Imagine if Endometriosis could be detected by a simple blood test. If you could have your answers up to 10 years earlier. If you could know the answer you're looking for so much easier.
I have joined forces with Vinay Singh in hopes to help raise awareness and funding for his research. He has identified a bio marker that could make diagnoses so much easier. A blood test, that's it, no surgery to find out if you have Endometriosis.
As a sufferer of Endometriosis this is exciting news. We can avoid surgery for diagnosis and the use of hormone therapy when you may not need it. We shouldn't have to have surgery to find out you have Endometriosis and then have more surgery to actually treat the Endometriosis. We should not longer have to go through the trial and error process where you try Lupron or Visanne and if that doesn't help then it "must not be Endometriosis" but you don't actually know.
I hope that in working with someone like Vinay Singh we can change the way that we diagnose and find better, more effective treatment for Endometriosis while spreading awareness and changing the way Endometriosis and the people with it are treated.
Please if you can donate to Vinay Singh's go fund me campaign. Anything you can donate is greatly appreciated. Thank you so much!
I started Endometriosis and me as a way to connect women going trough the same struggle. For people to come together to share our stories, share experiences with treatments, and to just support one another no matter what part of their journey they're in. I wanted a safe place where anyone could come and talk about the evil that is Endo.
What started off as a website where I could put together information and blog about my personal journey with Endometriosis. When I realized that the website was attracting attention I decided to start a Facebook page where I could start my social media following. Once the page gained followers and I received messages from ladies asking questions or looking for a place to talk to others about what they're going through. The Facebook private group was born and is growing daily.
I am working to update the website with better information and a better layout. The Facebook page has grown to over 45,000 likes and the private group over 6,000! I have been working on multiple logos and shirt styles to get the clothing line started. I can see so much for the future of Endometriosis and me and all our members!
Felt like crap yesterday so I spent the day on the couch. It was my boyfriends Friday so he got some beers and brought me home some vodka coolers. I already was feeling like poo so I didn't drink any. Well don't I just wake up to feel like I did drink. Bloated, in pain and a tummy ache I go to go for a pee and the dog has torn up the toilet paper roll. In agony I kneel down to pick up all the shreds after I struggle to get Roman in the cage. Finally, I get to the bathroom and more than pee if you know what I mean. I get back to bed with my heating pad on and pass out for a couple more hours.
Awoken by stabbing pains in both ovaries, the feeling of contracting in the uterus I no longer have and a tummy ache I go to the bathroom to take a hot shower. The hot water feel good but standing is a struggle so I sit in the shower and let the hot water run over my pelvis for an unknown amount of time. After I feel I have wasted enough water I change in over to a bath and try to relax my body in the warm water until my body falls asleep. I get out and more than pee again ( wink wink) but when I flush the toilet nothing happens, try to flush again and water fills the bowl. Fuck. Get the plunger from under the sink. Plung plung plung. No movement. ugh. Ok take a break and come back to it. I sit down on the couch and wait for my meds to kick in to go back and tackle the situation. While I'm trying to chill out a bit the dog starts vomiting. Great, clean that up and go back in to the bathroom to check if it has drained at all (noting I pour Draino in also). No movement! Why!? I try again to use the plunger and nothing. By now my boyfriend woke up and I told him what happened. We make a plan to go to the Canadian Tire to get a better plunger. Come back and still the bowl is full. Use the new plunger for what seems like a year and finally the damn thing drains! Back aching and abdomen burning I relax for a little bit then go to write this blog post and after I press post it only posts the first sentences. So, yes, this is my second time writing this. Please no more today. I can't take it.
I feel like I want to cry over everything right now! I put the damn laundry card down and a second later it's gone no where to be found!? I look everywhere for the damn thing and it's no where. I feel like I'm going crazy and everyday some other shit storm starts and I have to deal with it. I have haven't learned anything else from having Endometriosis the one thing I have learned is that relationships are hard! Having to manage your illness, feeling like shit, trying to get through the day and then you have to deal with what ever your spouse puts on you. I feel like I haven't been myself in a long time, I feel like pain and Endometriosis are consuming, I can't do thing I used to be able to and be as active in life and friendships as I like to be! I sit or lay in pain and feel sorry for myself because I'm so tired and sore! I miss being young and energetic.
Today I make a change, I will not longer apologize for feeling ill. I won't feel sorry for saying no. It's too hard and not logical to please everyone. I need to make sure I am happy first, I need to feel good before I can make anyone else feel good. I so badly want to have success in every relationships but sometimes you need to be selfish and do what's right for you. Not everything is going to work out as much as we'd like it too.
I have to learn to communicate how I feel better. I get some emotional and mixed up in my feelings that I just end up crying. Does the Endometriosis make me more emotional or am I just emotional.
So I know that I haven't posted in a while but I haven't been feeling the best, I started a new medication called pregabalin (https://www.drugs.com/cdi/pregabalin.html). I have actually noticed a little bit of a difference, I have a little more energy and am a little less achy. I m still working on the Youtube channel and am currently working on a information video answering a lot of question I get from ladies all the time. I just posted a quick update on Youtube. I am working on getting some "Endometriosis and me" T-shirts out as a lot of ladies showed interest in them. I'm thinking I will need to take pre-orders as I am so broke right now. I will be showing the designs sometime very soon! I am so excited that the facebook page is growing so quickly! The facebook group is growing pretty steadily as well. I haven't worked on my book in a while but I still want to have a book of my own out at some point. I am excited for the future of Endometriosis and me!
First off, I really need to start blogging more often. Okay, I went to my primary doctor today to have a check up and to take about my pain levels. I have been feeling like crap and my body aches. My doctors office is a learning office so usually I see residents which is fine but it becomes frustrating having to tell your story every time the residents switch out.
We change my pain medication from T3s to a long acting and a short acting morphine. Well see how it goes. Then I ask about my referral back to the gyno that did my first surgery to diagnose me and the resident says "it says here that she declined you as a patient as there is no more options for treatment, didn't anyone tell you?" No one told me but thanks for the information... I then tell her to put in a referral to find me someone who will take me on and is comfortable treating Endometriosis. I'm not done trying here but apparently my gyno is.
Next, we talk about more referrals including a chronic pain group, pelvic floor therapy, chronic pain clinic, cognitive behavioral therapy and meeting with a social worker. I'm h
Went to see my family doctor this morning and told her my concerns about my increasing pain. I am being sent to a new gyno with the possibility for a third operation. I requested a spot in a chronic illness work shop and am going to atempt pelvic floor therapy. I will be going back to my chronic pain doctor and will start getting cores
I feel like I've been hit by a truck! Everything hurts. The last week I have been feeling so crampy and sore. My pelvis and back have been so tight and stiff, feels like someone is squeezing my ovaries and spine in their fist. I have hardly been able to get anything done, the house work is building up and I need to start packing up to move back to my home town. I have been feeling utterly exhausted! Yesterday I slept 16 hours and still feel like I haven't slept. My brain feels foggy and I feel like I can hardly function. I still feel guilty that I am unable to attend my friends wedding but I can barely get the energy to get out of bed. I think I could sleep for a week!
"What’s the difference between normal menstrual cramps and abnormal ones? How does one measure pain?
As many of you may know Endometriosis keeps us from doing the things we want to do. With extreme pain come anxiety. Yesterday I had to let a good friend down and tell her I couldn't fly across the country to be a bridesmaid in her wedding. I feel like a complete ass hole and no I am for telling her with short notice but I am so overwhelmed with pain in my whole body and so anxious I feel as though my heart my pump out of my chest and my stomach is going to fall out my butt. Making me feel worse yet she said I ruined her wedding, I feel horrible f***ing up her big day but I can hardly function right now. The pain in my back and stomach is so bad that I can't find a comfortable position in bed and am stuck tossing and turning all night. I feel like a complete emotional wreck right now, my mind feeling like it's going a million miles a minute and it won't slow down. Unfortunately I felt that my plate was too full and something needed to be removed. Stress, anxiety and depression is no joke, it can feel so crippling that make even the fun things in life nearly unbearable. How was I to get on a plane alone for the first time when my hand won't stop shaking and my heart is going to explode? I understand it is hard and also very frustrating to deal with someone with chronic illness, we are "flaky", we can't be "normal", or we are "never there for them". But, what needs to be understood is that we do want to be there, be normal and enjoy all the things in life. We are in pain daily and exhausted most of the time and sometimes just flat out can't do it. Knowing your limits and living within them is a hard task and will take time to figure out.
It's called Phantom Uterus. Much like when someone loses a limb but still feels the pain like it's still there. I still experience monthly cycle, it feels like I still have my period even though I no longer have the parts it take.