I don't think I ever updated on my CD2 RE visit. Let's just say it was an exercise in frustration. For context, during my first two cycles, my RE's office told me to test at home 14 days after trigger, then come in for bloodwork if I got a positive. This cycle, a different nurse called with trigger information. She didn't say when to test or what to do with the progesterone and estrace if I got a negative. I don't recall ever being told that.
So, tests turned negative and I stopped the progesterone 14 days post trigger. One day later, I emailed the clinic to see if I should also stop estrace. The nurse (a different one), told me yes, and that I needed to schedule a regroup with Dr. B before cycling again. Given how poorly the cycle went, that made sense, but it irritated the hell out of me that they didn't bother to tell me until the day I expected my period.
I scheduled the appointment, and was able to get in two days later, which turned out to be CD2. Dr. B asked me why I was there, and I told her the nursing staff wouldn't let me cycle without speaking to her. She seemed surprised and noted it would probably be a short consult. Given the cost, knowing that the doctor didn't think the appointment was necessary left me even more irritated.
We discussed my dismal lining. At one point, Dr. B asked me how I'd been taking the Estrace, and I told her that I followed the directions written on the bottle - "Twice a day, orally" - for the first several days, then switched to vaginal because I had a feeling the bottle was wrong. She stated that the fact that I'd been on it orally probably explained my lining issue.
If I'd been more on my game, I'd have asked some very pointed questions about why the prescription was wrong, and what was CCRM going to do, given that she just told me that error was likely the cause of a wasted cycle. Shame on me, I wasn't on my game, so we didn't discuss that. Honestly, I was just so relieved that she thought we were fine to try again, I let everything else slide. In retrospect, I'm pissed about that. Prescriptions from that office are wrong so often - the pharmacy wouldn't fill my estrogen last time because the prescription said to take it three times a day, "BID". Turns out that BID stands for twice a day. Three times a day, twice a day doesn't work. Another careless mistake leading to even more frustration on my part.
There was some benefit to the appointment. We discussed what else we would do to try to improve my lining. Two things came up: first, given Dr. Haney's feedback on the cerclage, we're going to up my Follistim slightly.That potentially risks twins, but should help my lining, and with the cerclage, twins should be ok. The second thing was that I mentioned my positive CE biopsy, and that I'd been treated and had a negative biopsy since that time. Dr. B. said she'd like to put me on 10 days of doxy, starting day 1 of stims, for my next cycle. I know there's research linking CE and thin lining, so I'm ok with this.
So, a lot of frustration, but hopefully a slightly higher chance of success next cycle.
Showing posts with label chronic endometritis. Show all posts
Showing posts with label chronic endometritis. Show all posts
Saturday, January 20, 2018
Tuesday, October 31, 2017
When Formalin is Not Your Friend (aka: Biopsy #3)
In general, I like my OB. Far more important than liking her, I think she's competent and will work with me on my care. Yesterday was not, however, one of our finer days together.
I went in for what I hope will be my last biopsy. She asked if I wanted to get three samples again: one for histology, one to culture for bacteria, and one to culture for yeast. Only the histology was positive last time, so it was reasonable to ask if I wanted to go through the unpleasantness of three samples. On one hand, I really hoped there was no need, and had no expectation of a need for bacteria or yeast cultures. On the other hand, if the histology comes back positive, I don't want to have to wait for another cycle to get another biopsy for bacterial culture. So we agreed to get three samples again.
She got three samples. I got up and got dressed. Just as I was about to walk out, she came back in and told me she'd put all three in formalin by accident, and you can't culture a sample that's been in formalin. If I wanted bacteria and yeast cultures, I'd have to do another biopsy.
Bloody hell.
Since we'd already run a catheter into my uterus once for the initial biopsy, it increased the chances of pushing in new bacteria and getting a false positive. Also, those biopsies are no bloody fun. I didn't want another. So I declined.
Let's hope the histology comes back negative for CE.
Other interesting notes:
October 30, 2016 was the day my water broke with the twins. During the biopsy, I mentioned to my OB that it happened a year ago. She commented that it must have been scary for me, and that she was scared, specifically that she was scared during my delivery a week later. I knew things were bad during delivery, but hearing that they were bad enough for my OB to be scared. . . I guess that's why my Dad, who saw them wheel me out to surgery that day, encouraged me to think about my own health before continuing to try to get pregnant.
I've had bleeding since the biopsy. More bleeding than my last period. I'm trying to tell myself that it's a good sign that my lining isn't shot. I have no idea if that's true or not, but it's giving me hope so I'll hold to it!
I told my OB that if I'm able to get pregnant again, I'll be coming to see her pretty early on, since I'll want the NIPT referral as early as possible due to the TAC. She told me she's happy to see me weekly if I'm pregnant again. She may regret saying that! :)
I went in for what I hope will be my last biopsy. She asked if I wanted to get three samples again: one for histology, one to culture for bacteria, and one to culture for yeast. Only the histology was positive last time, so it was reasonable to ask if I wanted to go through the unpleasantness of three samples. On one hand, I really hoped there was no need, and had no expectation of a need for bacteria or yeast cultures. On the other hand, if the histology comes back positive, I don't want to have to wait for another cycle to get another biopsy for bacterial culture. So we agreed to get three samples again.
She got three samples. I got up and got dressed. Just as I was about to walk out, she came back in and told me she'd put all three in formalin by accident, and you can't culture a sample that's been in formalin. If I wanted bacteria and yeast cultures, I'd have to do another biopsy.
Bloody hell.
Since we'd already run a catheter into my uterus once for the initial biopsy, it increased the chances of pushing in new bacteria and getting a false positive. Also, those biopsies are no bloody fun. I didn't want another. So I declined.
Let's hope the histology comes back negative for CE.
Other interesting notes:
October 30, 2016 was the day my water broke with the twins. During the biopsy, I mentioned to my OB that it happened a year ago. She commented that it must have been scary for me, and that she was scared, specifically that she was scared during my delivery a week later. I knew things were bad during delivery, but hearing that they were bad enough for my OB to be scared. . . I guess that's why my Dad, who saw them wheel me out to surgery that day, encouraged me to think about my own health before continuing to try to get pregnant.
I've had bleeding since the biopsy. More bleeding than my last period. I'm trying to tell myself that it's a good sign that my lining isn't shot. I have no idea if that's true or not, but it's giving me hope so I'll hold to it!
I told my OB that if I'm able to get pregnant again, I'll be coming to see her pretty early on, since I'll want the NIPT referral as early as possible due to the TAC. She told me she's happy to see me weekly if I'm pregnant again. She may regret saying that! :)
Thursday, October 19, 2017
Infectious Diseases Specialist Visit
With the crappy news of another operative hysteroscopy, I got distracted and never posted about our appointment with the Infectious Disease Specialist at the U. Overall, it was a good experience. The TL;DR version: the initial CE finding was probably due to retained POC. It's probably unnecessary, but I can do 14 days of doxy and repeat the biopsy.
Here's the long version: The doctor (who was very pregnant herself) was extremely thorough. She spent well over an hour with us and walking through my complete medical history, going back to childhood. She even sent a follow up note to me asking if I'd had blood clots in the past, because she'd spoken to a colleague who is a rheumatologist, to see if my history of juvenile arthritis (JRA) might be playing a role.
The downside of such a long conversation and discussing so much history is that the conversation was a bit meandering. It's hard to tell the red herrings (JRA, recurrent sinus infections, 12+ years of incurable infection in two of my toes) from the relevant (chronic endometritis, recurrent UTIs). She mentioned something that I thought was really interesting, if frightening: in a proportion of women with recurrent UTIs, there seems to be a chicken and egg issue, where the surface of the bladder is inflamed, and that inflammation makes it more prone to bacterial growth/infection. No one is sure which comes first: the inflammation, or the infection. It can be really hard to break the cycle. This could be what's happening with my uterus, but there's no clear treatment approach if so.
She thought the CE from the biopsy might simply be because of the amount of debris that was in my uterus - retained placenta. She wanted, partly for research, partly for me, to have me do another biopsy before starting antibiotics. Our initial discussion was that we would do the biopsy, and if the CE is gone, I wouldn't do any antibiotics. However, I realized that with the FemVue, I would have to take a few days of antibiotics. Once we discussed that, the doctor agreed that if we were going to be on 4 days of doxy, we might as well do the 14 days of doxy that would be the normal first line treatment for CE. So, the plan was: biopsy and Femvue on 10/4. 14 days of doxy starting on 10/14. Repeat biopsy when my next cycle starts.
Of course, we didn't account for the repeat hysteroscopy in the plan, but it doesn't really change anything. I finished my doxy yesterday morning, and I'm now booked for what I really hope will be my last biopsy on the 30th. The pathology from this last hysteroscopy came back with no evidence of CE (YIPPEE!), and also no retained placenta. It appeared there was just a bit of scar tissue.
Here's the long version: The doctor (who was very pregnant herself) was extremely thorough. She spent well over an hour with us and walking through my complete medical history, going back to childhood. She even sent a follow up note to me asking if I'd had blood clots in the past, because she'd spoken to a colleague who is a rheumatologist, to see if my history of juvenile arthritis (JRA) might be playing a role.
The downside of such a long conversation and discussing so much history is that the conversation was a bit meandering. It's hard to tell the red herrings (JRA, recurrent sinus infections, 12+ years of incurable infection in two of my toes) from the relevant (chronic endometritis, recurrent UTIs). She mentioned something that I thought was really interesting, if frightening: in a proportion of women with recurrent UTIs, there seems to be a chicken and egg issue, where the surface of the bladder is inflamed, and that inflammation makes it more prone to bacterial growth/infection. No one is sure which comes first: the inflammation, or the infection. It can be really hard to break the cycle. This could be what's happening with my uterus, but there's no clear treatment approach if so.
She thought the CE from the biopsy might simply be because of the amount of debris that was in my uterus - retained placenta. She wanted, partly for research, partly for me, to have me do another biopsy before starting antibiotics. Our initial discussion was that we would do the biopsy, and if the CE is gone, I wouldn't do any antibiotics. However, I realized that with the FemVue, I would have to take a few days of antibiotics. Once we discussed that, the doctor agreed that if we were going to be on 4 days of doxy, we might as well do the 14 days of doxy that would be the normal first line treatment for CE. So, the plan was: biopsy and Femvue on 10/4. 14 days of doxy starting on 10/14. Repeat biopsy when my next cycle starts.
Of course, we didn't account for the repeat hysteroscopy in the plan, but it doesn't really change anything. I finished my doxy yesterday morning, and I'm now booked for what I really hope will be my last biopsy on the 30th. The pathology from this last hysteroscopy came back with no evidence of CE (YIPPEE!), and also no retained placenta. It appeared there was just a bit of scar tissue.
Monday, October 16, 2017
Nothing Much
There's nothing much going on here, which I hope is a good thing.
A quick glance in my pill bottle tells me I have 4 doxycycline left! I have no side effects or symptoms, so I'll just hope they've done their job.
Last Friday I received the order for the repeat Infectious Diseases screens for DH and I. I still think this testing is utter bullshit, since we're using TI and have been through multiple screens in the last 16 months. We pose no infection risk to anyone at the office (and shouldn't even if we were carriers, given the need to follow UP). Alas, sometimes you have to wade through bullshit to get what you want, so in I go.
It's looking like I'll get my screen and my repeat biopsy done around 10/31, which should be CD6. Of course, by having written that, I'm sure my cycle won't start as expected! I have 25 days left until surgery. I'm trying to make the most of the time - back to daily workouts and a fairly clean diet. Once my next period starts, I'll go hardcore on the clean eating. I doubt it makes a difference, but I also don't think it hurts, and I continue to want the comfort of feeling like I've done everything within my control in this utterly uncontrollable situation.
If everything goes well with surgery, I'll have to make a decision about when to start cycling. Dr. Haney told us he wanted us to have one period before going back to the RE. If my cycles stay roughly the same as they have been, that should mean CD1 falls about 10 days after surgery. If I do well, it shouldn't be a problem to start stims then. Given my age and insurance coverage, I'd much rather cycle in November, but I'm not sure what will give us the best chance or be the best for my body. I guess we'll wait and see.
A quick glance in my pill bottle tells me I have 4 doxycycline left! I have no side effects or symptoms, so I'll just hope they've done their job.
Last Friday I received the order for the repeat Infectious Diseases screens for DH and I. I still think this testing is utter bullshit, since we're using TI and have been through multiple screens in the last 16 months. We pose no infection risk to anyone at the office (and shouldn't even if we were carriers, given the need to follow UP). Alas, sometimes you have to wade through bullshit to get what you want, so in I go.
It's looking like I'll get my screen and my repeat biopsy done around 10/31, which should be CD6. Of course, by having written that, I'm sure my cycle won't start as expected! I have 25 days left until surgery. I'm trying to make the most of the time - back to daily workouts and a fairly clean diet. Once my next period starts, I'll go hardcore on the clean eating. I doubt it makes a difference, but I also don't think it hurts, and I continue to want the comfort of feeling like I've done everything within my control in this utterly uncontrollable situation.
If everything goes well with surgery, I'll have to make a decision about when to start cycling. Dr. Haney told us he wanted us to have one period before going back to the RE. If my cycles stay roughly the same as they have been, that should mean CD1 falls about 10 days after surgery. If I do well, it shouldn't be a problem to start stims then. Given my age and insurance coverage, I'd much rather cycle in November, but I'm not sure what will give us the best chance or be the best for my body. I guess we'll wait and see.
Wednesday, October 4, 2017
Still Not 1/18
I spent quite some time trying to come up with an appropriate title for this post. A few I tried on:
You've Got To Be Kidding Me
Really, Uterus?
Again!?!
Motherf*cker!!
That last one still feels the most appropriate.
Today was the repeat endometrial biopsy and FemVue. The FemVue's goal was to check my tubes and make sure nothing was left in my uterus. Tubes looked great. Uterus? Not so much. Don't know if it's placenta or adhesions, but up near the fundus something remains. It was obvious enough I could pick it out on ultrasound, and I suck at reading u/s.
I'm not surprised - my period has been unusual, and there was fluid in my uterus before they started the FemVue, which didn't bode well. Alas, this means another operative hysteroscopy. If it means another week with a stent . . . if it means another week with a stent I'm thinking very hard about canceling the surgery and giving up. Because a uterine catheter is hell. Just hell. No better description. Surgery is booked for Friday, and if I think too long about it, I'll back out because I'm just not up for that hell again.
So I won't think about it, I'll just do it.
Oh, and for the record, today's biopsy hurt a lot more than last month's. The FemVue didn't hurt at all during, but I still have odd abdominal tenderness afterward. Fun times.
You've Got To Be Kidding Me
Really, Uterus?
Again!?!
Motherf*cker!!
That last one still feels the most appropriate.
Today was the repeat endometrial biopsy and FemVue. The FemVue's goal was to check my tubes and make sure nothing was left in my uterus. Tubes looked great. Uterus? Not so much. Don't know if it's placenta or adhesions, but up near the fundus something remains. It was obvious enough I could pick it out on ultrasound, and I suck at reading u/s.
I'm not surprised - my period has been unusual, and there was fluid in my uterus before they started the FemVue, which didn't bode well. Alas, this means another operative hysteroscopy. If it means another week with a stent . . . if it means another week with a stent I'm thinking very hard about canceling the surgery and giving up. Because a uterine catheter is hell. Just hell. No better description. Surgery is booked for Friday, and if I think too long about it, I'll back out because I'm just not up for that hell again.
So I won't think about it, I'll just do it.
Oh, and for the record, today's biopsy hurt a lot more than last month's. The FemVue didn't hurt at all during, but I still have odd abdominal tenderness afterward. Fun times.
Saturday, September 30, 2017
Chronic Endometritis
On Monday, at 7:00 am, I go to see an Infectious Disease specialist at the U. The main focus of the discussion, I expect, will be the chronic endometritis that has now been diagnosed. I'm also expecting a side dose of 'why was I still culturing ecoli after a week of clindamycin?'
In preparation, I'm printing a few CE resources. I may have included these in previous posts. . . what can I say, my memory has never been what it used to be! Still, having these in one place might be helpful for someone, so here we go.
December 2016 review article on the subject 'Chronic Endometritis and Infertility.' This references the links to repeat pregnancy loss (RPL), IVF implantation failure. It discusses diagnostic criteria, pathology, and treatment.
May 2014 article on the subject of 'Chronic Endometritis Due to Common Bacteria is Prevalent in Women with Recurrent Miscarriage as Confirmed by Improved Pregnancy Outcome After Antibiotic Treatment.' The title kind of gives away the ending, but this shows tables of outcomes by CE status before and after treatment.
I don't have a full text link for this one, but it's a reseach review of Chronic Endometritis: Potential Cause of Infertility and Obstetric and Neonatal Complications.
In preparation, I'm printing a few CE resources. I may have included these in previous posts. . . what can I say, my memory has never been what it used to be! Still, having these in one place might be helpful for someone, so here we go.
December 2016 review article on the subject 'Chronic Endometritis and Infertility.' This references the links to repeat pregnancy loss (RPL), IVF implantation failure. It discusses diagnostic criteria, pathology, and treatment.
May 2014 article on the subject of 'Chronic Endometritis Due to Common Bacteria is Prevalent in Women with Recurrent Miscarriage as Confirmed by Improved Pregnancy Outcome After Antibiotic Treatment.' The title kind of gives away the ending, but this shows tables of outcomes by CE status before and after treatment.
I don't have a full text link for this one, but it's a reseach review of Chronic Endometritis: Potential Cause of Infertility and Obstetric and Neonatal Complications.
I'm also planning on giving my OB copies of the first two papers. Maybe she'll get offended and won't take them, like the OB at my previous practice. Maybe she'll take them and never read them. But maybe I'll help provide some additional information that can benefit future patients. Of women with RPL, 50% don't find an explanation. I suspect, from the growing body of CE literature, that CE explains a proportion of that 50%. If only we'd found and treated it a year ago, who knows what might have happened.
Monday, September 25, 2017
eColi: 1; Clindamycin: 0
After the positive biopsy, my OB put me on a 7 day course of clindamycin. I've been given clindamycin before - 48 hours via IV when I lost the twins and another 12 hours after the rescue cerclage. My experience then, as now, is that clindamycin has the side effect of causing an awful taste 24/7. I don't know what gasoline tastes like, but if I had to guess, drinking gasoline tastes exactly like being on clindamycin.
You'd think that a week of gasoline would have some beneficial effects. After a week, when I had the stent removed, I mentioned to my OB that I felt like I had UTI symptoms. She took a urine sample, but wrote off the presence of white and red blood cells as the result of removing the stent. So I went an extra 4 days with UTI symptoms before getting the call. . . that urine sample culture positive for ecoli. Of course this leaves me highly confident that my uterus will be bacteria-free. Plus side: one more piece of data to discuss with the Infectious Disease specialist.
You'd think that a week of gasoline would have some beneficial effects. After a week, when I had the stent removed, I mentioned to my OB that I felt like I had UTI symptoms. She took a urine sample, but wrote off the presence of white and red blood cells as the result of removing the stent. So I went an extra 4 days with UTI symptoms before getting the call. . . that urine sample culture positive for ecoli. Of course this leaves me highly confident that my uterus will be bacteria-free. Plus side: one more piece of data to discuss with the Infectious Disease specialist.
Thursday, September 21, 2017
Filed Under the Category Of:
Really good news: The stent is out! For at least a few weeks, I have my body back to some state resembling normalcy.
Helpful news: My perinatologist was able to find an in-network OB to do a FemVue, so I won't have to pay my RE entirely out of pocket to check tubal patency. That's a huge relief.
Upcoming news: I have the infectious disease appointment on the 2nd and the FemVue on the 4. Depending on what ID says, I'll probably also have another biopsy on the 3rd. Oh boy!
Emotional news: I know, logically, that grief isn't linear. That said, it's still really rough when I'm doing ok for a few days and then suddenly have a day where I'm not doing ok. I'm grateful that I'm now having more good days than bad ones, but I still have moments where missing the girls just takes my breath away. I'm still sleeping with Quinn's blanket on our bed. We had hoped that it would soothe her some day, but instead holding it is the one thing that helps me relax when I wake up in the middle of the night and can't stop thinking about them. I guess 37 isn't too old for a "blankey"?
Helpful news: My perinatologist was able to find an in-network OB to do a FemVue, so I won't have to pay my RE entirely out of pocket to check tubal patency. That's a huge relief.
Upcoming news: I have the infectious disease appointment on the 2nd and the FemVue on the 4. Depending on what ID says, I'll probably also have another biopsy on the 3rd. Oh boy!
Emotional news: I know, logically, that grief isn't linear. That said, it's still really rough when I'm doing ok for a few days and then suddenly have a day where I'm not doing ok. I'm grateful that I'm now having more good days than bad ones, but I still have moments where missing the girls just takes my breath away. I'm still sleeping with Quinn's blanket on our bed. We had hoped that it would soothe her some day, but instead holding it is the one thing that helps me relax when I wake up in the middle of the night and can't stop thinking about them. I guess 37 isn't too old for a "blankey"?
Friday, September 15, 2017
Same Bat Channel, New Bat Time
Wednesday's surgery went ahead as scheduled. When I came out of surgery, I was told that my doctor had removed some scar tissue, and quite a bit of retained placenta. They gave me the photos from the hysteroscope, which I've included below, along with a comparison photo of my own uterus, in a "clean" state after my very first operative hysteroscopy. If you don't want to see the inside of my uterus, look away now!
Here are two from yesterday:
This leads me to ask my body: "What is up why you, hmmm? How is it that you hold on to placentas for so long, but you can't hold on to the babies in them long enough? What the heck did I do or not do to you to make this happen every time? WFT, body?"
Probably not the most helpful conversation I've ever had. I'm trying really hard to be hopeful that this worked and will be worthwhile.
I'm not sure if it was because this surgery was more extensive, or because my body is just tired, but I'm in more pain this time that usual. I've been really lucky that with all my past surgeries, I've had some cramping, and I've felt like someone used a serrated-edged, 8" diameter speculum to access my cervix/uterus, but I haven't had much pain beyond that. This time is different. My vagina is really raw and unhappy, my cervix burns, and my uterus keeps sending off stabbing pains and gnarly cramps. I guess that's to be expected and I should be really happy that it wasn't the case before!
Next steps: follow up visit and removal of the stent on Tuesday. We'll need to discuss the pathology for what was found in my uterus, the cultures from the biopsy last week, tubal patency, and what comes next. Exciting, no?
Oh and one final note to the surgery center: If you give patients specimen cups with their name, age, and gender, and have them give samples in the bathroom so you can confirm there is no pregnancy, it's probably unwise to throw the empty but labeled cup and the test stick into the open trashcan next to the sink in the bathroom. Because I looked down while washing my hands, I now know more than I want to about the other woman getting a hysteroscopy that day.
 |
| Clean uterus in 2016 |
Here are two from yesterday:
 |
| Left uterus -retained POC & scar tissue |
 |
| Right uterus -retained POC & scar tissue |
This leads me to ask my body: "What is up why you, hmmm? How is it that you hold on to placentas for so long, but you can't hold on to the babies in them long enough? What the heck did I do or not do to you to make this happen every time? WFT, body?"
Probably not the most helpful conversation I've ever had. I'm trying really hard to be hopeful that this worked and will be worthwhile.
I'm not sure if it was because this surgery was more extensive, or because my body is just tired, but I'm in more pain this time that usual. I've been really lucky that with all my past surgeries, I've had some cramping, and I've felt like someone used a serrated-edged, 8" diameter speculum to access my cervix/uterus, but I haven't had much pain beyond that. This time is different. My vagina is really raw and unhappy, my cervix burns, and my uterus keeps sending off stabbing pains and gnarly cramps. I guess that's to be expected and I should be really happy that it wasn't the case before!
Next steps: follow up visit and removal of the stent on Tuesday. We'll need to discuss the pathology for what was found in my uterus, the cultures from the biopsy last week, tubal patency, and what comes next. Exciting, no?
Oh and one final note to the surgery center: If you give patients specimen cups with their name, age, and gender, and have them give samples in the bathroom so you can confirm there is no pregnancy, it's probably unwise to throw the empty but labeled cup and the test stick into the open trashcan next to the sink in the bathroom. Because I looked down while washing my hands, I now know more than I want to about the other woman getting a hysteroscopy that day.
Tuesday, September 12, 2017
Rainbow-spotted Unicorns
In my utter dismay last week over the need for another operative hysteroscopy and stent, I overlooked something really important that happened. Something that makes me breathe a sigh of relief for the first time in months.
What could that be, you ask? Winning lotto tickets? Calorie-free chocolate? A more functional uterus? The ability to write a post without at least one egregious typo? Alas, none of those. Rather, the MFM called me back. She left me a voicemail and told me she'd try me at home that night if I wasn't able to reach her during the day.
When I got in touch with her, she told me she'd gone back and done a lit search on chronic endometritis (CE). She wanted to find the most up to date info. She noted it was mostly associated with early losses (like my first miscarriages), but that it was also associated with losses up to 20 weeks. She said that she'd recommend we add a few other things to the biopsy being done, and noted that the literature reflects the use of hysteroscopy for CE diagnosis. She wasn't sure it was worthwhile to do the hysteroscopy, but wanted to discuss that option with me.
I told her I was getting the biopsy done later that day, and unless I got really lucky, there was a good chance we'd see adhesions and need a hysteroscopy anyway. Further, even if we didn't see adhesions, my RE encouraged a diagnostic hysteroscopy before a COH cycle, so I was likely to proceed with one. Dr. N told me she'd call my OB right away and let her know what other tests needed to be done on the biopsy sample, and that she'd provide her with information/images on what to look for during the hystreroscopy, to detect CE.
I ended that call with such a feeling of relief. What I have hoped for, what I have felt I needed since the beginning, was a doctor who would take me seriously. A doctor who would be willing to look into the newest research on relevant topics, rather than dismissing me based on previous knowledge or assumptions. A doctor who might normally practice "when you hear hoof beats, think horses," but who would acknowledge that give my history, thinking rainbow-spotted unicorns might be necessary. I will always wonder if things might have been different for Quinn had I found a rainbow-spotted unicorn doctor before getting pregnant with her, or during those first 12 weeks when I asked about cervical monitoring, but at least I'll know that any future pregnancy has the best shot possible.
What could that be, you ask? Winning lotto tickets? Calorie-free chocolate? A more functional uterus? The ability to write a post without at least one egregious typo? Alas, none of those. Rather, the MFM called me back. She left me a voicemail and told me she'd try me at home that night if I wasn't able to reach her during the day.
When I got in touch with her, she told me she'd gone back and done a lit search on chronic endometritis (CE). She wanted to find the most up to date info. She noted it was mostly associated with early losses (like my first miscarriages), but that it was also associated with losses up to 20 weeks. She said that she'd recommend we add a few other things to the biopsy being done, and noted that the literature reflects the use of hysteroscopy for CE diagnosis. She wasn't sure it was worthwhile to do the hysteroscopy, but wanted to discuss that option with me.
I told her I was getting the biopsy done later that day, and unless I got really lucky, there was a good chance we'd see adhesions and need a hysteroscopy anyway. Further, even if we didn't see adhesions, my RE encouraged a diagnostic hysteroscopy before a COH cycle, so I was likely to proceed with one. Dr. N told me she'd call my OB right away and let her know what other tests needed to be done on the biopsy sample, and that she'd provide her with information/images on what to look for during the hystreroscopy, to detect CE.
I ended that call with such a feeling of relief. What I have hoped for, what I have felt I needed since the beginning, was a doctor who would take me seriously. A doctor who would be willing to look into the newest research on relevant topics, rather than dismissing me based on previous knowledge or assumptions. A doctor who might normally practice "when you hear hoof beats, think horses," but who would acknowledge that give my history, thinking rainbow-spotted unicorns might be necessary. I will always wonder if things might have been different for Quinn had I found a rainbow-spotted unicorn doctor before getting pregnant with her, or during those first 12 weeks when I asked about cervical monitoring, but at least I'll know that any future pregnancy has the best shot possible.
Monday, September 11, 2017
BFP - But Not That Kind
Big Fucking Positive. Not the good kind that you dream about and hope for. My OB called me to inform me that the first of the endometrial biopsies is back, and it's positive. Do not pass go. Do not collect $200. Proceed directly to the pharmacy for antibiotics in advance of Wednesday's surgery, because your uterus shows histological signs of chronic infection and inflammation.
How many doctors have told me that chronic infection isn't possible because the uterus is like a "self cleaning oven?" How many have dismissed my concerns? Getting to say "I told you so" has never felt shittier.
In case you've ever wondered, here's the diagnostic criteria for endometritis:
How many doctors have told me that chronic infection isn't possible because the uterus is like a "self cleaning oven?" How many have dismissed my concerns? Getting to say "I told you so" has never felt shittier.
In case you've ever wondered, here's the diagnostic criteria for endometritis:
- Acute endometritis is characterised by the presence of more than five neutrophils in a 400 power field in the endometrial glands.
- Chronic endometritis is characterised by the presence of more than one plasma cell, (and lymphocytes) in a 120 power field in the endometrial stroma.
We're still waiting on the culture to see what's growing in there. For now, I'm on oral clindamycin three times a day. I'm guessing they'll run clindamycin and gentamycin during surgery on Wednesday as well, if they haven't yet gotten the culture back, but I'll confirm with my OB. I had both of those via IV for 48+ hours after losing the twins, and then for ~12 hours after the cerclage was placed. In retrospect, that may have been what got us nearly 3 weeks with Quinn, as opposed to only a single week past pPROM with Alexis and Zoe. That said, I don't really have faith it's enough, and it's not the standard of care for true chronic endometritis.
Some treatment recommendations on CE, from the literature:
- 100 mg of doxycycline twice per day for 14 days (My RE's office does Doxy standard for a few days on all IVF cycles.)
- CDC's PID recommendations:
- Ceftriaxone 250 mg IM in a single dose PLUS Doxycycline 100 mg orally twice a day for 14 days WITH* or WITHOUT Metronidazole 500 mg orally twice a day for 14 days
- OR Cefoxitin 2 g IM in a single dose and Probenecid, 1 g orally administered concurrently in a single dose PLUS Doxycycline 100 mg orally twice a day for 14 days WITH or WITHOUT Metronidazole 500 mg orally twice a day for 14 days
- OR Other parenteral third-generation cephalosporin (e.g., ceftizoxime or cefotaxime) PLUS Doxycycline 100 mg orally twice a day for 14 days WITH* or WITHOUT Metronidazole 500 mg orally twice a day for 14 days
If you're interested in a few good articles on chronic endometritis and RPL or Infertility, here are some links:
Friday, September 1, 2017
CCRM, Again
My other appointment for the week was back with CCRM. None of the other issues matter if we can’t get pregnant again. With my one follicle response to 2400+ iU of FSH in February, I wasn’t sure what our odds of another pregnancy are. That’s especially true as I turn 38 in October. I wanted to get Dr. B’s take, find out how she’d treat us, get her input regarding chronic endometritis, and make sure she didn’t see a concern about the TAC. Thus, off to another appointment. Here are notes on what we heard.
If she thinks we can get pregnant again, and Dr. Haney did too, then I think proceeding with the TAC is the right call. I can’t speak to our embryo quality, having never seen one, but our three daughters were beautiful, and that I can speak to!
As for the gestational carrier, my logical side knows that would be our best chance at a living child. They’re all right about that. However, between the cost of IVF and surrogacy, we’re talking around $100k. That same logical side, the one that created a 20 page Excel workbook to track all our finances each year, that side can’t get on board with that much money, after the tens of thousands we’ve already spent, for a chance at bringing a baby home. Because nothing is guaranteed, even a gestational carrier. So, my ute it is.
My SIS and endometrial biopsy are next Wednesday. Wish me luck? Also, I have to get meds ordered from CVS Caremark. I'm certain that will be more painful than the biopsy. Sigh.
- We make good embryos. We have success during cycles that seem improbable. We should be able to get pregnant again. (Hah, famous last words!)
- Consider a gestational carrier. (Dr. N suggested this as well, but thinks with the TAC we don’t need one.) The challenge would be getting enough euploid embryos, but Dr. B thinks we could accomplish that. No matter what, she’ll up my dosages aggressively for my next cycle.
- Check out the ute more thoroughly. Instead of the saline sono we have scheduled, do a diagnostic hysteroscopy. Do this before the TAC so there aren’t issues.
- Be really aware of what a TAC means if you have a second tri loss. She’s treated patients with TACs who have been successful in subsequent pregnancies and those who haven’t. Hysterotomy to end the pregnancy is substantial surgery.
- Related to #4, be aware that at 38, the risk of genetic abnormalities goes up. Be prepared for that.
- Up my meds. Start with 150 menopur, 300 FSH, and use cetrotide if lead follicle(s) grow too fast. Target 3-4 follicles. Consider priming in advance of the cycle.
- She supports doing a longer course of doxy, starting prior to the cycle, if we push for that.
If she thinks we can get pregnant again, and Dr. Haney did too, then I think proceeding with the TAC is the right call. I can’t speak to our embryo quality, having never seen one, but our three daughters were beautiful, and that I can speak to!
As for the gestational carrier, my logical side knows that would be our best chance at a living child. They’re all right about that. However, between the cost of IVF and surrogacy, we’re talking around $100k. That same logical side, the one that created a 20 page Excel workbook to track all our finances each year, that side can’t get on board with that much money, after the tens of thousands we’ve already spent, for a chance at bringing a baby home. Because nothing is guaranteed, even a gestational carrier. So, my ute it is.
My SIS and endometrial biopsy are next Wednesday. Wish me luck? Also, I have to get meds ordered from CVS Caremark. I'm certain that will be more painful than the biopsy. Sigh.
Thursday, August 31, 2017
One Surprising Step Ahead
Today was my MFM consult. Some of it went as I’d have expected, other things were very different. Starting off, the first and biggest recommendation the perinatologist had was to get a pre-pregnancy transabdominal cerclage. With Dr. Haney. I wasn’t expecting that at all, but it turns out she had a patient with an identical history to mine. Lost twins due to pprom. Lost a singleton to IC. Did a TVC and kept culturing and treating the bacteria they found during pregnancy. . . . and still lost that pregnancy. So they sent her for a TAC, and she recently delivered a 39 week baby.
To say that recommendation was a pleasant shock is an understatement. While I was hospitalized and talking to another MFM in the group, he told me we’d place a TVC at 12 weeks during future pregnancies. I had pushed back, hard, on why you’d do a TVC, especially in someone with infection issues, and not TAC. He was adamant about the TVC being the right choice. So to hear the number one recommendation being a TAC, and to be told to go to Haney, that made me feel much, much better about my decision. It also means I'm one step ahead of the game, having already consulted with him and booked surgery.
On the subject of infection, this perinatologist, Dr. N, agreed with Dr. Haney that the underlying cause of both losses was cervical issues. Even though my cervix was long and closed after Zoe’s water broke. Even though Zoe was the higher baby, and bacteria should rupture the lower baby’s membranes first. She truly believes that there’s no scientific benefit or merit in looking for chronic endometritis, and that treating any bacteria found in my uterus that don’t belong there would cause other problems, as she saw in the patient previously mentioned. Having said all that, we pressed really hard and she agreed to request an endometrial biopsy and a consult with the true Infectious Diseases department. So, on 9/6, I go in for my SIS and a biopsy. Based on what those show, we’ll figure out what comes next.
Dr. N mentioned that infectious diseases would probably screen me for various autoimmune issues that interact with infections. With my history, that seemed wise.
On the topic of progesterone, she noted that it’s shown to help in cases of cervical shortening before 24 weeks, but with the TAC I will not have cervical shortening. Thus, she can not see any clinical benefit. At the same time, she’s willing to discuss further/prescribe it, if I get there, because there’s no harm either. The same goes for additional cervical monitoring during pregnancy. No need, but no harm, and there’s something to be said about the positive impact on my anxiety levels.
With respect to my Asherman’s, and my history of autoimmune disorders, that’s unlikely to be related to pPROM. I will have my placenta monitored more closely during future pregnancy to make sure there are no IUGR or placental insufficiency issues caused by the Asherman’s.
So, the plan:
1. During next cycle (which started when I walked out to the parking garage after the appointment) get endometrial biopsy and confirm uterine cavity is clear of scarring. At the moment I’m scheduled for a biopsy and SIS, but that may be replaced by a biopsy and hysteroscopy.
2. Consult with Infectious Diseases. Determine treatment based on biopsy and results.
3. Have TAC placed.
4. Return to CCRM for COH.
DH and I need to talk a bit more, but it’s a plan I feel pretty good about. It may not get us a THB, but I will feel confident that we’ve tried EVERYTHING we could in getting there.
To say that recommendation was a pleasant shock is an understatement. While I was hospitalized and talking to another MFM in the group, he told me we’d place a TVC at 12 weeks during future pregnancies. I had pushed back, hard, on why you’d do a TVC, especially in someone with infection issues, and not TAC. He was adamant about the TVC being the right choice. So to hear the number one recommendation being a TAC, and to be told to go to Haney, that made me feel much, much better about my decision. It also means I'm one step ahead of the game, having already consulted with him and booked surgery.
On the subject of infection, this perinatologist, Dr. N, agreed with Dr. Haney that the underlying cause of both losses was cervical issues. Even though my cervix was long and closed after Zoe’s water broke. Even though Zoe was the higher baby, and bacteria should rupture the lower baby’s membranes first. She truly believes that there’s no scientific benefit or merit in looking for chronic endometritis, and that treating any bacteria found in my uterus that don’t belong there would cause other problems, as she saw in the patient previously mentioned. Having said all that, we pressed really hard and she agreed to request an endometrial biopsy and a consult with the true Infectious Diseases department. So, on 9/6, I go in for my SIS and a biopsy. Based on what those show, we’ll figure out what comes next.
Dr. N mentioned that infectious diseases would probably screen me for various autoimmune issues that interact with infections. With my history, that seemed wise.
On the topic of progesterone, she noted that it’s shown to help in cases of cervical shortening before 24 weeks, but with the TAC I will not have cervical shortening. Thus, she can not see any clinical benefit. At the same time, she’s willing to discuss further/prescribe it, if I get there, because there’s no harm either. The same goes for additional cervical monitoring during pregnancy. No need, but no harm, and there’s something to be said about the positive impact on my anxiety levels.
With respect to my Asherman’s, and my history of autoimmune disorders, that’s unlikely to be related to pPROM. I will have my placenta monitored more closely during future pregnancy to make sure there are no IUGR or placental insufficiency issues caused by the Asherman’s.
So, the plan:
1. During next cycle (which started when I walked out to the parking garage after the appointment) get endometrial biopsy and confirm uterine cavity is clear of scarring. At the moment I’m scheduled for a biopsy and SIS, but that may be replaced by a biopsy and hysteroscopy.
2. Consult with Infectious Diseases. Determine treatment based on biopsy and results.
3. Have TAC placed.
4. Return to CCRM for COH.
DH and I need to talk a bit more, but it’s a plan I feel pretty good about. It may not get us a THB, but I will feel confident that we’ve tried EVERYTHING we could in getting there.
Wednesday, August 30, 2017
Blocking the Exit
Earlier this month, we had a telephone meeting with a doctor who could probably be described as the expert in transabdominal cerclage. His name is Dr. Haney. Due to my cervical issues this pregnancy, we’re unwilling to consider trying again without a better option than a(nother) transvaginal cerclage. Dr. Haney, who is located in Chicago, appeared to be that better option. For the sake of my record keeping, I’m going to use this post as a place to track what we learned during our two hours on the phone with him.
The Consult
Here’s my best translation of what Dr. Haney told us. I’m not agreeing/disagreeing with anything, just trying to reproduce in my own words what I heard from him. Since this was filtered through my memory/lens, take it for what it’s worth!
The cervix is like a tube or a spindle: there’s tissue around an open canal. Of that tube, 2/3rds of it is up in the abdominal cavity, attached to the uterus, and the last third is down in the vagina. There is a band of tissue at the top of the cervix, the part in the abdomen, that remains tightly closed. During labor, the pressure of the baby’s head, plus contractions, is what forces that band to dilate. But outside of labor, it stays tight. That’s in a woman without cervical insufficiency (CI).
In a woman with CI, the entire column of the cervix dilates from the internal opening downward as the relatively small pressure from the growing baby presses down due to gravity’s impact. As the cervix dilates, bacteria can get into the uterus, and the membranes of the amniotic sac can tear free from the uterus and prolapse out into the cervical canal and vagina.
With a transvaginal cerclage (TVC), a stitch is placed in the lower third of the cervix. Women who have true CI and a TVC will funnel down to the stitch, because nothing has been done to prevent the upper 2/3rds of the cervix from dilating. This means membranes will pull away from the wall of the uterus, and bacteria from the vagina will be able to ascend to the uterus. If I understood Dr. Haney correctly, his position is that women with CI and a TVC will always wind up with chorioamnioitis because of this ascending bacteria. The chorio in turn worsens the chances of survival for their infants. Having had chorio with all three girls, and knowing that Alexis and Zoe passed before birth due to severe chorio, this was a painful reminder of everything that we’ve been through.
With a transabdominal cerclage (TAC), a 2-3 inch incision is opened at the bikini line. A woven fiber band is tied around the cervix at some point in the upper 2/3rds. In my case, Dr. Haney would place two bands. Each band has the strength to support 100-120 pounds, so they could easily support the weight of a fetus, placenta, amniotic fluid, etc. With the bands in place, dilation is impossible. They’re not tied so tight that the cervix is occluded, but they are tied tight enough that the membranes can’t ever prolapse and the cervix can’t funnel. The result of this is that the mucus plug stays in place, the cervix stays long (~4cm) and bacteria can’t ascend from the vagina. The other results: while one can have periods, first trimester miscarriages, and get pregnant “the old fashioned way,” one will have to have a c-section for any 2nd trimester delivery. There is also a risk of uterine rupture as the cervix can’t dilate if contractions occur, and something’s got to give.
Dr. Haney reported a 99% success rate, where success is defined as a live birth, and even mentioned that 92 of 92 sets of twins whose mothers he performed TACs on were born live. He noted that when babies are born before term with TAC in place, it’s due to other issues.
What are my feelings on all of this?
I agree with the belief that TAC has much higher success rates than TVC, when you define success as live birth. There are numerous studies, most from outside the US, to support this. If we try again, I will have a pre-pregnancy TAC placed with Dr. Haney. There is no question in my mind about that. Having said that, the “other issues” that cause pre-term deliveries are also very relevant to me, and I’m concerned they were minimized during our conversation. That’s probably because I was talking to someone who specializes in TACs and not the other issues, but I know exactly how this works: any complications I have during pregnancy post TAC my local MFM team will blame on the TAC. The TAC expert will simultaneously assure me it’s not due to the TAC and that I should work with my MFM team. The end result will be suboptimal because everyone will be busy pointing fingers at everyone else. Cynical much? Why yes, I am.
Next steps
From my point of view, there are two issues that must be addressed before we decide to try for another pregnancy. First, infection. There’s a growing body of literature correlating first trimester miscarriages and failure of genetically normal embryos to “take” after IVF transfer with asymptomatic, chronic endometrial infection. Correlation isn’t causation, and there are plenty of women with term deliveries who also show these markers of infection (related note, I found a study showing a decent percentage of healthy pregnancies in the 36-38 week range have chorio, but no one ever looks for it because there’s no reason to).
Looking at my personal history, I had more than 15 years of recurrent UTIs. They started when I was a kid, a few times a year, and by early 2010, I got them every month or two. I would take my antibiotics each time, the symptoms would vanish, until the next trigger caused the infection to flare up again. In 2010 I was finally referred to urology. The urologist confirmed that there were no structural abnormalities, and then told me that in some people, the bacteria just hang around. The antibiotics knock them back enough to reduce symptoms, but as soon as conditions are right again, they go out of control. I was placed on 6 months of low dose macrobid, and had my last UTI in 2010. At least, my last until 2017. Long way of saying that I have a history of bacteria hanging on through antibiotics that should have cleared them. And bacteria that were asymptomatic until something triggered their uprising. Now I can’t help wondering if ‘pregnancy’ is what’s triggered uterine bacteria.
So, we must clear up the infection issue before we can make a decision to try again.
My cervix is the second issue. I think the TAC with Dr. Haney will address that. It comes at a high risk and a high physical cost, but it’s as good of an option as exists. Honestly, I’m grateful that there IS an option that works so well to solve one of my issues, even if the associated risks are great.
Overall, more answers, one potential solution, more risk and fear.
Subscribe to:
Posts (Atom)