My Miscarriage Exprience

Have you ever heard that getting negative thoughts out of your head and onto paper {or in this case a computer screen} removes their power over you?  Well, this post is my way of investigating that theory.  I realized I've never written out my actual miscarriage experience.  As it was both physically and emotionally traumatic, I thought perhaps by writing everything down it might become less scary to recall or carry around with me as a part of my past.  So here goes...

Warning:  This post is a bit graphic and contains what some might consider TMI.  Proceed at your own risk!

There are multiple types of miscarriage... natural/spontaneous, induced through drugs, surgical.  In my case, I started miscarrying naturally, though was prescribed drugs to help the process along and ended up getting a MVA {a.k.a. Manual Vacuum Aspiration - similar to a D&C but uses vacuum aspiration instead of scraping to remove the tissue, and does not utilize general anesthesia so you're awake in the dr's office}.

When I started miscarrying, I was nearly 11 weeks along into my first pregnancy and didn't know any of this info.  Looking back, I don't feel that my OB gave me all the info I needed to prepare myself as much as possible for the experience, so I'm hoping by sharing my experience that I can help inform others' and maybe draw your attention to some different options.  Read how my scenario played out below.  {I've tried to keep the descriptions as "objective" as possible without a lot of emotional narration.}

Sunday mid-afternoon:  After getting out of the shower, I felt the urge to pee. I didn’t have any pains, but there was a certain discomfort in my pelvic area that made me want to pee before even getting my robe on. Looking down, I saw bright red blood come out in my urine stream and immediately my heart sank. I threw my robe on, screamed for my husband, hopped into bed and propped my feet up on pillows. The time was 2:30pm. I called my OBGYN’s emergency service line and anxiously awaited a return call. The on-call doctor happened to be the one I saw at my recent visits, and she returned the call within a few minutes. She asked whether I had fallen or had any cramps or pain {which I didn’t} and advised that unless I was soaking a pad an hour {which I wasn't -- the blood was really only coming out when I urinated} to wait until Monday morning to come in.  For several hours after that call I laid in bed, scared to death. I knew bright red blood could be bad, but I didn’t have any pains and the blood only seemed to be coming out when I urinated. Of course I spent the rest of the day searching for and reading info about miscarriage, and was generally terrified at the mere possibility.  I don't know if I was too gullible or desperate, or both, but I came across some posts online from women who experienced scary-sounding bleeding during pregnancies that ended up being totally fine.  And, we'd already seen a very healthy heartbeat at 8 weeks, so I tried to convince myself we'd also be fine.  After doing my online research, I slept with my legs up on a pillow and hardly bled on my pad at all at night.

Monday AM:  Woke up, checked for blood. There was a little bit on my pad but no clotting and no pains.... yet.  By the time I got to my doctor's office at 10am though I felt the cramping pretty badly {similar to period but more severe}, and felt the bleeding worsen. Upon arrival at the office, my OB confirmed the embryo was not detectable in the uterus and I was miscarrying. She advised me to try to let the process complete naturally, and sent me home with 4 pills of Methotrexate to take every 6 hours over the next 24 hours to help the process along. The pills caused my bleeding to worsen and the cramping to be VERY severe at times {especially for about 1 hour after each dose}. I've never given birth so I can't say for sure that the pain was like contractions, but it seemed like it to me. Thanks to the pain, I barely slept at all that night which honestly made everything a lot harder to handle.  My OB underplayed the pain I would feel from these pills; had I known I would've tried to time the pills differently so I could've tried to get at least some sleep during the night.  {Side note: I ended up passing a large clot-like tissue in the middle of the night which was about the size of a flattened prune, which for some reason I decided to put in a jar during my hysteria after seeing it because I think I had read something about doing that on a message board. This was VERY traumatic to go through at home, but the tissue sample ended up being used for lab analysis and it was determined that chromosomal abnormalities were the cause of my miscarriage.  So, although this was a very painful thing to have gone through and have seared into my memory, it helped provide me with information that confirmed the miscarriage was not a result of anything I did wrong.  Therefore, if possible I'd advise other women who have the opportunity to do this as well.  My doctor never mentioned the possibility that this could happen, which I feel was a very important omission.  Seeing something like that come out of me is something I'll never ever forget.  It was something I feel I should've been more prepared for by my doctor, not some random online message board I'd once skimmed after finding out I was pregnant.}

Tuesday: After all that physical and emotional trauma, my OB didn't think the progress was significant enough because my uterine lining was still "too thick" for her liking, so she scheduled me for a MVA for Wednesday AM and sent me home with more RXs to take "in order to prepare for the procedure".

Wednesday:  Had to take Misoprostol pill {plus some antibiotics} 2 hours prior to my MVA.  The instructions were to insert vaginally but luckily I had the guts to ask my doctor on Tuesday if there were any other possibilities, and she told me I could put it under my tongue.   {Another thing I would've appreciated her being more forthcoming about!}  At the time I didn't know the side effects/reasons for taking the Misoprostol; I thought it was required for the MVA because she didn't really explain any other reasons for taking it.  However, it had an effect on me similar to the Methotrexate, though without as much cramping pain {but definitely some!}. Since my own experience, I've read up on these drugs and I now know that both the Methotrexate and the Misoprostol are not necessary to take prior to a MVA or D&C -- they're usually used instead of the surgical options.  After taking them, it is also typically recommended to wait anywhere from 1-3 months before trying to conceive again, which was not disclosed to me by my doctor.  I don't know that I would've refused the scripts, but it would've been nice to have the information prior to picking up the pills from my pharmacy and being blindsided, while experiencing severe physical pain and sleep-deprivation.

{Read about my MVA experience here.}

*****

So, what started out for me as a "spontaneous" natural miscarriage ended requiring pills, more pills, and a surgical intervention to complete.  Those 3.5 days were exhausting.  The good news is that about an hour or so after the MVA procedure was complete, the cramping and pain stopped, which was a huge relief.  I was able to take an additional 2 days off from work, which allowed me to sleep, mope and cry at will, and watch TV to try to take my mind off of what I'd been through.  Asking for that additional time off was a good decision.

In sum, the miscarriage process can be hard on your body and emotions, and all treatment options have their pros and cons. It is a personal preference whether you prefer to be at home in private, whether there is someone who can stay with you at home in case of emergency, whether you just want to go the surgical route and get it over with quickly but with the caveat that there will be lots of doctors and poking and prodding involved, etc.

My experience was a combination, so I can now see the pros/cons of the different options. But, all of the steps I experienced occurred at the direction of my doctor -- I was in too much shock to really ask any questions or ask about other options, I just followed orders blindly and cried. The only thing I'm thankful for is that I somehow thought in a moment of panic to capture the tissue sample I passed at home in the middle of the night, because that was the only tissue able to be tested for genetic abnormalities. {There was no useful tissue collected from the MVA.}  That one event ended up being really helpful in my process because it provided some type of information and some form of an answer to explain what had happened.

My advice to anyone out there going through this is to take care of yourself, lean on friends and family for support, and follow your instincts.  Do what feels right for YOU and ask lots of questions until you get the information you need.  Once it's over, take time off from work if possible to rest and try to heal emotionally and physically after the medical process is over.  Nobody should have to go through this -- sadly, too many of us do.

Genetic Counseling

Since Tuesday's phone call, I've been trying to wrap my head around the idea of genetic counseling and testing.  Of course one of the first things I did after speaking with my husband is turn to a trusted online support group for help and information.  Luckily, I received some very good responses that helped me to stop assuming only worst-case scenarios (even if only momentarily), so I thought I'd share some of this helpful and wise advice:

Counseling

• Seeing a genetic counselor isn't the same as needing genetic testing. It's just talking with someone who knows more about this sort of thing than our OB, and can answer exactly the kinds of questions we have: What exactly was the genetic error in this case? How likely is it to happen again? What are the statistics for it being a random error? Should my husband and I be tested? 
• My OB might be required to send us to genetic counselor because we did tissue sample analysis of the miscarriage product and came back with a result indicating this abnormality.  (It may not necessarily be because we are in some path for persistent genetic defect.)
• Seeing a genetic counselor can be a good, reassuring experience because they can put things into perspective. (Seeing one doesn't always have to be a bad thing.)
• The genetic counselor will have had extensive training both in genetics and probability to really explain what is happening. There is a lot of genetics information on the internet but just enough to get one to the "shoulder of knowledge" where you know enough to scare yourself but not enough to fully understand the situation.
• Genetic counseling is not something to be afraid of.  Most doctors really do not know very much about genetics and genetic issues, but genetic counselors do!

Testing

• We'll need to decide if the information from the test would be useful to us. If we'd rather not know, or if we wouldn't do anything different based on the test results, then we might not want to get tested. If we would do something different, or if having the knowledge would help us even if we don't change any plans or actions, then we should get the testing done.
• With a translocation, it could be that the mutation happened in the embryo, or it could be that me or my husband have the mutation as well. Genetic testing can tell us which of those is the case.  If it turns out that neither of us has a translocation, then our odds are pretty much the same as average and we can proceed with future conceptions without a cloud of dread hanging over our heads.
• If the mutation did come from one of us, then any particular embryo could have about a 50-80% chance of having either too much or not enough genetic material. We'd still have a shot at a healthy pregnancy conceived on our own, but our risk of miscarriage or chromosome problems would be high. So, depending on the results of the genetic testing, we might decide to get IVF with pre-implantation genetic diagnosis, in order to attempt only getting implanted with embryos with good chromosomes. This would reduce any future miscarriage risk (but of course IVF has its own drawbacks).
• Just because we don't know of any inherited chromosomal abnormalities in our families doesn't mean they don't exist. The only way to know is to test, and knowing means that if we want to do prenatal testing for a future pregnancy we will know what to ask them to look for. (CVS/amnio does not test for "all" issues; only a handful of common ones are routinely tested unless there is reason to ask for specific additional testing.)

Bottom Line:  Step away from the internet searches for now, focus on meeting with a counselor and see what the testing results really say.

I'm still so sad and angry though that this happened in the first place.  Having to meet with the counselor makes it feel even more real when I'm having a hard time accepting what has happened.

I keep trying to remind myself that about 30% of known pregnancies end in miscarriage. While this was our first, it doesn't necessarily mean we won't ever go on to have a healthy baby.  Most miscarriages are due to a chromosomal abnormality and most are never even sent for genetic analysis, so we have information that many couples would not get, or wouldn't get unless they had several miscarriages.  I know I should be grateful for this information and the option to meet with a counselor after our first loss, but actually feeling that way is easier said than done.