First off, thank you to the 289 people that read my response to Dr. Zahn. Sometimes it better to put all of your anger and disgust into written form.
Some of you may already know but some do not, but next week I am heading to New York. I went a month ago and met with Dr. Seckin who is pretty much a surgical legend in the world of Endometriosis. After an MRI and yet another ultrasound, it was determined that I have to have another surgery. This time it requires a team of surgeons to excise the endometriosis. The thing that I like the most about him, is his technique of the blue dye contrast. He invented it and it will show the endometriosis which to me is brilliant. I honestly don't know what he will find, he didn't like what he saw on my MRI, hence the team of surgeons. I will have to have a bowel resection, so there is that. It may seem like my head is in the game but I am scared. I usually walk into these surgeries like a badass but something about going under again within a year is quite scary. I just want this week to fly by at work. I just want to get the pre op stuff out of the way... Also I don't want to die.
Sunday, September 17, 2017
Friday, September 15, 2017
Dear Dr. Zahn.
Dear Dr. Zahn,
I am one of the 176 million women with Endometriosis. I just read your reply to the petition that over 6,000 of family, friends and fellow Endometriosis sisters have signed. 6,000 is a huge number. That is 6,000 voices that are now disgusted by your response. When you replied you replied to 176 million women. I reiterated that because I don't think you understand how many women you have dismissed in your response.
I will give you a little snapshot of my history with this disease. I was diagnosed at 22, after being in pain since 11 years old. My first doctor I ever came in contact with was a pediatrician who told me I had bad periods and to take naproxen and put me on birth control. That obviously didn't even touch the pain or the periods that would last for well over a week. At 16, I met with an OBGYN who again put me on various types of birth control, diagnosed me with IBS and put me on narcotics. At 16! narcotics?! I missed the majority of my senior year and almost did not graduate because of absences. At 21 I found another doctor (we are now at doctor #3), who talked about possibility of endometriosis and that we would have to do laparoscopic ablation and then I would be back to resume normal life. At 22, I had my first ablation surgery. I woke up in worse pain then I did before surgery. A year later, another doctor, (we are up to #4 in case you lost count). This doctor explained how ablation is the best course of action and also an IUD should "fix" everything. Well, surgery #2 at the age of 24 and again the same situation, pain was far more worse this time, to the point that I was out of work every month during my period and some days beyond that because the pain was too much to even function. At 26 I had excision and at 31 a hysterectomy from adenomyosis. I gave my uterus to this disease. To tell someone at 31 that you can't ever have your own children is not only devastating, it's heartbreaking.
I am now faced with yet another surgery at 32 years old. There were symptoms that went unnoticed by different doctors. So if you count all the surgeries this is #5. This surgeon is out of network and out of pocket. It would have cost me $7,000. Even with out of pocket deductibles from insurance. I got United Healthcare to approve a Gap Exception, and they listened to me talk about Endometriosis. I had an insurance company understand Endometriosis and approve me in under 24 hours. You couldn't even give us a proper letter and explanation? I know that if I had a proper diagnosis early, as well as a trained and skilled expert that was covered then I wouldn't be where I am today.
I am 1 in 10 women that are waiting for change. I will not stop until you listen. We are awaiting a more valid response.
Respectfully,
Allison Monteiro
I am one of the 176 million women with Endometriosis. I just read your reply to the petition that over 6,000 of family, friends and fellow Endometriosis sisters have signed. 6,000 is a huge number. That is 6,000 voices that are now disgusted by your response. When you replied you replied to 176 million women. I reiterated that because I don't think you understand how many women you have dismissed in your response.
I will give you a little snapshot of my history with this disease. I was diagnosed at 22, after being in pain since 11 years old. My first doctor I ever came in contact with was a pediatrician who told me I had bad periods and to take naproxen and put me on birth control. That obviously didn't even touch the pain or the periods that would last for well over a week. At 16, I met with an OBGYN who again put me on various types of birth control, diagnosed me with IBS and put me on narcotics. At 16! narcotics?! I missed the majority of my senior year and almost did not graduate because of absences. At 21 I found another doctor (we are now at doctor #3), who talked about possibility of endometriosis and that we would have to do laparoscopic ablation and then I would be back to resume normal life. At 22, I had my first ablation surgery. I woke up in worse pain then I did before surgery. A year later, another doctor, (we are up to #4 in case you lost count). This doctor explained how ablation is the best course of action and also an IUD should "fix" everything. Well, surgery #2 at the age of 24 and again the same situation, pain was far more worse this time, to the point that I was out of work every month during my period and some days beyond that because the pain was too much to even function. At 26 I had excision and at 31 a hysterectomy from adenomyosis. I gave my uterus to this disease. To tell someone at 31 that you can't ever have your own children is not only devastating, it's heartbreaking.
I am now faced with yet another surgery at 32 years old. There were symptoms that went unnoticed by different doctors. So if you count all the surgeries this is #5. This surgeon is out of network and out of pocket. It would have cost me $7,000. Even with out of pocket deductibles from insurance. I got United Healthcare to approve a Gap Exception, and they listened to me talk about Endometriosis. I had an insurance company understand Endometriosis and approve me in under 24 hours. You couldn't even give us a proper letter and explanation? I know that if I had a proper diagnosis early, as well as a trained and skilled expert that was covered then I wouldn't be where I am today.
I am 1 in 10 women that are waiting for change. I will not stop until you listen. We are awaiting a more valid response.
Respectfully,
Allison Monteiro
Thursday, September 14, 2017
15 days
I am 15 days away from my 7th surgery in my lifetime. 4 just for endometriosis. Now 4 becomes 5. There are many women that have had more. I want this to be my last. I am praying that this will be my last. I remember my first surgery vaguely. I wasn't really scared I just went about the motions. The same feelings for the rest of them, I just walked in and did what I had to. This one however is different. I am afraid of dying. I was filling out my health care proxy, and it said burial or cremation? I said to myself,do I want to be on a mantle or in the ground? Then came the feeding tube questions. I've never in my life had a health care proxy. But this surgery is going to be huge. I won't lie that I'm scared. I trust my doctor more than anything and I know I'm in good hands. Also there is the mindset of healing. This time I'm out of work without pay. Which stresses me out financially. I want to push myself to get better as fast as I can but I did that last time around and went back too soon. So much to think of. It's in gods hands for sure. Just take the wheel and make me better. I'm sick of being sick!
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