Tuesday, October 22, 2013

Decision Time

Well, I have made up my mind.
I am opting for surgery.  I was open to the idea of having another baby, but maybe my endo is too bad now...because God did not allow that to happen.  Maybe it's the endometriosis, maybe it's just not a good time in our life and His plan.  Either way, I have decided to stay away from medications, the violet petal study, and opt for surgery.

Now to get medical insurance and find a specialist.  Easier said than done.  Endometriosis specialists are HARD to find (if they are not already on the resource list that I have).  I'm not completely sold, but I have found one about 40 min from where we live right now.  I am hopeful, but wary that my case may be more than this doctor will want to deal with.

After much reading, pain journaling, and paying attention to every pain and pattern...I am pretty sure I have endo in my pelvis (already knew that one), diaphragm, hips, and possibly even my lungs.  I did not want to have to admit it, but at least if I am wrong, I'll be happy!  :)

Anyone else struggling with endo and not have insurance?  After browsing some other medical issues over time, I have seen that it's a huge problem on medical message boards.  I know many of them are full of ignorant advice, but I think the worst is when someone just flat out says, "Go see your doctor immediately!".  Well, not all of us have the luxury of having a doctor or insurance, and the emergency room won't do anyone with endo any good!  You'll get sent home with a referral to someone you cannot go to, a $500 bill for the visit, and some close to over-the-counter pain medication that won't do much other than take the edge off of your pain for an hour or two.

The search continues for me - where are you in your journey with endo?

Friday, September 13, 2013

An Update




Well, it's back to the grind stone again.
I have been away and busy with "life" -- closing other blogs, raising children, moving several times, changing jobs....and oh yes, battling with Endo!

Yes, it's back and worse than before.
The Marina was taken out due to multiple infections and other side effects.

I started a pain journal on my phone (My Pain Diary), which has been very helpful in seeing patterns and tracks not only pain, but anything else you want to track as well.  Through this and time, I know that my endometriosis is back with vengence and is worse than before.  YES!  :)  Many of you can relate to this I am sure.

My resolve? I have settled on several options.  Which one will I deside on?  I'm not sure yet.  But none-the-less, here they are.

1. Pregnancy!  
*Not my favorite option due to the fact that all 3 of my pregnancies were HARD and 6 months of vomiting are not exactly appealing either.*

2. Radical Surgery (they remove ALL endo down to the roots, so it does not return)
*Costly (among other issues) b/c most of the docs who do this are not covered under insurances or are out of network and also travel costs b/c there are not many of them.*

3. Violet Petal Study  (Which I was invited to apply for)
* Pretty much decided against this one already from the reading I have done on the study and about the views many of the specialists have on the subject of medication - a last ditch possibility for me.*

We have one more move until I can finalize my decision.

Any thoughts out there?