My long roller coaster of a ride UPDATE at bottom of page

I have not been on in about a month but I wanted to update everyone with my story and see if there was anyone who has gone through what I have been through. WARNING: This is going to be long.

I had my D&C for what was called a molar pregnancy on March 29. I went for my 2 week follow up on April 15 and was informed that it was not molar after all. They had 2 pathologists do a biopsy and they both agreed it was not molar. Great news! Doc said to wait about 2 cycles and we can try again. It was bittersweet news since if it was molar it would have put us out for at least 6 months to a year and then there are health concerns for me within that 6 months to a year. I give blood, make an appointment to go back in 2 weeks to do another blood draw and go along my merry way.

The nurse calls me the next day to tell me that my HCG numbers were in the 11,000 range which is too high for someone who is over 2 weeks post D&C and whose numbers were in the 13,000 range just before the D&C. She says the doc is a little concerned and to come in 1 week instead of 2.

I go back a week later. Nurse calls the next day - my numbers are UP to 18,500 range. The doc has no idea what is going on and thinks it may be molar after all because there is no other explanation as to why my HCG numbers would be going back up. I need to see a Gynocologost Oncologist immediately. I am also bleeding again at this point which worries them more. They make me an appointment with one for 2 days later. I was so scared, confused, sad.

I see the Gyno Onco and he is awesome. He does an exam and has a sono done on me. I also did bloodwork. He calls me that night to tell me my numbers are back down to the 13,000 range which is great news. They saw a miniscule amount of tissue in my uterus on the sono. He said at this point he thinks that there was some tissue left over from my D&C and that I am naturally passing it at this point (hence the bleeding). He thinks we can let it continue on this path and wants me back in a week to draw blood again. That was last week. My numbers were down to 11,000 range. The nurse said that was good since they were dropping. I was not too thrilled since I was told that 11,000 was high 2 weeks post D&C but this nurse said that as long as my numbers go down, that is what matters.

So, I go back next week for another blood draw and I really hope my numbers start going down a lot faster. I am still spotting which is driving me nuts! I just want to move on with this already!!!!

Thank you for letting me share my story and for reading down this far. It has been such a crazy trip for us. Has anyone been through something similar or know someone who has?

Message edited 5/17/2010 4:13:28 PM.

Re: My long roller coaster of a ride

I am so sorry you had to go through this!!! I can only imagine you what you have been going through having your miscarriage being drawn out for this long.

I am glad the #'s our finally going down.

I will keep you in my prayers!!

Re: My long roller coaster of a ride

oh my you sound like me. The same thing happened!!!!! My levels finally went down after 5 months. Everyone thought it was a molar. The onocologist that I saw Dr. Chang was an idiot. He wanted me to wait until the numbers dropped by themselves. I had too D&C to help bring the numbers down and each pathology reported something different. I finally had enough of the molar conversation and no one knowing anything. I was bleeding and spotting NON STOP...Literally NON STOP. I used more maxipads in those months than I did in my entire life. So I went into the city at Memorial Sloan Kettering and found an amazing doctor. When I got there I began to bleed nonstop. They rush me to the hospital and did an MRI. FINALLY!!!! Long story short. I didnt have a molar pg but a placenta acreta. I had to have chemo and I am so happy to announce my levels are zero. I still have to wait six months before trying again. If you want I can forward you their contact information.

Dont wait. Make sure you ask for an MRI. It is more accurate than a sonogram or a CTScan. Trust me. I had to wait three months before I found out what was really wrong with me. Sloan Kettering even took my slides from Winthrop (terrible hospital that missed diagnosed me in with molar) and determined that it wasnt a molar. FM if you need more information.

maria

Re: My long roller coaster of a ride

I'm so sorry you have to go through this!

A miscarriage is hard enough to deal with by itself without having to go through that whole ordeal. You must be a strong woman!

I that your hcg quickly goes back to 0.

Re: My long roller coaster of a ride

Re: My long roller coaster of a ride

Message edited 5/12/2010 10:44:34 AM.

Re: My long roller coaster of a ride

I'm so sorry to hear your story. I can't even imagine. I know the worst part of any m/c is not knowing what will happen next...and the fact that each case is different. But the back and forth must be rough.

I don't have experience with that. the only experience I had was that I did have left over tissue and my m/c lasted like 2 months due to that and in the end had to have a final D&C. But no talk of molar pregnancy.

I'm so sorry lots of from me. I hope your numbers go down soon!

Re: My long roller coaster of a ride

Posted by zoe282

I'm so sorry to hear your story. I can't even imagine. I know the worst part of any m/c is not knowing what will happen next...and the fact that each case is different. But the back and forth must be rough.

I don't have experience with that. the only experience I had was that I did have left over tissue and my m/c lasted like 2 months due to that and in the end had to have a final D&C. But no talk of molar pregnancy.

I'm so sorry lots of from me. I hope your numbers go down soon!

Re: My long roller coaster of a ride

Posted by our-secret

Posted by zoe282

I'm so sorry to hear your story. I can't even imagine. I know the worst part of any m/c is not knowing what will happen next...and the fact that each case is different. But the back and forth must be rough.

I don't have experience with that. the only experience I had was that I did have left over tissue and my m/c lasted like 2 months due to that and in the end had to have a final D&C. But no talk of molar pregnancy.

I'm so sorry lots of from me. I hope your numbers go down soon!

Thank you. How did they finally decide to do another D&C? Did that finally end it? I am starting to think that if my numbers barely go down when I test next week I am going to have to consider this as an option. I just want this over already!

Re: My long roller coaster of a ride

It was just spotting in the beginning but when they 1st thought it was a molar and I had some tissue left over they did another D&C. After my second D&C the bleeding was unbearable. It wouldnt stop bleeding, clotting and tissue began to come out. Completely freaked me out. I know exactly what you are going through. ASK FOR AN MRI to be safe. It wont hurt to ask. Placenta acreta is when the placenta grows into the uterian lining and it can sometimes grow pass the uterous. They could have done 100 D&C and the levels would not have dropped because the placent had grown so far deep. The only way to remove it was chemo.

Good luck and FM me if you need anything.

Re: My long roller coaster of a ride

Posted by zoe282

Posted by our-secret

Posted by zoe282

I'm so sorry to hear your story. I can't even imagine. I know the worst part of any m/c is not knowing what will happen next...and the fact that each case is different. But the back and forth must be rough.

I don't have experience with that. the only experience I had was that I did have left over tissue and my m/c lasted like 2 months due to that and in the end had to have a final D&C. But no talk of molar pregnancy.

I'm so sorry lots of from me. I hope your numbers go down soon!

Thank you. How did they finally decide to do another D&C? Did that finally end it? I am starting to think that if my numbers barely go down when I test next week I am going to have to consider this as an option. I just want this over already!

They were able to see the tissue on the sono. It was very frustrating b/c the whole thing took FOREVER. 2 rounds of meds...then finally a D&C. After the D&C it was all out. That finally ended it thank goodness. My doc doesn't really follow numbers. never took my blood once...but since he could see the tissue we still new stuff was there....I bled the whole time for a long time...

Re: My long roller coaster of a ride

Re: My long roller coaster of a ride

I was wondering about you and how you were doing. I am so sorry you have to go through this

Re: My long roller coaster of a ride

You are not alone.. hoping things get bettert for yoU!

Re: My long roller coaster of a ride

Hey Sorry its been a long week. The levels were going down gradually. Every week my heart would sink because I wanted them to drop drastically. The spotting was on and off in the beginning but the second D&C caused it to bleed non-stop. That is when I switched doctors and found out I had placenta acreta. Let me know what the numbers are at on monday. I am praying for you. I hope they drop. I know what you are going through. every blood test I would have anxiety about the levels. I still have to go weekly. Monday is my last day and then I have to go monthly for six months and then hopefully I can try again. If the levels didnt drop a lot ask for an MRI. See what the doctor says.

Maria

Re: My long roller coaster of a ride

I just got back from having my blood drawn and the nurse said she will call me this afetrnoon with the results. She said when your numbers are high like mine they drop very slowly. Once they hit a certain point, that is when they start dropping quicker. She said as long as they are going down and not staying the same or rising, I am ok. I guess I will see what they are in about 5 hours or so (not like I am counting down or anything ).

Re: My long roller coaster of a ride

I got my results: 3,284 They went down so much in these past 2 weeks. I am so happy and relieved that I am finally seeing some progress. I have stopped spotting too. I am starting to see the light at the end of the tunnel.

Re: My long roller coaster of a ride UPDATE at bottom of page

good i am glad you are feeling better-- u hate that time period of waiting--- hugs

Re: My long roller coaster of a ride UPDATE at bottom of page

Re: My long roller coaster of a ride UPDATE at bottom of page

I'm glad you are feeling better and making progress! it certainly has been a rollercoaster ride for you! hang in there!!

Re: My long roller coaster of a ride UPDATE at bottom of page

I am so glad they dropped a lot. That is a good sign nothing else is happening. I am so happy for you. I am still here if you need to talk.