It's been awhile, I know. So the perfect cycle ended up just being a normal cycle for me. No positive test, just the week-long reminder of my failure.
During that time, I did get the results of the Factor XIII V34L test and of course, just like predicted, I am positive for two copies (homozygous) of the mutation that is clearly linked with early pregnancy loss. So, I was able to start the Lovenox (blood thinner) injections at 10dpo. The injections themselves were not bad... It was more knowing that I was sticking a needle into my abdomen area that freaked me out! I got pretty good at it up until I had to stop after AF came.
So, we went on to cycle number two of trying. Same plan, 7.5 mg of Femara cycle days 3-7 and trigger shot if we had any follicles. Well, went in for the mid-cycle check and had 6 follicles total ranging from 12mm-14mm.
I had to go back two days later to see what had developed and only two on the right side actually grew. So my cycle was "cancelled". Dr. M the Second said there was "no point" doing a trigger for eggs on the wrong side. Even if the eggs did travel to the correct side, I would be at an increased risk for another ectopic pregnancy.
So, like he predicted, my period started (today of course) right on time. I go in tomorrow for another baseline appointment.
I have to say, I don't think I'll be sticking with Dr. M the Second. He basically said that there wasn't going to be much luck using the Femara and that injectable medications or IVF would be our best options. Well, I already know that!! If I had thousands of dollars waiting to be spent, we would have already gone that route.
And another complaint. For both ultrasounds, he had NO IDEA that I didn't have a tube on the right side!! He asked me the first time, "you have a blocked tube on the right?" I said no (after trying not to laugh at him or kick him in the face) and said that I didn't have a tube on the right side. He said "oh that's right, I think I saw that in your chart". Seriously? Did you really read my chart at all?! The second time he started on the right and said "I don't see a reason to wait, we can trigger today". So I asked him "what about the left side". He totally forgot that I DO NOT HAVE A TUBE ON THE RIGHT SIDE! And there wasn't a mature follicle on the left side.
It is one thing to have to have gone though all the losses of pregnancies that we have gone through as well as losing two doctors that I have chosen to work with. Not having any faith in a new doctor doesn't bode well for a good relationship.
So, I'll be requesting a different doctor tomorrow...
Saturday, March 16, 2013
Saturday, February 9, 2013
Starting Over, Again... Take 2
The tests I had done were a repeat TSH test that came back in the normal range, which is good, especially since I hadn't had it checked since I started Synthroid in September. The other two tests were for more clotting factors: PAI-1 and Factor XIII V34L.
In my search to find out what those were (never heard of them!) I found that they are both inherited gene mutations and that they can lead to clotting. PAI-1 is also responsible for implantation failure.
So, wouldn't you know it, I came back positive, heterozygous for PAI-1 (4G/5G). FML. The treatment is Lovenox, a blood thinner. I am still waiting for the results of the Factor XIII test and the decision for Lovenox (and that's a whole other story).
So this time, I asked to be put on 7.5mg of Femara to see if I could get a better response on my left side. I did!!! At my cd9 check, I had a good 19mm follicle on the right side, and a 15.5mm follicle on the left, with another smaller one on the left as well. I returned the next day and ended up with the 19mm on the right still, and the left had a 16.5 and a 15.5mm follicle.
So I got the true joy of injecting myself in the stomach with HCG that night! It wasn't too bad, just weird that I was doing it myself!
After the trigger Friday night, we went in for our first ever IUI on Monday morning. Stu was of course not happy about the whole arrangement, but was a champ. We got back pretty good numbers with 100% forward progressing swimmers! The IUI was a breeze with no pain or anything at all. It took less than a minute and I got to stay reclined for another 5 minutes afterwards.
So now, I am in my TWW. I am nervous and excited, hopeful and terrified. All emotions are high as I wait to test next week to see if we could have possibly gotten lucky!
In my search to find out what those were (never heard of them!) I found that they are both inherited gene mutations and that they can lead to clotting. PAI-1 is also responsible for implantation failure.
So, wouldn't you know it, I came back positive, heterozygous for PAI-1 (4G/5G). FML. The treatment is Lovenox, a blood thinner. I am still waiting for the results of the Factor XIII test and the decision for Lovenox (and that's a whole other story).
So this time, I asked to be put on 7.5mg of Femara to see if I could get a better response on my left side. I did!!! At my cd9 check, I had a good 19mm follicle on the right side, and a 15.5mm follicle on the left, with another smaller one on the left as well. I returned the next day and ended up with the 19mm on the right still, and the left had a 16.5 and a 15.5mm follicle.
So I got the true joy of injecting myself in the stomach with HCG that night! It wasn't too bad, just weird that I was doing it myself!
After the trigger Friday night, we went in for our first ever IUI on Monday morning. Stu was of course not happy about the whole arrangement, but was a champ. We got back pretty good numbers with 100% forward progressing swimmers! The IUI was a breeze with no pain or anything at all. It took less than a minute and I got to stay reclined for another 5 minutes afterwards.
So now, I am in my TWW. I am nervous and excited, hopeful and terrified. All emotions are high as I wait to test next week to see if we could have possibly gotten lucky!
Starting Over, Again... Minus a Tube
The day of my last entry was in fact, the day I got my first period after my ectopic surgery. It was nice to know that my body was trying to go back to normal, but we still needed to wait another cycle before we got to try again.
With the double doses of methotrexate, I'm guessing my folic acid in my body was virtually nothing. Getting pregnant soon would probably have been a bad idea.
The end of December and beginning of January were definitely very dark days for me. I knew that I wasn't in the best emotional state and I don't think that I realized how bad I really felt day to day. I just wanted to pick fights or yell or just be snappy. I wanted to cry most days, and most days I did. There was so much to work through with what had happened and the uncertainty of what is going to happen in the future for us.
I opened Facebook and there were pregnancy announcements everywhere. Belly photos, ultrasound photos and baby photos and updates everywhere. I just wanted to yell at the computer and to those people who had no clue what I was going through and how much it hurt to see that stuff. So, I stopped going on Facebook. It took awhile to realize that even though people are sorry for what happened, their lives have to go on to, while my life felt like it was just stuck in a horrible, sad loop.
It took seeing a very old (pregnant and due on the same day I was) friend for me to get some better perspective (yes, N, I'm talking about you, and you're not "old"). This is someone whom I've known closely since I was in first grade. P.S. nothing I'm about to say hasn't been told to her, just FYI.
The timing of her announcement to me plainly sucked. Christmas Day was hard enough and I got her text wanting to tell me before I had to find out on Facebook that she was pregnant. I of course would have taken the news the same way if she had told me any other day and looking back, really appreciate that she wanted to tell me herself. That's what friends do. But then I found out she is due the same day I was supposed to be due. That was really hard too.
So we met and we talked, and talked like we used to when we were younger- honestly and frankly... nothing held back. She told me she was sorry and felt guilty about being pregnant when I have lost my babies. As much as I don't want her or anyone to feel that way, I appreciated her telling me that. If I had been her, I would feel the same way. It wasn't until we started talking about how the emotions were after a huge loss (she lost her beautiful 15month old daughter in 2007), did I finally feel that someone actually knew exactly how I felt. Exactly. It was the biggest relief (unfortunately) to know that what I was feeling was completely normal and that I am not alone in it.
She let me finally feel like I had some hope. No one knows what to say to someone else who has gone through something life-changing, unless they themselves have gone through it.
So, with my renewed hope, I went in to meet a new RE, Dr. M (Dr. J moved to Texas). Hit it off with him and had a new plan in place that included a few more tests and the plan for Femara with HCG trigger and possible IUI if I had eggs on the left side.
With the double doses of methotrexate, I'm guessing my folic acid in my body was virtually nothing. Getting pregnant soon would probably have been a bad idea.
The end of December and beginning of January were definitely very dark days for me. I knew that I wasn't in the best emotional state and I don't think that I realized how bad I really felt day to day. I just wanted to pick fights or yell or just be snappy. I wanted to cry most days, and most days I did. There was so much to work through with what had happened and the uncertainty of what is going to happen in the future for us.
I opened Facebook and there were pregnancy announcements everywhere. Belly photos, ultrasound photos and baby photos and updates everywhere. I just wanted to yell at the computer and to those people who had no clue what I was going through and how much it hurt to see that stuff. So, I stopped going on Facebook. It took awhile to realize that even though people are sorry for what happened, their lives have to go on to, while my life felt like it was just stuck in a horrible, sad loop.
It took seeing a very old (pregnant and due on the same day I was) friend for me to get some better perspective (yes, N, I'm talking about you, and you're not "old"). This is someone whom I've known closely since I was in first grade. P.S. nothing I'm about to say hasn't been told to her, just FYI.
The timing of her announcement to me plainly sucked. Christmas Day was hard enough and I got her text wanting to tell me before I had to find out on Facebook that she was pregnant. I of course would have taken the news the same way if she had told me any other day and looking back, really appreciate that she wanted to tell me herself. That's what friends do. But then I found out she is due the same day I was supposed to be due. That was really hard too.
So we met and we talked, and talked like we used to when we were younger- honestly and frankly... nothing held back. She told me she was sorry and felt guilty about being pregnant when I have lost my babies. As much as I don't want her or anyone to feel that way, I appreciated her telling me that. If I had been her, I would feel the same way. It wasn't until we started talking about how the emotions were after a huge loss (she lost her beautiful 15month old daughter in 2007), did I finally feel that someone actually knew exactly how I felt. Exactly. It was the biggest relief (unfortunately) to know that what I was feeling was completely normal and that I am not alone in it.
She let me finally feel like I had some hope. No one knows what to say to someone else who has gone through something life-changing, unless they themselves have gone through it.
So, with my renewed hope, I went in to meet a new RE, Dr. M (Dr. J moved to Texas). Hit it off with him and had a new plan in place that included a few more tests and the plan for Femara with HCG trigger and possible IUI if I had eggs on the left side.
Thursday, December 27, 2012
Trying to Find Hope
As of the last post I had just gotten the second methotrexate shots due to my HCG levels not declining. The Wednesday after the second set of shots my HCG did fall to 2,384 and I was bleeding. That was good news until my bloodwork for that Saturday (12/8) came back and showed that my HCG had gone up again.
I got a phone call on Sunday from the nurse with the news and with the instructions to prepare for surgery and to come back in to the office for another ultrasound before the surgery. It was a complete shock and I couldn't believe what was happening. I spent over 4 hours at school getting things prepared for a sub for the week trying not to panic.
So on Monday we went back in and had the ultraound. It showed the ectopic in the tube measuring even bigger than the week before, but now Dr. J saw bleeding spots in my pelvic cavity. So we went over the procedure itself, she emphasized wanting to do as little possible to my tube, but wouldn't know until she got in there.
We went over right away. I had to get ready by myself and that was terrifying. After 3 painful tries, they finally got an IV in and Stu was able to come back before I went in. They gave me a shot of something and I remember it working quickly. One minute I was switching tables, the next minute I was waking up asking about my tube. Someone told me Dr. J couldn't save my tube.
I went in and out a bit but had a lot of pain in my chest and ribs. It really hurt to breathe. That was from the gas they put in me to visualize everything. After awhile I was released to go home.
The first few days were miserable... The breathing thing was the worst part. I took the pain medication that did help a bit the first couple of days. Not until four days after the surgery was I finally able to take a deep breath without hurting so much. After that I only needed Tylenol every once and awhile.
I did return to work after a week for four days before Christmas break. The kids needed me back for sure. It was hard the first couple of days back, more emotionally rather than physically, but by Wednesday, I was doing better.
Throughout all that time, I really didn't have time to process what happened. Now that I have time, the pain of this loss and the loss of my tube makes me feel like I want to panic or just cry. I have always had hope, but then again, I had 2 working ovaries and tubes. Now I just don't know. I know there are worse situations out there, but after 4 losses and over 2 years of trying, how does one continue to find hope on a situation that is less than kind of ideal?
I got a phone call on Sunday from the nurse with the news and with the instructions to prepare for surgery and to come back in to the office for another ultrasound before the surgery. It was a complete shock and I couldn't believe what was happening. I spent over 4 hours at school getting things prepared for a sub for the week trying not to panic.
So on Monday we went back in and had the ultraound. It showed the ectopic in the tube measuring even bigger than the week before, but now Dr. J saw bleeding spots in my pelvic cavity. So we went over the procedure itself, she emphasized wanting to do as little possible to my tube, but wouldn't know until she got in there.
We went over right away. I had to get ready by myself and that was terrifying. After 3 painful tries, they finally got an IV in and Stu was able to come back before I went in. They gave me a shot of something and I remember it working quickly. One minute I was switching tables, the next minute I was waking up asking about my tube. Someone told me Dr. J couldn't save my tube.
I went in and out a bit but had a lot of pain in my chest and ribs. It really hurt to breathe. That was from the gas they put in me to visualize everything. After awhile I was released to go home.
The first few days were miserable... The breathing thing was the worst part. I took the pain medication that did help a bit the first couple of days. Not until four days after the surgery was I finally able to take a deep breath without hurting so much. After that I only needed Tylenol every once and awhile.
I did return to work after a week for four days before Christmas break. The kids needed me back for sure. It was hard the first couple of days back, more emotionally rather than physically, but by Wednesday, I was doing better.
Throughout all that time, I really didn't have time to process what happened. Now that I have time, the pain of this loss and the loss of my tube makes me feel like I want to panic or just cry. I have always had hope, but then again, I had 2 working ovaries and tubes. Now I just don't know. I know there are worse situations out there, but after 4 losses and over 2 years of trying, how does one continue to find hope on a situation that is less than kind of ideal?
Sunday, December 2, 2012
Methotrexate Take 2
I got stuck in the butt again today. I went in for blood tests Wednesday and Saturday and rather than declining, my hcg levels doubled for Wednesday (2,692) and up another 200 to 2,890 yesterday. The Wednesday number was okay, I was advised that it is normal for the level to go up initially, but by day 7 should go down by 15% putting me around the 2,330 range.
So I got to meet Dr. M today, he's a nice guy, to the point and quite gentle. He found the gestational sac on ultrasound confirming an unruptured ectopic pregnancy. He did check other areas as well to be certain. So, he recommended two options-another dose of methotrexate or surgery. As the sac was still very small and there wasn't really anything to see in it, he was confident that another shot would do the job. This set hurt. A lot. Maybe it was the difference in nurses or maybe the site was still sore from last week, but it really hurt this time. Stu said she stuck the needle in all the way and plunged fast. Ouch! I also bled this time at the injection sites. I seriously don't ever want to do this again. So now we still wait.
It is weird that I am still pregnant and feeling pregnant even though my pregnancy was doomed almost 2 weeks ago. Today would have been 7 weeks. So as we speak, I am now having brown spotting which I can only assume is good. On my ultrasound photo, on the left side, you can see a white outlined gestational sac with a dark area around it (fluid)...it is the round one on top of a kind of oblong shape. To the right of the sac is my fallopian tube which looks like a straw going at an angle upwards. I will try to upload the photo in a smaller form but here is the link to my photo:Ultrasound photo
On another note, my suspicions of having a positive test for the MTHFR (or the motherf&@#3r gene as I call it) was confirmed. I am positive for a double copy (homozygous) of the C677t mutation. This is the bad one to have as far as I understand. It has everything to do with properly converting and producing folic acid in the body.
People with this type of mutation do not produce enough folic acid which leads to increased occurrence of neural tube defects. It also leads to increased homocysteine levels which lead to clotting factors. Both of these issue are troublesome for pregnancy and even though it is still controversial to say this, there is an increased likelihood of recurrent miscarriage.
So I've got the thyroid/MTHFR/ectopic/autoimmune thing to worry about for my next pregnancy. No problem...
So I got to meet Dr. M today, he's a nice guy, to the point and quite gentle. He found the gestational sac on ultrasound confirming an unruptured ectopic pregnancy. He did check other areas as well to be certain. So, he recommended two options-another dose of methotrexate or surgery. As the sac was still very small and there wasn't really anything to see in it, he was confident that another shot would do the job. This set hurt. A lot. Maybe it was the difference in nurses or maybe the site was still sore from last week, but it really hurt this time. Stu said she stuck the needle in all the way and plunged fast. Ouch! I also bled this time at the injection sites. I seriously don't ever want to do this again. So now we still wait.
It is weird that I am still pregnant and feeling pregnant even though my pregnancy was doomed almost 2 weeks ago. Today would have been 7 weeks. So as we speak, I am now having brown spotting which I can only assume is good. On my ultrasound photo, on the left side, you can see a white outlined gestational sac with a dark area around it (fluid)...it is the round one on top of a kind of oblong shape. To the right of the sac is my fallopian tube which looks like a straw going at an angle upwards. I will try to upload the photo in a smaller form but here is the link to my photo:Ultrasound photo
On another note, my suspicions of having a positive test for the MTHFR (or the motherf&@#3r gene as I call it) was confirmed. I am positive for a double copy (homozygous) of the C677t mutation. This is the bad one to have as far as I understand. It has everything to do with properly converting and producing folic acid in the body.
People with this type of mutation do not produce enough folic acid which leads to increased occurrence of neural tube defects. It also leads to increased homocysteine levels which lead to clotting factors. Both of these issue are troublesome for pregnancy and even though it is still controversial to say this, there is an increased likelihood of recurrent miscarriage.
So I've got the thyroid/MTHFR/ectopic/autoimmune thing to worry about for my next pregnancy. No problem...
Sunday, November 25, 2012
Ectopic Pregnancy
Just got back from our latest ultrasound. As of Friday my hcg had risen to 1024 and whereas it should have been a good sign, in my case with nothing being found at all in my uterus, it wasn't good news.
Ultraound today revealed the same small mass Dr. J had seen on Friday and that had not changed. But, on closer inspection, she did see a mass in my right tube measuring 6w1d. Today I am supposed to be 6 weeks. So, the mass combined with nothing again in my uterus, Dr. J was certain that I am having an ectopic pregnancy.
She looked and looked to make sure. Checked my cervix and all surrounding areas that an embryo could have implanted. So I have no doubt about the ectopic diagnosis.
So, I had to get the Methotrexate shots, one in each hip, intramuscularly. Stung a bit, but wasn't too bad. It is a chemotherapy drug that strips your body of folic acid and stops the growth of cellular tissue quickly. If I didn't get the shots then I would have run the risk of having my tube rupture and have internal bleeding. I don't want to lose a tube and I seriously don't want to hemorrhage.
So now, we have to have my blood levels checked on Wednesday and Saturday. If the levels are going down well, then I will just have blood tests weekly to monitor my levels to 0. If they are not going down well by Saturday, then I will have to get another dose of the Methotrexate.
After my numbers are at 0, I will have to wait another "normal" cycle before we can try again. So that puts us in around late January-February to try again. In the mean time, I am not to have any folic acid supplements or foods, as well as no ibuprofen or aspirin, alcohol or a lot of sun exposure.
So, as it is, am I the most unlucky person in the world?! Only 1% of the population will ever have more than 3 miscarriages, and about 1 on 50 pregnancies are ectopic. I don't anyone who has has an ectopic. I am a statistical nightmare.
But on the flip side, 85% of women who have 3 or more losses will go on to have a normal pregnancy and my risk for another ectopic is higher than the rest of the normal population, but not by too much. There's always a rainbow after a storm...I just have to find it.
Ultraound today revealed the same small mass Dr. J had seen on Friday and that had not changed. But, on closer inspection, she did see a mass in my right tube measuring 6w1d. Today I am supposed to be 6 weeks. So, the mass combined with nothing again in my uterus, Dr. J was certain that I am having an ectopic pregnancy.
She looked and looked to make sure. Checked my cervix and all surrounding areas that an embryo could have implanted. So I have no doubt about the ectopic diagnosis.
So, I had to get the Methotrexate shots, one in each hip, intramuscularly. Stung a bit, but wasn't too bad. It is a chemotherapy drug that strips your body of folic acid and stops the growth of cellular tissue quickly. If I didn't get the shots then I would have run the risk of having my tube rupture and have internal bleeding. I don't want to lose a tube and I seriously don't want to hemorrhage.
So now, we have to have my blood levels checked on Wednesday and Saturday. If the levels are going down well, then I will just have blood tests weekly to monitor my levels to 0. If they are not going down well by Saturday, then I will have to get another dose of the Methotrexate.
After my numbers are at 0, I will have to wait another "normal" cycle before we can try again. So that puts us in around late January-February to try again. In the mean time, I am not to have any folic acid supplements or foods, as well as no ibuprofen or aspirin, alcohol or a lot of sun exposure.
So, as it is, am I the most unlucky person in the world?! Only 1% of the population will ever have more than 3 miscarriages, and about 1 on 50 pregnancies are ectopic. I don't anyone who has has an ectopic. I am a statistical nightmare.
But on the flip side, 85% of women who have 3 or more losses will go on to have a normal pregnancy and my risk for another ectopic is higher than the rest of the normal population, but not by too much. There's always a rainbow after a storm...I just have to find it.
Saturday, November 24, 2012
More Waiting
On Wednesday my hcg was 669, and yesterday it jumped up to 1024. Crap. It didn't quite double, but now I'm seriously looking at the possibility of an ectopic. On ultrasound, most pregnancies can't be picked up until your levels reach at least 1000 which means in my case dr. J wouldn't have been able to see anything anyways.
I have to go in tomorrow (Sunday) for another scan. This time she may be able to see something. If it isn't in my uterus, the I have to go ahead with the methotrexate shot because it means there is something somewhere causing my hcg to continue to rise. So this is why I haven't started my heavy bleeding yet.
I'm so scared right now. I was really hoping that this would have ended quickly and not be drawn out like this with all the uncertainty. What I'm most afraid of is the shot. We won't be able to try for sometime afterwards because it strips your body of folic acid which could lead to neural tube defects in a subsequent pregnancy. And also, it's a pretty strong drug.
What if I see a baby in the right spot tomorrow? Could I really be that lucky? I'm guessing not since my numbers should have been rising faster than this. I will continue to hope that this all turns out well.
I have to go in tomorrow (Sunday) for another scan. This time she may be able to see something. If it isn't in my uterus, the I have to go ahead with the methotrexate shot because it means there is something somewhere causing my hcg to continue to rise. So this is why I haven't started my heavy bleeding yet.
I'm so scared right now. I was really hoping that this would have ended quickly and not be drawn out like this with all the uncertainty. What I'm most afraid of is the shot. We won't be able to try for sometime afterwards because it strips your body of folic acid which could lead to neural tube defects in a subsequent pregnancy. And also, it's a pretty strong drug.
What if I see a baby in the right spot tomorrow? Could I really be that lucky? I'm guessing not since my numbers should have been rising faster than this. I will continue to hope that this all turns out well.
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