Interesting story, at least it is for me. I woke up this morning cramping and so of course I had to post something about it on Facebook. My post, "Yesterday was a good day, today is starting to be a painful one. Guess it was too much to hope that 2014 would be pain free. Oh well. I am happy with the life I have and looking forward to what this year is going to bring."
My Aunt asked about my upcoming hysterectomy and if that would make me pain free. I told her that I wished it would, but that it would really only fix one issue, my adenomyosis. Of course I could have said that it will also prevent the endometriomas from forming on my ovaries, and will keep my uterus from becoming attached to my rectum again, but I thought that was a bit much to be posting at 10:30 in the morning. I told her that there was no cure for endometriosis and having a hysterectomy and having my ovaries taken was not going to "fix" me. She then told me something that kind of shocked me. I thought I had heard it all. Nope, I hadn't.
She said, "Well I thought endometriosis feed on the blood supply, so in other words, when you don't menstruate anymore it doesn't have any blood supply to feed off of." Color me shocked. I had not heard that before. I was kind of dumbfounded for a second or two. It was amazing to me that, number one I hadn't heard this before, and number two, that with all the information that is circulating about endometriosis, this is still so misunderstood. I told her that I would find some information, and pass it along, that could explain it better than I could.
After doing lots of research and asking several people for help, I have found quite a few resources with wonderful information. I think it is very important that we start spreading the right information, or at least the information that is more current. It is my goal to get as much information out there as I can, so that maybe we can find a cure someday.
www.endometriosisaustralia.org/ A website that has good explanations and a good Q&A section.
www.endometriosis.org Is another really good website, with tons of explanations. Get explanations of diagnosing, treatments, and the complications that are caused from having this illness. It is a great place to get information and find a physician that specializes in endometriosis.
I think the thing that struck the largest chord with me was a message that was posted by an owner of one of the Endo support groups that I belong to on Facebook. She had posted about ob/gyn's and their lack of education, understanding, or willingness to treat endometriosis. It is very poignant and very true. Most of the misinformation that is "known" about endometriosis, is being passed around by these ob/gyn's. Please read and judge for yourself.
Below is a post made by Nancy Petersen, a nurse that has worked with women that suffer from endometriosis. She has dedicated her life to help us make sure that we have the support and resources to make informed decisions and find true specialists that can help us with our symptoms and fight our disease.
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Recently when I posted on this board that less than 100 out of the 52,000 gyns in the US had been identified as doing effective endometriosis surgery, I heard from a group of gyns who were offended by the comment. Yet as we discussed my comment, what came out were a variety of comments that support my position. They knew of "subtle appearances" and indicated that guided their practice. But some do not operate on colons, bladders, ureters or diaphragms nor did they have consultants to assist with disease in this area. some did not feel removal of mild disease was even warranted. Still some do not operate in the lower pelvis, do not refer for pelvic pt, do not refer for pelvic pain management and despite the signs and symptoms of peritoneal inflammation do not believe in pain medicine to assist with coping of peritoneal quality pain. (bloating, paleness, severe pain, slowed bowel, nausea, restlessness, rebound tenderness or painful pelvic exams). Endo causes peritoneal inflammation and there is not a med student or nursing student on the face of the earth who have not been taught to recognize peritoneal signs and symptoms. Most would treat it aggressively. Some dismiss it as just her period. Try living with appendicitis constantly, or a dozen grains of sand in your eye for a lifetime.
To relieve pain, all disease must be removed. One has to know not only what it looks like, but where it is found. I was surprised to hear so many physicians will see it as a disease of the ovary, but statistically, the ovaries are 7th and 9th in order of frequency of involvement, not first. So knowing where disease is found is a big step toward being effective surgically. Additionally, having either surgical certifications to operate on all areas endo is found, or a stable of consultants able and willing to do so is another huge factor in outcomes. Recognizing endo lies beyond the pelvic cavity is also major.
Today in the support groups nearly every day, I hear from women who have been castrated (total hyst) and yet have endo type symptoms. Yet they are told over and over there is no way endo can be present after a hyst. Yet there are a number of studies that show us endo can and does persist after hyst if it too has not been removed. Too often the hyst was done to treat the endo. (without excision of endo implants elsewhere). There is ample evidence that removing normal tubes, ovaries and uterus does not ease endometriosis pain nor does endo dry up and go away after castration. There are good reasons to do a hyst, but endo is not one of them, and the long term impact of hysterectomy is not offset by estrogen replacement when it comes to bones and heart. (as I understand it).
What women seem to want is compassionate understanding of how severe the pain is, to not be told medical therapy treats endo (we know it doesn't), to not be hysterectomized for endo treatment when removing lesions skillfully works much better. If their doctor cannot do skilled excision surgery, they express a desire for referral for pelvic pt to a certified womens health therapist, and or to a surgeon doing skilled removal of disease.
Pain management may lead to dependence, but rarely abuse, and it often allows women to get up off the couch, put their heating pad away, and get back into life.
When we say we want effective endo surgery, we are looking at a desire for prompt diagnosis, compassionate understanding of the severity of pain, and skilled removal of disease. This comes out in the discussions every day, multiple times a day, and is critical for the industry to begin to understand. Drugs do not treat endo, most of the side effects are unpleasant to say the least, and the altered hormonal states unacceptable to most.
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The link below is where I found this statement at. You will not be able to see the post unless you are subscribed to the group, as it is a private group. I did get permission to share it on this blog.
Nancy Peterson: https://www.facebook.com/groups/418136991574617/permalink/593046580750323/
I have been to many ob/gyn's in the last 20 years (I am getting old), and it still amazes me their lack of empathy or understanding for those of us that are dying a little more with each passing cycle. It still amazes me that the misinformed are the ones that are making it so hard for those of us that are suffering, find the care that we need.
I went on this search for information to better explain this illness to a family member. I wanted to make sure that I did not give out the wrong information. Why can't someone who has a medical degree, has more money than I, and that is supposed to treat people that suffer from this, not have the same fortitude to give out the correct information? Why is it that they are paid well for doing a half ass job? I crochet and get paid next to nothing, yet I still will undo a project 20 times if that ensures that I am getting the job done right. If I see there is one mistake, I undo it and start again. I am dealing with yarn, the ob/gyn's are dealing with people. We have feelings and are living and breathing. We are scared and living, just barely, and looking for answers. Why is it they are paid a lot to do little, while we are paid little to do a lot?
I started this journey looking for answers to share with my family. I am so glad I did. I am glad that this was put in my path today and that I found information that is going to help me, my aunt, and other women that suffer from this illness. Maybe if we all start spreading the right information, then the Dr's will have no choice but do their jobs correctly. If you don't want to take the time to treat your patients, then it is high time you find another job. A Dr's job is all about helping people get better. The oath after all is, "First do no harm." You are harming women if you are not listening to them and helping them get the treatment that they need, for an illness that definitely hurts and harms.💛
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