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After recently listening to Dr. Drew’s ill-informed comments on endometriosis, I find it extremely important to set the record straight. I suffered from adenomyosis, a condition somewhat similar to endometroisis, for 17 years before obtaining a correct diagnosis. I find Dr. Drew’s comments damaging to the cause of bringing more awareness and education to endometriosis and adenomyosis. It is vitally important for people to know the truth about these disorders.
So let me begin by giving you some background information for those of you who haven’t heard the actual call and remarks. A young man called in to Dr. Drew on his radio show, Loveline. His girlfriend had been diagnosed with several seemingly unrelated medical conditions, one of which was endometriosis. After listening to this guy talk about his girlfriend’s diagnoses that took him probably less than one minute to describe, Dr. Drew made the statement that she had a somatoform disorder and needed a trauma specialist. He called these pelvic pain disorders “garbage bag diagnoses” and said that they could not be pathologically proven. In addition, he made the comment that endometriosis is linked to sexual trauma.
Needless to say, many women were outraged by these comments. But even better, some nurses and doctors got in on the action. Dr. Drew really ended up taking a beating over these remarks. Most significantly, Dr. Tamer Seckin, co-founder of the Endometriosis Foundation of America called in to Dr. Drew’s show, and the two of them had about a 30 minute conversation about this topic. Dr Seckin did a beautiful job on setting the record straight, giving accurate facts about endometriosis in a very professional manner to Dr. Drew.
I have listened to both the initial call/remarks and the conversation with Dr. Seckin in full. Although Dr. Drew did apologize at the beginning of the call with Dr. Seckin, he still made some remarks that I find disturbing and inaccurate, so I would like to address these comments here.
Dr. Drew made the following comments:
“Everything you mentioned, EVERYTHING you mentioned are things that actually aren’t discernably pathological.” (This comment came after the caller told Dr. Drew that his girlfriend had been diagnosed with endometriosis, interstitial cystitis, lactose intolerance, and no stomach lining)
This is false. Endometriosis is very much a discernably pathological condition. Even more interesting, IC is commonly seen in women suffering from endometriosis.
“When people have unexplained pelvic pain, it’s called somatoform dissociation.”
Not necessarily. These two remarks are the ones I want to discuss further.
First of all, what he fails to understand here is that many women have had multiple diagnoses and are later proven to have endometriosis or adenomyosis. Many of these women have diagnoses that appear to be unrelated, as was my case. Any doctor can easily say that “endometriosis sucks”, as Dr. Drew so eloquently put it, if they have multiple visits to a doctor confirming pathologically that the woman is suffering from endometriosis. However, it takes a TOP doctor, and expert in his field, to be able to determine that a woman is actually suffering from this disorder after receiving multiple diagnoses that are seemingly unrelated. I would love to know if he has seen the Discovery Fit and Health program, “Mystery Diagnosis.”. The problem of receiving multiple diagnoses that are seemingly unrelated are evident in many different diseases, not just endometriosis!
Secondly, in my opinion, any doctor who thinks he can accurately diagnose a patient without ever talking to her or physically examining her is not one worth pursuing. No one, and I mean NO ONE, can accurately diagnose someone without doing a thorough exam on the patient. I have run into this problem during my struggle with adenomyosis, and the doctors that felt they were able to diagnose my condition without a thorough exam were unanimously wrong in their assessment of my condition. I realize that this is just a radio show, and there is limited time to respond to caller’s questions. However, in my opinion, and more responsible answer to this young man’s question would have been something to the effect of, “Well, it’s hard for me to say for sure, but there are several things that could be going on here. She COULD certainly have a somatoform disorder. However, some conditions do have seemingly unrelated diagnoses as the doctors are trying to determine the cause of the pain. My advice would be to pursue a top of the line gastroenterologist/gynecologist and see if they can narrow down a diagnosis. If they are still unable to find a discernably pathological condition, you may want to consider discussing the possibility of a somatoform disorder.”
Having been through the agony of adenomyosis, I know what these women are going through. You have no idea the number of these women who have not been able to get effective treatment for these disorders because of the lack of the medical profession to accurately diagnose these conditions. While going repeatedly to physicians over many years, a lot of these women, including me, have been told by doctors that it is “all in our head” when it, in fact, is not. This is a major reason why there was such an uproar over Dr. Drew’s comments. This is also one of the main reasons I started http://www.adenomyosisinformationnetwork.com as I want the general public to be educated about misconceptions about this disorder. Just because the doctors are unable to diagnose the cause of a woman’s pelvic pain DOES NOT necessarily mean it is a somatoform disorder. Could it be? Sure. Does it have to be? No!
In my case, I suffered from chronic severe pelvic pain for 17 years, and no, I have no history of sexual trauma. Over that time, I was put on antidepressants because I was so depressed about not getting a diagnosis and having to deal with chronic pain. I was treated many times as if the condition was in my head. But lo and behold, when my hysterectomy was finally done in 2007, I had a discernably pathological condition called adenomyosis. Once the uterus was taken, all of my pelvic pain stopped. During the years that I suffered from this condition, I had a slew of unrelated diagnoses, including peptic ulcer, irritable bowel syndrome, celiac disease, endometriosis, uterine polyp, and possible complication from a ruptured appendix. All seemingly unrelated – but I never even heard the word adenomyosis until after it was found during the pathological examination of my uterus.
Am I convinced that this girl has a somatoform disorder? Based on the call I heard, absolutely not. Again, I can’t say for sure what the problem is, but I am not convinced that Dr. Drew has the correct diagnosis because I’ve been down that road. Could she be suffering from endometriosis, a pathologically discernable condition? Absolutely.
I wanted to die last night. There, I said it. Ugly thing to say, right? Might even make you want to inch just slightly away from me. Feel free to. Sometimes I want to inch away from myself as well. But before you judge, try to listen to what I have to say. Assess my words with an open, empathetic heart, and think about the way you would feel if you were in my shoes. It may sound as though I am trying to pull at your heartstrings, to make you feel depressed for me and my life, but I am not. I just want you to understand what it’s like to be a woman who suffers from endometriosis. I just want you to understand. These are the realities of living with endometriosis.
Dealing With the Physical Reality of Endometriosis
Pain. Imagine your abdomen and pelvis are encased in barbed wire so that the spikes of the wire are actually piercing them, stabbing them sharply every time you move. Now imagine that the barbed wire is actually attached to some sort of electrical current that shoots electricity through the spikes, increasing the intensity of each penetration. Next, add a machine that alternates shooting the electrical spikes into the body and pulling them out again in random intervals, thus adding a surprise and shock factor to the pain. Lastly, in addition to the shocking electrical stabbing pain, there are deep, underlying waves of pain that crush and release the muscles, causing a cramp so excruciating it takes your breath away. Imagine living with that agony on an everyday basis.
I live with a veil of pain draped over my body. Not stubbed toe pain, sprained ankle pain, or even broken heart pain. The pain that I feel every day is an all-encompassing event, specially formulated to break both my body and my spirit. It is a visceral and animalistic torture that brings me to my knees in surrender. That is the reality of living with endometriosis.
Fatigue. I want you to try to recall a night during which you slept very little. Maybe you had a party the night before, or perhaps you were up doing work. Now think about the way both your body and mind felt the following day. Did you function as well as usual? Were your movements as fluid, your mind as sharp? Or did it feel as though you were moving through quicksand, your brain wrapped in cellophane? How would you deal if you felt like that every day?
I live with a crushing form of fatigue that makes my every move devastatingly cumbersome. I often feel as though I am nine months pregnant with quadruplets, constantly carrying around an enormous weight that is attached to my body, sucking whatever strength I have left. My limbs feel like they are wrapped in lead, and my eyelids covered in cement. All my body wants to do is sleep, every minute of every day, but it can’t. My life doesn’t take a nap when I do.
The Emotional Reality of Endometriosis: Depression
I wish I could say the physical aspects of endometriosis are all that plague me. Unfortunately, this is not the case. You see, for every physical malady that plagues women with endometriosis, there is an emotional component that is equally, if not more, devastating.
Guilt. Guilt is like an itchy woolen sweater that is two sizes too small: suffocating, uncomfortable, and in desperate need of being shed. It permeates the many aspects of my life and makes me miserable. I feel guilty for having endometriosis to begin with, as I sometimes wonder what I did wrong to deserve it. I also feel guilty that I cannot give my husband the emotional or physical attention he needs. I feel guilty that my close friends and family have to spend their days taking care of me when I am incapacitated and that I spend my days idling around the house while they work hard. I feel guilty for canceling plans that I made weeks ago and the lack of ability to make plans to begin with. Guilty that I cannot be a good friend to others. And guilty when I think of my children who I cannot take care of the way they deserve to be taken care of. Finally, I feel guilty that I cannot give my husband any more precious children due to the hysterectomy I had that was not even successful.
Inadequacy. Due to the symptoms of endometriosis, I often feel inadequate and obsolete. I feel like I lack the ability to do anything important, like my job, or household work. Relationships with my spouse, kids, parents, siblings and even my friends are often placed on the back burner as I struggle daily to merely exist. This inability to maintain relationships, keep my job, take care of myself or family members or even be intimate with my spouse overwhelms me with the feeling that I am incompetent, useless, and valueless. Sometimes I even feel as though my existence on this earth is pointless if I can’t be a functioning member of society. These feelings of incompetence sometimes also lead to depression, embarrassment, guilt, and rage.
Anger. Imagine being told that the agonizing pain you feel every second of every day is not real, that you are making a big deal out of nothing. How would you feel? Anger? Rage? Imagine being told that you are a “druggie” when you ask your doctor for pain medication to ease the misery you are dealing with. Anger again? Or how would you feel towards “God” or “The Universe” if you let your mind wander to the opportunities you would have if you didn’t have endometriosis? It’s hard not to be furious when you think of everything you are missing or losing due to this disease. What if you’ve tried for years to get pregnant with no success or just miscarried the child you’ve wanted all of your life. And imagine being so debilitated by your symptoms that you are unable to perform your everyday activities. How would you feel? Frustrated? Angry? That’s exactly the way I feel.
Jealousy. For me, jealousy rears its ugly head when I see other people performing activities that I am too sick or fatigued to perform. It is hard not to be jealous of a healthy person when I am stuck in bed, too exhausted to move, or lying on the couch, writhing in pain. Just seeing someone go food shopping without discomfort causes jealousy within me, as I would do anything to be able to perform everyday activities without pain. Jealousy is also inevitable when we I see other women, basking in their pregnant glow, and I know that I will never again carry a living being inside of me.
Loneliness. Yes, I am extraordinarily lucky to have a wonderful support system in my life, and I am enormously thankful for that support, but there is a profound, hollow loneliness that sometimes overwhelms me when it occurs to me that despite their best efforts, my loved ones cannot fully understand what I am going through. Even my sisters with endometriosis cannot completely comprehend my individual suffering, as every person suffers uniquely. Therefore, I am sometimes led to feel as though no one understands me, and there is no thought lonelier than that.
Loss. Endometriosis is a disease that is full of loss and mourning. On a basic level, I mourn the loss of a “normal”, illness-free life. A life that is chock-full of boring, everyday activities and errands. I am no stranger to mourning or to loss. Having a miscarriage created a deep, inconsolable hole within me that will remain with me forever. But most of all, having a hysterectomy has caused a ubiquitous feeling of loss within me as I mourn, not only the loss of potential children, but the loss of a part of my womanhood.
Depression. Oh, depression. That dark, suffocating feeling when the world looks like it has no color in it and our futures seem murky and unclear. For me, depression is caused by many different things. Being alone all the time, not being able to spend time with family and friends due to pain, fatigue or other symptoms is depressing. Excruciating pain is depressing. Feeling like my illness is misunderstood is depressing. Feeling like I need to be embarrassed of my illness is depressing. And lastly, the thought that there might not be any hope for my recovery because there is no tangible hope for a cure, that I might have to deal with the incapacitating symptoms of endometriosis for the rest of my life, is the most depressing thought of all. That is why I wanted to end my life. Yes, I contemplated suicide. Like so many of my sisters with endometriosis, I hit bottom. I was tired of the pain, tired of the despair, tired of the guilt, and tired of being tired. But mostly, I was and am, just tired of the pain.
Living with Endometriosis is Horrendous
Now that I have exposed my vulnerable and aching heart to you, my friend, you have a choice to make. I will never blame you if you choose to stay away from my complicated and sometimes depressing life. Like I said, if I had the choice, I would probably do the same. But let me say one last thing before you make your decision. Life with endometriosis is horrendous, but women with endometriosis are not. We are strong, determined women who fight fiercely and love fiercely. We try our best. We are not lazy or pathetic and we don’t give up. We may not sugarcoat the painful emotions and terrifying symptoms that we deal with. Our honesty may even frighten you. But when you meet a woman with endometriosis, you are meeting a proud, indomitable warrior. A soldier who goes into the fire on a daily basis and emerges with a thicker skin time and time again. A woman who should not be pitied for her pain, but admired for her ever-present resilience and strength. That, my friend, is who I am. Take me or leave me. It’s up to you.
Recently as I was doing more research for my adenomyosis website, I came across a “support” site for endometriosis sufferers that caught my eye…..not because of great content, but because of a post by the site administrator asking members to stop complaining about their symptoms. She referred to member comments as “whining/pity party”. This upset me as I suffered from adenomyosis for 17 years and had to put up with comments like these constantly. Reading this after hearing Dr. Drew’s ill-informed comments on endometriosis just proved to me that we still have a long way to go as far as educating the general public about these two disorders.
Endometriosis and adenomyosis are not just physical disorders. They also dramatically impact the psychological health of these women as well. I encourage you to read a heart-wrenching story of a young girl named Kristi who committed suicide because she could not get effective treatment and could not take the pain anymore. You can access the article at http://www.kokomoperspective.com, and the name of the article is “So No One Else Will Suffer”.
Dealing on a daily basis with chronic, severe pain is tough enough. But to have to listen to others write you off because you can’t obtain an accurate diagnosis creates immense additional distress for the sufferer. When I began to have symptoms, I lived in a very small town with limited medical care. When the doctors in that town couldn’t determine the cause of my pain, people around me began talking behind my back, saying that I was making everything up. In the article I mentioned above, Kristi had to face this same attitude by her own doctors in the beginning of her endometriosis journey. These kind of comments might not seem like a big deal to people who have never had endometriosis…….just typical gossip. However, for the person going through the daily chronic pain of endometriosis, these comments are devastating and can break a woman’s spirit which may even lead to suicide.
On the website that I mentioned earlier, several women became upset by the comments. I completely empathize with these women. The site administrator backed off a little bit, but she advised that if they were having those kinds of issues, they needed to go to a professional counselor. Yes, I absolutely agree with that. Professional counseling can help immensely in dealing with the mental/emotional aspects of endometriosis. However, let me remind everyone that not all of these women have access to the best medical care, including psychological care. If they live in a small town like I did, they may not be able to find the help they so desperately need. Also, some of these women may not have the financial resources to go to counseling on a regular basis. I strongly believe that women should have some kind of other outlet where they can just vent and connect with other women who are going through the same thing. Just knowing that they are not alone is huge help to these women! I encourage venting on my facebook site – Adenomyosis Fighters. I will never, ever refer to comments as “whining/pity party” because I’ve been there. I know what it’s like. Your feelings are your feelings, and you should never apologize for that. Even professional counselors will tell you that.
To the general public: Please, please have compassion for these women who are suffering from these conditions. Please remember that undiagnosed chronic pelvic pain is not necessarily “in your head”. Please remember that the average time to diagnosis for endometriosis is 10 years, and that number is even higher for adenomyosis. Please watch your comments around these fragile women and remember that they are dealing with chronic severe pain every day. And finally, please give your full support as they are forced to travel a very difficult journey in life. Thank you.
When I was going through my struggle with adenomyosis, I could not get any relief from any medication that the doctors had given me. Believe me, I was put on a bunch of them. At the time, I had been diagnosed with irritable bowel syndrome (which was incorrect as I found out many years later). I finally got to the point of looking into holistic treatments since these medicines weren’t helping me.
About 8 years into my ordeal with adenomyosis, I came across an article about the health benefits of flaxseed, an excellent source of omega-3 fatty acids. I was so impressed that I immediately ordered some and added it to all kinds of foods, from spaghetti to yogurt. To my shock and amazement, my symptoms began to improve!
This led to my thesis work for my Master’s degree in Holistic Nutrition. I ended up publishing my thesis titled “The Health Benefits of Omega-3 Fatty Acids in Irritable Bowel Syndrome and Inflammatory Bowel Disease”. Remember, at the time I thought I was suffering from irritable bowel syndrome.
Although my symptoms had improved, they hadn’t gone away completely. Seventeen years into my struggle, I had a hysterectomy. The pathology report showed that I had deep, diffuse adenomyosis with possible fibroids. My symptoms stopped completely after this surgery. I was shocked to find out that I had actually had adenomyosis and NOT irritable bowel syndrome!
Recent research is now showing that there is a link between endometriosis symptoms and low intake of omega-3 fatty acids. Although as of yet I have not found studies on adenomyosis and diet, endometriosis is a similar disorder, and in fact the two disorders are often times seen together.
In 2010, an article was published by Stacey Missmer from Harvard University entitled “A prospective study of dietary fat consumption and endometriosis risk”. They analyzed 12 years of data from the Nurses’ Health Study II. They found that increased intake of omega-3 fats were associated with an decreased occurrence of endometriosis. In addition, those who had the highest intake of trans-fats were 48% more likely to be diagnosed with endometriosis. Their conclusion states that this “provides another disease association that supports efforts to remove trans fat from hydrogenated oils from the food supply.”¹
There are many other studies that have been done recently that have come up with similar conclusions. Therefore, if you have either of these disorders, it might behoove you to remove trans fats completely from your diet and increase your consumption of omega-3 fatty acids.
¹Source: Pub Med: Missmer, Stacey A. et al. “A prospective study of dietary fat consumption and endometriosis risk.” Channing Laboratory, Department of Medicine, Brigham and Women’s Hospital and Harvard Medical School, Boston, MA, published in Human Reproduction (Impact Factor):4.67), 03/2010; 25(6):1528-35.
Have you every heard of adenomyosis? If not, you may want to learn about this condition since it affects so many women of childbearing years. Even young men need to learn about this uterine disorder since it may one day affect their future wife or daughter. I know, it isn’t fun to talk about reproductive health in women, but it is imperative in order to help these poor women who have to deal with it on a daily basis.
Adenomyosis used to be called “endometriosis interna”. It is similar to endometriosis in that the endometrium, or the layer of the uterine wall that is shed every month in the form of a menstrual period, is misplaced. In endometriosis, the endometrial tissue is found outside of the uterus, such as on the ovaries, or rectum. In adenomyosis, the endometrium actually invades the muscle of the uterus and can be found throughout the entire uterine wall.
Both of these conditions cause extremely heavy and painful menstrual bleeding, abdominal bloating, severe fatigue due to excessive blood loss (anemia), migraine headaches, infertility, and a host of other problems. Clearly, these disorders can significantly impact the quality of a woman’s life.
Thankfully through the help of many great organizations such as the Endometriosis Foundation of America, endometriosis is finally coming to the forefront as a serious medical condition. This disorder has recently received a lot of attention due to the efforts of these wonderful groups. However, adenomyosis continues to be a significantly neglected disorder. Very little research has been done on this disorder, and the criteria for accurately diagnosing adenomyosis continues to be problematic.
I had adenomyosis for 17 years before I finally obtained relief through a hysterectomy (currently, the only “cure” is hysterectomy). Since that time, I have dedicated a large part of my spare time to education on this disorder – writing a book on my experience and starting my own website, Adenomyosis Fighters. I have also authored and sent a petition to the National Institutes of Health which was acknowledged by Dr. Alan Guttmacher, Director of the National Institute of Child Health and Development. He informed me that adenomyosis has recently been included in the scientific research that is being done at the Eunice Kennedy Shriver Institute and told me that they are always ready to accept excellent applications from outside academic institutions for more adenomyosis research.
I have started another petition that will be sent out to over 20 academic research institutions asking them to develop more studies on adenomyosis and to apply to the NIH for funding. As of now, the petition has 244 signatures, and we are looking for many more. The petition will officially close on September 30, 2015. In addition to this new petition, I am working on my second adenomyosis book which will have the most up-to-date information available on this disorder. It should be available for purchase by the end of 2015.
For more information on adenomyosis, please check out my “Adenomyosis Fighters” website at http://www.adenomyosisfighters.com. On the homepage, you will find the link to the petition on the Care2 website. Please consider signing this petition as it will help so many women who are suffering from this terrible uterine disorder. Information on my published book can also be found on this site.
I hope with all my heart that we will be able to learn what causes this disorder and effective ways to treat it soon!
For the next few minutes, I ask you to put yourself in another person’s shoes. Just imagine.
Imagine waking up in the middle of the night to excruciating pain that comes in waves, first in your lower abdomen and then moving to your lower back. These waves of pain come every three to four minutes, and are similar to full stage labor pains or kidney stone pain.
Imagine not knowing the reason or cause of this pain.
Imagine that you have no way to control this pain. The doctors have given you all kinds of medications, but nothing works.
Imagine going through this pain for five to six hours during the attack…waves of intense pain every three to four minutes which then start to move down to the upper parts of your legs. You could swear you are giving birth.
Imagine standing at the bathroom sink in the middle of all this with sweat pouring off your face and horrible nausea due to the terrible waves of pain. You can’t stand up straight because the pain is so unbearable.
Imagine holding onto the sides of the bathroom sink as you try not to faint as yet another wave of pain hits you. You see stars, and you try to position yourself so that you won’t hit your head if you fall.
Imagine an intense wave of pain throughout your belly as you grab onto the toilet to vomit…multiple times.
Imagine lying on the bathroom floor in the fetal position as you cry out of frustration while you are forced to endure this nightmare.
Imagine having menstrual periods that last ten to fourteen days per month with spotting on the other days.
Imagine having so much blood loss that you soak a pad in an hour.
Imagine how tired you feel because of the chronic anemia.
Imagine that you pass blood clots that are as big as the palm of your hand.
Imagine that you have so much abdominal bloating that you look three to four months pregnant.
Now imagine that this happens to you at least once a month.
Imagine trying to get pregnant while enduring all of this, but it never happens. You never have children.
Imagine the anxiety that you feel because you never know when an attack will hit you. You make sure you are always close to a bathroom. You panic as you drive down the highway and start to feel pelvic pain.
Imagine going through this while trying to hold a full-time job. What will your boss or co-workers say when you take another sick day?
Imagine trying to be a parent while suffering from this uterine condition. You can’t take a sick day as a parent.
Imagine that you undergo numerous invasive tests only to be told that they can’t find the cause of your problems.
Imagine being told that you need to see a psychologist because of this problem, and you are put on antidepressant medication for your depression and anxiety.
Imagine your friends, acquaintances, and “experts” telling you that “it’s all in your head” because the doctors can’t find a cause of the pain.
Imagine going through multiple surgeries but the pain and heavy bleeding always return.
Imagine having an endometrial ablation and being told that this will certainly stop the bleeding. The bleeding returns 24 hours after surgery.
Imagine having a hysterectomy before finally obtaining a correct diagnosis…after seventeen years of unbearable physical, mental and emotional pain. It was adenomyosis.
Imagine a doctor telling you that he doesn’t know anything about adenomyosis. He tells you to “google it”.
Just imagine. Imagine the frustration. Imagine the pain. Imagine your quality of life during that time.
First of all, THANK YOU so much for the response to my previous blog post, “For a Moment, Imagine the Pain”. I was stunned when I learned that this post had gone viral! I can’t even tell you how much that means to me knowing that I have helped so many women in my own small way. Even though there is no cure for this disorder at the moment, we can all at least support each other mentally and emotionally. The fact that you know that you aren’t alone is HUGE in the battle against this monster of a disorder!
As I continue to push for more education and research for adenomyosis, I am so affected by all the stories that I read from women who are currently struggling with this uterine disorder. I read a lot of posts by women who just want basic information. These women are desperate to know that there are other women out there who are going through the same thing. Therefore, I have decided to write a blog post on my experience, hoping that this information will help others out there who are suffering currently. WARNING: Before reading any further, please know that this blog is graphic!
From the first day of my first menstrual period at the age of 14, I have had bad cramps and heavy bleeding. I remember coming home from high school because I was in so much pain and having to take Motrin to stop the cramps. I was told that this was all normal. All women have cramps and feel like hell during their periods. It was all just a part of being a woman.
When I went to college, I noticed that a lot of the girls in my dorm just seemed to breeze through that time of the month. Although it wasn’t a main topic of discussion, it seemed like some girls never slowed down…ever. They always felt pretty good and had so much more energy than I did. I really began to blame myself for not being a stronger woman. Why did I struggle so much during “that time of the month”? I was drained, moody, and had horrible headaches that didn’t seem to respond to ibuprofen, and I began to refer to them as “menstrual headaches”.
The real nightmare started in 1990. I woke up one morning to searing abdominal pain. Now, for comparison, I had a ruptured appendix in 1986, and obviously, I clearly remember that pain. The surgeon told me that I was very close to death after my appendectomy as my appendix was also gangrenous. I ended up with peritonitis (a very serious abdominal infection) and was on IV antibiotics for six days. My surgeon told me that if I ever felt pain like that again, I needed to get to the hospital as soon as possible. I never forgot that.
Back to the morning in 1990 – this abdominal pain was even more severe than the pain I felt from the ruptured appendix! It came in waves every few minutes, and when the pain hit, I thought I was going to pass out. Sweat poured down my face, and my shirt was wet. I felt like I had to have a bowel movement, but I was unable to defecate. At the time, I had just finished my period, which was horribly heavy and long (about ten days), and I was still spotting. I was petrified! I called my mom, and she came to pick me up to go to the hospital. I told her that I was in so much pain that I couldn’t even walk to the car, but she helped me, and somehow I made it. As I compared this to the experience with the ruptured appendix, I was sure that I was on my death-bed.
When I arrived at the hospital, I felt like I needed to have a bowel movement again. I raced to the bathroom and had a huge bout of diarrhea. I felt a little bit better, but those waves of pain kept coming. The ER doctor ran a bunch of tests, but they all came back normal. He gave me some narcotic pain meds through an IV and told me I probably had food poisoning. He sent me home. I have to admit that I was a bit skeptical. This pain was more severe than the pain I felt after my ruptured appendix. Was this really food poisoning, or did he miss something?
Other than painful menstrual cramps, lengthy periods, and spotting, nothing really happened for about a year. During that time, I married and continued to work as I just put up with these difficult menstrual cycles. Then, suddenly, I awoke one night to the exact same pain. I sweated profusely, had excruciating cramping pain that doubled me over every few minutes, felt like I was going to pass out from the pain, and became very nauseated. Again, I felt like I needed to defecate but was unable to do so. After about five hours and having yet another bout of diarrhea, things settled down. Interestingly enough, this attack also happened at the very end of my menstrual period, and I was spotting at the time. I called in sick the next day to work, and I went to the doctor.
After explaining that this exact same thing happened twice within the year, the doctor was concerned that I had irritable bowel syndrome. He ordered a colonoscopy. Well, the colonoscopy came back completely normal. In fact, the gastroenterologist said that my colon looked so good that I didn’t need to have another colonoscopy for twenty years! I was frustrated. What was causing this horrendous pain?
As the years went by, these attacks became more frequent. They mostly occurred at the end of my menstrual period which clued me into the fact that this could be a gynecological problem. However, when I went to my gynecologist, he assured me that everything was normal and just told me to take ibuprofen. I was told that this was all “normal”.
My co-workers began to doubt that I was sick. People began to talk behind my back. Since the doctors couldn’t find anything wrong with me, they assumed that I was a hypochondriac.
My worst year was 1996. I had these attacks AT LEAST once a month, and all of them occurred before, during, or at the end of my menstrual period. I decided to change gynecologists and get a second opinion. I traveled to a teaching hospital in Georgia at the recommendation of a friend, and I was super optimistic that I would get an answer there. This gynecologist scheduled a laparoscopy to investigate the cause of the pain. This surgery identified some endometriosis which was ablated during the procedure, and I hoped that this would finally be the answer. However, it wasn’t. Two months after surgery, the pain returned full force.
I returned to this doctor several more times, but she was unable to get to the bottom of the issue. The attacks continued and even worsened. I remember several nights in particular. One night, the pain was so severe that I was having diarrhea while vomiting in the trash can at the same time. On another night, the most severe cramp that I had ever had came across my abdomen, and I literally thought my intestine was going to rupture. On yet another night, I saw stars when a cramp hit me, and I thought for sure I was going to faint. I just grabbed onto the sink and told myself to breathe as I positioned myself so I wouldn’t hit my head if I fell. I remember lying on the bathroom floor in the fetal position, crying out of extreme frustration, begging God to deliver me from this nightmare. With each attack, I always felt like I had to have a bowel movement, but I couldn’t go. Some nights, I would become so frustrated that I would push as hard as I could, desperately trying to defecate. This led to the development of hemorrhoids.
Over the years, I began to notice that I would become extremely bloated just prior to the attack. In fact, if people didn’t know any better, they would think I was pregnant. Once the bloating began, I knew I was in trouble and that I better get home as soon as possible. I also began to pass incredibly large blood clots, some as big as the palm of my hand. I KNEW that this had to be some kind of gynecological disorder.
I began to have panic attacks. If I started to bloat or started to feel any kind of pelvic pain and I wasn’t at home, my heart would race, and I would start to feel faint. I would begin to shake and feel panicky, especially if I wasn’t near a bathroom. I remember a trip that my husband and I took to Las Vegas, and when we were in the airport on our way to go home, I began to bloat up. I became shaky and nauseated, and I began to have pelvic pain as we waited in line for our tickets. I went to the bathroom since I felt like I needed to defecate, but I couldn’t. Panic overtook me, and we had to stay in Vegas an additional two days before I could travel home. The doctor who I saw in Vegas was convinced that I had gastroesophageal reflux which I knew at the time was a bunch of nonsense. Honestly, I felt like telling him off because he wasn’t listening to me, but I was just too sick. He did give me some medication that made me sleep, and this is really what it took to get me home. I don’t think I would have traveled had I not been sedated.
Eventually, we moved to Virginia. I searched for a well-respected gynecologist and again had some hope when I found one that was highly recommended. I told her all that had happened to me, and she ran all the tests that had already been run on me in Georgia. Of course, everything came back normal. She suggested that I try birth control pills. These helped a little bit, but I still was miserable and still had the occasional attacks of severe pain.
I went back to her repeatedly, and I could tell that she was becoming more and more impatient with each visit. One time, I went with a detailed list of my symptoms and when I experienced them. As I started to read the list to explain things to her, she grabbed it from me, glanced at it a few seconds, and then threw it on the chair. As she performed my exam, I tried to ask her more questions, but I could tell she wasn’t interested in helping me. She told me, “I have to go. I have other naked women waiting on me”.
Extremely frustrated, I went to yet another gynecologist that was recommended to me. This guy was worse than the other. He actually closed his eyes while I talked to him, and I could swear he was sleeping. He did all the routine tests, the same as the other doctors, and couldn’t find any problems.
I continued to try to live my life as normally as possible. I had been prescribed a slew of different medications over the years, and none of them worked. At one point, I was prescribed Bentyl for irritable bowel syndrome, and this medication was completely useless. When one of the attacks started, I took that medication immediately with high hopes of it at least lessening the pain. This medication did absolutely nothing…no pain relief at all, and it ended up being one of the most severe attacks I ever had. Most of the doctors wanted to jump to the conclusion that I had IBS since they couldn’t find anything else. It is important to note that IBS is a diagnosis of exclusion. This means that if all other tests are negative, they assign the label of “IBS”…which to me means that they don’t know the real cause of the problem.
Finally, out of desperation, I looked to natural alternatives. I read up on the benefits of flaxseed, and I was intrigued. I began to incorporate ground flaxseed (very high in omega-3 fatty acids) into my diet, and my symptoms reduced. I was absolutely amazed! This propelled me into alternative medicine, and I now have a Master’s degree in Holistic Nutrition.
Although dietary changes did bring some relief, I still struggled with prolonged menstrual bleeding that lasted up to fourteen days, spotting for several days after that, bad menstrual cramps, digestive problems during menstruation, passing extremely large blood clots, infertility (we tried for ten years with no luck), menstrual migraine headaches, and terrible PMS (mood swings in particular). I was eventually diagnosed with a uterine polyp via hysterosonogram. The actual procedure was not bad at all (I expected it to be painful). However, on our way home (about 15-20 minutes later), severe cramping started. We were stuck in horrible traffic, and I told my husband to pull over. The car next to us wouldn’t let us over which obviously made both of us mad. I thought I was going to vomit from the pain, but there was nothing my husband could do. Finally we were able to pull into a McDonald’s restaurant, and I had a huge bout of diarrhea which lessened the pain enough that I could get home. After this experience, I was convinced that my uterus was the problem. The polyp was removed through hysteroscopy, but even after this surgery, the symptoms continued.
Several years later, we moved to Texas. Finally, I came across a gynecologist who was empathetic to my situation. She suggested that I have an endometrial ablation to see if that would ease my symptoms, and I agreed to do so. This surgery is supposed to stop all bleeding as it burns the endometrial lining of the uterus. However, 24 hours after surgery, I began to bleed. Since this isn’t supposed to happen, I went to the hospital.
Emergency room physicians are sometimes not very good at performing gynecological exams as I found out later. During the exam, I was torn which caused me even more pain. I was fuming mad, and I can’t even describe the amount of stress and frustration that I felt at the time. Of course, the ER doctors couldn’t find any problem other than I was bleeding when I shouldn’t be bleeding. A lot of good that trip did for me!
The next day, I went back to see my gynecologist. When she examined me, she was very concerned. I remember her words: “Wow, this is way too much bleeding. This has never happened with any other ablation that I have done.” At that time, I asked for a hysterectomy, and she agreed.
I really was quite happy on the day of the hysterectomy in 2007. Finally, this uterus that has put me through hell is going to come out! The ovaries were left as I was still in my early forties, and my gynecologist didn’t want me to go into early menopause.
The follow-up visit with my gynecologist is one day I will never forget. She came into the room and FINALLY explained to me why I had so much pain over all those years. I had severe diffuse adenomyosis with fibroids. She went on to explain that this condition cannot be definitively diagnosed prior to hysterectomy and that it could explain all of my issues over the past seventeen years. Needless to say, I couldn’t have been happier. The next day, I sent her flowers, thanking her for finally finding the cause of my pain.
Since my hysterectomy, ALL of my symptoms have completely resolved. I have not had any attacks since that day.
If you would like to read more details of my adenomyosis journey, I have written a book called “My Hormones are Killing Me: My Struggle with Adenomyosis and Estrogen Dominance” by Maria Yeager. It is available for purchase on Amazon. I hope my story will help other women out there by letting them know that they are not alone. For more information on adenomyosis, please visit my website at http://www.adenomyosisfighters.com. Also, please feel free to contact me via my website if you have any questions. I am very passionate about this cause, and I will do my best to help you as much as I can 🙂
Hugs to all those adenomyosis and endometriosis fighters and survivors out there!
You are all heroes!
Please click on the link below to read a fantastic story that discusses adenomyosis and endometriosis and the difference between the two disorders. What struck me most was that she gave birth naturally (no pain killers) after suffering from endometriosis for many years, and she said that the pain from childbirth paled in comparison to endometriosis pain. It is important that the general population read stories like this so they can understand the degree of pain associated with these uterine disorders. Thanks, Rebecca, for telling your story!