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Sari Botton contacted me on Saturday and generously sent me this article. She thought I would be interested in reading it since she struggled with adenomyosis. This wonderful piece was published in the New York Times on Friday, October 28, and it is an honest and heartfelt article on her ambivalent feelings on motherhood and her struggle through infertility and adenomyosis. Thank you so much, Sari, for sharing the details of your difficult journey…I know it will help so many women out there who are struggling with the same issues. The link to her article in the NY times is below – read it…you’ll be glad you did!
Great article on endometrial polyps from one of my fav blogs – Bloomin’ Uterus! Endometrial polyps can occur with adenomyosis, and it is important to be educated on this disorder. I personally had a uterine polyp removed via hysteroscopy during the years that I struggled with adeno. I highly recommend this article – full of great info!
One of our local EndoSisters has recently been diagnosed with endometrial polyps, something I know absolutely nothing about. So what happens when I know nothing? I research! What is a polyp? A polyp is an abnormal overgrowth of tissue, usually a lump, bump, or stalky growth (hence the mushrooms above). They’re most commonly found in the colon, […]
Today I would like to address some common misconceptions about adenomyosis/endometriosis and how these misconceptions dramatically impact the emotional/mental well-being of its victims. I have heard and read so many comments – ignorant comments – by those who don’t have the disorder that dramatically add to the depression and anxiety that these women have to endure. Here are some examples:
- You need to go to a psychologist. You just need an antidepressant.
- They’re just bad cramps. All women go through it. Why can’t you?
- You’re just being a baby about it. You’re weak.
- It’s all in your head.
- Just get more exercise. Go to the gym and it will all get better.
- Your diet is to blame. If you ate better, you would feel better.
- It’s all stress related. You just need to relax.
OK, so let’s address these comments one by one.
- Adenomyosis is not a psychological problem. Anyone who tells you that it is doesn’t know what they are talking about. Years ago, this belief was prevalent, but today we know that adenomyosis and endometriosis are NOT normal, and these disorders can be pathologically proven. Endometrial implants have actually been visualized in multiple places outside of the uterus in the case of endometriosis, and adenomyosis can be visualized as invading the uterine muscle. These disorders can be seen and are real!
- Adenomyosis and endometriosis are not just “bad cramps”. These disorders also cause very heavy menstrual bleeding with large clots, bowel and bladder issues, prolonged menstrual bleeding (many times up to 14 days), anemia, and infertility.
- There is absolutely nothing “weak” about dealing with adenomyosis and endometriosis. This comment many times is made by men, and they have absolutely no idea what it is like to live with an “angry” uterus. Until the day that a man is born with a uterus, the following comment by Rachel from the TV show Friends stands – “no uterus, no comment!”
- Adenomyosis is not in your head. Refer to #1.
- Adenomyosis involves endometrial tissue growing into the uterine muscle. Endometriosis involves endometrial tissue migrating outside of the uterus. No amount of exercise will change this process. This misplaced endometrial tissue will not magically return to its proper location just because you exercised for an hour. Don’t get me wrong – exercise is always a good thing. But exercise will not cure these conditions. In addition, during the height of an adenomyosis or endometriosis attack, women do not feel well enough to exercise. It is very easy to say “just exercise” when the person saying it doesn’t deal with either of these disorders.
- Now, this one has a bit of truth to it. Diet has been shown to reduce symptoms in some cases. However, diet is not a cure. Again, nothing dietary has been shown to definitely change the course of either disorder. Even so, there are some changes that can be made that seem to help some of the symptoms. Refer to my page, http://www.adenofighters.com, for more information.
- Again, relaxing may help reduce some of the symptoms, but it is not a cure. These endometrial implants will not just disappear just because a woman “relaxes”.
It is so important to understand that both adenomyosis and endometriosis are pathological processes, and the cause is currently unknown as is any cure. People who are around women who suffer from these disorders need to be acutely aware of this. Please don’t make these kinds of comments as they seriously impact their emotional and mental health. It is hard enough to deal with these disorders on a daily basis – the last thing they need is someone who doesn’t deal with adenomyosis/endometriosis to tell them how to “cure” themselves. There is no known cure at the current time except for hysterectomy in the case of adenomyosis. A hysterectomy will not cure endometriosis.
The physical toll of adenomyosis is very clear – severe pain, heavy bleeding, infertility, etc. This is much easier to see than the emotional toll these women have to face on a daily basis. The following are some of the issues I was faced with during my 17 year struggle:
1. Co-workers and friends not supportive due to the fact that the doctors were unable to diagnose the condition.
2. My own doctors telling me I needed counseling/antidepressants because they were not able to come up with an accurate diagnosis. I was told that my condition was probably stress related.
3. Having to struggle with severe abdominal pain and not having an accurate diagnosis – wondering all the time if I had something deadly (such as cancer) and the doctors were missing it.
4. Being afraid to leave my house for fear that an attack would hit me at anytime. Being afraid to not have access to a bathroom.
5. Constantly trying to get people to understand that I was in severe pain. I could not get them to understand the degree of pain that I was dealing with.
6. Taking Midol or ibuprofen constantly even when I was feeling good, “just in case” an attack happened.
7. Going through medical tests to have the doctors tell me that they found nothing – so I still didn’t have an answer to the cause of my pain. Knowing that I was going home and nothing was going to change.
As you can see, all of this can severely impact the emotional health of those struggling with adenomyosis.
Since doctors cannot diagnose adenomyosis easily, some of them are likely to tell you that it is stress related and may be quick to try and prescribe an antidepressant. My suggestion is to get a second opinion….or third or fourth!!
I remember watching Montel Williams one day discuss the problems when getting his correct diagnosis. It took 9 doctors before finding out that he had multiple sclerosis!! We now know through the show Mystery Diagnosis that a diagnosis by a doctor can be wrong. Thank goodness for Discovery Fit and Health and this show for bringing this fact to the forefront!
As far as my experience, I was told that it was “all in my head”. I was told that I needed to go to counseling for stress management. I was given a slew of antidepressants over the 17 years that I struggled with this disorder. Actually I probably did need the antidepressants for the stress I was going through in not getting an accurate diagnosis!! Everyone who is involved with an individual who is sick and not getting properly diagnosed needs to remember this one vital piece of information: the person going through it is suffering not only physically probably on a daily basis but also mentally. Treating a real disorder such as adenomyosis as if it is “in their head” just compounds the mental suffering and leads that person deeper into depression!!
“When you hear hoofbeats, think of horses, not zebras”
This is a popular saying among physicians. It means that when diagnosing someone, look for the expected and not for the unusual. This may be true in most cases. However, there are “zebras” out there! If someone has been complaining about any kind of problem for an extended period of time and has been tested for the usual disorders with normal results, it is time to look for the zebra! It certainly should not take 17 years (as in my case). During my research, I have found that the average time to get a diagnosis of adenomyosis is 9 years. In my opinion, this is completely unacceptable. Under no circumstances should a woman have to undergo severe abdominal pain and very heavy bleeding for that period of time. I’m asking for the medical profession to start looking for those “zebras” sooner than later.
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.
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!
This is a great article from the site, Bloomin’ Uterus. Great information!
As you may know, Endometriosis is not limited to just your reproductive bits & pieces. It can implant, grow, and fester in many places; the bowel included. But what does that mean? How do you…
Source: Endometriosis & The Bowel
I hear you.
I know what it is like to have abdominal pain that is so severe you can’t stand up straight…pain that feels like someone is reaching right into your abdomen and squeezing as hard as he/she can….pain that causes intense nausea and vomiting…relentless pain that doesn’t let up for hours. I feel your pain.
I know what it is like to bleed continuously for over two weeks…bleeding that is so heavy you soak a maxi pad in less than an hour….bleeding that causes you to become so weak that you can barely get out of bed to go to the bathroom….so much blood loss that you get migraine headaches and pass clots as big as the palm of your hand…bleeding that causes so much fatigue that you can barely make it through the day, many times skipping meals because all you want to do is sleep. I feel your weakness.
I know what it is like to go to a doctor and being told that it’s all “normal”….being told that you need to see a psychologist….being brushed aside because you’ve been to the doctor multiple times with the same complaint…having people think you are making it all up because the doctors can’t find a cause of your pain…hoping that the doctors find cancer – just so you can finally have a diagnosis…living without a diagnosis for over ten years or even longer…living with people around you that have no sympathy for your situation. I feel your frustration.
I know what it is like to never know when an attack will hit you….wondering if you will make it to your destination before the pain starts…waiting in an airport and looking around to see if a bathroom is nearby in case you need it…getting stuck in rush hour traffic and having a panic attack because you are afraid the pain might start while you are stuck…trying to “suck it up” so you can get through your day and not take more sick time. I feel your anxiety.
I know what it’s like to wait for yet more gynecological tests….waiting to see if they will find something life-threatening….waiting for hours for your surgery to begin…staring at the ceiling all night before the surgery, unable to sleep…the mild nausea and racing heart as you wait for the surgical techs to bring you back for yet another surgical procedure. I feel your fear.
I hear you. I hear you loud and clear because I’ve been through it. Women who suffer from adenomyosis and endometriosis are true warriors. They know real pain. They know real frustration. They know real anxiety. They know real fear. When you are in the presence of these amazing women, know that you stand among some of the strongest women alive. There is nothing or no one who will be able to take these women down after struggling with adenomyosis. We will defeat this disorder. It’s going to be a long and tough mountain to climb, but I am determined to climb it and won’t stop this fight against adenomyosis until my final breath. We will find a cure! Hang in there, warriors!
*Adenomyosis: A Significantly Neglected and Misunderstood Uterine Disorder is now available on Amazon. See my author website at http://www.mariayeager.com for more information.