So I published my first endometriosis awareness video and it has gotten over 1000 views in just over 24 hours! You guys are amazing. Please continue to share it (can be found on the home page, twitter, and facebook). My goal for the video is that it will help people understand that battle that we, as a community, deal with everyday-not just from our physical illness, but the lack of compassion that we receive from others. It is time to take a stand and join together to tell people our story.
We have raised over $400 to donate to the Endo Warriors and EFA through our ongoing t-shirt fundraiser! Thank you all so much for your support throughout the fundraiser.
I have been working on reading more medical studies and projects to continue to learn with all of you about endometriosis.
The EFA did announce a FREE patient day during their Endometriosis Week. It will take place in NY, NY on Saturday, March 8, 2014. I will be in attendance and hope to see you all there! There are various other events during the EFA's Endometriosis Week so please
The EndoMarch will be occurring in various locations worldwide on March 13, 2014. If you are unable to attend there are other ways to get involved via social media. Please don't be left out of this historic event for endometriosis.
So I have just begun pain medications again and am dealing with the side effects as always. I did speak with my doctor and will be seeing a rheumatologist as he is not sure that I do not have a systemic issue going on at the same time with the endometriosis. He drew blood and I will be moving forward with seeking opinions and seeing specialists regarding my condition.
I heard from the CEC and was beyond excited to hear from Dr. Sinervo. He does believe that surgery is needed and that a thorascopy may also be required as my new lung symptoms are problematic and concerning that I may have endometriosis there. My newer symptoms are in combinations with my old symptoms but I am also experiencing weight loss, hair loss, and shoulder, chest, and rib pain. As I was without pain medication for the last few days, I have mostly been quiet. Unfortunately, I have realized that I do need the medications just to be able to get out of bed and function on a daily basis. Without medications I am having pain levels of 10/10 and pain from my neck to my thighs-front and back.
Thank you all for your continued support!
Recently I have been speaking with many women that are attending new consults or second opinions. Previously, I wrote an article discussing the importance of having a narrative to refer to when speaking with your doctor. This is especially important at a consult where you want to be giving and getting as much information as possible (especially since some specialists do not accept all insurances). That being said, an account of your medical history with endometriosis is also incredibly important so be sure to at least have your last operative report and pathology, most recent MRI and/or CT Scan, list of current medications and treatments (including ones you have tried in the past that may or may not have worked), and any other important documents that you have received throughout your history of endometriosis.
One of the hardest things for me is that I never know what to ask or I get overwhelmed and forget to ask the right questions. While each case of endometriosis is different and unique like the individual, these are some general questions to ask that I have compiled from my consults and questions other endo women have told me to be sure to ask:
This week feels like "medical update week" for me at least. I got my second period on Mirena and it was absolute hell (just like last month that landed me in the emergency room). I had the ribs to hips pain and chest pain and a cough this time too. I chose not to go to the emergency room because they do not help much anyway seeing as my CT scans and sonograms are always normal. They just give me pain medicine and discharge me (which honestly at that level of pain do not help me that much). I emailed my surgeon who informed me that he had not heard of Mirena causing this type of pain and did not offer much more information other than that (he is my 3rd appointment this week which will happen on Tuesday so I plan to ask him more questions then). I just know that I do not want the Mirena taken out if there is a chance it will be put back in since getting it in hurt badly.
I have had 2 out of 3 appointments so far and I am so tried and overwhelmed by all the opinions and pain that exams put me through.
I had gone to see a gastroenterologist about six weeks ago. He did not want to perform any tests on me until he had the operative report because he did not want to irritate my bowel endo or end up in an unsafe situation. Unfortunately, I forgot my records (stupid side effects) and so my appointment was somewhat pointless. He did tell me that I am less tender on my new pain medicines so I guess that is a plus, although a small one.
Yesterday, I had an appointment with a surgeon (endo specialist and oncologist) who gave me a few options and spent around two hours with me. He did a full exam and sonogram that caused a lot of pain and bleeding, but he was able to listen to my story. My hair loss is most likely a side effect of the Mirena IUD. He did not seem to have any other answer to that. He also discussed the possibility of Lupron and Mirena or birth control pills and Mirena rather than just one type of hormone treatment because of the pain I am still having with the Mirena daily and with my period. He talked to me about lifestyle modifications (which I am already doing) and discussed the pros and cons to conservative treatment before surgery and the symptoms that could be causing my pain as possibly scar tissue, more endometriosis, adhesions, or something else (based on my chest pain and cough and rib to hip pain when I have my period on Mirena). In terms of surgery he explained that he uses both excision and vaporization to destroy as much endo as possible but also spare the organs involved if he could. He stated that he does go into the bowel if necessary, but surgery is the last resort for him as it is with many other doctors.
The doctor also ran a genetic test based on my saliva. I had not heard of this test and am still attempting to research it. However, he explained that there is a gene that would tell him if I respond to hormone treatments or not. Based off of that test, I have a few weeks to speak with my family and others about the treatment options that he offered me. I do not plan on starting another hormone therapy until I am aware of if my body will respond to it (there are just too many side effects and I am also planning on waiting until I hear back from the CEC and get their opinions).
While I am nervous about the possibility of Lupron (which I always said I would reject as an option) and the possibility that I may not be responding to hormone treatments have me scared and overwhelmed as I know most of the "treatments" to try and control endometriosis growth. I am lucky to have an amazing support system of family and friends and endosisters that are also trying to help me with these decisions. It is so hard always going to the doctor and coming out discouraged or with bad news. I also worry that treatments I agree to or reject in some cases will cause more harm than good. I just hope that I am making the right decisions.
On a good note, the surgeon yesterday took pictures of the front and the back of the Knock Out Endo t-shirt to email to his colleagues and his patients to help the fundraiser! (that was awesome)
Feel strong everyone! Thankfully I have this weekend off from work because all this poking and prodding all week has definitely helped to add to a higher pain level :-/
Bern Bingham: 23 year old endo warrior, founder of Knock Out Endo