Another big delay in updating, I am sorry :( I know. Recovery over the last month has been slow going to say the least. I have been incredibly fatigued and not sleeping well at all. For example I have slept about 8 hours in the past week. Yikes! I have also been having sharp shooting pelvic pains in the morning from about 5am-8am. Yesterday I suddenly had severe cramps for no apparent reason and nearly passed out at a gas station. Yes, the last 6 weeks have been pretty hard on me. I try not to complain and just get on with it, but it is hard. I certainly wasn't expecting to be needing to take Percocet 6 weeks or so post op or prescription sleeping pills just to get a few hours of sleep.
I saw my endo specialist last week, and she said it is normal to experience a lot of fatigue and shooting pains or a while after such a big surgery. She said to keep taking it easy and allow myself to heal. Pushing myself too hard will just slow healing down and will do more harm than good. The biopsies all ended up being endo, which was no surprise.
I have also enrolled in a genetic endometriosis study. All it involves is a phone interview, your operative and biopsy reports and a saliva sample. If you have been surgically diagnosed with endometriosis, check out this link: http://www.endtoendo.com/End_to_Endo/Endometriosis_Research_Study_End_to_Endometriosis.html
You never know, a little of your spit might go a long way in helping medicine treat endo more effectively, or better yet cure it! I have also been ruthlessly editing the wiki article on endo, lol and raising some very interesting points about Sampson's theory and general medical attitudes of doctors in the forums at www.obgyn.net. Another study I found of interest found biopsy confirmed endo in 4/36 female fetuses at necropsy. http://www.ncbi.nlm.nih.gov/pubmed/19358700?ordinalpos=2&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum
I have been on a bit of an endo awareness/accuracy kick lately. I go through my spurts of generalized frustration and disgust on how little doctors know about endo even though the information is there, and how ALL the MANY MANY myths continue to circulate.
Many pain free days! xox
Showing posts with label Awareness. Show all posts
Showing posts with label Awareness. Show all posts
Thursday, May 7, 2009
Sunday, March 1, 2009
Yellow Shirt Day 2009
Tomorrow, Monday March 2 2009 is Yellow Shirt Day 2009. What is Yellow Shirt Day? It is an international effort to draw awareness about endo, give accurate information to the public and medical community, show support for your loved ones who suffer from the disease and to find a cure. It is absolutely unacceptable that the average woman with endo suffers for 9 YEARS before an accurate diagnosis is made. For a disease that affects an estimated 5-10% of cycling women, even 9 weeks is an unacceptable diagnosis delay. It shouldn't be that hard.
My other biggest peeve is that about 98% of gyns have absolutely no idea how to treat endo. They laser or cauterize the few lesions they can recognize and balk at you and prescribe even more hormones when you are back in pain 1 month later because they didn't remove all of the disease.
***To all the doctors out there and all current and future endo patients: Endometriosis can only be diagnosed with an EXCISION and a BIOPSY of the disease. Laser and cautery do not allow for biopsy, nor do they destroy the entire lesion, just the surface which leaves the "roots" in tact. Hence the disease is not treated. Lupron and Danazol are clearly not the answer. Sampson's theory is the biggest load of bullshit I have ever heard. Hysterectomy and pregnancy are not cures nor viable "treatments". Cramps and menstrual pain are not normal. They are common, but so is type II diabetes. Common and normal are two very different things. If you know something is wrong and doctors keep brushing you off, don't give up! There are endo specialists out there who can help you without injecting you with scary hormones or pressuring you into a hysterectomy that you don't need and won't help. Don't give up!***
OK, I am done ranting for now. I have a bit of passion on the subject :)
I am wearing yellow tomorrow. The question is, are you?
My other biggest peeve is that about 98% of gyns have absolutely no idea how to treat endo. They laser or cauterize the few lesions they can recognize and balk at you and prescribe even more hormones when you are back in pain 1 month later because they didn't remove all of the disease.
***To all the doctors out there and all current and future endo patients: Endometriosis can only be diagnosed with an EXCISION and a BIOPSY of the disease. Laser and cautery do not allow for biopsy, nor do they destroy the entire lesion, just the surface which leaves the "roots" in tact. Hence the disease is not treated. Lupron and Danazol are clearly not the answer. Sampson's theory is the biggest load of bullshit I have ever heard. Hysterectomy and pregnancy are not cures nor viable "treatments". Cramps and menstrual pain are not normal. They are common, but so is type II diabetes. Common and normal are two very different things. If you know something is wrong and doctors keep brushing you off, don't give up! There are endo specialists out there who can help you without injecting you with scary hormones or pressuring you into a hysterectomy that you don't need and won't help. Don't give up!***
OK, I am done ranting for now. I have a bit of passion on the subject :)
I am wearing yellow tomorrow. The question is, are you?
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