Introduction
Many females are suffering with a life altering condition, but are not informed of it. Instead, they are told to continue on with their lives as if the pain is normal. This is due to not many physicians knowing or being empathetic about the condition. Endometriosis is a debilitating condition that is described as a “painful disorder in which tissue similar to the tissue that normally lines the inside of your uterus — the endometrium — grows outside your uterus. Endometriosis most commonly involves your ovaries, fallopian tubes and the tissue lining your pelvis.” (Mayo 2018). It can be classified into four stages depending on the extent of the spread of the tissue, the involvement of pelvic structures in the disease, the extent of pelvic adhesions, and the blockage of the fallopian tubes. The stages are considered as stage one: minimal, stage two: mild, stage three: moderate, and stage four: severe. However, the stages of endometriosis do not dictate how much pain one is in. For instance, a woman who has been diagnosed with stage four endometriosis may not experience any pain, while a woman who has been diagnosed with stage one may be in excruciating pain. Symptoms of endometriosis can include pelvic pain, pain with intercourse or with urination and bowel movements. As well as fatigue, diarrhea, constipation, bloating or nausea, infertility, and excessive bleeding during menstruation. Many women start experiencing these symptoms at a young age, however, a slim amount are actually informed of the possible condition. Many individuals feel as if this pain is normal, like it can’t really be that bad. All too often a woman is treated as if she is faking the pain.That being said, when women finally decide to seek help, doctors are not always the most compassionate. Not only is it hard enough for women to talk about the situation, but it makes it even more difficult when a doctor appears to not be listening. This is an unfortunate circumstance due to the stigma of “it’s normal”. As well as the lack of knowledge by many physicians about endometriosis and how common it is in women.
How common is endometriosis and why is it normalized? Every woman experiences menstruation, pain, and emotions in different ways, and the best way for me to get an understanding of it was to conduct interviews and hear the personal stories of those who suffer with the condition. I wanted to understand why so many women have such different experiences with the condition, but share such similar experiences with doctors. I wished to understand more about why endometriosis was so unfamiliar even though it is so common, and only continuing to increase. As someone who possibly suffers with the debilitating condition, I knew it was something women are capable of having, however, I did not know exactly how common it was. Moreover, I wished to find out more about how common it is in women and precisely how the experience is for them. This is important because many people are unfamiliar with the condition and some women spend years before finally finding the help they need. More importantly, when they do finally seek help, issues have come about that could have been resolved if it had been caught earlier. Doctor’s make women feel as if they are crazy, but endometriosis is a severe condition and it is by no means, normal.
Methods
In order to get an understanding of how many people actually know about endometriosis, I conducted interviews around my work. I felt my work was the best place to conduct my research because menstruation is a very uncomfortable topic to talk about in this culture. Since I have been working at my job for over two years now and have a close bond with a lot of my coworkers, I felt this was the most comfortable set of people I could ask to participate in my research. I planned to interview about five different people on each of my four working days, totaling 20 participants. However, out of the 20 people I had asked, six of them were not comfortable sharing their experience with me. So I had simply asked them if they could answer one question, if they knew what endometriosis is. Four of the six females had never heard of it, while two of them had heard of it but couldn’t exactly tell me what it was. Meanwhile, I had 12 other participants I could use for my research. Three out of the 12 participants in my survey had heard of endometriosis, however only two could actually tell me what it was. One of them said it was because they learned about it while going to nursing school, and the other had known about it because her sister thinks she may have it. Furthermore, eight out of 12 participants had expressed that they experience painful menstruation symptoms, sometimes hindering them from performing their daily duties. Most of the women had not seen doctors regarding the pain they feel because they always thought the pain was normal. Two participants that had gone to the doctors and claimed that the physician had said the very same thing, that the pain was “normal.” The main focus of this part of my research was to simply get a baseline understanding of how many women were familiar with endometriosis. However, I knew in order to obtain my main objective, I needed to talk to women that were actually diagnosed with the condition and would be willing to share their personal experience with me.
In order to get the most detailed and accurate information, I joined an online emotional support group via Facebook for women who suffer with endometriosis. I knew this was a topic I was passionate about researching and writing about. However, I did not understand how important it was until I actually began conducting my interviews. To begin, I posted a public post to the group asking if anyone would like to participate in my research about endometriosis. I informed them that everything they share with me regarding their personal experience is strictly confidential and their name nor anything that can link back to them will be provided in my research paper. I was not expecting to get as many people willing to participate, but I had 76 comments within a week! At first I was a little nervous and overwhelmed with how many women I had to interview. However, this is really where the research began to get exciting for me. I was eager to learn about these women’s stories and gain a better understanding of how this condition has affected their lives. I originally had sent 45 women messages thanking them for their participation and again, reminding them of their confidentiality. I informed them that providing as much details and information as possible when answering a question will help me gather the best understanding of their experience with the condition, however, to also only answer as much as they are comfortable answering. I had only 16 women message me back, however the answers they provided were exactly what I needed to gain insight on the life of one with endometriosis.
I also included a close friend of mine that has been diagnosed with endometriosis. We often talk about her experience, but I knew this was the perfect person to spill her whole heart to me regarding the condition. With 12 people from work, 16 people from the support group and 1 personal friend, I had a total of 29 participants for my research. This was an ideal amount of people for my research because I was not extremely overwhelmed with the amount of data that needed to be sorted and gone through. Along with the large amount of articles I read, the women I interviewed gave me detailed answers and provided me with an adequate amount of insight on the condition. One of the main aspects I was able to gather was the dissatisfaction with the doctors and the care they were given. Ironically, I had read on the Mayo website, “See your doctor if you have signs and symptoms that may indicate endometriosis.” Which I thought was amusing considering many women go to the doctor to gather information about what is possibly going on with them, but so few actually leave the doctor’s office with the proper information to further help their condition.
Doctor Patient Interactions
Over the years, more women have been diagnosed with endometriosis. This could be for a variety of reasons. A main reason is there is now equipment available for laparoscopy procedures that are needed in order to find endometriosis. Another reason is there is more knowledge regarding the condition. As well as there is more knowledge regarding performing a procedure to diagnose the condition and then soon hopefully another procedure to relieve some pain. Having knowledge about endometriosis is key because it can be a hard condition to diagnose, however, diagnosing it early can save women so much trouble. During surgery, endometriosis can be hard to locate and even more difficult to remove so it is vital to have knowledge about the condition in order to relieve as much pain as possible the first time and prevent as many future surgeries as possible. Removing all the tissue the first time offers the greatest chance of the tissue not growing back. However, sometimes it is not possible to remove all the tissue due to the location. I had one woman during my interviews express that she is 22 years old and she has already had six laproscopies since she was 16 years old, and had already lost one of her ovaries at the young age of 18. Meanwhile, the increase of endometriosis could also be due to the fact that there is a lower birth rate now than in previous years, meaning there is less amount of time being pregnant in one’s lifetime. When a woman is pregnant, they do not menstruate, and therefore do not experience the debilitating symptoms accompanied by endometriosis.
Women who suffer with endometriosis do not only suffer from the condition, but the stigma behind it as well. Many young women hitting puberty assume that the pain interferes with performing their every day duties is just normal. I had many women share similar stories about their interactions with their doctors, mainly focusing on how their symptoms were minimalized and normalized. Many of these women, and many others, had to do their own research and be their own advocates when it came to diagnosing their condition. One lady had told me during my research that the only reason she feels she was diagnosed was because she was in health care and was able to advocate for herself in some ways that other people may not be able to.
During my research I have found that many women have different experiences with the condition, but most of them are very similar. In many cases, women are not informed about endometriosis until many years after they hit puberty. Many of the women that I had interviewed started menstruating at age 9. While some others did not start until 11 or 12 years old. With that being said, I did not seem to find any similarities regarding their age and what they experienced with their condition. I found a very slim amount of women that actually got diagnosed the first or second time of seeing a doctor. Unfortunately, that was not the case with most of the women.
Many of the women in my research that were diagnosed with endometriosis had seen an average of four or five doctors until one had finally suggested that they may have endometriosis. A woman had expressed that it took her about eight years to be diagnosed, at first she was misdiagnosed with Polycystic Ovary Syndrome (PCOS), which is “a hormonal disorder common among women of reproductive age. Women with PCOS may have infrequent or prolonged menstrual periods or excess male hormone (androgen) levels. The ovaries may develop numerous small collections of fluid (follicles) and fail to regularly release eggs.” (Mayo 2020). Her doctor refused to give her a laparoscopy because “every woman goes through it.” Many women that are adamant about having endometriosis usually have to persuade several doctors to consider that they may possibly have it. Since I personally know about the difficulty behind being diagnosed with endometriosis, I cannot imagine the struggle behind getting the proper treatment for it.
Some women, such as myself, were taken to the doctors at a young age to somewhat get an understanding of what may be going on with our bodies during this time of the month. The unfortunate part is that many women are blown off as if it is just a “hard” period. Doctor’s felt as if the pain felt during menstruation is normal and just part of the way things are. Doctor’s fail to take into consideration the amount of pain one person may be able to handle and how debilitating the pain can become. For instance, when conducting my research, I included several painful things such as a papercut, a bee sting, a migraine and childbirth for my participants to rate on a scale of 1-10. I also asked them to rate the pain of their menstruation symptoms. For some women, their menstruation was only comparable to a bee sting. For others, it was comparable or worse than a migraine. And for one, it was even comparable to giving birth. With that being said, there were also other participants that rated their menstruation to be only as what would be equivalent to a bee sting for another. Everyone experiences pain differently and has a different pain tolerance, which doctor’s do not often consider when diagnosing a patient.
Endometriosis is a very difficult condition to diagnose because it requires a surgery in order to officially be diagnosed with the condition. A laparoscopy is “a type of surgery that checks for problems in the abdomen or a woman’s reproductive system. Laparoscopic surgery uses a thin tube called a laparoscope. It is inserted into the abdomen through a small incision. An incision is a small cut made through the skin during surgery. The tube has a camera attached to it. The camera sends images to a video monitor. This allows a surgeon to view the inside of the body without major trauma to the patient.” (Medline 2021) However, although serious problems are uncommon, it can still, like any surgery, lead to high risks such as infections or bleeding at the incision site. Not to mention, it is not even a guarantee that you have the condition. This type of surgery is to only see if the person has it. In some cases, some doctors are not experienced enough to know what they are looking for. Additionally, it is possible to have endometriosis on a microscopic level, making it almost impossible to find. Furthermore, endometriosis can be found during a pelvic exam or an ultrasound, but only if endometriosis is causing cysts that form on the ovaries. However, the only way to get a true diagnosis is through a laparoscopy procedure.
When diagnosing a patient, doctors rely on technology to give them a “physical” reason on what is wrong. Such as low white blood count that can be found with a blood test or a broken bone that can be found with an X-ray machine. If a physical cause cannot be found, many physicians chalk it up to a physiological reasoning. So in other words, “it’s all in your head.” Unfortunately, this is the case for many women with this condition. One of the women I interviewed revealed to me that she had to keep changing doctors because all they would say is she had a low pain tolerance and the pain was all just in her head. They put her on five different types of birth control since she was 15 years old, none of which helped. She has had about seven internal ultrasounds and two external. She has had her blood drawn numerous times and has had several trips to the emergency room. However, since they couldn’t see anything wrong with the test, they would give up on her.
Another reason endometriosis is hard to diagnose is because it is not a life threatening condition so many doctors do not take it as seriously as things such as tuberculosis or cancer. Additionally, many physicians are males and do not understand the process of what women go through on a daily basis. When conducting my interviews, there was one question that only two people had answered. I had asked “why do you think many women have never heard of endometriosis before considering the condition is quite common?” A common response was, “because medicine was written by men. Everything was founded on the idea women come from men (Bible) so specific study of women anatomy and conditions are way behind. Plus women are told to deal with pain. In society it is expected for us to suffer in silence. I was brought up to push through the pain.” The other lady I interviewed had responded with “Many physicians IGNORE pain and say it’s normal or all in your head. At college I was checked for drugs since I passed out due to pain and they assumed I used drugs.” Since male physicians do not go through menstruation, it’s difficult for them to relate with a lot of the difficulties us women experience during this time of the month, regardless if you have endometriosis or not.
Treatment
When a patient is finally diagnosed with endometriosis, there are only minor solutions to help temporarily limit the symptoms of endometriosis. A common form of treatment is hormonal regulation, such as birth controls. Doctor’s have placed many women on birth control in order to help manage period cramps and keep hormones under control. In fact, during my research, I found that this seems to be the very first recommendation when a woman comes into a clinic complaining of such symptoms. Some women on birth control do not experience menstruation for months, while others experience prolonged menstruation. In many cases, birth control has led to more serious medical problems for females in the future. For instance, there is a birth control, Nexplanon, that is implanted in women’s arms and there were hundreds of different incidents of the implant getting lost in the woman’s arm. As well as the birth control by the name of Depo-Provera had caused many women to gain weight. In the same sense, there were several women in my research that felt as if their symptoms were worse after they had taken birth control.
During my research, I asked the question, “What do you wish was done differently?” A common response was many had wished the doctor never put them on birth control. Very few women in my research actually enjoyed taking the pill and thought it helped their symptoms with endometriosis. One of my participants informed me that she had stopped taking the pill so she could get pregnant, and one thing she thought that could better her experience was to continue to take the pill. So in other words, she was left with a choice of not having children and continuing to be on the pill, or continuing to deal with this debilitating pain in hopes that she may become pregnant.
Woefully, there is no cure for endometriosis, but women can undergo a laparoscopy procedure to remove the endometriosis tissue. However, it is still not a guarantee, as the tissue can always grow back. Sometimes the scar tissue caused from the surgery can cause more pain than the endometriosis itself. Laparoscopies are common with women diagnosed with endometriosis because it not only can reduce pain, but it can also increase the chances of fertility. Many women that suffer with endometriosis suffer with the inability to have children. Some women have a difficult time conceiving a child, while others cannot conceive any at all. As time passes, endometriosis can continue to decrease one’s chances of having children. In some cases, women are able to figure out this information before it is fatal and can attempt to conceive children before endometriosis completely deprives them of the opportunity. However, some women have their life semi planned out and do not want kids until their 30’s and some women are forced to weigh the options of having kids now or possibly never. I have a close friend that is currently suffering with this exact problem and I asked if she wanted to be included in my research. Like many of the women, she was more than happy to share her story if it meant a slight chance of making a difference on the taboo experience of endometriosis. In her story, she expressed how she finally was ready to settle down and have children with the man she loves, however, they haven’t successfully succeeded in becoming pregnant. She has spent several months crying over false pregnancy tests, and going to several doctors to discuss further options for her. The next option that was presented to her was perhaps having another laparoscopy to increase her chances of becoming pregnant. In the same manner, some doctors even recommend having children as a form of treatment towards endometriosis.
Additionally, another form of recommended treatment is a hysterectomy, which is normally a surgery that removes the uterus. Many women undergo a hysterectomy to reduce pain caused from endometriosis. Considering endometriosis grows on the uterus, oftentimes removing it can relieve the problem. However, not all women had the luxury of losing the pain along with losing their uterus. One woman that I had talked to had informed me that she cannot actually answer my questions due to being diagnosed post hysterectomy. She had expressed to me that she had been diagnosed with what is called abdominal wall endometriosis and has what is called an abdominal endometrioma. I had personally never heard about this condition and I was extremely excited to hear more about her story and learn more about her condition.
Abdominal wall endometriosis is defined as “implantation of endometrial tissue outside the peritoneum, including lesions secondary to a surgical incision and those that arise spontaneously.” (Marras, et al. 2019) Which means oftentimes abdominal wall endometriosis appears after a surgery such as a hysterectomy or cseartions. This I found concerning because the amount of cseartions and hysterectomies are increasing, meaning there is more of a chance that women will end up with this debilitating condition. But even worse, they do not even know that it is possible. Most importantly, it makes me wonder even more about how many people are going through a similar experience. This certain individual expressed that it took her 6 years to finally be diagnosed because with having an emergency hysterectomy at 25, her doctors said it was impossible to have endometriosis. She begged and pleaded for someone to listen to her, but she stated they all made her feel as if she was crazy. In time, she finally was able to get an MRI done by the doctor she currently has, the MRI was able to confirm that she has a tumor on her abdominal wall, classified as an abdominal wall endometrioma. Sadly, her doctor had mentioned that if someone had run the tests sooner, it could have been found and treated before it got as bad as it did.
The Impact
Completing the circle of life, producing offspring and becoming a mother is what is expected from most women. Many women can often feel discouraged or incapable after being told they have a slim chance of having babies, or no chance at all. When conducting my interviews, very few women had given birth. This could have been because endometriosis has made them infertile or because the first thing a doctor does to a female experiencing endometriosis symptoms is recommend birth control. Which of course, will prevent many women from having children. Especially if birth control is actually helping the pain, one would be hesitant to stop taking it to start a family.
Alternate methods should be looked into before doctors just jump straight to “birth control will solve the issue.” Because in so many cases, birth control has not solved the issue, and it has actually done more harm than good. When conducting my research, I asked the question, “What are some things that you think could have or could be done in order to help with your endometriosis?” And one of my favorite answers was, “Not treating us (people who suffer with endo[metriosis]) like guinea pigs and giving us medications that poison us or cause us to lose bone density (depo, orlissa, lupron, ect.) Stop treating every case the same! My endo[metriosis] is not the same as the last person, and theirs isn’t the same as the person before and so on and so forth. Take the pain seriously, stop dismissing me. Don’t treat me like an inconvenience to you (the doctor) don’t give me [crap] information, if you (the doctors) don’t know, say so! Chances are I already know more about this disease than a doctor who doesn’t specialize in endo because it’s my life!”
Another disadvantage of endometriosis is the unbearable pain that accompanies it. This pain can lead women to cancel on family or friend occasions, call into work, and fall behind on daily duties. This can in return cause a woman to feel depressed and feel like a failure. I asked the group of women I interviewed how endometriosis affected their everyday life, and many said that they lose a massive amount of sleep, have a neglected sex life, and deal with constant trips to the restroom due to heavy bleeding. They disclosed that they cannot work out without the pain becoming unbearable and they have a decreased amount of energy. One woman had said something that I absolutely loved, “some days I feel like I am endometriosis instead of being just me.” Similarly to many women, she has also had to majorly alter her eating habits. She does not eat dairy, gluten, soy, or corn. Furthermore, many women also suffer from lack of a social life and they miss out on family outings. Many also have to take unpaid days off from work. Thankfully some have really good bosses, because there are others that have even lost their jobs due to it. Meanwhile, there are other females that cannot afford to miss work or take the risk of losing their jobs, so they have to push through the pain.
Some women expressed a similar feeling like this when their endometriosis flares up, leaving them bedbound and unable to complete a single item on the to-do list. Rendering them feeling helpless, hopeless, and like nobody really understands. Many females I had interviewed had very few, or absolutely no family members that experienced the same condition and could relate with what they were going through. During my interviews, I asked women if they felt comfortable talking to family members, friends, and even strangers about their experience. This question had a wide variety of answers. Most of them said they were hesitant at first but they became more comfortable once they were finally diagnosed and their pain and feelings were then validated. One lady had mentioned she doesn’t feel comfortable talking to strangers about her condition because, “it’s not appropriate to share my health issues.” Most of them, however, didn’t care so much because they simply wanted to spread awareness about endometriosis and make it less of a taboo topic.
Some people were uncomfortable talking about their condition with their family and friends because they do not suffer from it, so they do not understand what it was like for them. Some family members even treated them like the doctors did, like it is just some bad cramps and it’s just a normal thing that every woman goes through during her time of the month. On the other hand, one lady I had interviewed expressed to me how her friends and family knew about her laparoscopy surgery and that they had bought her an abundance of stuffed uterus. She later went out to the mall and got a Christmas card made of her, Santa, and her stuffed uterus! And I was lucky enough to receive one!
Women complain about more than just the pain during their time of the month. Many women feel a massive change in their emotions, but not just when they’re on their period, but often the week prior or the week of ovulation as well. Many women complain of feeling more emotional, cranky, and overdramatic during these times. So it’s realistic to believe that women spend two-three weeks not feeling like themselves. That’s half of the month, if not more, that a woman doesn’t feel like herself. Now to look at the bigger picture, when a woman spends a year going through this process, she’s really only feeling like herself for less than half of the year. To look at things a little farther, many women easily spend 10 years going through this experience. So that’s really only five out of the ten years that this woman was happy and actually felt like herself. After speaking with a resident who was interested in my research, she brought up a very interesting topic. We spoke about how many women themselves, tend to find this pain and this type of behavior “normal.” When women tend to get cranky and over emotional, the first thing many people chalk it up to is, “oh, it must be her time of the month.”
Another common side effect of endometriosis is anxiety and depression. If you’re someone like me and already suffer from anxiety and depression on a daily basis, your time of the month can be extra hard to fight through the anxiety attacks and depressive episodes. Many studies have been done regarding the relationship between endometriosis and depression. A group of reporters had wrote, “It has been demonstrated that pelvic pain has significant negative effects on women’s mental health and quality of life; in particular, women who suffer from pelvic pain report high levels of anxiety and depression, loss of working ability, limitations in social activities and a poor quality of life.” (Lagana et al. 2017) The study found that depression was linked more so to the pelvic pain itself rather than endometriosis.
How we can make an impact
There is still a lot that is unknown about endometriosis. It is not known what causes it and what can cure it. Also, doctors are unaware of how common it can be in females, and many females are unaware that they even suffer with this condition. There were a few people I interviewed at my work that had no idea what endometriosis was. Luckily, many of them indicated that they do not suffer from debilitating menstruation symptoms, hindering them from their daily duties. However, there were a few that mentioned they do call into work sometimes due to serious period cramps, and they indicated that this may be something that they suffer with. Many of the women that I spoke to that had been diagnosed with endometriosis had shared that one thing that could have helped them with their condition was being taken seriously so that they could have been diagnosed sooner. Early awareness and education about the condition could benefit women a lot in the future. One woman I spoke with had even mentioned that she realizes that endometriosis and the pain that accompanies it can take a toll on her mental health and she realized the best thing to do for her is to talk about it.
All things considered, since there is no cure for this condition, the best way for women to coexist with this disease is to have the proper support needed in order to manage the condition. Endometriosis can be extremely draining and it can be even more stressful to manage when you are surrounded by people who do not understand or who are simply not even trying to understand. Meanwhile, having someone brush off your feelings and pain can be even more difficult to manage mentally. Having someone tell you for years that it is all in your head can be maddening, especially when you personally know when something is wrong with your body.
A wide abundance of people having the knowledge about endometriosis could be beneficial to women in many ways. Many of the women that I interviewed that were unaware of endometriosis, seemed quite interested in learning about it. With that being said, word of mouth is a very powerful thing and who knows how many people they will inform about endometriosis. Giving women an early warning about the possibilities of having this condition can benefit women in the future due to having more time to look into the condition. They would also have more time to get diagnosed and figure out the best treatment options for them. Many women do not go to the doctors until their symptoms begin to get extremely bad and by then, serious issues have occurred that could have been resolved with an earlier diagnosis. Most importantly, women could join support groups regarding their condition so that they do not feel so alone. Many women would benefit from having a strong support group early on instead of spending several years managing the stress behind the condition alone, as well as the added stress from the doctors.
Doctor’s are important when it comes to knowing about this condition as well. They do not need to know every detail about the condition. However, all they really need to know is that it is extremely common in women and it should be looked more into. They can give information about the condition and then the women can look more into it and go to an expert that can properly diagnose them. But minimizing and normalizing the condition is definitely not the solution.
Overview
Sharing the same story with many of these women, I could deeply feel the pain they were going through. The struggle with doctors that many of us women go through regarding this condition is almost as unbearable as the pain it brings along itself. I wholeheartedly put my effort into this research and as time passed, I just kept wishing I had more of it. Like many of these women, I wished to bring more light upon endometriosis and make it less of a taboo topic. Many of the women I interviewed had expressed to me that they were so happy that I was doing this, and I could personally feel why.
Since endometriosis is not a life threatening disease, many doctors do not take it seriously when a woman is complaining of period pain. Many times women’s feelings are dismissed and minimized and are treated like everything is normal. Due to no “physical” to find, the pain is tossed up to psychological, leaving many women feeling as if they are crazy. Physicians don’t take the time to listen to what the woman is going through and are quick to prescribe birth control as a quick solution. However, women do not want a temporary solution, they want answers! Birth control has such negative side effects and can do a lot to a woman’s body. Almost every single person who had been diagnosed with endometriosis that I interviewed had a similar experience to this. Many of these women had been dealing with this excruciating pain for several years before considering it could be a problem. And once they searched for help regarding this problem, they had feelings dismissed as if it was preposterous for them to assume that it wasn’t normal for their periods to keep them in bed for days on end. Not to mention, many females did not seek help until serious problems began to occur. By that point, many women are stuck suffering with even worse symptoms that could have been prevented with an early diagnosis. “I felt validated, like I wasn’t crazy and the pain wasn’t all in my head when I was finally diagnosed with endometriosis” were similar words from a majority of the females I had interviewed.
During my research, I noticed that the average number of doctors a woman had to see to become properly diagnosed was five. And unfortunately, it took an average of seven years of looking into the condition and begging to finally be diagnosed. Women deal with unbearable pain, leaving them bed bound and feeling like a failure since they cannot be productive. During that time of the month, oftentimes women call into work, neglect every day duties, and cancel family and friend outings. The pain associated with endometriosis can lead women to be physically drained. All of these on top of the stress behind doctor interactions can be mentally draining as well. During my research, I learned that many women deal with such a strenuous interaction with doctors due to the stigma behind menstruation and how women are supposed to handle it. My goal in this research was to figure out why endometriosis is normalized. But first, I needed to gain a better understanding behind the experience of menstruation and what would be considered a “normal” period. I came to the conclusion that there really is no such thing as a “normal” period, because literally every woman experiences different menstruation symptoms. Two women may experience the same symptoms, but each woman has a different pain tolerance than others, so generally the pain associated with endometriosis is going to affect everyone in very different ways.
After interviewing the women from the support group, I realized that I wanted to focus more on the experience of what women with endometriosis go through. I wanted to voice our opinion, share their stories, and attempt to shine more light on the condition. When women know about endometriosis, it can lead to a strong support group for those who have it or are struggling to be diagnosed with it. Since there is no specific cure for endometriosis, support groups could benefit women with managing the condition. Additionally, when others have knowledge about the condition and what women go through, they may be more compassionate about the situation. Family and friends wouldn’t get as mad for canceling on certain occasions, and managers at work may be more understanding on why a female is calling in for “silly period cramps,” and may find it more of a logical reasoning.
Having the knowledge that this is a debilitating condition and that is not normal is an extremely important subject that I deeply hope is more known about within time. The word about diabetes wasn’t spread overnight, and neither will the word about endometriosis. But I’m satisfied to be a part of the group that attempted to make a difference and shine light and knowledge onto the unfamiliar topic. Although many women had very different stories, they were all correlated in some way, and I was more than happy to hear them, and most importantly, speak upon them. As a healthcare worker, I strongly feel like we can do better for our patients, residents, and the community in general. With that being said, I was more than excited to be a voice for those who felt they did not have one for so many years. Endometriosis does not make women feel crazy, however, the doctor’s do.
References
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Back, Anne, Mette Risoer, Axel Forman, and Lene Seibaek. 2016. “Practices And Attitudes Concerning Endometriosis Among Nurses Specializing In Gynecology.” Sage Journals. Accessed February 14, 2022. https://journals.sagepub.com/doi/full/10.1177/2333393616651351
Day, Amanda. 2012. “Yeah, But Can It Kill You? Understanding Endometriosis in the Atlanta Area.” George State University. Accessed January 29, 2022.
https://scholarworks.gsu.edu/cgi/viewcontent.cgi?article=1069&context=anthro_theses
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