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!

Sunday, October 19, 2008

Oh, here I am!

Sorry-it's been a weird few weeks and I just wanted to escape for a little while. So, my weird rib pain; I did go to my new primary, and, she thinks this could definitely be endo related, whether it be an inflammatory response or actual diaphragm involvement. I had a chest Xray which didn't show any fluid build up or lung changes, which is a good thing. I know endo can't really show up on these exams, but, I was glad to hear it wasn't causing any physical changes! She wanted to do an ultrasound then changed her mind to a CT to rule out other causes. I said no to the CT until after I know this cycle was a bust (which, I am thinking it is just because of how I've felt the past week)-and she that was fine. I am going to track my symptoms again next cycle and just go from there.

This past week I've been pretty crampy and off/on nauseated (as usual). The nausea seems a little better some days, which is nice!

I went to my GI on Friday for a FU. He said that he had exhausted the effort that this could be strictly GI (we already knew it wasn't) and wasn't sure what to do. He wants me to keep trying the zofran with my nausea...I may try again. He also gave me a prescription for something to combine with my nexium; thinking at some point I could continue it and stop the nexium.

He also expressed some concern with a possible pregnancy. He said that he appreciated my desire to have a baby, and that a lot of times that symptoms that I am experiencing can get better with pregnancy. But, a lot of times they don't and can worsen. He wants me to stay in touch and if I need anything to give him a call. He also wants me to talk to my RE when (if) we go next month about my colon involvement of endo and what it would mean during a pregnancy, because he just didn't know. I got pretty upset about this conversation...I'm not sure why. These are definitely things I have thought about, but, I dunno-I was just hoping I was being paranoid or something.

So, anyway, we'll see what's going on this cycle sometime this week. I should start my period by the 23rd/24th...we've done all we can do. It's out of our hands at this point and all we can do is hope and pray.

I've also done a lot of thinking about IVF lately too. I am not convinced that I am made for that journey. We will continue to pray about that. I am just not sure I want to go through all the drugs, all the testing...we'll have to re-vsist that when the time comes and in the meantime I want to arm myself with as much knowledge as possible.


ReadyGo said...

Thanks for the comment, it's great to see a new post from you! I've already read your whole blog and it was so crazy to see the similarities between our stories. I, too, hate that anyone else has to deal with this, but it really helps to know that others are making it through- so I have to be able to :)

I'm sorry about your appointment with the GI doc. I understand why that's hard to hear, and I hope you get it figured out with your RE. My GYN wants me to see an RE at some point, but I'm in a weird place not being married yet, so not knowing when I would want to start trying to get pregnant anyway. That's been a hard topic to cover with any GYN- they always want to know when I want to try and when it's not tomorrow- they brush me off.

My diaphragm pain is pretty constant at this point, but I finally noticed that it gets worse a few days before my period and stays that bad until about a week after. So that was the key to them diagnosing it as diaphragmatic endo. But I'm sure it can present in a number of different ways.

I hope your well, and thank you for talking to me! Keep in touch!

Amanda said...

I'm sorry to hear what's been going on of late - I often think that the absolute worst thing about endo is the uncertainty of it all. I hope you get some answers soon and get to know a bit more about what is causing the pain and how a pregnancy might affect you.

517Butterfly said...

Hopefully you'll receive good news by the end of the week so you won't even have to think about IVF! It seems like you got some great doctors that you are working with so hopefully they will get a treatment plan figured out soon so you'll be pain-free!