of pain and personal wellness. Unless we can psychically see and experience another individual’s symptoms, it is wildly difficult to quantify or categorize next to other sorts of pain and suffering. Furthermore, when a particular illness or ailment only affects a specific group of individuals, it appears those who are unaffected may struggle to understand/relate to those who are.
As individuals, it is difficult to understand that which we cannot see and that which we cannot feel; therefore, invisible illnesses and group-specific illnesses are tough for us to grapple with, both as individuals and as a society.
Journal of Advanced Nursing notes that having a chronic illness or condition and being different from the general population subjects a person to possible stigmatization by those who do not have the illness.
In advocating for everyone suffering from an invisible, misunderstood, and misrepresented illness, we’d like to say that just because something doesn’t affect us, this doesn’t mean that it doesn’t matter, and we most certainly do not have to “see it to believe it” when it comes to pain and suffering. We’d decided to explore invisible and group-specific illnesses, and in order to do so, we’ve decided to focus on one specific illness and gather accounts from real individuals with real experiences with it.
Endometriosis is incredibly under-researched, under-diagnosed, and unknown about for those whom it doesn’t affect (and even some of those whom it does on account of lacking information).
According to Endopaedia, individuals with endometriosis continue to endure years of diagnostic delay, misunderstanding by the medical profession, and sub-optimal and ineffective treatments, resulting in a life of chronic pain and debilitation.
Endometriosis is a complex and often debilitating disease affecting more than 176 million women worldwide, and in rare cases men.
What is Endometriosis?
The endometrium is the lining of the uterus which is shed each month when an individual is experiencing their menstrual cycle. Endometriosis itself is when tissue similar to the lining of the uterus (but not the exact same) becomes abnormally implanted somewhere outside of the uterus, mainly in the pelvic cavity, to form lesions, cysts, nodules, and other such growths. In terms of the pelvic organs, these growths have been found in the bladder, ovaries, tubes, bowel, and other pelvis-specific organs.
These growths are not specific to the pelvis, in fact, they have been found in the lungs, diaphragm, nasal cavity, and other organs throughout the entire body. This abnormality can cause a great deal of pain, internal scarring, adhesions (scar tissues which may connect organs inappropriately), infertility, and other serious complications.
Endometriosis looks vastly different for each individual who experiences it, which lends complications to the diagnosis process for medical professionals and individuals alike.
Symptoms include, but are not limited to:
- Painful or disabling menstrual cycles
- Pelvic Pain
- Back or leg pain
- Painful bowel movements
- Bladder pain
- Urinary urgency
- Urinary frequency
- Painful urination
- Loss of pregnancy
…and the list continues
This list simply reiterates for us the subjectivity of the word “pain,” because to some this list of symptoms may sound unpleasant, and to others, it may sound like an excruciating reality which they have had to endure or have been debilitated by.
Diagnosis or Lack There Of
In terms of diagnosis, it cannot be done through blood tests or medical imagery, and it may also be missed on an MRI or ultrasound. The only way to fall upon an accurate diagnosis is going through a laparoscopy, a surgical procedure.
On average, it takes seven to nine years of complaining about symptoms to medical professionals to receive a diagnosis of endometriosis.
In terms of a cure, there isn’t one but there are a number of treatments, some of which are more effective than others. The treatments include but are not limited to the following:
- Laparoscopic surgery
- Birth control pills
- Mirena IUD
- Dietary alterations
- Physiotherapy on the pelvis
- Stress reduction (easier said than done)
- Traditional Chinese Medicine
- Naturopathic Medicine
Again, though these options may “help,” they are not necessarily cured.
Now that you’ve got an idea of what endometriosis is on a medical level, let’s take a look at it on a personal level. Here are the accounts of real individuals who have had very real experiences with this disease.
We reached out to a number of individuals and received an overwhelming response from people willing and excited to share their stories. Below are the questions we asked, with real and raw answers.
Do you feel taken seriously in your illness by the public and by the medical community?
The trivialization of pain and suffering is something which many people experience. We can never feel what another individual is feeling, all that we have to operate on is what we are told. Because there is no way to properly quantify a standardized scale of pain, it is up to us to use the innumerably reductive vocabulary we have to communicate such things. As a society, we’ve come to operate on a “prove it” sort of system in which we have to see the physical manifestations of someone’s pain to understand it.
When it comes to pain, it is important to believe until proven false, rather than disregard until proven true.
- I feel the general public takes me more seriously than the medical community. Although, the general population is uncomfortable when I tell them about it. I do find the general public struggles to understand it and grasp it. I was brushed off by doctors for 18 years. Even when it got to the point I could no longer work, they still were telling me it was psychosomatic. People including my boyfriend, medical professional do not understand how crippling the pain can be. People do not understand the pain endo sufferers feel. When you try to explain it, they don’t believe you because….well, it is unbelievable. – Felicity Miller
- The medical community doesn’t adequately understand what endo actually is. – Alexandra C
- I definitely do not feel represented or understood in the medical community. I am tired of going to (male) doctors when I have been bleeding for over two months and having them refuse to check my iron levels because “I look healthy” (Side note, I ended up with anemia that was diagnosed 5 months after the fact). I am tired of being prescribed a medication and not being told that it will likely affect my bone density. I am tired of not knowing the cause and not having a cure. -Kayla Sanford
- I don’t feel adequately represented/understood in the medical community. I have fought hard to have an amazing medical team working with me but there have been some horror stories over the years. There needs to be a re-education of the medical community on a whole on the facts of Endometriosis as incorrect information is rampant starting from medical training. This can lead to mistreatment of Endometriosis patients and inadequate health care. – Laura Diebolt
Tell us a bit about your diagnosis process
As we know from the information above, diagnosing Endometriosis is not easy, pleasant, or timely in any manner. Because it is so difficult to diagnose, we must keep in mind the number of individuals who are still living undiagnosed, without means to orient themselves to their own illnesses.
- I had symptoms at 14 years old, they got worse around 19 years old. Doctors treated symptoms with birth control. I had more symptoms in early 20’s that I ignored. By late 20’s I was going back to the doctors with more symptoms. Sex always hurt. I just thought it was normal. – Felicity Miller
- I found it rather frustrating at the beginning of my search for answers that I so often was made to doubt myself. Doubt my pain, my body, and my inner voice. I felt belittled and treated like I didn’t know my own body like I couldn’t trust what I was feeling. For months I doubted my pain and shrugged it off. – Jess Shearer
- 5-6 years of misdiagnoses and being a test subject for every known drug possible that “could” help – Alexandra C
- Being diagnosed with endometriosis has been a bit of a journey. For me, I didn’t realize that my symptoms were abnormal. I didn’t realize that vomiting on my period and blacking out from pain was abnormal. For me, my biggest barrier to diagnosis was myself just because I didn’t know that my symptoms were symptoms. That, and I wanted to desperately to not be in pain and not be ignored that I ignored symptoms that were blatantly abnormal. – Kayla Sanford
- I had severe pains, cramps, and migraines from the year before I got my period and once I got my period I was told the pain was normal, so I didn’t question it. Two years later my mother took me to the doctor and told him that the cramps were severe and I needed something to it. He prescribed prescription strength Naproxen, which I took 2 every 4 hours. It didn’t help, but I was told by the doctor that was all I could do and that cramps happen to everyone. I suffered from debilitating pain, thinking it was normal and that I was just the weakling that couldn’t deal with it when every other woman in the world could. It wasn’t until I was 25 and I passed out at the store from the pain that I figured it wasn’t normal. – Sunita
How did you feel when you received your diagnosis?
- Relieved, scared and so sad – mostly because it confirmed why I’d had multiple miscarriages and why fertility was an issue for me for so long. Also mad because since I was a teen I’d been in extreme pain and complained of IBS symptoms, which turned out was a result of endo on my bladder. – Melanie
- Thankful that someone was finally listening to what I had been trying to tell them all along. But then knew I was in for a long road ahead” – Alexandra C
- I was very confused and terrified. From the information I was given, it sounded like I would never be able to have children and that I would live in pain for the rest of my life. Only one of those statements turned out to be true. I will live with the symptoms every day for the rest of my life. – Isabelle
- I felt like I wasn’t crazy anymore because I knew I had it so many years ago. But I also felt defeated as my stage is very severe. My chances of having children are less than 1 percent and I always wonder if that would have changed has my doctor listened to me – L. Atkinson
What does having endometriosis mean for you on a day-to-day basis?
- A day in the life of an Endometriosis patient in my case means constant pain increasing through the day, difficulty sleeping including a lack of quality, fatigue, prioritizing tasks in relation to how much energy I have that day, a variety of medication taken at various points during the day, and sometimes forcing myself to eat when the pain is so bad that I don’t even want to move. – Laura Diebolt
- It started out as having pain free days and days that I was doubled over in pain. Those bad days got more frequent. It got to where I never had a pain free day. Then I got to where I was feeling I would pass out, then later I started passing out. – Felicity Miller
- It used to mean painful periods, unexplained ‘stomach issues’ and food allergies. Now it means infertility and fear of sex – because of the pain I experience when having sex. – Melanie
- It means being afraid of what my own body can do. Imagine that. Being scared of your body. At any point, at any time, I could break into debilitating sharp pain, body aches, migraines, nausea, and those are just the physical symptoms. The emotional trauma is much more scarring. The depression from the “medication”, the loneliness is not feeling understood. Feeling weak because you don’t know how to tell your loved ones that they can’t help you. Knowing that they feel helpless. – Isabelle
What are some issues you’ve grappled with as a result of having an invisible illness?
- I feel like since people cannot see my illness, I have to constantly explain in depth what the illness and pain are like in order for them to believe me. This can be extremely uncomfortable at times because I don’t like to discuss my uterus and vagina with my family, friends, strangers, doctors, and co-workers. But I feel like if I don’t, I am not taking seriously. It’s hard to get people to understand that you are in pain, despite the fact that they cannot see it. – Isabelle
- Invisible illness is hard because “you look healthy”. It is hard for people to understand that just because you are acting normally doesn’t mean that you are. I have a hard time telling professors that I have this horrible disease and sometimes it means I can’t be here. I have a hard time relating to others because I experience so much pain (I also have fibromyalgia) that I’ll be trying to do something with them and I can’t be fully there because of pain hits. But I look fine. I’ve also grappled with accepting it myself. Accepting that there is no cure and there isn’t really an effective treatment and that I will have this for the rest of my life. I have mourned the loss of a pain-free future more times than I care to admit. It is incredibly hard to know that your future looks a million times different all because of an illness. – Kayla Sanford
- Having an illness that isn’t apparent from looking at me has led to a few issues over the years. It has led to people not understanding how devastating and invasive Endometriosis can be, it is much different seeing me on a day where my pain was manageable enough for me to leave the house versus the days when the pain isn’t manageable. Endo patients don’t have people offering up their seat on transit and we often get so good at ignoring our pain that medical professionals don’t always take us seriously. This pain is much worse than “just cramps”, it has been compared to what one with acute appendicitis feels or a heart attack and the irritation to what sand in the eyes feels like. – Laura Diebolt
What are some issues you’ve grappled with as a result of having an illness which predominantly affects women?
It is important to understand that in some cases endometriosis also affects men. Additionally, not all individuals who have uteruses identify as women, and this is also important to remember. This said, because of this dismissal of a great deal of women-specific pain (menstruation-related pain, pregnancy-related pain, uterus-related pain, etc), the politics surrounding endometriosis have a great deal to do with the trivialization of women’s pain.
- With very little funding for research, Dr.s are so uneducated when it comes to endo. Most don’t even get 30mins of training and then don’t know what to do when a patient comes in with it or it’s symptoms. They often refer to “50yr old treatments”, as my RE calls it, that is outdated and inaccurate. –Melanie
- That society doesn’t seem to give it any importance. If I heard “it’s just woman issues” one more time I might puke! Woman make up half the dang population and like 15-20% of woman have endometriosis or illnesses that relate to their specific sex organs. How can this not be a bigger issue? Without woman and their organs, the species cannot go on! People think you’re just being overdramatic. I feel like society has the same notion of women. – Sandra
- The biggest issue that I have because of having an illness that mostly affects women (endometriosis has been found in cisgender men) is just not being taken seriously. Bleeding for months on end is not normal, but if you tell it to a male doctor sometimes they don’t even bat an eyelash. Doctors don’t believe you. They don’t believe that it could possibly be that bad. But it is. –Kayla Sanford
- I belong to a couple Endometriosis support groups online & while it can be a joy to have ladies understand you, it’s also heartbreaking to see how many are suffering. There are 176+ million women globally suffering from Endo & not enough is being done to help us. People need to stop being afraid of female reproductive organs & women who have issues with their reproductive organs. Remember when they treated female hysteria with a dildo, I feel like we haven’t progressed much farther than that. – Samantha Pittman
What We’ve Learned
If someone tells you they are in pain, always trust first before questioning them. Coming forth is not easy, many people feel like admitting they’re in pain is admitting they are weak, help them understand that this is not the case and show your support by trusting what they are telling you.
Seek to Know
If someone is experiencing something that you don’t understand, rather than disregarding it, take it as a learning opportunity! Knowledge is never detrimental, and the more you learn the more you can relate to those around you. The world is filled with remarkable individuals with vastly different experiences, the potential for knowledge never ends, so why wouldn’t you commit to being a lifelong learner?
Advocate For Yourself
One of the most beautiful and challenging qualities of life is that only you can know yourself to the fullest extent. Someone else cannot feel what you are feeling, so if something doesn’t feel right, you must never stop advocating for yourself. We know, sometimes it feels like an uphill battle like you can’t win, but if you have the choice between fighting and giving up, we’d like to suggest that you keep fighting. In the end, it might be worth it, and if it isn’t, at least you know that you stood up for you when no one else would, and that is pretty damn special.
When individuals are suffering, you may not know exactly what to say, and that’s fine. You can always (always, always, always) listen. Talk therapy is very real, and the benefit of speaking out loud and hashing out one’s feelings/situation is paramount. If all you can do is be a pair of ears for someone to talk at, then be that!
Allow People to Carve Out Their Own Space
When we are going through a trauma, it is important not to place rigid expectations upon our loved ones. As we know, everyone has their struggles, and some people just aren’t capable of giving you the love, care, and time you may need. Allow people to be there for you in whatever capacity they are able. As long as you are feeling respected by those around you, you are having an open dialogue about your relationships and the roles within them, and you feel generally good about those you are interacting with, you’re good to go! So people listen, some talk, some put a drink in your hand, let people carve out their space of support in the way that they know how. If it doesn’t work for you, that’s fine, too!
Community is Necessary
- I used to feel completely alone. Until I found the facebook support groups. They have helped me understand the illness. It’s nice having a group of people care enough to try and help find a solution for your struggles. – Isabelle
No matter your struggle, you are never alone. Online groups, in-person support groups, books, websites, and other such resources may be just what you need to find a sense of community within your struggle. If you are suffering from Endometriosis, check out the Facebook group entitled EndoMetropolis, you won’t regret it. If all else fails, make your own group! You are also more than welcome, in fact, highly encouraged to reach out to us here at Psych N Sex for advice if you ever need.
A Final Message from the Endometriosis Community
- Never be afraid to ask for help! I was afraid at first then when I started explaining to my spouse what I was feeling/going through I got the help I needed -AB
- No Matter how much it hurts keep fighting because you never know who will need you. -April Friend
- Living through the pain and sadness endometriosis can bring makes you a different person. You embrace the change and use your pain for good or you live a life of depression and defeat. Endometriosis affects so many women yet most, even those recently diagnosed, have never heard the word. Awareness and education are key to the acknowledgment that there’s a problem. When living with an invisible illness you learn a lot about yourself, the people closest to you and world around you. – Kristen Mcrobie