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?

Thursday, April 28, 2011

Eating for Endo: Why to go organic

Why eat organic?

So you don't consume..
growth hormones
GMO (genetically modified) ingredients
artificial colorings
artificial flavorings

When you buy organic, you won't get ANY of those things!  Some highly common foods that are or contain GMOs are: tomatoes, corn, orange peppers, soy, and seedless melons.  Why are GMOs so bad for you?  Well, they are genetically manipulated.  A GMO is created when a gene from one kind of organism (eg: fish, bacteria, etc.) is transmitted to a completely unrelated species (eg: tomato).  There are many other reasons to not eat GMOs, but the fact is...they are not good for your body or the soil...so avoid eating them!

The endo diet's backbone is to reduce the estrogen level entering your body via food.  Endo feeds on estrogen, so if you don't feed it...it will starve.  Apart from the actual food and its make-up, there are external forms of estrogen, called xenoestrogen, from the environment that has a molecular structure similar and behaves like estrogen once inside the body.  To avoid xenoestrogen, buy as much of your food products organic or free from the above italicized list, and throw away all...

chemical cleaning products
pesticides, herbicides, and fungicides
cosmetics containing talc and other toxic ingredients
nail polish/remover
soaps/shampoos/toothpaste containing SLS (sodium lauryl sulfate) and SLES (sodium laureth sulfate) This includes all soaps (dish, fabric, etc.)
fabric softener (uses high doses of phthalates)
perfumes and lotions (loaded with phthalates and petrochemicals)
tampons/pads that have been bleached (they contain dioxin)

Ok, so maybe this is turning into something bigger than you first thought...it is.  I ended up throwing away a lot of products when I first "did the switch".  It took a lot of talking to my husband and research, but it's all here on the web for you - check out the links I placed above.  It might take your breath away, so beware!  I have gone on to find many many amazing products to replace those that I threw away.  Products free from all that "stuff".  And guess what?  I love them more than the ones I started with!  YES!  A win - win situation.  :-)  Next post on this will be what products to look for.  Keep your eyes open at your regular grocery store; there are so many to chose from and the demand is higher than ever, so more stores have their own brand name organic products as well!  

Happy cleaning!

Tuesday, April 26, 2011

Keeping a Journal

One of the best ways to help you and your doctor diagnose and treat endo is by keeping a journal.  Here are some things they may be looking for when diagnosing you...

Is you pain chronic, having occurred for _____ days/months/years to date?

Or, is pain acute, having begun on _____ (approximate date)?

Are you still experiencing symptom(s) at this time? _____ yes / _____ no

Have you experienced any of the following?

chronic or intermittent pelvic pain / painful menstruation / infertility / miscarriage / ectopic (tubal) pregnancy / IBS-type symptoms-abdominal cramping, bloating, diarrhea, constipation, painful bowel movements, sharp gas pains / dyspareunia (pain associated with sexual intercourse / vaginal pain / backache / leg pain / blood in stool / rectal bleeding / tailbone pain / blood in urine / tenderness around kidneys / painful or burning urination / flank pain radiating toward the groin / urinary frequency, retention or urgency / hypertension / hypotension / coughing up of bloody sputum / constricting chest pain and/or shoulder pain / shortness of breath and/or deep chest pain

Write them down on the date they occurred.  Start your journal today if you haven't already.  It's the best way to keep track of what is going on in your body.  Let's just face it, life gets crazy and busy, and we forget dates and specifics that might be a key to your diagnosis or stopping a certain medication.  

Other things to include would be words that best describe your pain:

dull ache / itching / cramping /constricting / burning / stabbing / nagging / pinching / shooting / throbbing

And pain intensity:

1-mild, 2-moderate, 3-distressing, 4-horrible, 5-unbearable

Other ideas to get you writing are:
How much pain do you have on an average day?

How often do you have the pain?
Is there any time of day that the pain is worse?
Do any activities set your pain off?
Does the pain come and go?
What helps alleviate the pain?
How upsetting and disrupting is the pain to you?
What do you believe causes the pain?
Does pain interfere with your personal routine?

Now that I am being treated for endo, I have started another journal documenting any changes in:

weight, mood, appetite, skin (oily, dry, ect), libido, pain (the above descriptions and duration apply to this), and any other symptoms I may notice.


Have you kept a journal for endo (either for diagnosis or treatment)?  
What was your experience and was it helpful?