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 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.


Jeanne said...

Oh honey!

Where to start... It's no wonder you are having mixed feelings about your appointment. It sounds like so much info was thrown your way at once.

I would not hesitate to call the office with the questions you had afterwards. You have some serious stuff going on and you have a right to answers!

You might want to try to get past the receptionist to the nurse (if possible) and just explain that you had questions pop up after the appointment that you need answered before the next appt... and could they please clarify XYZ for you.

They may be busy and it may not be an instant answer to your questions BUT you shouldn't have to wait until the next appt either!

As far as the dye allergy... is it ionic contrast you are allergic to? I'm allergic to that and there is a non-ionic one available. I don't know if that is the kind of dye you're allergic to, though. (I had the dye for an IVP -- an xray for kidney stones. The dye made me itch and get a rash so they stopped right away and switched to non-ionic. So I'm not sure that helps...)

I'm glad this doc explained things better than your GYN. Don't be afraid to call them.

At the same time, you catch more flies with honey than vinegar (is that how the saying goes??)

So, what I mean is that you may need to kiss their you-know-whats if you want their help with answers... even if it is their job!

I have learned that I need to be super-nice when I call doctors' offices... even if I'm annoyed with them or something.

After all, they are the gatekeepers of the information. So I have to mind my Ps and Qs.

Patients shouldn't have to do this walking on eggshells, of course. After all, we are the consumers and the doctors are providing a service.

However, you and I both know that they don't look at it that way. You know what I mean?

Hang in there!


Amanda said...

Oh I'm sorry to hear that your appointment showed up so many things and that you've got so much to "look forward" to - especially around the Christmas period.

I'll be thinking of you lots and hoping everything goes well for you.

Anonymous said...

thanks for stopping by! sounds like you're endometriosis is pretty serious, as you probably know from reading my blog, i had surgery a week ago today. i was stage 3 out of 4. i also had 2 cysts removed.
i'm sending positive thoughts your way, good luck!

Stacy Eskew said...

I'm so sorry you have to go through all this Allison. My heart breaks for you. Please let me know if there's anything I can do to make it easier - I was thinking since the whole pregnancy thing was so easy I could be a surrogate mother, but turns out that may not be such a good idea...Anyways, if you need someone to celebrate or cry with you let me know. I love you, woman!