This may be my new home soon...

socialwkrsweetie · December 2013

Hello ladies,

I have been lurking for a few weeks and it looks like at some point in 2014 this may be our new home. My history is in my siggy but here's a bit about me and DH. I just turned 31 and DH is 32. We have been married for a little over a year and have been trying since September 2012. I was diagnosed with PCOS after my IUD was removed and my period never returned, along with cystic ovaries. DH is in the clear and as he puts it "has super swimmers". All my testing was normal as well. I have a long history of autoimmune disease (hashimotos, nephrotic symdrome, lupus) and although my rheumatologist never thought that pregnancy would be an issue after my latest MMC in July my lupus has been it's most active and become organ involved. Even after being on immunosuppresents, steroids and anti-malarias my lupus continues to flare with multi-joint joint pain, pleuritis and pericarditis (lung and heart lining inflammation). We met with our RE last week where he threw us a curve ball and said he thinks we should devout all our efforts to gestational carrier using my eggs and DHs sperm. I was devastated, even though I knew this was always a possibility and my worst fear. We would like to do at least one IVF cycle to give it one more shot. We know that I might not be able to carry full term as each pregnancy I've lasted longer but then still miscarried. Our MFM consulted with us on Monday and told us that if my lupus has not stabilized and gone into remission by March then he believes this is the safest and best option for us at this time. He said if I stabilized in the future I could certainly try to get pregnant again in the future. We meet with my rheumatologist on this coming Monday to discuss what she thinks. One of my best friends has offered to be our GC. She has three boys of her own and had very healthy pregnancies. She's 33 and says that she would be more than willing but DH isn't there yet. He feels like unless we are able to do it on our own one more time, or even twice he would feel like we haven't exhausted all our options. He did say if the doctors say it is just too dangerous for me to get pregnant again he would fully support that and then we would re-evaluate. I'm a planner so of course I am looking at both options. There is so much to learn about it's definitely overwhelming. We are in Massachusetts and I'm hoping there are other ladies out there that are also from Mass and have some knowledge that would help us. If not, I still have already learned so much about the lingo and everything else since I started lurking. Thank you in advance!

LittleLady77 · December 2013

Infertility issues suck. I'm sorry you have been dealing with all this. Hopefully your upcoming IVF cycle is successful but if not we will welcome you with open arms.

hmz819 · December 2013

I'm a lurker on this board but have you looked into reproductive immunology? Maybe an RI can help you. I see a RI message me if you would like details. Good luck to you.

socialwkrsweetie · December 2013

Thank you little lady!

Hmz, I've had the full autoimmune panel, seen a reproductive hematologist and everything is normal. Also our karotyping was normal for both DH and myself. And our last little one'a testing was inconclusive. Our team has said we've tested for every possible issue. We aren't sure where else to go at this point.

brooklynesque · December 2013

Just wanted to say welcome. There are a few ladies here who are or are using GCs that should have helpful info for you.

liz4paws · December 2013

Welcome! I also echo hmz about the possibility of seeing an RI. An RI may be able to help with the Lupus. I wish you luck with whatever path you take!

lincoln79 · December 2013

welcome to the board, the ladies here are great and you will find a wealth of info from our personal stories.

my full history isn't in my sig (can't get it to update), but i have celiac's and other autoimmune issues. we have had three ivf, three pg, three m/c. the genetic analysis of our products of conception was normal indicating an autoimmune component.

we had a consult with an RI after m/c 2. RI is really still in its infancy, and they will only find what they can test for. the treatments are pretty limited, so we have ended up going with a GC because our fertilization rates, embryo quality all look great.

mh found it pretty alien to begin with too, but when he saw the tolls the treatments were taking on my body (which already goes through a lot) and he had some time to digest, he came around. this became completely true after both the RE and RI had no more suggestions for us.

from our perspective, a carrier will have our child for nine months and then we would have he/she for the rest of their lives.

do we mourn not going through the pregnancy? of course. do we struggle some days with the emotions of it? absolutely. but for us, it is best plan with the information we have right now.

we are here to support you as you move through this decision making process, and i know lupus with organ involvement is no joke. one thing mh keeps reminding me of when i am struggling with giving up on me getting and staying pregnant is that i want to be as healthy as possible to raise our child.

pm me any time if i can be of more help.

socialwkrsweetie · December 2013

Thank you so much ladies. I will look into an RI but I know that I would not be comfortable doing any treatments that my Rheumy wouldn't approve. I did ask both the reproductive hematologist and my RE to test for NK cells and they said that's experimental and there's no treatment for it. I know that's not necessarily the case but since most signs point to autoimmune issues I didn't push it further.

@lincoln79 I will definitely send you a PM with some more questions. Thank you!

pcrumley · December 2013

@socialwkrsweetie I have an auto immune disease as well so I fully understand, I'm new to this forum as well, but haven't made an official introduction yet. I hope your have a good appt with your rhuemy !

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