Hypochondria

There are very few things worse for a hypochondriac than to actually have an illness, disease, syndrome, disorder, etc and double that worseness if the malady is rare. 

I am a very self-aware hypochondriac. I remember sitting on the landing between the master bedroom and the dining room at my grandparent's house reading their medical dictionary. (Who owns those, anyway? I wonder where that went...) I loved to use medical terms and exclaim, "My spleen hurts!" 

When I was pregnant with June I was very careful to explain to Dr. Man that I erred on the side of paranoia when it came to my health. I always armed myself with a notebook full of questions for every visit. He was incredibly patient and explained his answers with full medical terminology and balanced with the gentle reassurance I needed. Thomas was surprised with how low-key I was and how great I felt most days. I have to say, I impressed myself too. 

I officially have Asherman's Syndrome. Basically, my post-pregnancy, post-d&c uterus has scarred itself shut; instead of healing in a healthy manner, it just scarred onto itself. I have about 75% of my uterus surface area that is "healthy" and viable. The remaining 25% is shut. Gone. Unavailable. 

This is a problem for a few reasons:

At the moment, I have fluid in my uterus from only God knows what. Even Dr. Latino has no clue what it's from. However, we do know that it cannot come out. It could be stuck in that scar tissue. It could be that the bottom of my uterus is too scarred for it to be released.

For the future this is a problem because when we choose to get pregnant, there is a limited amount of surface area for the embryo to implant. This raises the risk of miscarriage. This raises my anxiety. Dr. Latino has taken me off estrogen and told us that our new plan is "hands off." His thinking is that getting pregnant right now may be the best thing for my body. It may open my uterus and give it time to heal. Is this ideal for us? No. Do we desperately want another baby even if it's RIGHTTHISMINUTE? Yes.

Side note: It's so incredibly odd for me to say, "we're (thinking of) trying for baby #2!" Why? Well because that basically just means, "we're having a lot of sex!" Think about it. It's just a declaration of a lot of unprotected sex. 

So I guess to sum up my health right now I'd say that it's problematic. If we can get pregnant, it will be considered high risk from day one. I will more than likely need to be on hormones to assist the embryo with growth and development. I would love to hear from friends and readers if anyone has ever had any sort of reproductive issues. I truly accidentally got pregnant with June and so this whole thing is so foreign to me. How did you decide to "try" to have a baby? Did you check your ovulation? Was it like the movies where you rushed home because you were ovulating? If you don't feel comfortable with leaving a comment here, please email me! 

amber.losey@gmail.com

I NEED this plush toy. Please, someone, buy it for me. Seriously. www.iheartguts.com/uterus.

Healing

(Full disclosure: I'm on pain medication and recovering so this will not be the most impressive blog I've ever written. And there are pictures!) 

This is the first surgery that I haven't come home from feeling like we've finally fixed the problem. In fact, I feel defeated. I don't know if it's the fact that we didn't find what I thought we would or that some aspects of the surgery went differently than I expected. Let me back up and explain...

The days leading up to the surgery were a whirlwind. I saw my new dr, Dr. Latino, on Monday and by Wednesday the surgery was scheduled for Friday. On Thursday morning I received a call from the hospital telling me that my insurance had been terminated. I frantically made phone calls, faxed paperwork, signed statements, cried, plead and begged and somehow, it all worked out. Insurance companies have never been on my side but this time, they were watching my back. 

I was scheduled for 330pm on Friday and while speaking to the nurse about my health history, it was changed to 1230pm instead. Nice because it meant that I would be in and out faster. Thomas and I kissed the Junebug and headed to the hospital at 11am. Check in was smooth, I was in the hospital bed, with an IV and on pain meds by 1230. The dr was running late but things were okay. The nurses came back no less than 4 times asking if I was pregnant. Um, please don't jinx that ladies. 

I was wheeled back around 1pm and awoke around 4pm. Apparently the surgery was longer than they anticipated and I took a while to wake up out of the anesthesia. The first thing I remember is Thomas saying, "they didn't find endometriosis." I cried. It's a very hard emotion to explain. Relief and frustration and annoyance mixed with pain. I knew it meant that we didn't really have answers. 

Thomas relayed what he could to me but Dr. Latino had other women to attend to and I had taken too long to wake up. I only had second hand information to work with for the time being. Friday night and Saturday morning were difficult. The gas that they pumped into me during the laparscopy settled into my right shoulder and chest. The breathing tube had scratched my throat and I could barely talk, as well as creating a cough. This made me cranky. 

Friday night I didn't sleep well so I was glad to be able to nap Saturday. I was uncomfortable all over - the incisions, the actual surgery and the foley balloon that had been inserted. 

Saturday around 7pm I got a call from Dr. Latino. He wanted to see how I was doing and go over everything. This is when my frustration grew. Here's a run down of everything:

-A foley balloon was inserted into my uterus to keep it from scarring shut again. I knew this had been done because, well, I can feel and see it. It's filled with 7ccs of saline an on Tuesday I can remove it myself. That means I have to drain it and pull it out...myself. He said some women can only stand the balloon for 2 or 3 days because it's so painful but I have to keep it in for 5 full days. For me, if this means I can have more babies, I'll do it. It is incredibly painful but hey, so was having a baby. It'll be worth it.

This is inside of me!

-The incision he created in my belly button was intended to not only be an incision but he tried to fix my scar from my belly button piercing. It didn't go too well. Apparently, the hole wasn't quite closed from my former piercing so I may have more scarring than before. Awesome! And yes, that means that it will take longer to heal and hurt worse. 

-They did not see any endometriosis. He took a biopsy of the lower ligaments from my uterus where it could be hiding but we won't know for sure until Wednesday, at the soonest. 

-I only have one fallopian tube that works, for sure. They did a dye test and the right tube passed with flying colors (ha, get it?) but the left one just kind of dribbled and never emptied. He reassured me, however, that women really only need one tube, one ovary and one uterus to get pregnant. So far, I have all of those!

-Oh, he perforated my uterus. So I now have a small, maybe .5cm, hole in my uterus. I have been warned that this could happen because my uterus is very delicate but I never thought it would actually happen because I was assured that it was rare. I should have known that "rare" meant it will probably happen to me. It should heal on its own but it's one more thing to "keep an eye on" and to worry about.

-I am now on an estrogen patch. In addition to the balloon, this will help keep the uterus "fluffy" and hopefully prevent it from closing again.

-At the end of the conversation I was feeling very sad and defeated. He assured me that we still had a few options left for my fertility and that at this moment, pregnancy would not be a good thing. So I feel good that there's no pressure right now to have another baby but at the same time, if my uterus keeps scarring, we won't be able to get pregnant again. It's a very sad and weird place to be in. 

While awake at 5 this morning I did some research on my own and found a syndrome that perfectly and completely describes my situation. It's called Asherman's Syndrome -"Asherman's syndrome, AS, occurs most frequently after a D&C is performed on a recently pregnant uterus ... to remove retained products of conception." Hey, that's me! With all self research and diagnosis, I need to remember to take it with a grain of salt, especially because it doesn't seem that the future of fertility looks good.

I know that I have THE most beautiful, smart and amazing daughter ever to be born and that's precisely why I want more. Imagine what else we could create! So friends, I'm in need of some major encouragement. Any words of wisdom? 

 Here's an overview of what my stomach has been through in the past two years:

My poor belly.

It's My Body, I'll Cry if I Want to

After 3 surgeries and 2 blood transfusions, Dr. Man is confident enough to deem me "healthy." I say that with relative hesitation because I don't want to jinx myself. I had my post op check up on December 16 and have been trying to process everything since then. (Oh, also getting married/taking a honeymoon/visiting with family/celebrating Christmas took up a wee bit of time also.) So here's a quick overview of the status of my uterus. 

The pictures Dr. Man showed me are kind of incredible. He showed me them next to a "healthy" uterus for comparison. Basically, I have no visible left fallopian tube, it is completely blocked by scar tissue. In his words, it's "obliterated." No one is sure why or how that happened. It could have been that way my whole life, it could be a result of pregnancy or a result of any of the three surgeries. My main concern, my future fertility, was not entirely addressed. Dr. Man wants to see how my body responds over the next few months, basically if I get my period, and then we will re-perform the hysteroscopy with an infertility specialist present. The issue has now turned from retained placenta to the possibility of my uterus scarring itself closed. There was an unhealthy amount of scar tissue and that's not good. However, I got my period the day of the wedding and while that wasn't the best timing, it was very exciting because it meant that things are working! Hopefully I keep a normal cycle and the worries will lessen.

As terrified as I am that I will suddenly become infertile, I am equally terrified of getting pregnant again. Does anyone else who has recently had a baby feel this way? I love, adore and dare I say, worship June but the thought of getting knocked up right now scares me crapless. I don't know of what I'm afraid exactly - the physical? having children close in age? the possible complications? Thomas and I are on the same page as far as spacing between kids and I am overwhelmingly thankful for that. I know not all couples can definitively say they know exactly how far apart they want their kids but we have a very precise plan and it feels awesome to have that together. So I don't know why I'm so afraid. We take precautions to protect ourselves from pregnancy but I can't shake the odd fear. Someone tell me I'm not alone!

Something has been weighing on my mind a lot lately - my mortality. I know, maybe an unpleasant thing to be thinking about but here's why, if it weren't for modern medicine I would have died in childbirth. And if not during childbirth, surely soon after. Two generations ago I would have been a statistic of maternal mortality and it's a very surreal feeling. Throughout my pregnancy I regarded medical intervention in pregnancy as a nuisance and unnecessary (which I still do) but today I am very thankful for that same medical intervention. I would have died as a result of not being able to deliver the placenta, or hemorrhaging, or the baby getting stuck, or the retained placenta. I'm struggling to let go of the nagging feeling that inducing labor complicated every aspect of delivery. I rationally know that it was necessary or I risked stroke, among other things, due to my high blood pressure but perhaps I need something to blame for the following problems. I also know that June was a big baby. Had we let her go to 40 weeks or beyond (which I think she wanted) she would have easily been 9 1/2 lbs or bigger. (Sidenote: I have a lot of friends who have delivered lately right around their due date or after and all their babies have been smaller or very close to June's weight. What's with that?! She was a week early and 8lbs 4oz, which I don't think is that big. Just a weird observation.) With a bigger baby comes the "big baby bias" which basically means a lot of doctors doubt a woman's ability to vaginally deliver a larger baby. It can be done, as we all know, but for some reason it makes some doctors nervous. Anyway, I'm getting off topic. All in all, it's a very weird space to be in - knowing that without certain medical advances I would have died with my child or left Thomas a single parent. It's a feeling that I'm constantly exploring and slowly becoming more comfortable with it.

One of my very favorite pictures of her recently. Her onesie says, "Pick Flowers, Not Fights." Mommy and Auntie Nat are introducing her to the hippie ways very early.

Fun Facts

Today I called Dr. Man's office precisely at 10:30am when they opened. The lovely front office assistant tried to make me an appointment for Wednesday. I was syrupy sweet as I told her, "no, you need to talk to Dr. Man. He will want to see me immediately." Of course, he did. They made me an appointment for 2pm. Thomas came home to go with me because not only did I not know what exactly this appointment was for but I needed an extra set of ears to compliment my drugged up ears. 

Good News: Um...well...they don't think it's anything cancerous! (And actually, I didn't even ask about this, I just assume they don't think that...)

Bad News: Dr. Man thinks it IS placenta. I still have close to zero answers as to why this is happening. 

So our plan of action is as follows - Dr. Man will get authorization from my insurance hopefully by Wednesday. If there's an opening to do the procedure Friday, we'll do it then. Dr. Man is technically off work Thursday-Sunday but he feels really badly about everything so he'll come in on his day off. Unfortunately it's not really an emergency, even though I'm in a ton of pain and there's a possibility of infection, so they can't "rush" the authorization. If not Friday, hopefully by early next week.

The procedure itself will be a hysteroscopy and a D&C. Dr. Man openly admitted that he's never done a hysteroscopy on a post-partum uterus so he's not sure how it's going to work. Usually, that would worry me but coming from Dr. Han Solo (Thomas' loving nickname) I feel confident. 

There's been some talk from family and friends about getting second opinions or changing doctors. Right now, I am in pain. Like labor pain, that bad. So the thought of holding out, finding someone who takes my insurance, getting an appointment, do more tests, then get another answer is absolutely excruciating. If after this whole ordeal there is still more pain or complications, I will try that route. But I truly believe that Dr. Man is doing all he possibly can to take care of the problem and that he is competent and able to figure this out.

So there's everything. I'm still scared. I'm still hurting. But now we have a plan. That's all I can hope for at this point.

Here's your fun fact for the day: the average uterus weighs about 90 grams. The last D&C Dr. Man extracted 107 grams of tissue out of my uterus. Yeah. That's a lot.

This is 100grams of ground beef...not my placenta.

Mommy's Health

It's serious time, guys. I'm not doing so well these days. As I said in this blog entry I had to have a second D&C about three weeks ago, followed by my second blood transfusion. It was basically a miracle procedure and I felt great after the initial recovery period. June and I were developing a great routine and I was finally enjoying our days. 

PS (In this case it's a pre-script): I'm sorry if I haven't reached out personally to family and friends during this time. Frankly, I'm having a really difficult time and don't feel like vocally verbalizing everything. This feels better than actually talking. Sorry, I love you all but this is how I roll.

For the past four days I've been in pain. The only way to really describe it is the beginning of labor; a rotation of dull and extremely sharp cramps. Unfortunately it feels exactly like the pain that prompted me to get checked out the night of my first emergency D&C. I waited it out thinking maybe my body was just trying to adjust and ovulate again. But last night the pain reached a level that scared me. My mom took me to the ER while Thomas stayed home with Junie. (How lucky am I that I have a mom willing to take me to the emergency room and a fiance to stay with the baby?) This was the third ER visit for this pain and I basically told the doctor what needed to happen. Dr. Man decided after the last D&C that we would wait until my first period to see if we needed to do a follow up ultrasound. So the ER doctor ordered an ultrasound. No stranger to these invasive ultrasounds (basically a wand with a condom is inserted into the vagina and they poke around to get the images they need, really fun stuff) I requested pain meds first. 

This is the ultrasound wand...it's not as fun as it looks.

The ultrasound was surprisingly quick and I was back in my room within 30 minutes. Because of the invasive nature of the ultrasound I was in even more pain after. The nurse came in and gave me more meds and while she was there she decided to check if my blood and ultrasound results were back yet. They were! Overall, I was incredibly impressed with Mission Hospital last night! Anyway, she started reading out loud. 

"You're only slightly anemic, that's good! hCG levels are at zero, also good. Okay, ultrasound, let's see. Hmm...it looks like there's retained placenta..."

I broke into tears and my mom literally yelled, "WHAT?!" Seriously? There's STILL placenta in me? After my doctor just got out over 100 grams of tissue? I cried. The doctor walked in about 30 seconds after the nurse delivered this news. He told us there was bad news and good news. 

Bad News: still tissue left in my uterus causing pain.

Good News: Dr. Man wants to do a hysteroscopy - look around the uterus with a camera - so I didn't need to stay overnight. 

Bad News/Good News: They do not think it's placenta. If it were, I would have some levels of hCG in my blood. However, they have no freaking clue what is in my uterus. No idea. What would be in there that has escaped TWO D&Cs? 

So I was sent home with a prescription for pain medication and orders to call Dr. Man first thing Monday morning to get the ball rolling on the hysteroscopy.

Here's the thing, I'm scared. For the first time in a long time I'm willing to admit that I'm incredibly worried about myself. My worries are as follows:

What if it's some sort of cancer or tumor?

What if they need to perform a hysterectomy?

What if it's an alien life form?

What impact is this going to have on future pregnancies?

How long will I have to recover from this procedure?

Can I really handle the stress of health issues and a wedding in 5 weeks?

Why is this happening?

I'm trying so very hard to look at the positives, even though I'm a notorious cynic and pessimist. I have a gorgeous, healthy baby. I have an awe-inspiring support system, including Thomas who has been incredible through all of this - either playing nurse or being a five-star single dad while I've been in the hospital. 

But what if? What if something is seriously wrong? 

Guys, I'm scared.