I have decided to dedicate more time to the website and I have started to write a book about my experience and knowledge with the disease. I hope to bring awareness and information with a splash of my story and journey in the book. I have been working on myself on the inside by trying to figure out where I fit in the world. I know so many woman have this disease but there is little information or educational material about the subject.
The specialist in Ottawa told me he doesn't want to operate to remove my ovaries. He feels as though in doing this I will be at risk for greater problems such as heart, bone and brain health. I'm not sure how to feel. I go in there with my mind made up and know what I want and they make me change my mind and confusing me. I just feel so tired of going around in circles with this disease. I'm feeling as though I'm at a stand still and I'm not sure what my next move should be. They told me my options, basically being the same as I posted last, stay on the current meds and do nothing, double up on the Visanne, go on lupron with add back hormone therapy which they said would basically be the same feeling as actual menopause, after trying both of these too medical trials they will review the process and think about surgery( removal of the ovaries or possible endo removal). I have decided that I will begin with doubling the Visanne, taking 4mg of progesterone.
Luckily, I have just been approved for two more years on disability for a totally for 4 years.
Good evening everyone, I haven't written in a while, meaning I've been busy with live happening but I have decided to write an update being it's the beginning of Endo Awareness Month. So, I had my partial hysterectomy and feeling better for a few months to follow I find myself back in the same situation I was in before, pain and off work. My options the same as before, do the same thing as now, try Lupron, or surgery to remove the remaining lady parts, my ovaries. So ovaries it is as Lupron made me sick and intolerable and I can't contiune doing the same thing as that is the definition of insanity.
So looks like my surgery is scheduled for December 20, 2013. So it's earlier than it was supposed to be! Finally something to work toward! Been feeling very anxious! It feels like it's coming up fast but not fast enough at the same time! They don't know what they're dealing with until they're inside. So I'll be waking up into a mystery. That's the scariest part, I have no way to prepare myself...
On June 24 2013, I went to Ottawa to meet with the general surgeon who will be preforming my bowel resection. He had poor bedside matter and I didn`t feel comfortable with him.
An hour later I met with my gyno and he said that they would be moving my surgery to Spring 2014. This is the third time that my surgery has been pushed back. It`s really discouraging because I`ve now been off of work for over a year and now I will be off work for another year. When I go back to work after over 2 years am I going to remember how to do my job...
So, the surgery that was to be this spring is now going to been fall 2013.
November 1 was my surgery consult. They have agreed to give me the hysterectomy that I asked my local doctor for but she had said that she wouldn't even consider it until I was 35. They will also be doing a bowel resection, look for and remove all the endo they see, and check my kidneys and bladder.
They have added two new drugs (Celebrex and Relivia). The sleeping pills that I was already on were doubled.
My action plan is to follow:
1. Take my visanne in the night instead of the morning
2. Increase Amitriptyline to 100mg.
3. Add long acting tramadol (Raliva)
4. See general surgeon for consult about bowel resection
5. Continue to work on diet/exercise (lost nearly 50 pounds)
6. Add Vitamin D
7. Add Vitamin C
8. Add calcium and magnesium
9. Pelvic physiotherapy (really don't think I'm going to do this)
11. Cognitive Behavioral Therapy
12. Stress management
Sorry, it's been awhile. Been taking a bit of a break. So to update recent events I've been in a lot of pain lately. But, I'm still trying to stay strong!
About three weeks I got in to see the only pain specialist in town due to a cancellation. Lucky! Apparently the waiting list is over 2 years, ouch. So, we discussed my types of pain which is pretty much my whole body but mostly back and pelvic pain. He poked around, asked questions and got very personal (yes, internal exam, think I'm actually getting used to it). He decided to do some injections for muscle tension. These shot included 0.5% Lidocaine, 0.25% Bupidacene (it's very hard to read my doctors writing, so correct me if I'm wrong). My first appointment I received 2 shots in the vagina and 6 shots in my back. The second appointment I got 6 more in my back. Seems like my back feels looser, if that makes sense.
Tomorrow is my surgery conslutation for the bowel resection, it's finally here. It feels more reall
Something to read: http://apps.facebook.com/theguardian/society/2004/jun/07/health.genderissues?post_gdp=true
Something to listen to: http://www.youtube.com/watch?v=iS8sqgBgzG8
Read this article the other day and it's got me a little shaken up.