I am 35 years old, living with stage IV Endometriosis, possibly adenomyosis and struggled with infertility for almost 4 years. I also struggled with PPD and now struggle with PMDD. I am a mother to a son that was born at 18 weeks and too precious for this earth; and now a mother to a son born in August 2011. By journaling here, I hope to benefit both for myself and for others that are dealing with this disease and fertility struggles. Thanks for visiting!

Tuesday, December 30, 2008

Yeah, no test today...

It's a really, long, exhausting story. Basically, they (the clinic) dropped the ball...big time! I got a call Monday morning that the Dr. that was going to do the exam was refusing to do it because of my allergy. Yep, that's right! I talked to that office at least 6-7 times about pre-meds...and I still got canceled on. There is a lot more to the story-A LOT. I was so angry yesterday. I typed up everything that I am going to say (so I don't lose my train of thought), and I'm waiting on a call back from the office manager. She'll be back in the office on Friday. Here are all the questions I have:
  • Why weren’t my concerns/questions answered earlier?!?
  • Why did the Dr. cancel on MONDAY, the day before my procedure? Did he not know previously about the allergy? Why not? I definitely called enough times…why was this not communicated to him
  • Are there not standing orders/a protocol for what to do with patients with contrast allergies? I know our clinic does…
  • Why didn’t my Dr. write an order? It was discussed with him and his nurse (did she not communicate with him) at least 3 times before he went OOT? There were 28 days between my apt with my Dr. and the procedure…plenty of time to clear up confusions (or plan an alternative plan) long before the day before!
  • Because of the mix up, I now have to
    • wait another month for my procedure, prolonging my anxieties
    • pay some out of pocket-our insurance in 2008 would have covered the entire procedure
  • Now I am concerned about the procedure itself-
    • One Dr. seems very concerned…to the point he refused to do the procedure
    • Why the discrepancy? Is this really safe? Nurse said that the Dr. wasn’t willing to do it because of the allergy and that “this could kill me” (yes, she REALLY said that-wtf?!)
  • Is Femara+Trigger shot SAFE with not knowing for sure that my tubes are/are not blocked (esp with my endo)?

Wednesday, December 24, 2008

May the fun begin

I started my Femara yesterday. I had some bloodwork and an ultrasound done on Tuesday. My cyst has grown another cm since last time...now it's 3.6*3.5. Lovely. But, we are forging ahead with the plan. We'll see how it goes! Here's the Femara protocol:

Femara, 2 a day for 5 days
On Tuesday (Dec 30th) I'm having an HSG exam (flushing of my tubes to see if they are blocked)
On Friday (Jan 2) I'll go in to have more bloodwork and a US
Then, they'll let me know when to take my trigger shot (forgot the name of it)
After the trigger shot we'll have timed intercourse (TI) and, have our 2WW!

Yada yada yada..

Aside from the HSG exam, this is what the next two months are looking like. I am VERY nervous about my exam on Tuesday-especially because of my allergies to the IV contrast. They are supposed to give me pre-medications, but, I haven't heard about anything being called in. I guess I'll have to get on to them on Monday. I hope that's long enough for pre-medications to work!

Hope everyone is having a wonderful Christmas!!!

Saturday, December 20, 2008

Here comes the...

Pain, do-be-do-be. Yappers-here comes another cycle full circle. I haven't been feeling too well today-I just have the "icks"-today and yesterday really. Lots of nausea and fullness. Still haven't started my "flow" (as the RE termed it) to call to schedule my testing. Maybe it'll happen so I can get in by Tuesday before I leave town. Debating on whether I should go ahead and start my ibuprofen regimen to ward off any crazy cramps too...

Speaking of the RE, lots of ponderings this weekend. I'm a little upset there wasn't more explanation when we were there on our last visit. When he spoke of the Femara (Letrozole), my husband and I just thought I'd be taking a pill and we'd be continuing things as usual with it's assistance. When I (FINALLY) got someone from the clinic to call me back about my scheduling question, she started talking about all these appointments for ultrasounds and blood work and then something about trigger shots. Um, okay, that's a lot of missed information there!!! I thought maybe I just missed all of that because of being overwhelmed with the news about my uterus and endometrioma...but, my hubby said he didn't remember any of that either. I mean, I don't think this new information will change my mind about what we are doing...but, I really feel someone needs to sit us down and go over all of this!!!! When I go in for my tests, I will be letting them know I need to have someone lay it all out!

Then, are insurance heartaches. Out with the old....in with the new after the first of the year. Our insurance is changing because my husband's company switched providers. So, we are going from no worries, 100% coverage to a $10K LIFETIME max. Um, that's not a whole lot of money in the medical world! So, now we also need to set up time with the financial counselors at the clinic. Then, we really need to sit down and have a heart to heart about how far we are willing to go with all of this. I've been warned it can become an obsession...I can definitely see that. So, we need to be realistic with ourselves.

Please continue to pray for my friend. She got word that her endo was pretty extensive-on her bowel and bladder...and they want her to start treatments soon. She'll still recovering from her surgery and could really use some good thoughts her way :)

Wednesday, December 17, 2008

Hello-testing, 1, 2, 3

Hey everyone! Sorry I've been so MIA-'tis the season, right? It's been a little chaotic around here!

I've been feeling pretty good. Random breakthrough pains, and, some breathing issues. I am having a normal charting cycle this month-big sigh of relief there. I'm even having symptoms I haven't had in a while (breast tenderness, PMS, etc). Which, I'm not sure if that's a good or bad thing. Haha. I haven't had those in FOREVER...I also haven't had the bitchin' cramps in a while either. Wondering if everything is just now, finally, getting back into the swing from Lupron? We'll find out next week I suppose. Merry Christmas to me. ;)

I called the RE's office today with some of my questions and to get some logistical assistance. My Day1, when I'm supposed to call and go in on Day 2 or 3, will fall next week sometime I think. I'm going to be OOT Tues-Sun, so, I am hoping they can write some orders I can take anywhere to do. I THINK they are just blood tests...right?!?

So, just wanted to check in. I'm still here!

Also, please pray for a friend of mine that had a laparoscopy today. She had suspected endo and a mass on her ovary. I haven't heard much, but, it was a little worse than they had suspected (I'm guessing the endo); but, they were able to take care of everything without the full laparotomy. :) She has had painful periods ever since I can remember; I just know she'll be so thankful to have had this done today.

Sunday, December 7, 2008

OUCH, where did that come from?

I've had several STABing (I mean, BAM) pains in the lower left area of my pelvis this weekend. Then, tonight I had one right below my diaphragm-like, between where my diaphragm and ovary pains usually are on the right side. That, plus the diaphragm pains (longer this month than usual, but, maybe not as intense)...it's been a little different! I did exercise on Weds night and Sat morning, and, I've been non-stop all weekend. This week won't be much different as fas as being busy either. Hopefully things will calm down with the random pains, but, I can't help to think this is just the beginning. I will keep a positive outlook though-so sense in being icky about a what if.

So, how big can an endometrioma get before you have surgery? Aren't they worried about it rupturing? MORE questions I am pondering...making a list for the RE!

Tuesday, December 2, 2008

RE Appointment Today

My appointment. Hmmmm. It kinda sucked, but, it was good too. Is that possible? The plan is to come in next cycle and test at Day 2-I have to call at Day 1. I was thinking about it though...what if that is Christmas?!?!?! I'm going to be OOT! Anyway, he wants me to start Femara next cycle too-it's an off label use for enhancing my eggs? Wes is going in for tests...he can go anytime as long as there is abstinence 3 days prior. The reason he wants to be so "aggressive" with trying to get us pregnant is because of the nature of my disease...and he'd like to avoid surgery as long as possible because every time they work on an ovary it compromises it.

So, then the kinda okay to worse news...I had an US-and I have a 3.5x2.5 CM on my right ovary (again). If it gets bigger, too big, they'll have to operate again. As long as it doesn't get too big and I'm not dying from pain...it'll be okay there for right now. I'm producing good follicles (I had 11 on the right ovary?). BUT, again, bad news-my ovaries are BOTH glued to my uterus. They aren't supposed to be like that-they are supposed to be floating around freely with space between the ovaries to the uterus. AND, the ovaries are TOUCHING one another from the adhesions too. Great. He said that could be a big problem in the eggs moving from the ovary to the tube to get fertilized. THEN, there is the issue of needing to get my tubes flushed. That needs to happen on days 7-10 of the cycle (which is now, but he's booked-damn)-so, next cycle. The unfortunate thing is that they need to use a similar dye to which I am allergic to. So, I'll be pumped up on steroids and benedryl a few days prior. That part makes me nervous!!!!

So, there ya go. Now that I'm thinking about it, I'm kinda confused. I wonder now that he say my egg count...does he still want me on Femara? Or, are we thinking IVF? towards the end of the appt he said that IVF might be best because of how everything is laid out-and since I'm producing a good many eggs, they'll be easy to get enough to use...

Ugh, I hate when you have questions afterwards.

I almost started crying when he said I had another 'oma (tumor). :( I don't want it back!!!!!!!!! It wasn't there last time they looked (May). But, he's very optimistic, and, it was nice to talk with someone who was really explaining the endo more than I feel my GYN does.