No More Vag Pills

Just got the call: hcg is 20. Stop the progesterone and estrogen, send the clinic a note when I start to bleed, repeat beta to make sure it hits zero after bleeding stops. I'm grateful it's resolving on its own.

Topics to cover before trying again:
Acupuncture
Autoimmune protocol, especially prednisone
Need to do doxy again?

It took us three losses to get Alexis and Zoe. I try to hold on to the hope that as awful as more losses are, maybe they'll bring us back to a better place again some day.

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! :)

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.

• Link: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5234283/

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.

• Link: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3984485/

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.

• Link: https://www.researchgate.net/publication/283011984_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. 

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.

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. 

On the Way Out?

Severe cramping yesterday. Awoke to brown spotting and more cramps. The end, I guess?

FRO

It is terrible, but I always have a mental "FRO" list. FRO, you ask? "F*ck Right Off". It's the list for things or people or processes that really just need to f*ck right off. Take, for example, CVS/Caremark, which STILL has not processed the prior authorization sent in on Tuesday. CVS/Caremark can f*ck right off. Sideways. 

You know what? Add to the FRO: repeat pregnancy loss. 

I am pregnant. Today, I am pregnant. Two lines and my hcg level say so.

I had to tell the genetic counselor I met yesterday to discuss BRCA1 testing for me. She wanted me in for a mammogram, and I told her I was pretty sure I was about 2 seconds pregnant. She told me congratulations. I felt so sad hearing that, because I couldn't accept it. I told her to wait for a few months before the congrats, because after three miscarriages, no one should celebrate this until we're confident it will last. 

Fuck miscarriage. Fuck it for taking away my chance to be happy early in this pregnancy. Fuck it for making a BFP a sad event, not a happy one. Fuck it for making me question my eggs, which means I won't be enjoying anything until after the NIPT is done and I know the baby is healthy. Fuck it.

Fuck it for making me wonder if the beta value the nurse told me (249.9) really belongs to someone else, because it seems too good to be true, and the super sweet lab tech mentioned that there were several other positives today.  249 is such a great number for how far along I am, I just can't believe it's mine, especially when the line on the FRER this morning is so damn faint.  

Fuck it, because when I saw another CCRM patient come in today, bringing food and a present for the doctor and nurses, and hugging them and crying because she was one of the other newly pregnant patients, all I could think was "She doesn't know she shouldn't be so happy yet. She doesn't know how risky hope and excitement are. I hope she never finds out."

No one should ever, ever have to feel like this about a wanted BFP. I am so happy for women like the lady at my office who don't feel this way. I wish I could emulate them. 

Over There

Yesterday I had my baseline ultrasound.

Let's start with the good news: my blood flow is normal!! That means there aren't bloodflow issues to explain my thin lining. One tiny relief.

In other news, my antral follicle count today was 9. That's not great, but given my low AMH, it isn't as bad as I feared. That also reflects an echogenic spot on my left ovary. Right ovary had 6 follicles, left had 3. It took a while to find my left ovary, and the nurse's words were, "Oh! it's way over there!" How is it that my anatomy is so unexpected?

Now I wait to hear if we get to proceed or not. Dr B, here in MN, is going to confer with other doctors in the group out in CO and call me with an opinion on what comes next. That's because of my karyotype results. I really appreciate that my clinic takes the approach of consulting with one and other. From an adult learning perspective, that's how experts build more expertise, so it's good to know it's happening.

Foregone conclusion: I'm Not Normal

In reading through this, you might be getting a picture that things aren't normal for me.

I've had three miscarriages: not normal.
I have an AMH of .406 at age 36: not normal.
My SIS and HSG results showed something really off in my uterus: not normal.
My uterine lining was <5 mm the day before ovulation: not normal.

In light of this, the results of my karyotyping, which arrived yesterday, should come as no surprise: not normal.

Specifically, I have a balanced pericentric inversion of chromosome 9. The break points are at p11q13. Apparently this is just about the most common chromosomal error in the general population. Oh boy. I guess that means I'm normally abnormal?

What does this mean? Well, going back to biology class, you might recall meosis, the process whereby gametes are created. In my case, during meosis, the chromosome 9 that became mine broke at the centromere, and then again in each arm. Instead of rejoining correctly, it flipped itself. So if " | " is the centromere, the chromosome should have been: A B C D E | F G H. Instead, mine is:  A B C F | E D G H.

On the upside, this is the best of all genetic errors to have. If it was a translocation, we'd only have a 33% shot of a normal or carrier offspring from each oocyte. Pericentric inversions aren't nearly as bad, in fact the majority of people conceive successfully. Alas, they increase the chances of unbalanced rearrangements during meosis, which in turn increase the chances of miscarriage and other problems. Depending on which study you read, the risk of miscarriage increases by anywhere from 1 to 30%. No one bothers with stats on birth defects, but those are higher, too.

So, I wait for my doctor's opinion, but I expect to proceed with injections starting tomorrow. Wish me and my broken genome luck?

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.

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.

What's Half of "I Told You So"?

Two Fridays ago, I had my saline sonogram. This entailed filling my uterine cavity with saline and then using ultrasound to determine if anything was amiss. It was scheduled for CD13 for me. Going in, I would have bet on two findings. Coming out, it turns out I would have been half correct.

Bet #1: Thin uterine lining. Result: Nailed that one. The ultrasound showed one beautiful 20mm follicle, ready to go in another day. My lining, however, was less than half the thickness it should have been. Outcome: To be confirmed, but I expect I’ll be getting some hormonal support in the future.

Bet #2: Everything else will look fine. Result: Nope. At first things looked picture-perfect, teardrop shaped. Then the ultrasound reached the top of my uterus and discovered something, that, after further inspection, appears to run the full length of the right side. It might be a fibroid or polyp, but it’s probably scar tissue from the January d&c. Research shows that nearly 20% of surgical abortions result in uterine adhesions and scar tissue. I should not be shocked to fall directly in the 20%. Whatever it is, it doesn’t belong. Outcome: I win surgery to remove it. The ultrasound photos below show the thing that doesn’t belong.

Overall, these two factors combined provide a logical explanation for the two chemical pregnancies. The extent of the whatever that’s in my uterus could easily disrupt implantation. I’d like to say that this gives me hope that maybe we’ve found the cause of these losses, can fix it, and will have no further trouble with getting and staying pregnant. I’d like to say that, but I really can’t. Three back to back losses have taught me that hope is not a good thing. Hope makes you hurt. So, for now, I’ll focus on next steps, not expect any better outcomes, and be positively thrilled if a sticky pregnancy arises from all of this.

Speaking of next steps, the plan is to do a surgical hysteroscopy, and use a morcellator to remove the whatever. If it’s scar tissue, they’ll leave a balloon catheter in place when they’re done, to prevent reformation of scar tissue. I go in for surgery on the 23rd. Post-op appointment is June 15, so I hope to be cleared at that time. In the meantime, I’ll keep up diet, supplements, and exercise. I don’t know if they make a difference, but this was the first cycle in my life that I’ve ovulated on day 14, and that was the first positive I’ve had in a while!