Infertility Blog

There is a certain Dr. Licciardi who specializes in infertility and keeps a blog. As blogs go, I wouldn't say this is an absolute gem, but he does give good information for those struggling with infertility. Back when I was googling up a storm, I came across a few posts of his, which touched upon septate/bicornuate uteri. Thanks in part to his info, I am not ready to believe my uterus is bicornuate.

In this post, he describes the difference between SU and BU in a straight-forward manner:

This is an issue I have been dealing with since the start of my practice. It’s the identical story over and over again. I came across the same thing 2 times this month. The issue is far from trivial because the proper diagnosis will change the method of treatment. Delayed diagnosis (sometimes for years) will delay and sometimes prevent pregnancy.

OK, what’s a bicornuate uterus? A bicornuate uters is an abnormality in the way the uterus is shaped. It does not develop; some women are born with them. Uterine and/or vaginal abnormalities that are present from birth are lumped into a category of Mullerian Abnormalities. There are many different varieties, and all are rare.
In a girl embryo, the uterus starts as 2 tubes that merge together to form a larger hollow structure. If the 2 tubes do not completely come together, a bicornuate uterus develops. It is a uterus with 2 horns , one going out to the left and one going out to the right.

This is a very general description. There are tons of variations. Some bicornuate uteri have larger horns and are not connected in the middle, and others are mostly connected in the middle with just a small amount sticking out as horns.
Here's the rub. I have seen many patients who were told they have bicornuate uteri but their real diagnosis was a septum. This mistake has happened even if the patient had a HSG, 3-d ultrasound, 3-d sonohysterogram, MRI or even hysteroscopy.

So what? It’s a big what. The uterus with the septum is smooth over the top. The bicornuate dips at the top, sometimes considerably.

So one nurse telling me it's "bi-corny-it" doesn't do it for me. I expect my RE to know the difference and properly diagnose me.

Dr. Licciardi describes the implications of different diagnoses in this post:

The reason it is vital to know your diagnosis has to do with treatment. If you have a septum, most (not all) doctors would recommend treatment. This is because an experienced reproductive surgeon can fix a septum relatively easily. It’s done through the vagina using a hysteroscope. The doctor looks in, then slides a tiny scissors through the scope and makes small cuts at the septum until it is gone, making the uterus normally shaped. Some doctors will recommend a laparoscopy at the same time to guide themselves through the surgery. Others will perform the surgery using the hysteroscope and an intra-operative ultrasound to guide them, avoiding the laparoscopy portion. In either case, patients go home the same day.
A bicornuate uterus is a whole different story. To fix this a doctor needs to perform a laparotomy (an incision into your abdomen), then slice the uterus wide open, then sew it up in such a way that the 2 sides come together to make one round uterus. As you can imagine, this has a much higher complication rate, and has a higher rate of infertility due to post-op scar tissue. Hospitalization can be 2-3 days. Full recovery is 6 weeks. Because this procedure is more difficult and has a higher complication rate, it is rarely performed.

This gets us back to the very beginning. If you have a septum, but your doctor calls it a bicornuate, you probably will not be offered treatment and be faced with continued increased odds of infertility and miscarriage. If the correct diagnosis of a septum is made originally, you could have a more simple procedure that may increase your odds of reaching your goal.

Many patients have come to me with a diagnosis of a bicornuate uterus. Told surgery was not a good option, they ask me what else can be done to help them get pregnant or reduce their odds of miscarriage. Some actually have a bicornuate uterus. Some are very surprised when I tell them they really have a septum and should revisit the surgical option.

If it turns out it is BU, so be it. But I won't believe it till I hear it from a specialist. Oh, and have I mentioned that SU is twice as common as BU? According to this study (PDF document; scroll to the second page for a chart), SU occurred in 1.4% of the population, and BU in only 0.7%. Now, we all know how I feel about the odds, but now that I'm much, MUCH more hopeful and optimistic (I WILL have babies), I feel comfortable with hoping for the most common of the MAs.

"ABNORMOL"

At the imaging center when I was checking in for my ultrasound, I peeked at the chart, and I saw the above written in big letters. I had to grin. "Abby someone. Abby Normal." That's me!

Just now, I asked Erich, "Why do I have to be the one with an abnormal uterus?"

His answer, with his signature dimple and eye-sparkle: "Because I don't have a uterus!"

Love that man.

The Next Step

I'm so glad I didn't have to wait too long to get to this point: I have been referred to an RE. Though I was expecting an MRI (and may still have one), I find myself very relieved that no more time is being wasted on tests ordered by someone who just doesn't have enough knowledge about my problem. So, goodbye for now, Dr. P and hello, Dr. M!

The person who called me this morning (another office monkey, I don't know if it was a nurse or what), said my uterus is bicornuate. She pronounced it "bi-corny-it." I still refuse to believe that's the final answer. I know for a fact that the ONLY 100% reliable diagnosis is the "gold standard" laparascopy/hysteroscopy combination. Unless surgery confirms complete bicornuate, I choose to believe I have a treatable problem. I'm so happy that I'll be able to make a list of all my questions and have a hope of getting them all answered by a person who specializes in uterine abnormalities and surgery!

My appointment is May 13, three weeks from today. Again, I wait patiently. I realized after my last post that I have reached some kind of mental equilibrium. I find I worry less and less about what's going to happen as I gently oscillate between waiting with mild depression and waiting with patience and optimism. I feel pretty confident right now that I'll be able to wait out the next three weeks with optimism.

Three weeks really isn't long to wait to see an RE. I have a lot to keep me busy in the meantime. I can stay positive.

Waiting

Always, always waiting.

Life is going on: everyday activities are not on hold. But right now, my life seems to be a series of waiting for the next thing. Waiting for my stupid period, waiting for a test, waiting for test results, waiting for another test, waiting for more test results and waiting to hear what test I'll have next.

Hope has been a constant ebb and flow. Every fresh surge of hope starts to fade before I'm done waiting for the next thing. I'm hoping for the hope surge that lasts nine months and is only the beginning.

I'm getting used to this process. I've come to assume lots of things. For one thing, I assumed I would not get straight answers quickly. I still assume straight answers will be hard to come by for a few months. I assume I'll have to ask questions and be insistent about what I know in order to keep moving forward. I assume I'll be put through more diagnostic tests before the word "surgery" is even mentioned by the medical professionals. And, of course and above all, I assume there will be much more waiting.

I'm waiting for my doctor to call me with results from the ultrasound. I hope she calls me soon and that she is knowledgeable about my problem. I assume that MRI is up next. I'll wait for that test. I hope it shows that I have only a septum and an otherwise normal uterus. I assume that no matter the outcome, I'll have to wait several weeks or months for treatment/surgery. I hope diagnosis/treatment/surgery is successful. I assume that I'll be able to have kids in the future. I hope I don't lose any more babies....

It doesn't end.

Optimism Returns!

Just as I had feared: the HSG was almost a complete waste of time. It was such an uncomfortable procedure, it yielded unexpected results, and the cramping and need to wear pads afterwards brought back some really painful memories from my m/c and D&C. Up until last Thursday, I was thinking, Okay, I have either SU or BU. The HSG had me thinking I either had a unicornuate uterus (do not want!) or a normal uterus tipped to the side for some reason. It took the wind out of my sails and left me quite depressed for a week, though I didn't realize how much it directly affected my mood until...

I had my ultrasound today, and it was a very good experience! I cannot express how much better I feel now. All the people at this imaging center were extremely nice, including the tech who answered all of our (my mom went with me) questions to the best of her ability. Compared to the HSG, this test was downright pleasant. Without going into all the particulars, I am happy to report that I do indeed have two ovaries, and a normal-sized uterus. There is a definite division inside--the tech guessed that the septum goes all the way down to my cervix or near it. We were unable to get a good picture of the outside contour, so I'll probably have an MRI next to determine whether it's normal on the outside (totally fixable) or heart-shaped (partially fixable).

Granted, this is only what I learned from the tech today. The radiologist at this facility will look over the images and make his/her report to my doctor, at which point I'll learn the official findings. But I feel confident now that it is only a matter of time before my uterus becomes "good enough" to support a pregnancy. Please keep the prayers and well-wishes coming that everything will continue promisingly.

And pardon me while I go frolic in the beautiful spring sunshine! :D

HSG Follow-up

Just a quick post today.

I finally got a call from Dr. P's office today. They basically confirmed everything I had suspected. The left tube didn't open, so they will do a pelvic ultrasound to determine whether it's a simple blockage or not. If it is, I'll be referred to another doctor who will "take care of it and [I] can become pregnant." If not? ...I don't know. If it's not a simple blockage, does that mean it doesn't exist? I suppose that's a "wait and see" item.

The lady on the phone also talked about uteruses that are shaped "differently" and they're called "bicornuate." Mmmhmm. I refrained from the urge to explain MAs to her. I had been warned that doctors use "bicornuate" as a catch-all term. Anywho, I asked about the shape of my uterus itself (I'm not as concerned about the tube since I know I have one that works well) and she said "it's bicornuate," then hedged and said the ultrasound will show everything that's going on. I hope that's true.

Here's the absolute best news: I already talked to the imaging center who will do the ultrasound (the staff were really nice!) and they had available appointments for TOMORROW! Hooray. I can't say I'm actually excited to learn more; I'm still a little bit afraid at each step in this journey, but I'm really glad that I won't have more than one night to sit and dissect everything I found out from Dr. P.

10:30 tomorrow. Here's hoping everything looks normal on the outside (two ovaries, two tubes and a normal-shaped uterus). I can deal with things that aren't normal on the inside.

Let Me Off

I've changed my mind. I don't want miscarriage. Who do I see to get my baby back? I'd be cool if we could just pick up where we left off, really.

After two months, it hasn't gotten any easier. If anything, it's gotten more difficult. Every time I see a pregnant belly, there's a squeezing sensation in my chest. It's a picture of what my life would be right now if it had continued to be easy. But alas, it feels like my days of getting through life easily are over.

I have a lot of things I want to call my doctor about right now. But I'm still waiting for HSG results. So I'm stuck in limbo again, unable to decide whether to just go ahead and call or wait another day or two for them to call me.

This will probably turn out to be an inaccurate perception, but I feel like I'm waiting for a phone call that will tell me whether I still have hope of having my own children. I do realize it's more complicated than that and at best, there will be more testing to figure out what, if anything (grr), is wrong. But I need something new to look forward to. I need to be told that the next test will give a really clear picture of what's going on and treatment (or cure!) will be right around the corner. I'm losing hope that it will be that relatively simple.

I'm running out of hope on my own; I need someone else to give me some.

I should be finding out if it's a boy or girl right now, not waiting to find out what's wrong with my uterus. So, it would just be much better if I could get my baby back. Please.

Progress

I've been really depressed all week. I know much of it was due to jetlag, being away from Erich, and apprehension about the HSG. As thrilled as I was to schedule it, once it sank in that it was so close, I started getting very nervous about the next step. I realized that there was still a chance that my uterus could be normal, or there would be a clear problem (like a clearly divided uterus indicating SU or BU), or much worse, inconclusive. And lo and behold, I've got a big fat inconclusive as of immediately after the test.

So I felt really down about it all day. And even though the initial cramping went away when the liquid drained out (thank you, leftover extra-huge miscarriage maxi pads), a general feeling of crampiness and gassiness returned and did nothing to help my mental state. (And neither did the dark and rain that persisted outside!) I let the feeling of hopelessness wash over me. Though I still officially didn't know anything, I started thinking my uterus is just inhospitable to pregnancy and always will be. Not a happy thought at all.

My best option was to consult Google, with whom I have a love/hate relationship. It's good for finding out about things about which I have no knowledge, and it's abysmal at personal diagnosis. But I needed something--anything--to grab onto. And I'm glad I did. I googled "uterus tipped side" and got results, enough to know it does happen. That fact was enough to remind me that I'm not a health professional, and even though I've gotten to be pretty knowledgeable about MAs, there are plenty of other possibilities as to what my problem may be (if anything).

As Erich helped articulate for me, it's a fine line between being an advocate for my own care and trusting the professionals to come up with real answers. Luckily, I have to wait only 3-5 days for results. I believe that's short enough for me to be able to stave off excessive googling and speculation. After all, there's still a chance that I'm normal.




(But if I'm normal, why did I have a miscarriage??)

My HSG

Here's what I know: not much.

But I should start a little closer to the beginning. I got to the hospital, registered, and got called in pretty quickly. I got to wear two hospital gowns, so no embarrassing openings (bonus!). A very nice nurse walked me through the procedure before the radiologist came in and offered reassurance.

Then the radiologist came in, a pleasant enough man. He echoed much of what the nurse had already told me: this procedure was not going to be fun and there would be pain, but most people do okay with it. So now that I was totally excited about the HSG, he asked a bit about my history and why I was there. He also asked if I'd ever been told my uterus was abnormal before, and I casually mentioned that I had been told it was tipped during my first ultrasound. Then it was down to business!

Let me reiterate: absolutely nothing about an HSG is pleasant. First there was the dreaded speculum, then he cleaned my cervix, then the catheter went through my cervix and my uterus was flooded with an iodine solution. Sounds simple, but let me tell you: It. Hurt. But once everything was in place there was some relief.

The large x-ray machine hovered over my midsection and started taking pictures. Luckily, I could see the screen and watched it with apprehension. The radiologist removed the speculum (more pain relief, thank goodness) and had me move from one side to another and then all the way over on my right side then to my back again. It seemed like only one side filled up with the dye, and I could see only one tube. Could it be unicornuate? I wondered.

Afterwards the Dr. confirmed that the dye didn't go into my left tube, which he shrugged off as one of those things that happens sometimes. He asked me whether I was told to which side my uterus was tipped. I replied that I assumed it was tipped back, not to one side. He proceeded to tell me that it looked like it was tipped a bit to the right, and he was not ready to call it abnormal yet. He would look at the images more closely and then send a report to my doctor. He told me he would recommend some follow-up ultrasounds to get a better look at everything.

[In retrospect, that's pretty annoying: ultrasound can be done at any point in the cycle, and I wouldn't have had to wait this long to get going on diagnosis. It's been 8 weeks and 1 day since my m/c!]

Dr. Radiologist will send a report to my doctor, and I'll hear back in 3-5 days.

Optimism Continues

Spain was wonderful. The first weekend was especially grand, as we spent Saturday in San Sebastien, a beautiful tourist town with a beach, and it was gloriously sunny and warm, a wonderful contrast to the snow and wind we left in Chicago!

By Sunday night, though, I started to return to reality. The distractions of culture shock had completely separated me from my physical troubles and memories, which was nice at first. And then I discovered that emotional pain is like a toxic substance that needs to be constantly vented. The toxic substance built up until it all burst out at once, and I hit a low point. I went from the happy traveler to a miscarriage sufferer in a matter of moments. The PMS and nasty yeast infection with no hope of treatment for over a week made matters much, much worse. I forgot my optimism and felt some despair, compounded by the stresses of jet lag and being in a new country where I didn't speak the local language.

[By the way, this post is about menstruation. If this doesn't interest you, you may want to just skip to the last paragraph.]

But then, the flicker of hope. That twinge of pain in the lower abdomen which grew into definite, obvious menstrual cramps. I know those and remember those; there was no more guesswork as to whether it was just ovulation or my uterus simply changing size and shape (like when I was pregnant and afterwards). The pain was the worst on Wednesday morning. I had forgotten just how bad my cramps could be before I ever went on BCP. And I absolutely reveled in it. And, indeed, AF arrived that morning. Despite my fatigue, cramps, and bloating, I had a big spring in my step when I went out to explore Bilbao that day. The thought of tampons put a huge smile on my face. I knew I was looking forward to AF, but I was even more relieved and delighted than I thought I would be. This signified not only moving toward the next step but also moving away from the past. My body had done the most obvious thing it could do to prove it could behave normally; it cleansed itself of its own accord and I felt the last physical remnants of the miscarriage leave. The sense of relief was palpable.

When Erich got back to the hotel room that evening, I told him my good news, and he helped me make that wonderful phone call. I have scheduled my HSG for this coming Thursday. I'm hoping that I will either be able to look at the screen during the test (I've gotten a good idea of what septate/bicornuate uteri look like on an HSG by now!) or that I will at least have results soon after the test. The fact that I won't get a full diagnosis from this test no longer concerns me in the least: it will be a valuable first step, and when all is said and done, I really didn't have to wait that long. I'm feeling good about this. Thank you, Optimism!