The last few weeks have been random. Busy with work and play. I've been a little more involved/in tune with a support group for those with Asherman's which I think is a good thing, I mean that is what it is for right? It is much more encouraging to hear the success stories from other women/families on that site, and know they've all been through the same range of emotions and required patience and perseverance. Many of them for much longer than us. The literature just can't capture it all. But then the heartbreak is that much more real as well. The frustration is real, the loss and the sadness is real. I've been brought to tears by recent stories/postings. Seeing people decide to "stop trying" is hard - even though that may be the right decision for them, it is hard to imagine we might be in that position at some time too. No matter what our evolution though, I have found a need to share, educate, console and support people more than I would have predicted. I have full praise for our doctor already, and we have so much time left ahead of ourselves. If I can pass that along to someone else, that hope, then I think I need to.
This is also a weird time for us because we aren't actively doing anything right now. Obviously the recurring theme has been that of waiting, always waiting for something. I am not readily a patient person; I like to think this is a lesson I both have needed and am at least learning. So again we wait - but this time there is nothing to do while we wait. I don't even have medications to take this time around! I wait for another month to go by, knowing the last scope was clear but wondering if the scarring will still come back. We wait until I have another hysteroscopy to check my lining - I don't want to do it too soon because if it's not there I don't want to be disappointed, and just be told to wait some more. I don't want to hold out very long because what if it's fine and we could get the official go ahead? I think that is why I find myself on the AS support site more. I end up researching studies/reports to find if there is anything I can do to improve the lining. I'm much better at having patience when it is an active task.
My work schedule is looking up, and I anticipate being able to enjoy my darling daughter and husband even more often. I'm happy to be kept busy by my family and friends. And am really thankful for all the support, love and prayers being sent our way. I understand everyone has their own difficulties to conquer, and just knowing there are wonderful people that are taking some time to think about ours is uplifting. I truly believe your collective strength has helped.
Tuesday, July 10, 2012
Wednesday, July 4, 2012
Still moving forward
I realize things must be going okay when I haven't thought about updating in a while. I think I'm feeling a little shy about it because I don't want to have too much hope/excitement only to have another let down, and putting it in writing makes it real. Because honestly right now this entire adventure feels a little bit like a dream - some days a nightmare - but overall is surreal. We have experienced all ranges of emotions. And the waiting never ends. But we are still moving forward.
Since our last post I've had more hormones, actually looked forward to a period for probably the first time ever, and successfully re-navigated that adventure. So following a successful withdrawal bleed I had another hysteroscopy, this time to evaluate how much space stayed open since the balloon had been removed, how much lining was present and if tubal openings could be found. I admit I was actually nervous again for that appointment - not for the procedure itself, but for the results. I was anxious and excited and trying my best to go in level headed. It seems I'm doing that weekly - trying to stay even and rational, while still enjoying the small victories. This month we've had a few, including the most recent hysteroscopy. The appointment gets scheduled for at least an hour to allow for procedure set up, visualization, and removal of any recurring scar tissue. In my case, there was none! Not one band or closure of any corner - just an open uterus cavity. In fact, our doctor said "this is a cavity that could sustain a pregnancy" which at this point is as good as we can hope. So 20 minutes later I'm back out the door with a decent grin, a hope and a prayer. My doctor was quite pleased as well, it was encouraging to see his response.
Of course that doesn't mean we are in the clear. Other unknowns at this time are still the fallopian tubes - the openings at the uterus are open & both were seen during the study, but we won't know for sure if any scarring is up in them further until either we have another specific study call a hysterosalpingogram (HSG) or we end up pregnant. Obviously we'd prefer the later, but another delay in that is the endometrial lining. Part of the problem with Asherman's syndrome besides the scar tissue obliterating the potential space need to have/sustain a pregnancy, it also replaces the endometrium and sometimes the D&C itself causes the uterine wall to be bare, damaging the surface below the layers of lining into the muscle itself. In my case there wasn't any real space left so only a minimal area where endometrium could exist. Part of the hormones was to help the healthy layer proliferate - although on many days the only sensation I had was that of wild fluctuations in mood and (ir-)rationality. So during the hysteroscopy there was a very mottled appearance to the uterine wall - much like on a globe except red/white instead of blue/green. The red areas have already "healed" themselves, but the white areas are still bare. Now (AGAIN!) time will tell, as it is hard to predict how quickly that will fill in. So we wait some more - waiting for the endometrium to recover across the wall, and hopefully get thick and cushy. Otherwise its like trying to plant something on a concrete sidewalk instead of in a pot of nice black dirt.
Oh yea, and am I even ovulating? This is the first time in a long while it has been worth starting to think about that, but realistically my PCOS could still cause trouble with our agenda. Fortunately I would continue to see our current doctor for that as well, if it turns out we need to shift focus. But again one step at a time. That mantra helps break things up into each manageable segment of time, but while looking back the year has flown! In another couple of weeks I'll probably have another (hopefully final) hysteroscopy to check on the lining growth, maybe follow with additional ultrasounds, and move on.
Since our last post I've had more hormones, actually looked forward to a period for probably the first time ever, and successfully re-navigated that adventure. So following a successful withdrawal bleed I had another hysteroscopy, this time to evaluate how much space stayed open since the balloon had been removed, how much lining was present and if tubal openings could be found. I admit I was actually nervous again for that appointment - not for the procedure itself, but for the results. I was anxious and excited and trying my best to go in level headed. It seems I'm doing that weekly - trying to stay even and rational, while still enjoying the small victories. This month we've had a few, including the most recent hysteroscopy. The appointment gets scheduled for at least an hour to allow for procedure set up, visualization, and removal of any recurring scar tissue. In my case, there was none! Not one band or closure of any corner - just an open uterus cavity. In fact, our doctor said "this is a cavity that could sustain a pregnancy" which at this point is as good as we can hope. So 20 minutes later I'm back out the door with a decent grin, a hope and a prayer. My doctor was quite pleased as well, it was encouraging to see his response.
Of course that doesn't mean we are in the clear. Other unknowns at this time are still the fallopian tubes - the openings at the uterus are open & both were seen during the study, but we won't know for sure if any scarring is up in them further until either we have another specific study call a hysterosalpingogram (HSG) or we end up pregnant. Obviously we'd prefer the later, but another delay in that is the endometrial lining. Part of the problem with Asherman's syndrome besides the scar tissue obliterating the potential space need to have/sustain a pregnancy, it also replaces the endometrium and sometimes the D&C itself causes the uterine wall to be bare, damaging the surface below the layers of lining into the muscle itself. In my case there wasn't any real space left so only a minimal area where endometrium could exist. Part of the hormones was to help the healthy layer proliferate - although on many days the only sensation I had was that of wild fluctuations in mood and (ir-)rationality. So during the hysteroscopy there was a very mottled appearance to the uterine wall - much like on a globe except red/white instead of blue/green. The red areas have already "healed" themselves, but the white areas are still bare. Now (AGAIN!) time will tell, as it is hard to predict how quickly that will fill in. So we wait some more - waiting for the endometrium to recover across the wall, and hopefully get thick and cushy. Otherwise its like trying to plant something on a concrete sidewalk instead of in a pot of nice black dirt.
Oh yea, and am I even ovulating? This is the first time in a long while it has been worth starting to think about that, but realistically my PCOS could still cause trouble with our agenda. Fortunately I would continue to see our current doctor for that as well, if it turns out we need to shift focus. But again one step at a time. That mantra helps break things up into each manageable segment of time, but while looking back the year has flown! In another couple of weeks I'll probably have another (hopefully final) hysteroscopy to check on the lining growth, maybe follow with additional ultrasounds, and move on.
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