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. 

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.

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"?

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!

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.

Endometrial Biopsy & SIS

Last week I went in for an endometrial biopsy and SIS. I've had two previous saline sonograms, so I knew what to expect from that: place speculum, swab cervix with betadine, insert catheter through cervix, remove speculum, insert ultrasound wand, push saline into uterus through catheter while scanning uterine cavity, remove wand, remove catheter, gush water on table/floor, done. I've always had bleeding right after and at least a few days of red/brown spotting following a SIS. That said, the worst part of it is always the speculum, and the rest, while not fun, has not been painful or extremely unpleasant. (Note: I can't say the same of the results, which have always sucked.)

Last week's SIS was no different, but I wasn't sure what to expect from the endometrial biopsy. I've seen ladies who reported it wasn't a big deal, while others said it was extremely painful. The scheduling nurse told me to take 800 mg of Ibuprofen an hour before, but I can't tolerate NSAIDs, so I went with 600 mg of Tylenol and half a valium that expired in 2013.

The TL;DR summary: the worst part was still the speculum.

In my case, they needed to take two separate biopsy samples. The speculum was placed, my cervix was swabbed with betadine, then my doctor went to get the first sample. I have a tilted uterus, so she had the sonographer do a transabdominal ultrasound so she could visualize the sample she was getting. I was told to expect some sharp cramping, but didn't feel too much - maybe because I was distracted by the discomfort from the speculum. She got the first sample and passed it off to the waiting nurse. She went back for the second one - same warning, that there would be sharp cramping. I won't say I felt nothing, but I can honestly say what I felt wasn't pain, just discomfort. I did a lot of yoga breathing and kept waiting for it to get worse, and it never did. After she passed the second sample to the nurse, we moved on to the SIS.

Since the biopsy came back positive for CE, I expect I'll have to do a repeat in a month or two. I won't look forward to it, but I also won't dread it the way I'm dreading the stent placement.

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. 

At Least it won't be 1/18

There's scar tissue. Near the fundus and again near the cervix. I go in for surgery on Wednesday, and get another week with a balloon stent. I cried in the ultrasound room. Hysteroscopy #3, here I come. I knew better, I have Ashermans, so I knew I should expect it, but it's still one more blow and one more thing I'm dreading. At least this surgery won't be on 1/18.

First Day

Today was my first day back at work. I got up at 5, got ready, and was just starting breakfast when our power went out. Really? Really. DH helped me get the garage door open, and out I went. I probably should have taken it as a sign and stayed home. Silly me.

The woman who sits directly across from me went out on maternity leave in mid-June. She told everyone she'd be back in late September, and posted a note at her desk saying the same thing. I figured that meant I'd have a few weeks to adjust to being back before she arrived and all of our coworkers were over at her desk talking about the baby and her leave and so forth. When I got in, I confirmed her note still said "late September." Apparently she changed her mind, because today was her first day back. I am so happy for her that her family is now complete, but it was a hard day to get through, and the cooing over her wonderful little boy made it harder.

I guess I shouldn't complain, though, because tomorrow is the biopsy and SIS. Physically speaking, the lowest point for me, the point when I almost gave up, was the week I had the balloon stent in place after surgery to remove scar tissue in my uterus. It was just so miserably, constantly uncomfortable. If tomorrow's SIS shows more scarring, and I need to do another week with a stent, I don't know how I'm going to get through. I'd rather do another 26 hours of labor than a week with a stent. I know that makes me a huge wuss, but it's true. Please let one thing go right and let me have avoided scarring this time.

Quinn's Birth Story

Earlier I wrote about Alexis and Zoe’s birth. Given the similarity in circumstances with Quinn’s pregnancy, I was very worried that her delivery would be similar. Fortunately, it was a night and day difference.

Monday the 24th, I went in for my routine antepartum ultrasound. I knew we’d be getting bad news, because I’d been leaking so much more fluid. I think the u/s showed that she still had some fluid, but it also showed that her feet and cord were fully engaged in the birth canal. She was breech with her little legs crossed. We knew then that it was over.

The doctors and residents came in for rounds about an hour later and told us what we were expecting – that I was in labor and she’d be born in the next day or two. The doctor, who was the most compassionate of those we had met, said delivery would probably be very fast. She told us they’d move us over to L&D when we were ready, but there was no rush.

We let our family know. While DH’s mom was in town, my dad and step mom had left for a few days because they’d had a friend who was visiting them at their home. They changed their flights to get back as soon as they could, but that was Tuesday the 25th.

I got up, for the first time in three weeks, and got a long, long shower. After that, we let the nurses know we were ready to go to L&D. A room opened up and we were moved somewhere between 11 and 12. I was having relatively painless contractions every 10 minutes or so. I knew I was contracting only because I could feel my belly get firm, but there was no pain. When I was up and walking around, I felt pressure and cramping in my back, but nothing that would actually be pain.

We stayed in the L&D room for about 2 hours, with the nurses checking in, but our doctor never came. Eventually we learned that once we moved to L&D, the perinatologist was no longer allowed to see us, so one of the hospital staff doctors would deliver Quinn. We politely but adamantly expressed dismay over that. A month earlier I’d asked who would deliver us when we were transferred to the university hospital where my OB doesn’t practice, and I was told perinatology would.  I didn’t want a complete stranger who didn’t know my history of hemorrhage there. We said this, and the nurse left.

About an hour later, the amazing perinatologist, Dr. Y., came in. She checked me using the ultrasound, and Quinn was engaged further with no fluid left, but not quite far enough out yet. Dr. Y told me to try walking for an hour. If we could get Quinn to deliver without further intervention, Dr. Y would break hospital rules to be the one to deliver, along with an OB resident. I walked for an hour, and Dr. Y and the resident came back. They used the ultrasound to see what was happening as I pushed, and guided me. It was amazingly calm and peaceful, and almost entirely pain-free. After a half dozen pushes or so, I could feel Quinn start to move. After another few pushes, she was out. Someone checked and confirmed Quinn was alive.

Dr. Y asked if we wanted to hold Quinn and then suggested we do delayed cord clamping to maximize our time with her. They wrapped her up and gave her to me, and holding her was so utterly amazing. She was tiny, but I could feel her move in my arms. That was the most wonderful, precious thing I’ve ever felt. The nurses got my MIL from the waiting room, so she could come in and see Quinn while she was still alive.

Eventually they cut the cord and gave Quinn to us. She was such a fighter that she was still alive. They also started me on Pitocin as the placenta hadn’t delivered. We just held our daughter and let the doctors do their thing, and eventually the placenta did deliver. After about an hour and a quarter, the nurse checked Quinn’s heartbeat and she was gone. They took her, wrapped her up in a new blanket, and gave her back to us so we could spend more time with her. It wasn’t enough. It could never have been enough.

I am so grateful for such a calm, peaceful experience. I am so grateful for the time we got with Quinn, and that Quinn got to meet one of her grandmas. I am so grateful that this delivery went smoothly, and Dr. Y was willing to stay with us. During a day of utter heartbreak, those things were rays of light. Afterward, they let me go back to spend the night in my old room in Antepartum, and I was discharged the next morning.

The nurses took pictures of Quinn after she left our room, including the one above. I didn't find this picture until yesterday. It's funny because when she was born, I recall thinking that she didn't really look like anyone in our families. Seeing her in this photo, I realized she is the spitting image of my maternal grandmother. That is grandma's chin and nose, no doubt about it. I'm hoping that they're together somewhere now, and grandma is giving Quinn all the love and snuggles that I can't give her in person.

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.