The last fifteen months have been hard on me, physically. Let's recap:
Jan 2016 - Missed miscarriage discovered, d&c.
March 2016 - Natural miscarriage
April 2016 - Natural miscarriage
May 2016 - Saline sonogram reveals scar tissue and thin lining
May 2016 - Operative hysteroscopy to remove scar tissue
June 2016 - HSG with catastrophic reaction & results
July 2016 - Stims for first injectible cycle
August - October 2016 - Morning sickness, lost 6% of body weight by the end of the first trimester
October 2016 - Pprom. Severe damage to digestive system. Constant pain.
November 2016 - Pain. Bedrest. Infection. 26 hours of labor. 2 emergency surgeries. Antibiotics.
December - January 2017 - Pain. Ulcers throughout digestive system. Saline sonogram reveals major scar tissue.
February 2017 - Pain. Operative hysteroscopy, balloon stent, estrogen. FemVue procedure. Ear infection, virus, fever.
March 2017 - Stims for second injectible cycle.
When I was a kid, my mom had this picture of a kitten hanging onto a rope. The words on the picture read "When you get to the end of your rope, tie a knot and hang on." I was hopeful that once the ulcers healed and I wasn't in constant pain, things would be better. Back to normal, whatever that was. That hope -the hope of 'back to normal' - was the knot I was holding onto, as I hung at the end of my rope.
It's really coming unraveled. I noticed during the last few ultrasounds and the TI that the parts of my anatomy involved felt unusually uncomfortable. They were raw, which I remembered from my last time on Estrace, but everything also started to feel a bit swollen. As it turns out, 'a bit' is a dramatic understatement. Everything south of the border is swollen to proportions identical to those seen at my two week post-partum visit. And at that visit, my doctor's exact words were "You poor thing, you're so swollen." You know when an OB feels the need to tell you you look bad post-partum, you look bad.
I don't know what's causing this. The Estrace? Maybe, it's got a ton of dye in it, and I know I'm sensitive to that. The feminine hygiene products I've used to keep the Estrace from staining my clothes? Maybe. The soap DH and I have used to clean up before and after TI? That's a good candidate, and would explain a lot. All I can tell you is that I hurt, it hurts to wear clothing, but I'm now on estrace and prometrium, so going commando is 100% not an option. Plus, it's 15 degrees outside. Brrr!
That would have been enough to start my knot unraveling, but no. There's more. I also have a UTI. Bad enough to come with a fever and constant pain, plus burning. I've been started on Macrobid, and taken a day's worth of Azo to try to manage the pain. Which is, of course, just what I want to be doing when there's hopefully a little embryo trying to grow and settle in. Yep, adding more medications sounds great. I also have a history of chronic UTI's that I finally shook 6 years ago when a urologist put me on 6 months of low dose marcocrystal. The thought of going back into that constant UTI cycle, after everything else, is pretty close to doing me in.
Showing posts with label HSG. Show all posts
Showing posts with label HSG. Show all posts
Monday, March 13, 2017
Friday, February 3, 2017
Tiny Bubbles
I am cramping and bleeding!!!
You might wonder why that statement merits multiple exclamation points, but it's simple: I'm getting a period. That means that surgery seems to have made things better. With the Asherman's, my last pre-surgery period bordered on non-existent. That's because the scar tissue prevented an endometrial lining from forming. No lining = light period. No lining also equals nowhere for an embryo to implant. So evidence that my lining is restored is a big, happy deal.
This leads us to the next hurdle: tubal patency. In light of the infection I had in November, my cadre of medical professionals and I are all concerned about the condition of my tubes. If they're blocked, then I'm faced with the choice of IVF or the end of the road.
So it's time to test my tubes. But herein lies yet another problem: my last HSG went catastrophically wrong. It showed only one open tube and almost no uterus. Further, within hours afterward, I was swollen and in so much abdominal pain that I couldn't stand upright. My RE and I both suspect that the image was invalid because my body reacted badly to the HSG/contrast. All of this means that another HSG is off the table.
My OB mentioned a product called FemVue. FemVue's website, in addition to having a bunch of dumb looking women on it (actually, they look like smart women who have been told to look stupid for photos), will tell you that it uses bubbles and ultrasound to test tubal patency. There was one problem, though: my OB has never used it. She suggested I contact my RE to get her thoughts on testing my tubes. If my RE didn't have ideas, my awesome OB would learn how to use FemVue, and we'd proceed down that path.
So I talked to my RE's office. I had to make another appointment to talk to my RE, which sucks given my lack of insurance coverage, but falls under the heading of 'it is what it is'. The awesome news was that she's not only familiar with FemVue, but did research on it back in med school. I will be in very good hands with her. The less awesome news? Per my RE, her research findings were that women reported FemVue to be more painful than traditional HSG.
The end result is that I go in next Friday to see if bubbles can shed light on the status of my tubes. One more week and we'll know if there's a path forward or not. I'm scared. I'm not sure how much more bad news I can handle, but better to know than not, right?
You might wonder why that statement merits multiple exclamation points, but it's simple: I'm getting a period. That means that surgery seems to have made things better. With the Asherman's, my last pre-surgery period bordered on non-existent. That's because the scar tissue prevented an endometrial lining from forming. No lining = light period. No lining also equals nowhere for an embryo to implant. So evidence that my lining is restored is a big, happy deal.
This leads us to the next hurdle: tubal patency. In light of the infection I had in November, my cadre of medical professionals and I are all concerned about the condition of my tubes. If they're blocked, then I'm faced with the choice of IVF or the end of the road.
So it's time to test my tubes. But herein lies yet another problem: my last HSG went catastrophically wrong. It showed only one open tube and almost no uterus. Further, within hours afterward, I was swollen and in so much abdominal pain that I couldn't stand upright. My RE and I both suspect that the image was invalid because my body reacted badly to the HSG/contrast. All of this means that another HSG is off the table.
My OB mentioned a product called FemVue. FemVue's website, in addition to having a bunch of dumb looking women on it (actually, they look like smart women who have been told to look stupid for photos), will tell you that it uses bubbles and ultrasound to test tubal patency. There was one problem, though: my OB has never used it. She suggested I contact my RE to get her thoughts on testing my tubes. If my RE didn't have ideas, my awesome OB would learn how to use FemVue, and we'd proceed down that path.
So I talked to my RE's office. I had to make another appointment to talk to my RE, which sucks given my lack of insurance coverage, but falls under the heading of 'it is what it is'. The awesome news was that she's not only familiar with FemVue, but did research on it back in med school. I will be in very good hands with her. The less awesome news? Per my RE, her research findings were that women reported FemVue to be more painful than traditional HSG.
The end result is that I go in next Friday to see if bubbles can shed light on the status of my tubes. One more week and we'll know if there's a path forward or not. I'm scared. I'm not sure how much more bad news I can handle, but better to know than not, right?
Sunday, January 29, 2017
It Wasn't Mylar
Surgery took place as planned back on the 18th. Being back at the hospital was indeed hard. I might have cried a bit in the waiting room. I might have cried again post-op.
Surgery itself went well. During the follow-up appointment, my OB told me, and pathology confirmed, I had scar tissue and embedded retained placenta in my uterus. I suppose it's no surprise with what happened.
My OB cleaned everything out. Due to the nature of the scarring (Asherman's), she left behind a balloon catheter for a week. It looked like this:
It was the most miserable thing I've dealt with in this entire journey. In my mind, I'd assumed that everything would stay inside me. I know that sometimes IUDs are used for Asherman's patients, and I've had an IUD that only had a tiny string in my vagina. I just assumed this would be similar.
Nope. Wrong on all counts. First off, that tubing is just slightly smaller than a quarter of an inch. Not at all like the string on an IUD. Having a string the width of a thread coming out of your cervix is a very different experience than having a .25" tube coming out.
Second, the tubing was long. Long enough to go through my cervix, and vagina, and hang a good few inches outside my body. From a practical perspective, that meant that anytime I moved, stood up, sat down, or rolled over, the tubing got pulled on a bit. Tubing that was going through my cervix and into my uterus. Imagine what that might feel like. On second thought, don't. It sucked, no one should deal with that.
Third, there was a hard plastic connector on the end of the tubing. It allows the balloon to be filled with saline. That's great. Except from a practical perspective. From that perspective, no matter which way the tubing points, that hard plastic connector is going to be jabbing you in a sensitive spot of your anatomy.
Finally, surgery made my digestive system unhappy. Consider the logistics of trying to keep a dangling tube and connector out of the way as you deal with what you have to deal with when your digestive system is unhappy. This is especially fun in my case, since I know the bacterial infection that took my girls and led me to this point in my life was largely comprised of bacteria found in the digestive tract. And here was a fucking superhighway going right into my ute.
It sucked. But it's out, and it's over, and now we move on to the next hurdle: figuring out if the surgery worked and if my tubes are clear. More on that to come.
Surgery itself went well. During the follow-up appointment, my OB told me, and pathology confirmed, I had scar tissue and embedded retained placenta in my uterus. I suppose it's no surprise with what happened.
My OB cleaned everything out. Due to the nature of the scarring (Asherman's), she left behind a balloon catheter for a week. It looked like this:
Nope. Wrong on all counts. First off, that tubing is just slightly smaller than a quarter of an inch. Not at all like the string on an IUD. Having a string the width of a thread coming out of your cervix is a very different experience than having a .25" tube coming out.
Second, the tubing was long. Long enough to go through my cervix, and vagina, and hang a good few inches outside my body. From a practical perspective, that meant that anytime I moved, stood up, sat down, or rolled over, the tubing got pulled on a bit. Tubing that was going through my cervix and into my uterus. Imagine what that might feel like. On second thought, don't. It sucked, no one should deal with that.
Third, there was a hard plastic connector on the end of the tubing. It allows the balloon to be filled with saline. That's great. Except from a practical perspective. From that perspective, no matter which way the tubing points, that hard plastic connector is going to be jabbing you in a sensitive spot of your anatomy.
Finally, surgery made my digestive system unhappy. Consider the logistics of trying to keep a dangling tube and connector out of the way as you deal with what you have to deal with when your digestive system is unhappy. This is especially fun in my case, since I know the bacterial infection that took my girls and led me to this point in my life was largely comprised of bacteria found in the digestive tract. And here was a fucking superhighway going right into my ute.
It sucked. But it's out, and it's over, and now we move on to the next hurdle: figuring out if the surgery worked and if my tubes are clear. More on that to come.
Friday, June 24, 2016
Verdict is. . . .
There are times when I feel truly bad for medical professionals. They spend years, decades even, studying and training. They continue learning as they practice and complete CE. Still, the human body is an amazingly complex system, and not every human's complexities follow an expected pattern. That means there are times when the best explanation a medical professional can give is, "I don't know" or "It doesn't make sense."
So, what was the outcome of my follow up appointment? Well, the saline sono, taken in early May, and the HSG from last Friday both suggest a horrendous case of Asherman's syndrome. But both of those are imaging techniques that don't directly visualize the uterus. The hysteroscopy, with photos taken after the saline sono but before the HSG, shows a normal uterus. The surgical notes written by the doctor who performed it didn't indicate any evidence of Asherman's, or anything other than mild scarring. The actual pictures should be the gold standard, but they are completely inconsistent with the sono and HSG. So the verdict? "It doesn't make sense."
Where does that leave us? Well, we could keep doing tests. Maybe we'd start getting consistent results, maybe not. Either way, we've now done all the tests that can be done, so we'd have to start repeating things. Verdict: probably not enough incremental value to be worth the drawbacks. Alternately, we can go back to the original plan: an injectable cycle in July, with monitoring of lining and follicles. Verdict: This approachwill should tell us how my lining responds, which is a critical part of the question. The risk is that it won't tell us if both tubes are open. We could spend the money and the time on the cycle, and ovulate on the left side, where we don't know if my tube is open.
Total cost of more testing versus an injectable cycle will probably be similar. If they run multiple tests, that would be more expensive. It all comes down to a question of what really matters? And what really matters is: can I grow a lining that will support an embryo? Going the injectable route should answer that, because if I do have severe Asherman's syndrome, I won't grow sufficient lining no matter what medications they throw at me. If my uterus is healthy enough to grow a lining, it probably means the HSG was flawed, and I'm not as worried about tubal patency.
So, we will try the old fashioned way this cycle. We'll pray for a healthy, fully implanted embryo out of that. If I do get a positive test, we'll monitor the hell out of it! I am not optimistic, since I've had continued spotting since the HSG, but hey, I'm not going to turn down the excuse to spend some quality time with DH. ;) If this cycle doesn't work out, I call C.CRM on Day 1 and go in for Day 2 or 3 labs and an ultrasound, and then we start drugs and see what happens.
How will it all work out? Well, I'll give the most common answer from my own profession, which also deals with human beings and their irregularities: "It depends!"
So, what was the outcome of my follow up appointment? Well, the saline sono, taken in early May, and the HSG from last Friday both suggest a horrendous case of Asherman's syndrome. But both of those are imaging techniques that don't directly visualize the uterus. The hysteroscopy, with photos taken after the saline sono but before the HSG, shows a normal uterus. The surgical notes written by the doctor who performed it didn't indicate any evidence of Asherman's, or anything other than mild scarring. The actual pictures should be the gold standard, but they are completely inconsistent with the sono and HSG. So the verdict? "It doesn't make sense."
Where does that leave us? Well, we could keep doing tests. Maybe we'd start getting consistent results, maybe not. Either way, we've now done all the tests that can be done, so we'd have to start repeating things. Verdict: probably not enough incremental value to be worth the drawbacks. Alternately, we can go back to the original plan: an injectable cycle in July, with monitoring of lining and follicles. Verdict: This approach
Total cost of more testing versus an injectable cycle will probably be similar. If they run multiple tests, that would be more expensive. It all comes down to a question of what really matters? And what really matters is: can I grow a lining that will support an embryo? Going the injectable route should answer that, because if I do have severe Asherman's syndrome, I won't grow sufficient lining no matter what medications they throw at me. If my uterus is healthy enough to grow a lining, it probably means the HSG was flawed, and I'm not as worried about tubal patency.
So, we will try the old fashioned way this cycle. We'll pray for a healthy, fully implanted embryo out of that. If I do get a positive test, we'll monitor the hell out of it! I am not optimistic, since I've had continued spotting since the HSG, but hey, I'm not going to turn down the excuse to spend some quality time with DH. ;) If this cycle doesn't work out, I call C.CRM on Day 1 and go in for Day 2 or 3 labs and an ultrasound, and then we start drugs and see what happens.
How will it all work out? Well, I'll give the most common answer from my own profession, which also deals with human beings and their irregularities: "It depends!"
Sunday, June 19, 2016
Before and After
So, I love me a good before & after picture. Home reno before and after? Yes! Haircut before and after? Check! Recipe ingredients before to beautiful meal after? Bring it on! Today's before and after might not be for everyone. Today's before is my uterus at the start of the operative hysteroscopy. The after is my uterus after the scar tissue was cleaned up. If you don't enjoy viewing pictures of people's internal organs, don't scroll down.
So, here's the before photo. It looks rather like a tunnel, no? To the left and right are the ostia, or the openings to the fallopian tubes. From what the doctor explained, some of the white patches are scar tissue. Overall, there isn't much white where it shouldn't be, which means there wasn't much scar tissue from the January d&c.
Now for the after photo. In this photo, you can see everything is smooth and pink. There's less scar tissue, and the pink suggests that my endometrium is healthy and should be capable of a pregnancy.
There are two layers of endometrium in a healthy uterus, a basal layer, which remains at all time, and a functional layer, which is shed monthly. We're pretty sure I have trouble with my functional layer not getting thick enough, or having the correct pattern, to support a pregnancy. However, based on these photos, which were taken May 23rd, there shouldn't be anything blocking my uterus. This is what makes Friday's HSG so inexplicable.
At this point, I'm praying for an answer that isn't the end of our journey, and I'm focusing on the after picture, because it looks like it should.
So, here's the before photo. It looks rather like a tunnel, no? To the left and right are the ostia, or the openings to the fallopian tubes. From what the doctor explained, some of the white patches are scar tissue. Overall, there isn't much white where it shouldn't be, which means there wasn't much scar tissue from the January d&c.
Now for the after photo. In this photo, you can see everything is smooth and pink. There's less scar tissue, and the pink suggests that my endometrium is healthy and should be capable of a pregnancy.
There are two layers of endometrium in a healthy uterus, a basal layer, which remains at all time, and a functional layer, which is shed monthly. We're pretty sure I have trouble with my functional layer not getting thick enough, or having the correct pattern, to support a pregnancy. However, based on these photos, which were taken May 23rd, there shouldn't be anything blocking my uterus. This is what makes Friday's HSG so inexplicable.
At this point, I'm praying for an answer that isn't the end of our journey, and I'm focusing on the after picture, because it looks like it should.
Cause or Effect?
Just over five years ago, shortly after I became unable to eat gluten, I had an incident. One afternoon I started having extreme bloating, and the kind of horrific gas that usually accompanies gluten-poisoning for me. By the early morning hours, I was in the bathroom, while my digestive system emptied itself in waves. Once again, that's what normally happens when I come into contact with gluten. That's why I religiously avoid it! Along side the normal symptoms was intense abdominal pain. It hurt to touch my stomach. It hurt to put on clothes and have my seatbelt across me. Going over bumps hurt. That was something I'd never experienced before.
I went to the doctor the next morning. She was worried about my appendix, so she sent me for an MRI. The MRI showed such extreme swelling in my intestines that the "T" shape of my IUD, and the uterus containing it, was actually horizontal instead of vertical. My intestines had pushed my uterus out of the way with their swelling.
What caused that? Well, after the MRI, a different doctor, a DO, sat down with me and asked me what I did for a living. When I told him I was a manager, he held my hand, and while gently patting it, informed me that I had an intestinal blockage caused by too much stress and not enough fiber in my diet. Then he turned to my husband and told him to "take better care of her." Mind you, he never asked about my diet, or about my stress level. I guess he just assumed a woman manager must be stressed, eat crap, and need care from her male protector.
I saw a GI specialist shortly thereafter. He looked at my films, then asked me detailed questions about my diet (30 grams of fiber a day via beans, brown rice, almonds, and fruits & veggies - documented via months of My Fitness Pal logs) and my stress level (pretty low as I'd just gotten my dream job managing an awesome team of people doing work I loved). When he had the answers, he politely told me I was an idiot for eating week-old leftover rice. He thought I'd gotten food poisoning, which explained the swelling and pain.
To this day, I don't know which of them was right, but although my stress level has gone up at times, and my fiber intake has gone down, I've never again had the issue - and I've stopped eating brown rice!
The day before the HSG, I was feeling oddly bloated. I had assumed it was because I'd upped my intake of gluten-free oats, which I have trouble with. I'd made a mental note to change my breakfast meal plan next week. In the hours after the HSG, I moved from slightly bloated to massively bloated, and in substantial pain. I couldn't take a deep breath without pain. I couldn't stand up straight without pain. I spent hours in the bathroom early Saturday morning, alternating between the floor and the toilet, in agony. It was like the experience 5 years ago, only worse.
I'll ask my doctor when I see her, but I wonder if I had swelling in my digestive tract before the HSG? If my uterus had been extremely compressed due to unhappy intestines, might that have produced the never-before-seen disappearing uterus on the HSG? Alternately, it's possible the digestive symptoms could have been caused by stress or a reaction to the contrast. Ugh. No clear answers, just more unhappiness.
I went to the doctor the next morning. She was worried about my appendix, so she sent me for an MRI. The MRI showed such extreme swelling in my intestines that the "T" shape of my IUD, and the uterus containing it, was actually horizontal instead of vertical. My intestines had pushed my uterus out of the way with their swelling.
What caused that? Well, after the MRI, a different doctor, a DO, sat down with me and asked me what I did for a living. When I told him I was a manager, he held my hand, and while gently patting it, informed me that I had an intestinal blockage caused by too much stress and not enough fiber in my diet. Then he turned to my husband and told him to "take better care of her." Mind you, he never asked about my diet, or about my stress level. I guess he just assumed a woman manager must be stressed, eat crap, and need care from her male protector.
I saw a GI specialist shortly thereafter. He looked at my films, then asked me detailed questions about my diet (30 grams of fiber a day via beans, brown rice, almonds, and fruits & veggies - documented via months of My Fitness Pal logs) and my stress level (pretty low as I'd just gotten my dream job managing an awesome team of people doing work I loved). When he had the answers, he politely told me I was an idiot for eating week-old leftover rice. He thought I'd gotten food poisoning, which explained the swelling and pain.
To this day, I don't know which of them was right, but although my stress level has gone up at times, and my fiber intake has gone down, I've never again had the issue - and I've stopped eating brown rice!
The day before the HSG, I was feeling oddly bloated. I had assumed it was because I'd upped my intake of gluten-free oats, which I have trouble with. I'd made a mental note to change my breakfast meal plan next week. In the hours after the HSG, I moved from slightly bloated to massively bloated, and in substantial pain. I couldn't take a deep breath without pain. I couldn't stand up straight without pain. I spent hours in the bathroom early Saturday morning, alternating between the floor and the toilet, in agony. It was like the experience 5 years ago, only worse.
I'll ask my doctor when I see her, but I wonder if I had swelling in my digestive tract before the HSG? If my uterus had been extremely compressed due to unhappy intestines, might that have produced the never-before-seen disappearing uterus on the HSG? Alternately, it's possible the digestive symptoms could have been caused by stress or a reaction to the contrast. Ugh. No clear answers, just more unhappiness.
Friday, June 17, 2016
Reeling
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.
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.
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