Exercise . . . in Frustration

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.

Cerclage - Two Month Update

It's now been over two months since the cerclage surgery, and I thought I would write an update for anyone interested.

Barring last week, when I had accidental gluten exposure and was back in stabbing abdominal pain with extreme bloating, by 7.5 weeks after surgery, I finally felt mostly normal. That was the point when the last of the abdominal swelling and tenderness finally went away. The only part of me that still "reminds" me of the surgery is my incision site. My favorite leggings, which I wear as a base layer, have a horizontal seam that hits exactly where my incision is. On days I wear those leggings, I have incision soreness. Otherwise, no issues.

Although I started with 10 minute, light cardio about three weeks after surgery (I called it 'turtle mode'), by 6.5 weeks out, I was back to having regular, hard-core cardio workouts. By 8 weeks out, sex was finally totally normal and enjoyable. By this week, about 10 weeks out, I am doing abdominal workouts without regretting it after. . . .or at least without regretting it any more than normal!

Overall, it's been a much longer, harder recovery than I expected. As I mentioned previously, I suspect that may be due to accidental gluten consumption the night before surgery. That would explain why my digestive system, which had been fine the previous day, already looked awful when Dr. Haney cut me open. It's a reminder that I need to be more careful with my eating. I had a single bite of something that contained trace amounts of wheat, and spent a full week in pain. Although it wasn't intentional ingestion, it was definitely not worth it!

I've asked myself, quite a few times since November, if the surgery was "worth it." I think the answer remains 'yes'. Even if fertility treatments fail, there will always be the possibility of spontaneous pregnancy. The long recovery now is worth the possibility that I may some day be pregnant, and won't have to worry about my cervix. Would an easier recovery have made the "worth it" call easier? Sure! But even though it's sucked, it still gives me peace of mind that I wouldn't trade. How often do you get that when dealing with loss and IF?

Missing a Few Things

Things that are missing:

1. My period. Can I tell you how worried I am? I've NEVER had a 14 day luteal phase, even with progesterone. There is no chance I'm pregnant. My temp has dropped. There is no bleeding. Does this mean my lining is gone? My uterus is fused shut? This surgery, all this pain, was in vain? I am not in a good place.

2. My ability to know when I have to pee. I guess the swelling is still bad enough that I can't tell if/when I have to pee. This is not good.

3. DH's STD screen. To be fair, this isn't missing, he just hasn't gone to get the blood draw. I guess this doesn't matter - no period means no RE, no RE means he'll never need his STD results. That said, I'm really frustrated, because I've just been fucking cut open and he can't find the 2 hours it will take to get a blood draw. I know he's super stressed and I know he hates needles, but that, combined with the fact that he left me mid-recovery to go to CA for a business trip does not leave me feeling supported. And that's partly not fair, because he took amazing care of me in Chicago and on the first day home, and no one's taking care of him, but it's still how I feel.

4. Seven pounds. I am officially back at middle school weight. Not being able to eat for more than a week is suboptimal. It's not what I want going into trying to get pregnant again, and it's really depressing, because I spent the last few months trying to get back in shape and now I've probably lost what little muscle I gained. Did I mention that I'm not in a good place?

5. My willingness to touch myself between my belly button and my knees! Seriously, between the incision, the abdominal pain, and the digestive pain, plus the history of uterine infection, I get scared each time I have to do things like use the bathroom and take a shower. I don't want to touch myself. It hurts, I'm worried I'll "break" something, and it's so depressing to see my body so trashed for no obvious benefit (see #1). And since we're on the TMI train, I'm sure not ready yet, but I am so scared about having sex again. I know the TAC will have no impact, but I've got this irrational fear of pain or problems during sex. This sucks.

Not-so Micro Blog Monday

Note: I am trying to participate in Microblog Mondays. On reflection, I don't do great with the Micro part. Does it count if this is shorter than my last few posts?

Today was my original return to work day. Hah! I guess I still have some optimism in me.

As for the rest of me - there are some "Yays!" and some "Boos!".

Yays: The incision is starting to tug/pull more, which I suspect is healing. I can roll my hips over in bed using my ab muscles. Swelling is down on the right side of my abdomen and I can even take a full breath or yawn! I am off all medications.

Boos: I have one section of colon that’s still stabby. I can breathe when on my back or on my left side, but the pain gets so severe when I'm on my right side I can’t breathe at all. The hemorrhoids are resolving but the skin around my bum is in horrible shape. Sitting, standing, moving - I am constantly aware of the pain!

Please tell me this will all be worth it some day?

Want more Microblog Mondays?  Head over to Stirrup Queens to read more!

Preventing Fetal Membrane Rupture

Given my history, I'm quite interested in pPROM, and what might be done to reduce the risk of pPROM. The obvious answer is to prevent bacteria from ascending into the uterus, which we're hoping to accomplish via the TAC and clearing out my chronic endometritis. Beyond that, though, I wanted to learn more about fetal membranes.

Below are a selection of research articles I found. I've mostly included those that found consistent results. This is why you won't see any studies on Vitamin C below, as C has mixed results with respect to FM rupture. The caveat: read these and make your own decision, and note that the researchers are often the same across these studies. I will say that if I"m ever pregnant again, I intend to stay on progesterone (P4) and take Alpha-lipoic acid.

Fetal Membrane structure (FMs):
Fetal membranes are composed of two layers, the chorion and the amnion. During pregnancy, a weak zone in the fetal membranes typically develops over the cervix. This is the spot that typically ruptures during a normal labor.

In various modeling and testing, the amnion is the most important component of FM with respect to strength. Thinner amnion and chorion are correlated to lower strength and greater risk of rupture.

See: Function and Failure of the Fetal Membranes, (2017) Verbruggen, et. al.

Etiology of FM rupture:
When looking at the weak zone that appears over the cervix in a healthy term pregnancy, researchers find remodeling of the collagen that makes up the FM. Inflammation/infection and bleeding/abruption both produce the same collagen remodeling effect, when modeled using TNF (for infection) and Thrombin (for abruption).

See: The physiology of fetal membrane weakening and rupture: Insights gained from the determination of physical properties revisited. (2016) Kumar, et. al.

Correlates with FM strength:

"The dietary supplement α-lipoic acid and progestogens (P4, MPA and 17α-hydroxyprogesterone) have been shown to inhibit both TNF and Thrombin induced FM weakening. The progestogens act at multiple points by inhibiting both GM-CSF production and GM-CSF action."

See: The physiology of fetal membrane weakening and rupture: Insights gained from the determination of physical properties revisited. (2016) Kumar, et. al.

Alpha-lipoic acid moderates the impact of both TNF and thrombin on FM. "Treatment of FM with 0.25 mM LA completely inhibited thrombin-induced FM weakening and MMP expression (all p < 0.001). Thrombin treatment of cultured FM induces mechanical weakening and increased MMP3 and 9. Treatment of FM with LA inhibits these thrombin-induced effects. We speculate LA may prove clinically useful in prevention of PPROM associated with abruption."

See: Alpha-lipoic acid inhibits thrombin-induced fetal membrane weakening in vitro. (2010), Moore, et. al.

"TNF and thrombin both weakened fetal membranes and elevated media GM-CSF levels on the choriodecidua side of the fetal membrane. Pretreatment with progesterone, MPA (medroxyprogesterone acetate), or HP (17α-hydroxyprogesterone) inhibited both TNF- and thrombin-induced fetal membrane weakening and also inhibited the induced increase in GM-CSF. GM-CSF decreased fetal membrane rupture strength by 68%, which was inhibited by progestogen pretreatment with a potency order: progesterone <MPA <HP"

See: Progesterone inhibits in vitro fetal membrane weakening. (2015). Kumar, et. al. 

Lessons from Surgery

I realized last night that having had seven surgeries in less than two years, I might have some advice that's helpful to anyone else preparing to go through gynecological surgery. Thus, here are my "credentials" and also my experiences/advice.

Surgeries since 1/18/16:

1. D&C for missed miscarriage - Jan 16
2. Operative hysteroscopy to remove scar tissue and retained POC from missed miscarriage - May 16
3. Emergency D&C due to postpartum hemorrhage - Nov 16. To be fair, they did two of these, since I Started to hemorrhage again while in recovery before regaining consciousness.
4. Operative hysteroscopy to remove scar tissue and retained POC from losing the twins - Feb 17
5. Rescue cerclage placement - July 17
6. Operative hysteroscopy to remove scar tissue and retained POC from losing Quinn - Sept 17
7. Operative hysteroscopy to remove scar tissue and retained POC from losing Quinn - Oct 17

Things I have learned throughout this process. These may only apply to me, but I thought it was worth sharing:

• If you can, get a morning surgery. Going without food until an afternoon time slot makes an unpleasant day worse.
• Be aware that even though you're groggy, you'll have awful insomnia starting around midnight the night of/after the anesthesia (this applies only to the general anesthesia and not the spinal)
• Be aware that you'll stay groggy the day AFTER surgery.
• Know that it's ok to ask to have the IV placed in your arm, not your hand - often that hurts less. Either way, plan on about a week of bruising from it.
• Expect 2-3 days of sore throat from the anesthesia. How sore will depend on how long you were under. 
• If you're allowed, plan on a shower as soon as you get home - different hospitals do a better or worse job of cleaning up the betadine they use on you, expect that you'll still be orange in a few places until you can shower. 
• If you're outpatient, be aware that the doctor will tell the person you came with the outcome of the surgery. This means that if you have specific questions you want answered, make sure to tell that person. I expect my DH to know what's going on and ask the right questions, but in reality, all he's able to process without specific guidance is, "It went well."
• Wear comfy clothes and a bra that are easy to get back on. At the hospital, a nurse dressed me while I was in post-op. At the surgical center, I had to dress myself in the tiny pre-op/recovery room. In either situation, you want easy to doff/don clothing. 
• If you get cold easily, bring a jacket you can throw over your shoulders while waiting. Yes, hospitals and surgical centers have warm blankets, but they're often about 2" by 2", so it's tough to really bundle up! My local hospital offers a warming gown, but the surgical center doesn't, so having a jacket over my shoulders while waiting to be taken back for surgery was awesome.
• Have a pain management discussion with your doctor before you go under. My first two surgeries, I was given narcotic painkillers and rx strength ibuprofen. I never needed the narcotics, I did appreciate the rx strength ibuprofen. Surgeries 4, 6 and 7 we never discussed pain management, and since I can't take NSAIDs, I went without once home. That's ok by me, but if it's not ok with you, be sure to discuss with your Dr.  
• Have a plan for what to do when you get home. My plan is Netflix under a blanket on the sofa, but figure out what low-energy thing will be a treat for you, and have it ready.  

Most of all, my advice is that you CAN get through this, no matter how scary it seems. 

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:

• 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:

Chronic endometritis due to common bacteria is prevalent in women with recurrent miscarriage.

Chronic endometritis and infertility. 

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.

1. We make good embryos. We have success during cycles that seem improbable. We should be able to get pregnant again. (Hah, famous last words!)
2. 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.
3. 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.
4. 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.
5. Related to #4, be aware that at 38, the risk of genetic abnormalities goes up. Be prepared for that. 
6. 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. 
7. 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.

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.

Is Hope Enough?

During the three weeks I spent in antenatal at the hospital, there was a weekly 'group' session for inpatient moms, facilitated by one of the social workers. I was fortunate enough to meet some great ladies, one of whom I'm still in contact with, and to whom I wish a very long, very boring stay.

The social worker asked us during one group session how things were going, that is, how were we feeling emotionally. How could we describe our stay? In my case, the answer was: terror, punctuated by hope. Honestly, every single time I had to get up to use the restroom there was fear. With my cervix open, I knew I could have a complete rupture at any time, and straining at all to use the toilet was likely to cause that. I also had several bleeding episodes when up to use the toilet, and those brought on sheer terror. Yet every time I felt Quinn move, every time her heartbeat was still perfect and my temperature was still normal, there was hope. Every morning that we woke up and got to add another day to the whiteboard with her gestational age, there was hope.

When we knew I was going to deliver, I tried to tell myself that at least I wouldn't have to live with the terror any more. That's the bright side of the worst happening, right: at least you don't have to be scared that the worst might happen anymore. For the record, that is an awfully shitty bright side.

To be fair, looking back at my entire pregnancy with Quinn, there was a lot of fear. The two weeks leading up to our first ultrasound were so rough that I started seeing a therapist who specializes in perinatal loss and infertility. The fear leading up to the NIPT results was bad as well. There was also a lot of joy. Feeling her move was so amazing. Looking forward to our lives with her was joyous. Loving her brought joy.

As I think about the future, and try to decide if this is the end of the road for us, this weighs on me. Can I survive the emotional roller coaster that is fertility treatments? Can I survive (hopefully) 9 months of fear? If we get pregnant again, I will have a cerclage of some type. If things went wrong again, could I live in the hospital with the kind of fear I had hanging over me, knowing the cerlage could rip out (TVC) or my uterus could rupture (TAC) and I could lose the baby? Basically, it comes down to a decision: is the hope worth everything that accompanies it: fear, potential heartbreak, potential loss, and all the surgeries, fertility treatments and costs associated to even have a chance at hope?  I don't know yet, the heartbreak and the fear are still too fresh.

Prayers Needed

Brief update, as I'm flat on my back:

Bleeding turned out to be my mucus plug. I went to the hospital the Sunday before the 4th, and was 3 cm dilated with bulging membranes. I was taken via ambulance to the university hospital, where the MFM said they could try a rescue cerclage, but didn't thnk it would work. They made us do a NICU consult before they'd agree to surgery. I was 18.3.

Surgery took place just after midnight Afterward the MFM was absolutely thrilled. Membranes went back of their own accord when I was placed into steep trendelenberg position. They were able to get two stitches in. Everything looked good. I was discharged the next afternoon.

I had one day at home and then woke up the next morning to a gush. We called and were told to come back to the hospital. The initial test was positive for amniotic fluid, but baby's AFIs were still normal and I'd stopped leaking. I was kept for monitoring. The next morning they had me walk around a lot and retested The consensus was that I had ppromed.

MFMs wanted us to remove the cerclage and induce due to likely infection. They said even if we didn't inudce, I'd probably go into labor. We agreed to remove the cerclage, and all the famly flew out and waited for labor to start. I immediately dilated to 3 and baby's membranes returned through my cervix, but labor didn't start.

I'm now 20.1 and praying to make it to 24 and viability. We are at high risk for infection, as I've tested positive for ecoli and enterococcus. This has been an utter nightmare, but each day with our little girl is a win. If you have a few prayers to spare, please send them our way.