Actress Susan Sarandon was a guest
speaker at the Endometriosis Foundation of America's 2011 Blossom Ball
hosted at the New York Public Library To learn more
about the foundation & endometriosis please visit their website: www.endofound.org
Showing posts with label endometriosis. Show all posts
Showing posts with label endometriosis. Show all posts
Saturday, June 1, 2013
Monday, May 21, 2012
Back from the Wizard
Today I got back from my big apt with with wizard or more like the man behind the curtain..............
Before I get into that. I had to go to an event at school tonight. At the end you have to stand by your room and greet the parents. Well, my coworker ignored me as usual. I decided that since she wrote in her last email that I misread her body language, there should be no issue. I made two comments and she ignored me. Then I walked over to her and said that I was leaving and that I hope she has a good night etc. She turned to me and spoke. I could tell that she did not want to. I am going to make her talk to me. I am not going to let her intimidate me anymore.
......................................................................................................................
I am sad to report that this was a huge disappointment. I am glad that I went though bc if I hadn't then I would have been playing the what if game and regretted not going. We get there and there is nobody in the waiting room but us. Then I see many women come out but none go in. We waited for an hour. My DH goes up and asks about the ETA etc.
We finally go in and I see the packet I sent him on his desk. He says something about just getting it. REALLY??? I'm sure he got it a few days ago. I asked him if he read it, he said no. Then he asked me to tell him what's been going on. I asked again if he read my report he said no, just tell me. OMG My heart starts to beat, I turn to my DH and say, "I don't know what to say" At this point I am stunned that he could not take 5 min to read it before I walked in. OMG OMG. OMG. At this point my DH sees my face and jumps in. He asked him to take 5 min to read it now. Which he did.
He reads through it, but at this point I'm not sure how deep bc he gave me the same diagnosis and basically the same treatment plan that he did last year. REALLY????? This makes me think that his treatment plans are more generic than I thought. Maybe he did not read over my report bc he knew what he wanted to recommend no matter what was wrong with me personally.
He said that my main problem is endometriosis and that is causing poor egg quality. He said that Endo also attacks sperm so it cannot fertilize the egg. Of course if I did IVF then he could test this hypothesis and help me out....................OMG REALLY? I had already made it very clear that I was not interested in that.
In fact, he suggested that I stop all the immune treatments and just by some fancy supplements that "are only 60 a bottle". He said that he does not make any money off of them, but it felt like he was making a sales pitch. He also recommended that I take melatonin for my poor eggs. I am not sure about that. I have to do my research first.
He saw one weird thing in my report. There is a test called a LAD and it measures your body's immune reaction to your husband's. We both got our blood drawn and they mix it. I had a good result. He said that since I have never been pregnant I should not have that result. He thinks it means I have some other immune disorder. Then he said there is a new test coming out next month that could give some more info on this LAD mystery.
He also suggested that my DH and I get our HLA matches tested. I had never bothered bc I was already taking neupogen and that is the treatment for matches. So there could be a breakthrough with these new tests or this could all be nothing.
He was much nicer in person than he was on the phone. He did spend almost an hour speaking with us. He answered all of our questions. I am disappointed that he did not take the time to read over my report and really spend some time thinking about how to help me.
After we left, I got thinking about how they would charge me another 350 to go over the test results. My DH came to the rescue again. He asked at the front desk about the charge. Megan, the nice woman at the front told him that it would be covered bc he would just call me quickly to read the result. My DH asked them to put it in writing and she did!!!! Then she said to call asap to make an apt bc they are already booking for June. Even though it was a major hassle to drive down there with the traffic and pouring rain I am much happier with my service in person.
I am not sure what to do. I don't agree with stopping the immune treatments and just taking supplements. If it was just poor egg quality I think I would have gotten pg at least once in 5 years. Once I left, I felt so defeated and wanted to just cry and give up. He made it sound like the endo was a death sentence to my eggs. I had a long car ride home to think it over. I guess I have to wait and see what these next two tests reveal.
Before I get into that. I had to go to an event at school tonight. At the end you have to stand by your room and greet the parents. Well, my coworker ignored me as usual. I decided that since she wrote in her last email that I misread her body language, there should be no issue. I made two comments and she ignored me. Then I walked over to her and said that I was leaving and that I hope she has a good night etc. She turned to me and spoke. I could tell that she did not want to. I am going to make her talk to me. I am not going to let her intimidate me anymore.
......................................................................................................................
I am sad to report that this was a huge disappointment. I am glad that I went though bc if I hadn't then I would have been playing the what if game and regretted not going. We get there and there is nobody in the waiting room but us. Then I see many women come out but none go in. We waited for an hour. My DH goes up and asks about the ETA etc.
We finally go in and I see the packet I sent him on his desk. He says something about just getting it. REALLY??? I'm sure he got it a few days ago. I asked him if he read it, he said no. Then he asked me to tell him what's been going on. I asked again if he read my report he said no, just tell me. OMG My heart starts to beat, I turn to my DH and say, "I don't know what to say" At this point I am stunned that he could not take 5 min to read it before I walked in. OMG OMG. OMG. At this point my DH sees my face and jumps in. He asked him to take 5 min to read it now. Which he did.
He reads through it, but at this point I'm not sure how deep bc he gave me the same diagnosis and basically the same treatment plan that he did last year. REALLY????? This makes me think that his treatment plans are more generic than I thought. Maybe he did not read over my report bc he knew what he wanted to recommend no matter what was wrong with me personally.
He said that my main problem is endometriosis and that is causing poor egg quality. He said that Endo also attacks sperm so it cannot fertilize the egg. Of course if I did IVF then he could test this hypothesis and help me out....................OMG REALLY? I had already made it very clear that I was not interested in that.
In fact, he suggested that I stop all the immune treatments and just by some fancy supplements that "are only 60 a bottle". He said that he does not make any money off of them, but it felt like he was making a sales pitch. He also recommended that I take melatonin for my poor eggs. I am not sure about that. I have to do my research first.
He saw one weird thing in my report. There is a test called a LAD and it measures your body's immune reaction to your husband's. We both got our blood drawn and they mix it. I had a good result. He said that since I have never been pregnant I should not have that result. He thinks it means I have some other immune disorder. Then he said there is a new test coming out next month that could give some more info on this LAD mystery.
He also suggested that my DH and I get our HLA matches tested. I had never bothered bc I was already taking neupogen and that is the treatment for matches. So there could be a breakthrough with these new tests or this could all be nothing.
He was much nicer in person than he was on the phone. He did spend almost an hour speaking with us. He answered all of our questions. I am disappointed that he did not take the time to read over my report and really spend some time thinking about how to help me.
After we left, I got thinking about how they would charge me another 350 to go over the test results. My DH came to the rescue again. He asked at the front desk about the charge. Megan, the nice woman at the front told him that it would be covered bc he would just call me quickly to read the result. My DH asked them to put it in writing and she did!!!! Then she said to call asap to make an apt bc they are already booking for June. Even though it was a major hassle to drive down there with the traffic and pouring rain I am much happier with my service in person.
I am not sure what to do. I don't agree with stopping the immune treatments and just taking supplements. If it was just poor egg quality I think I would have gotten pg at least once in 5 years. Once I left, I felt so defeated and wanted to just cry and give up. He made it sound like the endo was a death sentence to my eggs. I had a long car ride home to think it over. I guess I have to wait and see what these next two tests reveal.
Saturday, January 14, 2012
What a Great Day!
Yesterday I had a great day!
I woke up and had a pos OPK. I love seeing those two blue lines bc they might just be the only ones I ever see. It is also a reassurance that part of my system is working. This happened on CD15 which is great. That is back to my usual. Last month it was much later due to stress. I took my trigger.
Later on that day my dr's office called and made an apt for next week. I was happy to hear back and have something written down. It was Friday, dress down day, and a pay day, so that just made it even better.
My work situation continues to improve. My boss gave me a compliment on something I did. I had to work on something with the teachers that I had an issue with in Sept. I did a great job collaborating and then I came up with a great idea and everyone loved it. I was so happy to hear that. I enjoy working there and I want to be able to move forward.
After school I was just cleaning my room when my cell phone rings and it was my napro Dr. =) I told him that I just made an apt to talk with him next week. =) He is so great. I love the compassion and positive energy in his voice. We spoke about doing the lap surgery. He said that there is a possibility that if he takes away too much tissue I could go into early menopause. Yikes. At this point I am not willing to risk that. Then we talked about how all my napro stats are great. I mentioned the polyps and how I was worried that they may have come back in the past 3 years. He agreed to do the hysteroscopy and also check my tubes. I am so thrilled. I told him that I need to know that my uterus is in top shape before I get into any more medications. The dr that did the last one 3 years ago was not napro so I am excited to have my napro surgeon get a good look and give me his expert opinion.
We also spoke about using nsaids to calm down inflammation. I have heard many people talk about using them. I have always avoided them due to my lufs, since nsaids can make it worse. My Dr said that there is some research that a specific nsaid can help with implantation. He suggested that I only use it post peak after the threat of lufs is over. I also have thick blood, so this will thin it also. I did a google search and found an article on piroxicam and implantation rates The
implantation rate was 12.3 vs. 7.7% (p-value = 0.04) and the clinical
pregnancy rate was 25.5 vs. 10% (p-value = 0.015) in the piroxicam vs.
control groups, respectively.
Even though the article is talking about IVF, we can use this information for non ivf too. It mentioned prostaglandins which is something people like me with endo have issues with. It said that they can increase uterine contractions and decrease
receptivity of embryo and nsaids block prostaglandins. I am going to try this after my procedure.
Saturday, March 5, 2011
March is Endometriosis Awareness Month
*Sign the petition to get a stamp made to raise funds to find a cure.
The disease, for which there is no absolute cure, affects nearly 10 million women and girls in the United States alone and another 70 million globally. Endometriosis is a leading cause of female infertility, chronic pelvic pain, immunologic disruption, and pelvic surgery in the United States. In addition, the disease accounts for more than half of the 600,000 hysterectomies performed in the U.S annually.Endometriosis is a reproductive and immunological illness. Mistakenly stigmatized as merely painful periods, Endometriosis is far more than just "killer cramps". It occurs when tissue that lines the uterus is found outside the uterus -- usually in the abdomen on the ovaries, fallopian tubes, and ligaments that support the uterus. It can spread to other organs such as the bladder, liver and intestines. Less commonly they are found in the lung, arm, thigh, diaphragm, and other locations.
This misplaced tissue develops into growths or lesions which respond to the menstrual cycle in the same way that the tissue of the uterine lining does: The blood and tissue shed from endometrial growths has no way of leaving the body. This results in internal bleeding, breakdown of the blood and tissue from the lesions, and inflammation. It can cause pain, infertility, scar tissue formation, adhesions, and bowel problems.
Yet, despite being one of the most highly prevalent and costly diseases of our time, Endometriosis continues to be mistakenly treated as an insignificant, obscure ailment. Awareness is largely lacking among the lay and medical communities alike. Is Endometriosis curable?
There is currently no absolute cure for Endometriosis, but there are several methods of treatment, which may alleviate some of the pain and symptoms associated with it. You can have surgery to cut it out. Make sure that you see a dr who specializes in the removal of endometriosis. Many drs do not go deep enough and then it comes back. A surgeon trained in Napro Technology has expert training in the proper removal of endometriosis.
The amount of pain associated with the disease is not related to the extent or size of the implants. Some women with Endo have no symptoms, others have debilitating pain and even infertility. Some fairly common signs that may lead you to suspect Endo can be found here http://hope2endure.org/endo-faq
How is it diagnosed?
The only way a positive diagnosis of Endo can be made currently is via surgery, either a laparoscopy or the more invasive laparotomy, where biopsies are taken from suspected sites. It can also be visualized during surgery if the surgeon knows what to look for. Ultrasounds, MRIs, CT Scans and other diagnostic tests are not conclusive. The ERC does not support “medical diagnoses,” such as administering GnRH therapy prior to a surgical diagnosis.
The only way a positive diagnosis of Endo can be made currently is via surgery, either a laparoscopy or the more invasive laparotomy, where biopsies are taken from suspected sites. It can also be visualized during surgery if the surgeon knows what to look for. Ultrasounds, MRIs, CT Scans and other diagnostic tests are not conclusive. The ERC does not support “medical diagnoses,” such as administering GnRH therapy prior to a surgical diagnosis.
Why does endometriosis cause infertility?
Some women also have an immune response that will cause infertility. This can cause implantation failure and poor egg quality. You will need to see a reproductive immunologist to get tested and treated.
There is no current manner of preventing Endometriosis, and it is not a disease which is “contracted” or “caused” by anything the patient did – nor is it contagious. It is, however, highly suspected to be genetic.
http://www.theendoclub.com/theendodiet.htm
http://relieveendometriosis.com/foods-to-avoid-on-an-endometriosis-diet/
http://www.endo-resolved.com/order.html
Links:
http://www.endometriosisassn.org/donate_research.html
http://hope2endure.org/
http://www.endofound.org/
http://www.endometriosis.ca/
http://www.endometriosisfoundation.org/
http://en.wikipedia.org/wiki/Endometriosis
http://www.endometriosis.org/
The World Endometriosis Society Produced it's first educational video
*If you have been diagnosed with endometriosis, please consider participating in the research study.
It took me 5 minutes at home.
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