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!