Back from CO (long)

Sophistikitty · November 2013

I have missed so much around here! Congratulations Liz!!!!

Well, as everyone else that has been through it has said, the O.DWU is definitely draining. Testing wise there was only one blood test (within the APA panel) that I hadn’t had before and all of the testing DH had to do had done previously so in many ways the day was a means to an end. I found that I was filled with a sense of bewilderment by the end of the day but that was likely due to a lack of sleep and the fact that my ballon of hope had been popped.

The thing that became the main focus was the fibroid that three RE’s have said is not an issue. This is the same fibroid that some of you may remember a top reproductive surgeon told me it was good thing it wasn’t an issue because he wouldn’t do the surgery due to its position. He said I would unequivocally need a blood transfusion if it was removed and the risk benefit ratio was a no-brainer in support of not removing it. What I don’t understand is it hasn’t grown in size since the last time it was looked at but yet now it is an issue. Dr. S. said that I have had extensive testing and that there are no apparent issues outside of the fibroid. He said with two failed DE transfers it is something that has to be acknowledged. He then said that without its removal my odds are fifty percent reduced and he will not allow me to move forward unless I have it out.

So, here’s the thing. I’m 42. This would be an open abdominal myomectomy. Even if I was to decide to have the surgery there are no guarantees. There could be scaring, it could go wrong and I could need a hysterectomy, and lastly if I take the word of the surgeon I last saw I could be risking a lot more than that. Obviously it is major surgery because the nurse at the O.DWU told me they would require me to bank three units of my own blood before. On top of that I wouldn’t be able to start a cycle until three months after. My thinking is, if my odds of success are what he said (forty percent) then they are still better than most people’s odds with OE IVF. If I listen to the other RE’s I have seen then my odds are much better. If I were younger I might consider the surgery but at this point in the game I just don’t think it’s something I am willing to do.

So there you have it. No idea really where we go from here. I have an appointment with the surgeon I saw previously next week but I really only made the appointment in hopes of getting validation of my decision.

hmz819 · November 2013

I'm so sorry the O.DWU didn't work out the way you wanted. I hope the visit with the surgeon next week goes well and you can come up with a plan that will bring you peace in your decisions.

DoublePortion · November 2013

I wish you had gotten better news. ((hugs)) Maybe the visit with the surgeon will help you decide on your next step. Perhaps he'll be a little more optimistic with a surgical outcome since it hasn't grown. So sorry that stupid fibroid is causing you so much trouble.

chucktgirl · November 2013

That is a lot to take in. I wish you were coming home with more optimistic news. But maybe the surgeon WILL have good news! I'm so sorry this is such an obstacle for you.

PrettyAccountant · November 2013

I'm so sorry your visit wasn't better. I hope your surgeon gives you better news. I can tell you that in my experience, the drs generally disagreed on my fibroids and them causing issues. I always felt lost because one dr would directly contradict the other.
Sending you super big hugs.

JSM0801 · November 2013

I'm so sorry you got some conflicting views on your fibroid situation. It is so frustrating how every doctor seems to have a different opinion. I hope you come up with a plan soon that you are comfortable moving forward with! GL!!

Mrs.McIrish · November 2013

Ugh. I'm so sorry sweetie. It shouldn't be this difficult.

liz4paws · November 2013

Man, that's a lot to comprehend from your trip. I'm sorry you didn't leave with better news. I hope you are able to find a plan that you feel comfortable with and can move forward with confidence. Big hugs!

J&D2007 · November 2013

I'm so sorry about the big decision you have to make. I wish there was a clear cut answer for you. I understand not wanting to pursue his treatment plan. I sure wish this was easier.

JM1977 · November 2013

I'm so sorry for this upsetting news and the impossible decision it leaves you with. I hope you can find some clarity through your follow-up appointment.

BzeetyD · November 2013

I'm sorry to hear about the fibroids being an issue. This clinic is known for checking under every rock in every nook and cranny to uncover a possible issue.

Are you heavily considering the surgery? Are you looking into/open to other options to build your family?

It's such a hard decision. I'm sorry that IF sucks so much.

brooklynesque · November 2013

Sophistikitty, I don't know what other REs you've consulted with, but you might also try a phone consult with one of the clinics that is known for stellar DE rates to see if they think the fibroid is the problem. The ones that come to mind are AFFC, ORM, and San Diego. I'm generally not a huge advocate of some of those places because I've heard some of them help sustain their rates by discouraging eSETs, but it's hard to argue with an 80% success rate like AFFC's. Like I said, might be worth a consult before you consider invasive surgery. Sometimes the ute is at fault for repeat failures but it's also possible to get stuck with bad eggs even from a good donor. Hugs.

brooklynesque · November 2013

Sorry -- AFCC, not AFFC.

Km672 · November 2013

Oh I'm so very sorry for this news.

I hope you take some time to think about all of your options. This is a really tough decision. I wish it was more straightforward.

This is so hard! I don't know what I would do either. It's so much to go through when you've been through so much already.

Lacyj67 · November 2013

Wow that is a little bit taking the wind outta your sails! Im sorry I too have fibroids and have always wondered if it was part of my issues. I have had one failed DE FET and makes me very curious about your situation. I will be watching for your updates closely and really hope that you have a positive outcome with all of this! Hang in there and keep pushing forward!!!!

Sophistikitty · November 2013

BzeetyD said:

I'm sorry to hear about the fibroids being an issue. This clinic is known for checking under every rock in every nook and cranny to uncover a possible issue.

Are you heavily considering the surgery? Are you looking into/open to other options to build your family?

It's such a hard decision. I'm sorry that IF sucks so much.

At this point I am not considering the surgery. I am fairly confident in the assessments I have had previously. The new clinic said they couldn’t send the ultrasound images from the workup to my surgeon or local RE (odd). I had a pelvic MRI in June though (much more accurate than ultrasound for evaluation of fibroids) and will be taking the CD of those images to the surgeon and go from there.

At this point we are still hoping to move forward with DE unless we get other opinions that corroborate his view. Obviously if that is the route we go it will be with a different clinic.

Sophistikitty · November 2013

brooklynesque said:

Sophistikitty, I don't know what other REs you've consulted with, but you might also try a phone consult with one of the clinics that is known for stellar DE rates to see if they think the fibroid is the problem. The ones that come to mind are AFFC, ORM, and San Diego. I'm generally not a huge advocate of some of those places because I've heard some of them help sustain their rates by discouraging eSETs, but it's hard to argue with an 80% success rate like AFFC's. Like I said, might be worth a consult before you consider invasive surgery. Sometimes the ute is at fault for repeat failures but it's also possible to get stuck with bad eggs even from a good donor. Hugs.

Thanks brooklynesque. This is exactly our train of thought right now. We are leaning towards AFCC as it closer and has the best frozen stats... I am not naive enough at this point to think the fresh cycle will work.

luvboston · November 2013

I'm sorry your od wasn't more helpful! Has anyone ever talked to you about the procedure where they stop the blood flow to the fibroids?

Sophistikitty · November 2013

Thanks luvboston. It is on my list of questions for the surgeon. Everyone I have seen though has said it would require and open myomectomy. There is also an MRI technique that I have read about that I am going to ask about.

Sophistikitty · December 2013

Lacyj67 said:

Wow that is a little bit taking the wind outta your sails! Im sorry I too have fibroids and have always wondered if it was part of my issues. I have had one failed DE FET and makes me very curious about your situation. I will be watching for your updates closely and really hope that you have a positive outcome with all of this! Hang in there and keep pushing forward!!!!

I am sorry that you are also dealing with similar questions. What type are yours?

I only have one and it is intramural. When I last saw the surgeon he told me to remove it would require making an incision through the actual uterus which could compromise it’s future strength etc. I’ll see what he says when I see him again on Thursday.

Maybe I’m just too cynical but I really believe stats had a lot to do with the ultimatum I was given.

Back from CO (long)

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