The HSG went catastrophically badly. To quote my RE, "I've never seen an image like that in my career." The radiologist was also mystified.
Instead of seeing a normal uterus and two fallopian tubes, or hell, even a unicornate uterus and one tube, there was the tiniest nodule of a uterus and one tube. In other words, the HSG showed fundamentally no open uterine cavity. No uterine cavity means no pregnancy.
I had a hysteroscopy a month ago - I have the images from it and the OB who did it said everything looked great. The hysteroscopy I had to remove my first IUD back in 2012 also ended with being told I had a good looking uterus. How the fuck did I go from there to an image with no uterine cavity and only one tube? The only HSG images even remotely similar to mine are ones with tremendously severe Asherman's - and my HSG showed even less of a uterine cavity than those.
If this isn't just a fuck up in the testing, which is what I'm praying for, then I'm scared we're at game over. I'll regroup with my RE next week if I can get an appointment. Meanwhile, I'm spending the weekend trying to remember to breathe.
I will get through this. Somehow, I will get through this.
Friday, June 17, 2016
Thursday, June 16, 2016
Not Gonna Be A Problem
I'm supposed to start taking antibiotics for the HSG tomorrow. I went to the pharmacy to get them today. The pharmacist gave me the use instructions (take two before the procedure, one each day after). Then before I left, she asked me "Oh, are you on oral birth control?"
I knew, immediately, that she was asking so she could warn me that antibiotics reduce the effectiveness of birth control. So I did the only thing I could: I laughed. I couldn't help it.
After that, I told her that no, I wasn't on bc, but even if I was, I'm pretty sure the efficacy wouldn't be lowered any for me by antibiotic use!
Some times you just have to laugh.
Wish me luck tomorrow?
I knew, immediately, that she was asking so she could warn me that antibiotics reduce the effectiveness of birth control. So I did the only thing I could: I laughed. I couldn't help it.
After that, I told her that no, I wasn't on bc, but even if I was, I'm pretty sure the efficacy wouldn't be lowered any for me by antibiotic use!
Some times you just have to laugh.
Wish me luck tomorrow?
Wednesday, June 15, 2016
What Goes Up, Must Come Down
Am I the only one whose moods can shift on a dime?
Yesterday, I felt really good after my appointment. I had a game plan. I trust this doctor, even when her advice conflicts with something I might be willing to try, because she refers to research. Everything seemed to be going well. I dropped DH at the airport after the RE appointment and then headed home to finish up work that needed to be sent out that day. Things were looking up.
Then I pulled onto my street to find the beautiful tree in our yard blocking half the street. Not going to lie, that sight took me back down. I love our house for the many trees here. The tree in the front was beautiful. Instead of getting my work done, I scrambled, at 4:30 pm, to find a tree service to come out and remove it.
While I was making calls, the next storm moved in, with thunder, lightning and heavy rain. Thus, it should not have surprised me to get a text from DH saying his flight might be cancelled. Half an hour later, he confirmed that he wasn't heading out that night, but would be on the 4:45 am flight the next morning. Thus, I drove through the flooding to bring him home, worked until 9:00, then slept for a few hours before getting up at 3:00 to take him back to the airport.
Now, tired, cranky, stuck working from home so I can meet the tree guys, and out $1,500 for the tree work, I'm feeling vastly more down. I'm grateful to be able to work from home and afford the cost, but it's still a bummer. I guess the up(side) is that I'll have fewer leaves to rake this fall?
Yesterday, I felt really good after my appointment. I had a game plan. I trust this doctor, even when her advice conflicts with something I might be willing to try, because she refers to research. Everything seemed to be going well. I dropped DH at the airport after the RE appointment and then headed home to finish up work that needed to be sent out that day. Things were looking up.
Then I pulled onto my street to find the beautiful tree in our yard blocking half the street. Not going to lie, that sight took me back down. I love our house for the many trees here. The tree in the front was beautiful. Instead of getting my work done, I scrambled, at 4:30 pm, to find a tree service to come out and remove it.
While I was making calls, the next storm moved in, with thunder, lightning and heavy rain. Thus, it should not have surprised me to get a text from DH saying his flight might be cancelled. Half an hour later, he confirmed that he wasn't heading out that night, but would be on the 4:45 am flight the next morning. Thus, I drove through the flooding to bring him home, worked until 9:00, then slept for a few hours before getting up at 3:00 to take him back to the airport.
Now, tired, cranky, stuck working from home so I can meet the tree guys, and out $1,500 for the tree work, I'm feeling vastly more down. I'm grateful to be able to work from home and afford the cost, but it's still a bummer. I guess the up(side) is that I'll have fewer leaves to rake this fall?
Tuesday, June 14, 2016
We Have a Plan!
Today's consult with CCRM's local office went well. The doctor asked me to sum up what's going on in my own words, but also seemed to be well versed in my medical history. It was clear she had read all the files sent over, as she brought up things I didn't mention. She agreed with the goal of getting a pregnancy that lasts for 9 months, and didn't claim the issues to date were bad luck. While she agreed that my AMH means we should move with some speed, she also reminded me that it's really most relevant to IVF. Since we've gotten pregnant 3 times thus far, she told me, nicely, to stop worrying about it.
Unlike my OB, who said that uterine lining thickness only matters for IVF, Dr. B at CCRM expressed concern about my lining based on the sonohystogram in May. DH asked her to explain and she said that the lining helps to nourish the pregnancy during/around implantation, and therefore is important. Her target is 8mm. She noted that thin lining can occur when you have a short follicular phase. Alas, that isn't an explanation for me, since I typically have a 14-17 day follicular phase, which is normal. Increasing estrogen should help build the lining, and we know from my last labs that my estradiol is low.
Given all of this, her recommendation was twofold. First, proceed with additional testing of other potential factors to explain the losses. I'll cover the testing in a later post. Second, unless that testing identifies a cause, we'll treat the lining issue. Doing that will entail FSH injections and vaginal estrace to build lining, along with monitoring and timed intercourse. Post ovulation, I'll use progesterone for luteal phase support, although she doesn't think there was any issue with my progesterone level of 14 during the last chemical pregnancy. Testing is to be completed this cycle, monitoring and medication next cycle.
I also asked about lifestyle changes I could make. I was told no caffeine, no alcohol, keep eating fruits and veggies, keep exercising. Easy peasy - all of that I already do. I asked about DHEA due to my low AMH and she said she'd just read a meta analysis that found DHEA had no impact on DOR other than causing acne. She's taken it off her recommendations list. Note to self: she told me she'd give me her supplements list, but she didn't, so I need to follow up.
Overall I feel really good about this as an approach to see if we can address the miscarriages. I have a few follow up questions I'll need to ask the nurses, that didn't arise until after I looked at the written instructions, but I don't think that will be a huge problem.
Unlike my OB, who said that uterine lining thickness only matters for IVF, Dr. B at CCRM expressed concern about my lining based on the sonohystogram in May. DH asked her to explain and she said that the lining helps to nourish the pregnancy during/around implantation, and therefore is important. Her target is 8mm. She noted that thin lining can occur when you have a short follicular phase. Alas, that isn't an explanation for me, since I typically have a 14-17 day follicular phase, which is normal. Increasing estrogen should help build the lining, and we know from my last labs that my estradiol is low.
Given all of this, her recommendation was twofold. First, proceed with additional testing of other potential factors to explain the losses. I'll cover the testing in a later post. Second, unless that testing identifies a cause, we'll treat the lining issue. Doing that will entail FSH injections and vaginal estrace to build lining, along with monitoring and timed intercourse. Post ovulation, I'll use progesterone for luteal phase support, although she doesn't think there was any issue with my progesterone level of 14 during the last chemical pregnancy. Testing is to be completed this cycle, monitoring and medication next cycle.
I also asked about lifestyle changes I could make. I was told no caffeine, no alcohol, keep eating fruits and veggies, keep exercising. Easy peasy - all of that I already do. I asked about DHEA due to my low AMH and she said she'd just read a meta analysis that found DHEA had no impact on DOR other than causing acne. She's taken it off her recommendations list. Note to self: she told me she'd give me her supplements list, but she didn't, so I need to follow up.
Overall I feel really good about this as an approach to see if we can address the miscarriages. I have a few follow up questions I'll need to ask the nurses, that didn't arise until after I looked at the written instructions, but I don't think that will be a huge problem.
Friday, June 10, 2016
From Type A to Type D-
I'm a few days off from my consult with the RE, and trying to understand why my recent test results are impacting me (mentally) the way they are. That low AMH number is really eating at me. AMH is a gauge of ovarian reserve. It gives you a ballpark idea of how long you have until perimenopause. If you need IVF, it also predicts how your ovaries will respond to stimulation. A few studies have shown that independent of these things, low AMH also correlates with lower live birth rates, but the correlation is relatively small and hasn't been consistently reported.
All it takes to get pregnant is a single egg and I've proven, three times now, that I ovulate and produce eggs. So why does my low AMH bother me?
I can come up with two reasons. Number one is that I just wanted some tiny piece of good news amidst the shit show that is this process. I really wanted to be able to say 'cool, I don't have to worry about that!' or 'groovy - I'm normal in at least one respect.' Instead, I'm so far off normal that I just have to pray we don't need IVF, because my ovaries are not likely to respond well.
On reflection, reason number two is pretty embarrassing. You see, if you haven't noticed from earlier posts, I've been an overachiever for most of my life. I'm a Type A personality that's gradually relaxed into a Type A-. I graduated magna cum laude. I went to a top PhD program in my field. I moved up the career ladder quickly. When I decided to run for the first time, I set my sights on a half marathon, and completed it. My first organized bike ride was a century (100 miles). I screwed my left knee up so badly during the century that I couldn't put pressure on it after mile 70. But I don't like to fail, so I rode the last 30 miles only my right leg. Like I said, I achieve.
I achieve, but my ovaries don't. My ovaries apparently missed out on the overachieving message. Despite the fact that I went 15 years without periods, and therefore spent 15 years not drawing down my ovarian like a normal woman, I am still running out of eggs. In other words, my ovaries are underachieving. As much as I'd like to say that I don't care, that the only thing that matters is getting one good egg, apparently that isn't true. Given the mild desire to hyperventilate that appears whenever I think about my test results, I must care a lot.
We'll see what the RE says. My numbers are slightly mysterious. AMH is low, but so is estradiol, and FSH is normal for my age. That's an unusual combination. Usually low AMH correlates with high FSH. In cases where FSH is not high, it's often suppressed due to high estradiol. Having both low estradiol and normal FSH, along with low AMH appears to be atypical. Maybe there will be some logical explanation and I'll feel better. Maybe not. Here's hoping I can elicit a bit more Type A out of the old ovaries!
All it takes to get pregnant is a single egg and I've proven, three times now, that I ovulate and produce eggs. So why does my low AMH bother me?
I can come up with two reasons. Number one is that I just wanted some tiny piece of good news amidst the shit show that is this process. I really wanted to be able to say 'cool, I don't have to worry about that!' or 'groovy - I'm normal in at least one respect.' Instead, I'm so far off normal that I just have to pray we don't need IVF, because my ovaries are not likely to respond well.
On reflection, reason number two is pretty embarrassing. You see, if you haven't noticed from earlier posts, I've been an overachiever for most of my life. I'm a Type A personality that's gradually relaxed into a Type A-. I graduated magna cum laude. I went to a top PhD program in my field. I moved up the career ladder quickly. When I decided to run for the first time, I set my sights on a half marathon, and completed it. My first organized bike ride was a century (100 miles). I screwed my left knee up so badly during the century that I couldn't put pressure on it after mile 70. But I don't like to fail, so I rode the last 30 miles only my right leg. Like I said, I achieve.
I achieve, but my ovaries don't. My ovaries apparently missed out on the overachieving message. Despite the fact that I went 15 years without periods, and therefore spent 15 years not drawing down my ovarian like a normal woman, I am still running out of eggs. In other words, my ovaries are underachieving. As much as I'd like to say that I don't care, that the only thing that matters is getting one good egg, apparently that isn't true. Given the mild desire to hyperventilate that appears whenever I think about my test results, I must care a lot.
We'll see what the RE says. My numbers are slightly mysterious. AMH is low, but so is estradiol, and FSH is normal for my age. That's an unusual combination. Usually low AMH correlates with high FSH. In cases where FSH is not high, it's often suppressed due to high estradiol. Having both low estradiol and normal FSH, along with low AMH appears to be atypical. Maybe there will be some logical explanation and I'll feel better. Maybe not. Here's hoping I can elicit a bit more Type A out of the old ovaries!
Wednesday, June 8, 2016
Reminder to My Future Self
One of the hard parts about RPL, or probably any other not-terribly-common-but-emotionally-devastating experience, is the feeling of being alone. The feeling that no one understands what you’re going through. When well-meaning loved-ones say things like “it’ll be ok, you can always adopt” or “if you have to go through a few more miscarriages to get a good egg, so what?” or “everything happens for a reason,” it becomes extremely clear how little other people understand.
FYI, if you’re reading this blog, I want you to pinky swear, right now, that you’ll never utter any of words in quotes above to someone going through IF or RPL. If a reason exists to explain three miscarriages, $3,000 in hospital bills, and enough emotional pain that I’ve cried more in the last six months than in my entire life, it's a shitty one. If you smash your thumb with a hammer, do you tell yourself, "it happened for a reason?" No. You say a few unprintable words and feel a lot of pain. Even if it DID happen for a reason, is pointing that out in the midst of the swearing and the pain helpful? No.
In the lonely space, I’ve looked for others who can help me feel less alone. They’re out there. I wish they weren’t. I wish no one else had been through this, but even though we’re only the 1%, 1% is still a lot of couples with an unbearable number of losses. I respect every one of those ladies, I grieve for them, and I thank them for sharing so that I don’t feel so alone. I’m also trying to learn from them.
One thing I’ve noticed is how bitter some RPL survivors are. I understand it. Hearing pregnancy announcements, seeing others have what you are desperately trying for, realizing that what will cost you thousands of dollars and countless heartache comes free to women who don’t want it . . . all of that is really hard. I completely understand how those experiences breed bitterness. Every woman has the right to feel whatever she feels.
Here’s my hope for myself, though: I hope I can avoid the bitterness. Is this shit unfair? Yes! Is it awful? Yes! Has it become a huge part of my life? Unfortunately, yes. But does it eclipse all the other wonderful things in my life? I hope not.
I grew up with parents and grandparents who loved me. I have an incredible husband. I have a career that I get great satisfaction from. I get paid well. I have friends who put up with me and make me laugh. I’m able to be physically active every day. I live in a beautiful place. Even if I never get to see a heartbeat on an ultrasound, I am so fucking lucky.
I have never taken that luck for granted. I hope I never will. I hope that in those moments when the voice of bitterness kicks in, I can remember just how good things are. I’m here, in this life. I'm not a Yazidi girl being held by ISIS in Iraq, not an expectant mother with Zika in Venezuela, not any of the other horrifyingly unfair situations others are in. When it comes to unfairness, when I look at the rest of the world, I can't claim that I got the short end of the unfairness stick.
So I'm posting this today. Seven months, three losses, two surgeries, one DOR diagnosis, and thousands of dollars into this journey, I'm posting this. I'm posting it to remind my future self. Here's hoping she reads this.
Saturday, June 4, 2016
DOH! DOR
On Thursday, I learned that going to the fertility specialist at your OB's office is like going to the cosmetic surgeon at your dentist's office. He may know more about cosmetic surgery than the other dentists, but he sure isn't an expert. In this case, the OB had never heard of AMH, per his own words, not my assumption. He also claimed that endometrial thickness and pattern had no implications for pregnancy/miscarriage.
I passed him a 2015 journal article whose abstract noted sustained pregnancy is extremely rare with lining <6mm. He got flustered, insisted it wasn't really an issue, and couldn't provide any data to support that.
Anyhow, based on the numbers, my ovaries are in their mid to late 40's. AMH is 0.4, FSH is 9.5, E2 was 18. Not good. We're moving on to talk to an actual miscarriage and fertility specialist. I've scheduled an appointment with CCRM's local branch in about two weeks.
Oh yeah, the best part of the doctor visit? He told us the miscarriages were just really bad luck and that we should start trying again. He said I should ovulate soon, and I told him I had already, three days ago. He asked "did you try?" I replied, "You told us we had to wait two weeks after the hysteroscopy, and that isn't until NEXT Monday, so no, we didn't try." At that point he got upset, raised his voice, and told us to go home and try immediately. Seriously, dude, my temp's been up for 3 days. The egg ship has sailed, no matter how much you yell at me for following your bloody instructions!
Moral of the story: go to a specialist for specialist advice.
I passed him a 2015 journal article whose abstract noted sustained pregnancy is extremely rare with lining <6mm. He got flustered, insisted it wasn't really an issue, and couldn't provide any data to support that.
Anyhow, based on the numbers, my ovaries are in their mid to late 40's. AMH is 0.4, FSH is 9.5, E2 was 18. Not good. We're moving on to talk to an actual miscarriage and fertility specialist. I've scheduled an appointment with CCRM's local branch in about two weeks.
Oh yeah, the best part of the doctor visit? He told us the miscarriages were just really bad luck and that we should start trying again. He said I should ovulate soon, and I told him I had already, three days ago. He asked "did you try?" I replied, "You told us we had to wait two weeks after the hysteroscopy, and that isn't until NEXT Monday, so no, we didn't try." At that point he got upset, raised his voice, and told us to go home and try immediately. Seriously, dude, my temp's been up for 3 days. The egg ship has sailed, no matter how much you yell at me for following your bloody instructions!
Moral of the story: go to a specialist for specialist advice.
Subscribe to:
Posts (Atom)