Had a consult with my RE yesterday. He said I have Asherman's Syndrome. It's when a trauma to the uterus (my c-section) results in the formation of scar tissue. There are varying degrees of severity and that is what we still don't know. Will it keep growing back? Is it gone? Will it get worse?
Here's the revised plan. Stay on my current estrogen and progesterone therapy for the full 21 days to let my uterus heal from the last surgery. Go in for ultrasound on day 1, then start birth control (BCP) on day 5. Have another hysteroscopy so they can check to see if the scar tissue has grown back. If it's clear, I heal for a few days while on BCP, then go off, get a day 1 and start IVF. If only minor scar tissue removal needs to be done, I heal for a while on BCP then same thing and start IVF. If it's major regrowth of scar tissue, they remove it and we re-assess.
Any way you look at it, it's all a whole lot of delays. I was really planning on getting at least 2 IVFs in this year (possibly even 3) until all this happened. I've already hit my out of pocket maximum on insurance so I was hoping to get 2 IVFs for minimal money (although the Rx costs are still the biggest hit). Now, I'll be lucky if we get to do 1 this year. Based on all these hysteroscopies/healing/waiting by the time I'm ready to start it will hit my family all-inclusive trip to Jamaica. I already declared that there is no way in hell I will be in any type of a 2 week wait during that trip. I'm either not drinking because I'm happy and pregnant. Or drinking it up because I'm sad.
To put it quite simply, IF sucks.
Thursday, August 26, 2010
Saturday, August 21, 2010
4 lbs - Seriously?
On Thursday I was happily still just below my pre-pg weight. As of Friday post surgery, I had gained 4lbs and my clothes felt tight. I'm hoping some of it is the IV fluids still in my body, and not just the fact that I started high doses of estrogen again.
I'm expecting the usual weight gain from steriods and injections, but that's not until I'm actually starting my IVF cycle. This pre-cycle weight gain is annoying. Ah, welcome back to the world of fertility treatments...this blows.
I'm also still feeling extremely weak and get tired very easily. Sounds like time to lie on the couch and watch a movie.
I'm expecting the usual weight gain from steriods and injections, but that's not until I'm actually starting my IVF cycle. This pre-cycle weight gain is annoying. Ah, welcome back to the world of fertility treatments...this blows.
I'm also still feeling extremely weak and get tired very easily. Sounds like time to lie on the couch and watch a movie.
Friday, August 20, 2010
Bye-bye Scar Tissue
I had another hysteroscopy yesterday, this time to cut out the scar tissue blocking the left side of my uterus. The doc said they had a plan to go after the scar tissue and cut out as much as they could, but they were not planning to be overly aggressive or heroic with removing all of it. I asked why. He said from the pictures, it didn't look promising to get it all and they didn't want to perforate my uterus. Good call. He said they would be doing ultrasound guidance to help determine where to cut and possibly it would be better than they expected.
They explained more about the balloon that they were going to put in to hold the sides of my uterus open while I heal. Apparently it would have a piece that hangs out of me and I would need to tape it to my leg or tuck it in my undies. Lovely. I also learned that the "few days to heal" is actually 21 days of estrogen therapy with progesterone added in the last 7 days. While I was hoping to start stims for IVF in a week, it's going to be another 3 week delay. I was quite disappointed at yet another setback, but realize that getting my uterus in the best possible shape is the most important thing.
And then they dropped the next bomb. I will most likely need to go back at the end of this 3 week period to have another hysteroscopy to get any additional scar tissue that grew back while I was healing. I had asked how quickly it grows back and the most crucial time is 2-3 weeks after it was removed. TTC#1 took 4 surgeries to get pg, and 2 surgeries for delivery. TTC#2 is starting off with 3 surgeries before I've even had my first retrieval.
Did all the pre-op paperwork, pee in a cup, vitals, and IV. I always say right away that I need lidocaine in my hand before they start digging for a vein for the IV, which always brings the anesthiologist right in. She started flicking my veins until they were tingling and said she could do it without lidocaine and wouldn't dig. I hesitantly said ok, and she got in right away. Score 1 for the anesthiologist. Off to the operating room. Got situated on the table, strapped down my arms, chatted with the scrub nurse and anesthiologist. Got some good oxygen and relaxy drugs. I never get enough time with the relaxy drugs before they put me to sleep, I mean at least let me enjoy the high for awhile, right?
Wake up in recovery. I immediately ask the nurse if I have a balloon in me. Nope. They tried putting the balloon in and apparently my body rejected it and it wouldn't stay in. So I'm just on the hormone therapy which is working on building a thick lining in my uterus. I also realized that I must have majorly chomped my lip because it is all puffy and hurts. My DH comes back to see me and then the doc comes in. It went better than expected and they got a good chunk of the scar tissue out. I think he said more, but I'll have to ask DH again, I'm still a bit fuzzy on the rest, but know I need to setup another consult with the RE to determine next steps based on the surgery results.
On the personal front, I'm not bouncing back from this one. I came home and slept for 2 1/2 hours, was exhausted from doing DSs evening routine, then went to bed at 9:30pm. Got up for work this morning and realized that I still have a ways to go for recovery. My blood pressue must be really low because I am extremely weak. It was an effort to carry DS this morning and while I've been working, I think I need a nap. I incorrectly think that just because there isn't an external scar that needs to heal and I'm not in pain (uncomfortable a bit, but no real pain) that I'm fine. I'm not. My body still needs time to rest. I need to remember that for the next surgery in a few weeks. Luckily the weekend will be here and I can chill for a few days.
They explained more about the balloon that they were going to put in to hold the sides of my uterus open while I heal. Apparently it would have a piece that hangs out of me and I would need to tape it to my leg or tuck it in my undies. Lovely. I also learned that the "few days to heal" is actually 21 days of estrogen therapy with progesterone added in the last 7 days. While I was hoping to start stims for IVF in a week, it's going to be another 3 week delay. I was quite disappointed at yet another setback, but realize that getting my uterus in the best possible shape is the most important thing.
And then they dropped the next bomb. I will most likely need to go back at the end of this 3 week period to have another hysteroscopy to get any additional scar tissue that grew back while I was healing. I had asked how quickly it grows back and the most crucial time is 2-3 weeks after it was removed. TTC#1 took 4 surgeries to get pg, and 2 surgeries for delivery. TTC#2 is starting off with 3 surgeries before I've even had my first retrieval.
Did all the pre-op paperwork, pee in a cup, vitals, and IV. I always say right away that I need lidocaine in my hand before they start digging for a vein for the IV, which always brings the anesthiologist right in. She started flicking my veins until they were tingling and said she could do it without lidocaine and wouldn't dig. I hesitantly said ok, and she got in right away. Score 1 for the anesthiologist. Off to the operating room. Got situated on the table, strapped down my arms, chatted with the scrub nurse and anesthiologist. Got some good oxygen and relaxy drugs. I never get enough time with the relaxy drugs before they put me to sleep, I mean at least let me enjoy the high for awhile, right?
Wake up in recovery. I immediately ask the nurse if I have a balloon in me. Nope. They tried putting the balloon in and apparently my body rejected it and it wouldn't stay in. So I'm just on the hormone therapy which is working on building a thick lining in my uterus. I also realized that I must have majorly chomped my lip because it is all puffy and hurts. My DH comes back to see me and then the doc comes in. It went better than expected and they got a good chunk of the scar tissue out. I think he said more, but I'll have to ask DH again, I'm still a bit fuzzy on the rest, but know I need to setup another consult with the RE to determine next steps based on the surgery results.
On the personal front, I'm not bouncing back from this one. I came home and slept for 2 1/2 hours, was exhausted from doing DSs evening routine, then went to bed at 9:30pm. Got up for work this morning and realized that I still have a ways to go for recovery. My blood pressue must be really low because I am extremely weak. It was an effort to carry DS this morning and while I've been working, I think I need a nap. I incorrectly think that just because there isn't an external scar that needs to heal and I'm not in pain (uncomfortable a bit, but no real pain) that I'm fine. I'm not. My body still needs time to rest. I need to remember that for the next surgery in a few weeks. Luckily the weekend will be here and I can chill for a few days.
Monday, August 9, 2010
Not the news I wanted to hear...more surgery
We aren't moving forward very quickly. I just had a consult with the RE today to review my hysteroscopy and MRI results. Apparently if you think of my uterine cavity as a triangle, 1/3 of it is blocked off. He assumes it's with scar tissue, which is bad. Scar tissue doesn't have any blood supply and it's blocking an entire wall of my uterus. This poses a number of problems.
1) I have bad eggs, I'm making the numbers up but it means only about 1 in 50 of my eggs is any good.
2) I don't stim well (I don't respond to the drugs). Typically, people doing IVF will have anywhere between 5 - 15 eggs retrieved which can then be fertilized into embryos. On my 3 previous IVFs, I had 1 egg, 3 eggs and 4 eggs that fertilized, although most were crappy eggs.
3) If there is no blood supply, there is nowhere for the embryo to implant. With my limited chances from #1 and #2 above, I don't want to decrease it by another 50% if the embryo decides to implant on the scar tissue side instead of the clean side.
All in all, this does not bode well. What to do? Apparently I need to have another HSG test (massive x-ray/ultrasound where they shoot dye up your hoo-ha) to see if there is any opening in my fallopian tube and to determine how massive the scar tissue is. Essentially, the RE is trying to figure out where/how he'll be able to cut the scar tissue out. Once that is decided...
I need to have another hysteroscopy, the same surgery I had three weeks ago. But this time, they'll be cutting the scar tissue out. My RE assured me that since scar tissue doesn't have any blood supply, I shouldn't have any issues with bleeding beyond a normal hysteroscopy. However, in order to prevent additional scar tissue from forming while my body recovers from surgery, they will insert a balloon into my uterus to keep the sides from touching each other. I'll keep it in for 3 days, then have it taken out at a normal office visit. It doesn't sound like any of this will be very pleasant.
Right after the surgery, I'll be put on massive doses of estrogen and progesterone for the next week or so. With the massive hormones and balloon shoved up me, don't be surprised if I complain of bloating. I don't quite recall the reason for all the estrogen and progesterone, but after that I should get another AF and be ready to start the IVF cycle.
On another venting side note about Rx issues, I had noted that my Bravelle finally shipped - yay! But that was a week ago and it has not arrived. It's coming via USPS Express International and requires a signature. I even paid the extra $89 for Speed Shipping which normally has it arrive in 3-4 days. I called about it last Friday, they said it was in the US. Tracking finally saw it in NY on Saturday. Sunday night it left Houston and was supposed to arrive today. I worked from home today in order to sign for it, but alas, it is still not here. I'm going to have to work from home again tomorrow to get the package, because going to the post office and waiting 30-45 minutes in line is probably worse, since they are only open during my work hours, or the time I have with my DS.
A regular theme throughout TTC#1 was...can I just catch a break? I'm starting to feel that way all over again. Why, oh why, doesn't *anything* just work smoothly?
1) I have bad eggs, I'm making the numbers up but it means only about 1 in 50 of my eggs is any good.
2) I don't stim well (I don't respond to the drugs). Typically, people doing IVF will have anywhere between 5 - 15 eggs retrieved which can then be fertilized into embryos. On my 3 previous IVFs, I had 1 egg, 3 eggs and 4 eggs that fertilized, although most were crappy eggs.
3) If there is no blood supply, there is nowhere for the embryo to implant. With my limited chances from #1 and #2 above, I don't want to decrease it by another 50% if the embryo decides to implant on the scar tissue side instead of the clean side.
All in all, this does not bode well. What to do? Apparently I need to have another HSG test (massive x-ray/ultrasound where they shoot dye up your hoo-ha) to see if there is any opening in my fallopian tube and to determine how massive the scar tissue is. Essentially, the RE is trying to figure out where/how he'll be able to cut the scar tissue out. Once that is decided...
I need to have another hysteroscopy, the same surgery I had three weeks ago. But this time, they'll be cutting the scar tissue out. My RE assured me that since scar tissue doesn't have any blood supply, I shouldn't have any issues with bleeding beyond a normal hysteroscopy. However, in order to prevent additional scar tissue from forming while my body recovers from surgery, they will insert a balloon into my uterus to keep the sides from touching each other. I'll keep it in for 3 days, then have it taken out at a normal office visit. It doesn't sound like any of this will be very pleasant.
Right after the surgery, I'll be put on massive doses of estrogen and progesterone for the next week or so. With the massive hormones and balloon shoved up me, don't be surprised if I complain of bloating. I don't quite recall the reason for all the estrogen and progesterone, but after that I should get another AF and be ready to start the IVF cycle.
On another venting side note about Rx issues, I had noted that my Bravelle finally shipped - yay! But that was a week ago and it has not arrived. It's coming via USPS Express International and requires a signature. I even paid the extra $89 for Speed Shipping which normally has it arrive in 3-4 days. I called about it last Friday, they said it was in the US. Tracking finally saw it in NY on Saturday. Sunday night it left Houston and was supposed to arrive today. I worked from home today in order to sign for it, but alas, it is still not here. I'm going to have to work from home again tomorrow to get the package, because going to the post office and waiting 30-45 minutes in line is probably worse, since they are only open during my work hours, or the time I have with my DS.
A regular theme throughout TTC#1 was...can I just catch a break? I'm starting to feel that way all over again. Why, oh why, doesn't *anything* just work smoothly?
Wednesday, August 4, 2010
MRI Results
I called for results. The nurse read the radiologist report and said that everything looks good and I'm fine. I asked, then how do you explain that the doctor doing my hysteroscopy couldn't see the end of my right fallopian tube and thought my uterus looks small? The nurse said she would talk to the RE.
The call back said that Doc G. reminded the nurse of the issues with my c-section and that the blood pooling in my uterus could cause scar tissue preventing implantation. Doc G. is going to look through all the radiology films himself rather than taking the radiologist report. This is good that he's taking it seriously and will be confirming everything before we start. The bad news is it could take well over a week. The waiting game continues.
On a positive note, I just had my TSH checked and it's holding steady at 1.76. And the UK got their delivery of Bravelle and my drugs have shipped. According to the tracking number they aren't in the US yet but I should have them in a few days.
Once we get the go ahead, there are still many more drugs I'll need to order (steroids, estrogen, progesterone, antibiotics, valium, blood thinners, etc..), but the heavy hitting expensive ones will all be in hand.
The call back said that Doc G. reminded the nurse of the issues with my c-section and that the blood pooling in my uterus could cause scar tissue preventing implantation. Doc G. is going to look through all the radiology films himself rather than taking the radiologist report. This is good that he's taking it seriously and will be confirming everything before we start. The bad news is it could take well over a week. The waiting game continues.
On a positive note, I just had my TSH checked and it's holding steady at 1.76. And the UK got their delivery of Bravelle and my drugs have shipped. According to the tracking number they aren't in the US yet but I should have them in a few days.
Once we get the go ahead, there are still many more drugs I'll need to order (steroids, estrogen, progesterone, antibiotics, valium, blood thinners, etc..), but the heavy hitting expensive ones will all be in hand.
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