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! :)

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.

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. 

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.