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Recently as I was doing more research for my adenomyosis website, I came across a “support” site for endometriosis sufferers that caught my eye…..not because of great content, but because of a post by the site administrator asking members to stop complaining about their symptoms. She referred to member comments as “whining/pity party”. This upset me as I suffered from adenomyosis for 17 years and had to put up with comments like these constantly. Reading this after hearing Dr. Drew’s ill-informed comments on endometriosis just proved to me that we still have a long way to go as far as educating the general public about these two disorders.
Endometriosis and adenomyosis are not just physical disorders. They also dramatically impact the psychological health of these women as well. I encourage you to read a heart-wrenching story of a young girl named Kristi who committed suicide because she could not get effective treatment and could not take the pain anymore. You can access the article at http://www.kokomoperspective.com, and the name of the article is “So No One Else Will Suffer”.
Dealing on a daily basis with chronic, severe pain is tough enough. But to have to listen to others write you off because you can’t obtain an accurate diagnosis creates immense additional distress for the sufferer. When I began to have symptoms, I lived in a very small town with limited medical care. When the doctors in that town couldn’t determine the cause of my pain, people around me began talking behind my back, saying that I was making everything up. In the article I mentioned above, Kristi had to face this same attitude by her own doctors in the beginning of her endometriosis journey. These kind of comments might not seem like a big deal to people who have never had endometriosis…….just typical gossip. However, for the person going through the daily chronic pain of endometriosis, these comments are devastating and can break a woman’s spirit which may even lead to suicide.
On the website that I mentioned earlier, several women became upset by the comments. I completely empathize with these women. The site administrator backed off a little bit, but she advised that if they were having those kinds of issues, they needed to go to a professional counselor. Yes, I absolutely agree with that. Professional counseling can help immensely in dealing with the mental/emotional aspects of endometriosis. However, let me remind everyone that not all of these women have access to the best medical care, including psychological care. If they live in a small town like I did, they may not be able to find the help they so desperately need. Also, some of these women may not have the financial resources to go to counseling on a regular basis. I strongly believe that women should have some kind of other outlet where they can just vent and connect with other women who are going through the same thing. Just knowing that they are not alone is huge help to these women! I encourage venting on my facebook site – Adenomyosis Fighters. I will never, ever refer to comments as “whining/pity party” because I’ve been there. I know what it’s like. Your feelings are your feelings, and you should never apologize for that. Even professional counselors will tell you that.
To the general public: Please, please have compassion for these women who are suffering from these conditions. Please remember that undiagnosed chronic pelvic pain is not necessarily “in your head”. Please remember that the average time to diagnosis for endometriosis is 10 years, and that number is even higher for adenomyosis. Please watch your comments around these fragile women and remember that they are dealing with chronic severe pain every day. And finally, please give your full support as they are forced to travel a very difficult journey in life. Thank you.
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.