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I recently started the Adenomyosis Fighters Support Group on Facebook, and I have noticed that a lot of women seem to have fears about having a hysterectomy. I want to alleviate some of these fears by sharing my own hysterectomy story.
I suffered from debilitating pain and very heavy menstrual bleeding for about seventeen years. During that time, I never received a definitive diagnosis. After a failed endometrial ablation, my OB/Gyn finally gave me the option of hysterectomy. I jumped on that option immediately because I was just so sick of dealing with all the pain and bleeding.
I was terrified. I was terrified of the surgery itself, but I was also terrified of what would happen after the surgery. Would the pain actually be gone? After all, I still didn’t know exactly what was wrong with me. Would I immediately go into menopause with those horrendous hot flashes, night sweats, and mood swings?
My doctor explained to me that she would only take my uterus. This would be done laparoscopically instead of a vaginally. She explained that the laparoscope would go in at my belly button so they could view my abdominal cavity. There would be two tiny incisions on either side of my lower abdomen where she would insert two instruments that would remove small pieces of my uterus until the majority of it was gone. She explained that with this kind of surgery, the very bottom of the uterus just above the cervix would probably remain, and this very small part may still bleed, so I may still have some very light periods after the surgery. She did not want to take my ovaries since that would send me into premature menopause. I agreed to this type of surgery.
Even though my doctor explained all of this to me, I was still scared to death. Again, I didn’t have a diagnosis, so I wasn’t sure if this surgery would take away the pain or not. By this point in my life, I had many surgeries, so I kind of knew what I was facing – signing in at the desk, filling out all the insurance paperwork, waiting until the nurse called me back, getting into a hospital gown, having the nurse start the IV….and then that long wait. Just sitting there, waiting, with my family members. This was always the hardest part for me. My heart raced, and my stomach was queasy. The only thing different for me was that the nurse came in a put tight stockings on my legs. I asked why, and she said “to prevent any clots from forming in your legs”. This just added to my stress…one more thing to worry about.
Finally, the time came to go to surgery. This was always a time of relief for me. When they gave me the drug to make me drowsy, all the stress just melted away. I was suddenly so drowsy that I didn’t care what they did to me. Finally, my heart stop racing and my stomach settled. The stress was gone. Before I knew it, I was asleep.
When I woke up, I don’t remember feeling any pain at all. This was probably because I was so drugged up. I dozed on and off for a while. Next thing I knew, my family came in to see me. I don’t remember much at first, but gradually, I woke up. I still don’t remember much pain at all. A little while later, a nurse came in and removed my catheter. I was nervous, but I really didn’t feel much at all – it was quite easy. Later, the nurse asked me if I thought I could walk to the bathroom. I said yes, and I got up and slowly walked to the bathroom while the nurse walked next to me, holding my IV bag. I was able to urinate on my own without a problem other than being a little bit dizzy. Several hours later, I was discharged and sent home. I slept most of that day. I still don’t recall much pain at all. More than anything, I remember being a little weak and dizzy from the anesthesia, but I still had no problem walking as long as someone helped me.
The next morning, I got out of bed and walked into the kitchen where my mom was sitting at the kitchen table. She couldn’t believe how good I looked and commented over and over again about how well I came out of the surgery. I sat down at the breakfast table to eat, feeling pretty darn good. I was a little sore at the incision sites, but it really was minor. I ate breakfast, and a few minutes later, I had some abdominal cramping.
I need to stop here and give a little more background information on my ordeal with adenomyosis.
I had a retroverted uterus which means that it leans backward toward my bowel. During my ordeal with adenomyosis, one of the main symptoms that I had was excruciating pain with bowel movements during menstruation. The pain was so bad that at times, I actually had to crawl to the bathroom because of the pain. There were times I almost passed out from the pain, and at times I would end up vomiting. As my abdomen cramped, I would be unable to have a bowel movement. I could swear that at times, my bowel was obstructed from my adenomyotic uterus.
So, when I had this abdominal cramping after breakfast the day after my hysterectomy, I was really disappointed. It was the same type of pain that I had before the surgery. I thought that the surgery didn’t work, and anger, disappointment, and frustration just took over. The pain was fleeting, however. I went to the bathroom and had a bowel movement, and the pain dissipated rather quickly. Overall, it lasted maybe two minutes or so, and then I was back to my normal self.
That was the last time I had any abdominal pain! The last! I assume that this last bout of fleeting pain was a result of inflammation in that area as a result of surgery.
A few weeks later, I had a follow-up with my OB/Gyn. My mom was with me. She walked in to the room, sat down and looked at me. “Well,” she said, “I have some interesting news for you. The pathology report came back. You had a disorder called adenomyosis.” She also told me that I may have also had fibroids. There was some question as to whether or not the problem was all adenomyosis or adenomyosis and fibroids. I have since learned that adenomyosis and fibroids are commonly confused by doctors.
I was so happy to finally have a diagnosis that I sent roses to my OB/Gyn thanking her for finally giving me an answer. Months went by with no pain, and I started to realize that this whole nightmare was actually over. Hysterectomy was the best thing I ever did!
For about five years after the hysterectomy, I continued to have extremely light periods as my doctor had told me. The periods lasted one to two days only, but there was no pain associated with them. About four years after hysterectomy, I began to miss periods. I knew I was in perimenopause, but I was told that I wouldn’t be in complete menopause until I didn’t have a period for a year. My periods were sporadic for several years. Finally, my periods stopped completely, and at age 51, I am in menopause.
I did not take any hormones while going through the change. I had minimal discomfort during this time. I did have some sleepless nights, some night sweats, and some hot flashes, but all that was just annoying rather that really disruptive to my life. Adenomyosis was hundreds of times more disruptive that menopause. I would take menopause any day over adenomyosis. Of course, that’s just my experience. I clearly can’t speak for all women!
So, I hope that this blog helps to alleviate fears in women who are facing a hysterectomy due to adenomyosis. Although each woman has their own experience, my gut tells me that if you can get through the pain of adenomyosis, you should be able to breeze through a hysterectomy. In my life, I have had ten surgeries – ruptured appendix, adenomyosis surgeries, three back surgeries, and a coiled brain aneurysm. By far, the worst pain I have ever felt is from adenomyosis. The only thing that has come even close to this pain is my ruptured appendix. The back surgeries and coiled brain aneurysm were a breeze to me. Women with adenomyosis truly are some of the strongest women walking the planet. If you can get through the pain of adenomyosis, you truly can get through anything!
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!
Very interesting read…highly recommended for all adenomyosis sufferers. You are not alone!
Oh where to start with this one! ( Warning, this may be a long read) My journey with this illness has had me literally pulling my hair out, from the let downs to the waiting and waiting on answers that nobody would ever give, it’s been a struggle and it continues to be. I can’t see […]
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.
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!
I received a message last week on the Adenomyosis Fighter’s facebook page that was nothing short of amazing, and I wanted to share this information with all adenomyosis sufferers out there. Beth P., a nurse, shared some details of her struggle with this uterine disorder.
She read my book, Adenomyosis: A Significantly Neglected and Misunderstood Uterine Disorder, in one sitting. She told me that she cried when she read “For A Moment, Imagine The Pain” (see previous blog).
Beth struggled terribly while dealing with adenomyosis. She tells of her ordeal in her own words:
“I can remember fainting, hitting my head so hard on the elevator, my nursing school friend said it scared her. Or when at a winter retreat with my church youth group, freaking out because I had bright red blood and diarrhea with horrible pain, thinking I had bloody stools…Then there was the day, driving, I vomited out the window of my car, then stopped the car to lay down in the grass before I passed out. Another time, as I was laying in the grass outside my nursing class, a squirrel was staring me right in the face as I opened my eyes. I think it thought I was dead.”
Beth had her ovaries and tubes removed at the urging of her doctor because her CA125 level (a marker for ovarian cancer) was high, even though no abnormalities of her ovaries were identified through MRI. After learning about adenomyosis, she regrets this decision. She states:
“An NIH study revealed that in 55 women with adenomyosis diagnosed by hysterectomy, their CA125 was over 100 before their surgery.” Beth believes that her high CA125 was actually due to adenomyosis, not an abnormality of her ovaries.
The most interesting thing that Beth noted in her story is what happened during her last period after her surgery. This period was rough for her, so she decided to use a 25 mg progesterone suppository to help ease her symptoms. She was able to obtain this suppository because her husband is a physician. These suppositories are typically used on women who have threatened miscarriage. However, she tried this based on her research that adenomyosis is linked to estrogen dominance. About 15 minutes after inserting the suppository, her symptoms improved dramatically and the clotting stopped. The rest of her period was normal.
Estrogen dominance is discussed at length in my book, Adenomyosis: A Significantly Neglected and Misunderstood Uterine Disorder. In this condition, the ratio of progesterone to estrogen is low, meaning that there is not enough progesterone to counter the effects of estrogen. It is important to know that both estrogen and progesterone levels may be normal in this condition, but the ratio of progesterone to estrogen is abnormal. This ratio is the most telling number in this condition. The critical problem in hormone testing today is that this ratio is usually not calculated. Doctors typically only look at the estrogen and progesterone levels only. So, if you have a “normal” estrogen level and a “normal” progesterone level, they will tell you that you are fine. In reality, you may actually have estrogen dominance because the ratio is abnormal.
There is a very clear link between estrogen and the growth of adenomyotic tissue. Dr. John Lee is the pioneer in discovering estrogen dominance, and the fact that Beth had such a dramatic improvement in symptoms after using a progesterone suppository just emphasizes this important concept. When I first learned about estrogen dominance, I ordered hormone testing through Dr. Lee’s site, and I was shocked to learn that I was, in fact, estrogen dominant. The following were my levels (discussed at more length in my book):
Estrogen – 2.3 (normal is 1.3-3.3)
Progesterone – 154 (normal is 75-270)
Ratio of progesterone to estrogen – 67 (normal is 100-500)
As you can see, my estrogen and progesterone levels were in the normal range, but the ratio of progesterone to estrogen indicates that I do have estrogen dominance.
So what causes this imbalance of progesterone to estrogen? One big culprit is xenoestrogens. These are man-made chemicals that act as estrogen in the human body. Some examples include parabens and phthalates in cosmetics, pesticides, herbicides, petroleum products, some food dyes and preservatives, and plasticisers. Some of these products have actually been banned, but they don’t break down easily and are still present in the environment. It is impossible to completely avoid exposure to all xenoestrogens, but there are many ways to reduce your exposure.
For a much more detailed discussion on this topic, please check out my book, Adenomyosis: A Significantly Neglected and Misunderstood Uterine Disorder, by Maria Yeager – available on Amazon and at Barnes and Noble.
Thanks so much to Beth P. for sharing her story! We both agree that hormone testing for estrogen dominance is of utmost importance in the accurate detection of adenomyosis