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. 

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.

And So It Begins

I headed back to the RE’s office last week. While I have no intention of trying again until March or April, I’ve missed so much time from work that I wanted to get the appointment in before I returned to the office and would have to leave early to take it.

I’ve said it before and will say it again: I have the utmost respect for my RE, her knowledge, and her skill in this field. I feel confident that my treatment plan reflects the most up-to-date science, and that my input is consistently considered. I would highly recommend her to anyone else.

I have less confidence in some of the information that comes from the (otherwise wonderful) nursing staff. Case in point: DH and I both had communicable disease screening done last June/July. The nurse I’m communicating with told me that we’ll both need to be retested.

Now, I had several blood transfusions due to hemorrhage after delivering the girls, so I don’t mind being retested, although it’s been far less than a year and I’ll have to pay out of pocket. But I couldn’t understand why DH would need more testing. We don’t have  MFI, so we get to try to get pregnant the quasi-old fashioned way: drugs, ultrasounds, and sex. DH will be going nowhere near the RE’s office, and will therefore pose a risk to no one but me. Thus, I asked why he needed to be tested.

The nurse informed me that it’s an FDA requirement, because “he might expose you [me] to something.”

At first, I was righteously indignant at the FDA. In the first place, they have no business in my sex life. In the second place, do they really think that the only way I’ll be “exposed” is if I have treatment? They are protecting me from exactly nothing. Finally, why in the bloody hell should the government force me to pay for testing just because I need injections and ultrasounds to get/stay pregnant?

But after being indignant for a while, I went searching for the actual government regulation. Because I’m a) curious, and b) stuck at home in pain with nothing better to do. You know what I found? 21 CFR 1271.90 (2), which is the regulation that requires testing for “human cells, tissues, and cellular and tissue-based products” (aka sperm/egg/gamete donations) specifically exempts “Reproductive cells or tissue donated by a sexually intimate partner of the recipient for reproductive use”. In other words, DH should not need to be tested. (Should anyone be aware of other relevant regulations, please let me know. In all my searching this was the only thing I could find.)

Thus, the bullshittery of frustration, bad information, incompetence (wait until my next post about good ‘ol CVS Caremark), and frustration has begun again. Happy f-ing New Year.

DOH! DOR

On Thursday, I learned that going to the fertility specialist at your OB's office is like going to the cosmetic surgeon at your dentist's office. He may know more about cosmetic surgery than the other dentists, but he sure isn't an expert. In this case, the OB had never heard of AMH, per his own words, not my assumption. He also claimed that endometrial thickness and pattern had no implications for pregnancy/miscarriage.

I passed him a 2015 journal article whose abstract noted sustained pregnancy is extremely rare with lining <6mm. He got flustered, insisted it wasn't really an issue, and couldn't provide any data to support that.

Anyhow, based on the numbers, my ovaries are in their mid to late 40's. AMH is 0.4, FSH is 9.5, E2 was 18. Not good. We're moving on to talk to an actual miscarriage and fertility specialist. I've scheduled an appointment with CCRM's local branch in about two weeks.

Oh yeah, the best part of the doctor visit? He told us the miscarriages were just really bad luck and that we should start trying again. He said I should ovulate soon, and I told him I had already, three days ago. He asked "did you try?" I replied, "You told us we had to wait two weeks after the hysteroscopy, and that isn't until NEXT Monday, so no, we didn't try." At that point he got upset, raised his voice, and told us to go home and try immediately. Seriously, dude, my temp's been up for 3 days. The egg ship has sailed, no matter how much you yell at me for following your bloody instructions!

Moral of the story: go to a specialist for specialist advice.