I remember my first big scare with my uterus.
Yep, I said it.
Uterus. It's a terribly unattractive word and I wish we could rename it. But if you're uncomfortable with me talking about my uterus, or another woman's uterus, or the uterus in general, this is not the post for you because it's all about the uterus!
When I was very young and newly married, a doctor poked around my abdomen and thought something might be wrong in there. Apparently it felt like my uterus was folded in half, called a
retroflexed or anteflexed uterus. Basically, one half was laying over the other half.
A normal uterus is about the size and shape of a pear and usually tilts forward toward the naval.
I set up an appointment for an ultrasound so we could take a look and see whether her suspicions were true. I got a little map in the mail to show me where my appointment was. They had a big hospital marked on the map so I went there. I went inside and was utterly lost trying to find where I needed to be! Finally I was directed to a line where I waited for long time, thinking I was in the right place. But when it was my turn to check in, they had no idea who I was or why I was there!
But they were able to tell me that I was in the wrong place altogether, the wrong hospital! My appointment was actually across the street and around the corner, marked as a little X on the map. That should have been obvious, I guess, but since all the other buildings were bigger and better, I thought it was a little misleading!
Of course, I was horribly late for my appointment, almost an hour. I knew I'd have to reschedule but after all that running around, I wanted to see if we could still do it somehow. But they said no.
I was so emotional about missing my appointment and getting so lost. Let's all take a moment and be thankful for googlemaps now. I had a few choice words for the ladies at the front desk and struggled to hold back my tears as I expressed my feelings. "Look at this stupid little X! Why would I go there and not this big bold hospital you have marked on the map!?"
They probably had a good laugh about that. It's really quite funny now and kind of pathetic. I was so young and had no idea about medical facilities and all that so I paid the price for my own naivety. I called up my husband to vent but was so sobby and upset that I couldn't even convey what had happened.
I came home and cried some more and eventually told my husband what had happened and that I had to reschedule my appointment. I remember him saying, "Oh. I thought you were going to say you couldn't have kids."
"Oh, no." I said, "I'm not worried about that." Ha!
Well, I eventually had my ultrasound and everything was fine. False alarm. No big deal.
I do have a retroverted uterus (often called a tipped uterus), which means my uterus falls back instead of sitting forward in my abdomen. But all that means is that I get my menstrual cramps in my back instead of my front! It's not a cause of infertility.
That first ultrasound was so long ago. I never worried about there being any problems with my uterus after that. But in 2012 and 2013, when I kept losing all my pregnancies, I definitely got suspicious and decided to do some testing and research.
There are actually quite a few uterine issues that can influence whether an embryo will implant and survive in the uterus and I had to learn about all this so I knew what to look for.
Some women have a different shape to their uterus, almost like a heart. Think of it like a hospital room with a curtain partition hanging between the beds. Instead of an open curtain and an open room, the curtain has been pulled out and is splitting up the room a little bit. That won't prevent an embryo from implanting, but once the baby starts growing, that partition is going to get in the way.
Some women are able to have this surgically corrected and have that curtain, called a septum, removed. Some can go on to have successful pregnancies. But it's not always easy and it certainly can cause complications.
I know one family who had to deal with a septum in the uterus and a whole lot of heartache because of it. Her name is Nia and we were friends back in Hawaii. She shares her story in her own words:
Shortly after I got married in September 2009, I went in for
an ultrasound and found out that I had polycystic ovarian syndrome. I was told I would have a slim chance of getting pregnant or having children. I was pregnant
however in 2010 but it ended in a miscarriage at 9 weeks. I was yet again pregnant in 2011 and delivered our first little girl at only 5 months. She
passed away. I had a lot of scans and ultrasound afterwards and we discovered
that I had a septate uterus. I was told that I could have a surgery to remove the
tissues dividing the uterus so that the baby could have space to move and grown
inside.
We were students at the time and the insurance we had denied
such surgery which left us devastated. We didn't know what to do and we longed to
hold a baby of our own in our arms. Sadly we had another baby girl in 2012 but she was also born premature at only 6 and a half months and passed away after 5
days.
In 2013 February we decided that we needed to do the surgery
so that we could be able to carry a baby full term. My husband had a full time
job and an insurance that covered some of the costs for the surgery. The surgery
is call hysteroscopy with resection of uterus septum. It was a 50/50 chance
that it was going to work but we had faith and with support from friends and
family we went ahead and did it at Kapiolani Hospital in Hawaii. In 2014 we
tried again and we got pregnant for the 4th time. I had a stitched cervix for 5
months, but a lot of space in my uterus. Our little miracle girl was born
November 10, 2014 on her due date.
Nia and I would chat sometimes when things got hard. Though we had different trials, we could relate in many ways. Both of us had a wonderful 2014 because we both got our long-awaited miracle babies. And CUTE babies too!
Another uterine issue is endometriosis, which can also cause infertility. Oddly enough, the lining that builds up inside of the uterus each month can build up outside of it instead, or even build up on other organs like the Fallopian tubes, the ovaries, and even the bladder! This lining will shed each month, just like it does inside of the uterus, and can be very painful, especially since the blood has nowhere to escape! That blood can build up inside the pelvic area and cause all sorts of problems. Women with endometriosis can still get pregnant, but the wayward lining can sometimes obstruct tubes and get in the way of fertilization.
My friend, Amanda, has endometriosis. I asked her to share her story and this is what she said:
My experience with endometriosis? Pain. Physical and emotional. My periods were painful in high school and became progressively worse throughout college. I didn't know that each month my body was bleeding in places it shouldn't be, and that the bleeding inside was scarring my body and adhering my organs together causing the pain to worsen. I thought it was normal "period pain" and that I just had it a little worse than other people - you know, everybody complains about their cramps.
I got married at 23 and being intimate with my husband was excruciating. I again thought that was normal, since nothing wrong could be seen from my regular exams. We wanted to get pregnant...and nothing happened for two years. Both of my sisters have four children so I didn't think there would be an issue with me. My friends began their families. They added to their families. I finally met a gynecologist that asked me questions about the pains I was having and our inability to get pregnant. She scheduled and performed the surgery and found severe endometriosis.
It was good to have an answer as to why I wasn't getting pregnant. I had surgery and the doctor burned what endometriosis cells she could and also removed the adhesions that were caused by the blood building up. I had excruciating pain when I had to poop because my intestines were attached to my body cavity and couldn't move freely. There was endometriosis on my bowels too but that couldn't be burned (or I'd have a colostomy bag). I took shots to put me in menopause for three months to try to get the rest of endometriosis under control.
I then tried Clomid to get pregnant and hyperstimulated so badly that my gynecologist told me I was beyond what she could do for me and referred me to the infertility specialists. I had a consult with them and realized I would likely never be able to afford the IVF treatment recommended for my situation. The pain I had with my cycles had eased significantly after my surgery, which was a welcome relief. But...no baby.
Four more years passed. A series of events progressed along and I was hired on at a company that actually had an infertility benefit (very rare for my state). And it was a GOOD infertility benefit. We started the process. The blood draws, hormone shots, appointments for monitoring, and anxiety were uncomfortable and inconvenient, but I had my chance at having a family so I did not complain. I hyperstimulated on the meds, my abdomen swelled, and I was in a great deal of pain but I wanted this so badly that I pushed through. They retrieved 20 eggs.
We ended up with five embryos that were good quality for transfer. Because of the additional testing, I knew the genders ahead of time and asked for one of each to be transferred. We waited...I tested early (against recommendation) I and finally saw something I never had before. A faint positive. But it was positive. I was elated, and then tried to keep myself in check just in case things went a different direction.
I counted down the days to each milestone throughout my pregnancy and felt a sense of relief when each one was passed and then began to worry about the next one. One of the most significant moments for me was an ultrasound at 10 weeks...I saw their little limbs and hands moving. They were dancing around, they were REAL. I was so thankful for each day that passed and my body kept them and nurtured them. I felt the peace I had been missing.
I still have issues with endometriosis. One of the main treatments after surgery is to be on birth control, but I would like to get pregnant again. It's a hard line to walk. I am so grateful that the IVF process was successful, there are many others who share my situation and things have not gone the way they had hoped. Women and couples that struggle with infertility feel pain, frustration, and isolation that on the deepest level are understandable only by others that have experienced the same. Love, support and sensitivity from family and friends is crucial to get through your darkest days and nights.
Amen, Amanda! What a rollercoaster ride this is! It makes it worth it when you see those adorable faces. But boy, does it hurt!
As for me, we knew that I didn't have any anatomical issues nor did I have endometriosis. But there were a few other tests to run to see if my body was responsible for aborting all my pregnancies.
We needed to do some blood work to see if I had an autoimmune disorder. Thanks to our immune system, we have all these little antibodies floating around looking for things that are foreign in the body, things that are not supposed to be there. Without these antibodies, we would never get better from an illness!
We love our antibodies but sometimes they can get a little overzealous and start attacking things that are not foreign, start attacking our own bodies!
Organ transplants are a great example. You may have heard that a close relative is the best candidate for donating an organ. That's because their biological makeup will match well with yours and that's very important! Once you put that new kidney in, those antibodies are going to check it out and see if it fits. If it's a kidney from your brother, than it probably won't look too different and the antibodies will be happy with it. But if it looks a lot different than the rest of the body, then those antibodies will assume it's foreign and start to attack it. Basically, the body rejects the new organ.
With autoimmune disorders, those antibodies sometimes go around attacking our cells and organs as if they were newly transplanted and not our own. It's like they're on overdrive. There are various autoimmune disorders out there and some of them can be very devastating. It is no walk in the park to be stuck in a body intent on harming itself.
Sometimes, those haywire antibodies can attack the uterus or the embryo itself and will cause the loss of a pregnancy. After my second and third miscarriage, I was screened for those antibodies, called antiphospholipid antibodies, commonly associated with lupus. Why women are not screened for these antibodies from the get go is beyond me!
For those with lupus or other autoimmune disorders, getting and staying pregnant can be very difficult and sometimes impossible. Some women find out they have an autoimmune disorder and stop trying right then and there because they know their chances are so slim. For others, the journey can be very painful, especially when losing so many pregnancies.
I did not have lupus or any of these antibodies so we knew that was not an issue. But I know someone who does. Thankfully, she has had a lot of success in having a family, but not without difficulty. She shares her story here:
My name is Jen. I was diagnosed with Lupus in 2004 shortly
after being medically released from the Army with Fibromyalgia. I was started
on Plaquenil. I had already had one miscarriage in 1997, long before I knew
there was any autoimmune issues going on.
About a year afterwards I became
pregnant. I was referred to a perinatologists (high risk pregnancy doctor), and was monitored very
regularly. I had a healthy pregnancy, my water broke at 38 weeks, but I was still
induced. We were hoping for kids 2 years apart, but my next pregnancy ended in
a miscarriage in the first trimester. First trimester miscarriages are not too
uncommon, and since I had carried one baby full term, not much thought was
given to it.
My next pregnancy was another closely monitored, yet successful
one. I was induced at 39 weeks (They do not like to have Lupus patients go past
39 weeks because of more complication risks later on). I then had a surprise
pregnancy 9 months later, another healthy one (though closely monitored). I again
was induced at 39 weeks, though this one took 3 days before he came out…guess he
was not ready.
My perinatologist called me the poster patient for Lupus! I
considered myself lucky! All the while I was still taking Plaquenil, I felt
the best I had ever felt while pregnant (aside from the horrible morning
sickness the first 13 weeks or so).
Shortly after baby #3 we moved to Hawaii.
We decided to try for one more and I got pregnant again. I guess after 3 healthy pregnancies everyone
(including me) was a lot more lax. I had difficulty finding a
perinatologist. There were none that were part of my PPO (though several were
listed in the directory, they did not exist apparently). At 18 weeks I went for a
gender scan to find the baby was not alive. We don’t know why. I’m sure Lupus
played a role, but no one had any answers, and no one even tried to find
answers.
We changed insurance and doctors after that. It completely shocked my
world though. I was so nervous to try again, but knew I had to. I had to get
all new doctor’s including a new rheumatologist, who was a bit too laid back
for my liking (but I was stuck with him). He decided (without even seeing my
previous files of 8+ years of lupus treatment) that I did not have Lupus (I
still don’t buy it). I became pregnant again, the new OB/GYN facility was more
cautious than the last, even with the retracted diagnosis. I had some minor
bumps along the way (I had minor bumps with all the pregnancies, bleeding
throughout, placenta previa early on, etc.) They decided not to induce me before
my due date and I delivered a healthy 9lb 15oz baby girl on my due date.
I was taken off of Plaquenil after my diagnosis retraction and luckily
I have been fine. I’m thankful that the doctor’s still monitored me closely,
however, because I learned the hard way that even in poster patients, things can
go very wrong! Having an autoimmune disease when pregnant is not a joke. There
are so many possible complications, it is better safe than sorry!
Poster patient, indeed! I'm so sorry Jen had to go through her losses, but so happy she has been able to have a big family despite her autoimmune issues. What a blessing!
I was happy I didn't have an autoimmune disease, but that still left me unsure whether my body was ruining my pregnancies. I had phone consultations with fertility doctors all over the Unites States, trying to find an answer. One doctor was perplexed why I'd never gotten my tubes tested to see if I have blocked tubes. Of course the Fallopian tubes need to be open so the sperm and egg can travel through and rendezvous. But that's not all!
Blocked tubes can have inflammatory fluid inside of them. That fluid can flow from the tube into the uterus and cause severe irritation there. An inflamed uterus can prevent an embryo from implanting and will often cause early pregnancy loss if the embryo does implant. An enlarged fluid-filled tube is called a hydrosalpinx.
You can clear out the tubes, but the inflammatory fluid will usually return. So the standard procedure is to actually sever the tube from the uterus so the fluid can no longer damage it. It sounds like a pretty lousy solution since you lose your potential for natural conception. But it's also a simple solution! I was really hoping I'd fine blocked tubes so I could have an explanation for my many losses and an easy way to fix it.
I had the test done to see if my tubes were clear, called an HSG. They fill up your uterus with dye until they can see the dye travel up the tubes. They watch it on an x-ray machine and if the tubes never show up then you know there's a blockage there.
It's interesting to watch but it's not at all fun to experience. It felt like I had severe cramping all over. They had a hard time seeing one of my tubes, so they kept putting more and more dye in. It was really starting to hurt at that point. By the end, I was starting to get light-headed from the pain and started to groan and ask when it would be over. The doctor felt bad, but he was finally able to see my other tube.
No blocked tubes for me. For once, I was actually a little bummed by a good outcome.
At that point, I'd run out of ideas. There was no further testing available. Without any other evidence, I had to assume that my body was not in the wrong and that my eggs were just unusually low quality.
It stinks to have low quality eggs but I figured I could eventually make a good egg out of the thousands inside of inside of me. But I still had this terrible fear that I'd never be able to carry a pregnancy because of some unseen issue inside of me. I hated the idea of trying again and again only to keep putting myself through more miscarriages. I was starting to seriously consider a surrogate, even though we could find nothing wrong with me.
Gavin's birth helped lift a huge weight off my shoulders. I no longer have to wonder and worry about whether my body can support a pregnancy to term. It may never be easy, but it is possible.
Unfortunately, Gavin's birth was not entirely smooth. I birthed him just fine, but my placenta did not want to come out. This was the most painful part of the whole process while my doctor beat the heck out of my abdomen trying to get that thing out of me. But it just didn't budge. Eventually, they had to go in and manually get it out. I lost a lot of blood, but everything worked out.
Still, I worried that my uterus had taken a pretty good beating. After we had Gavin, we wanted to try and conceive on our own before doing in vitro. So I went to the doctor and told him my concerns about my uterus and the damage that'd been done. He agreed we should check and see whether everything was okay in there before I tried anything.
More than anything, I was worried about scar tissue. A retained placenta can often cause scarring so I knew it might be an issue. Scar tissue can become quite serious and worsen over time, even creating adhesions within the uterus, welding the walls together with scar tissue. Excessive scar tissue and adhesions within the uterus are called Asherman's Syndrome and can be devastating, inhibiting an embryo from implanting and often causing pregnancy loss.
The Lancaster family know all about the difficulties that can happen with scarring. Here is her story:
Scars. I've battled a few different types. After four
miscarriages I was emotionally exhausted and didn't know if I could risk
getting pregnant again. Two of those four miscarriages resulted in a D&C
and all three of my pregnancies were delivered C-section. My doctor felt that
this first D&C was possibly too invasive and had caused all the scarring.
But she didn't know for sure. They also could not understand why I was
miscarrying so much.
With my first pregnancy I started hemorrhaging at 28 weeks and delivered him five weeks later. They thought he would be delivered an emergency c-section because I started hemorrhaging so heavy. But thankfully we had a couple of hours to prepare and they were able to do a c-section but not an emergency one.
They never discovered anything through ultrasound during my first pregnancy. In hindsight whatever I had with my last pregnancy I believe I had with my first. Go figure the middle one, was a piece of cake other than some lower back pain.
I learned just how scarred I was with my last pregnancy. I
was hemorrhaging at 11 weeks and placed on bed rest. I thought for sure I was
miscarrying again and thought my doctor was crazy when she shook her head no
and said, "I can't explain why you are bleeding, but other than that there
is nothing that suggests you are going to lose this baby."
At my 18 week ultrasound we discovered just how bad it was.
The ultrasound showed that the lining of my uterus was shredded and tissue hung
in the sack like a weeping willow tree. The scarring along the uterine wall was
so severe that the placenta hung like clothes on a clothesline. There were very
few "healthy" places for the placenta to attach. I had pockets
between that were filled with fluid and blood.
The day of delivery, it took my doctor 45 minutes to get
through the abdominal and uterine wall alone. Once through that painstaking
process she informed me that the uterine wall was so thin that if I had gone
into labor on my own, my uterus would have ruptured. I was so grateful that she
took her time to get through the scar tissue otherwise I would have bled out
and most likely died.
I opted for sterilization, knowing that I was grateful for
my three healthy kids. It wasn't an easy decision, but the right one for me.
You can see why I worried about scarring! It is a very real problem and can cause and a whole lot of emotional scarring too!
So we needed to take a good look at my uterus. We did a saline ultrasound, where they fill up the uterus with a saline solution and look at it on an ultrasound. You can actually watch your uterus inflate with the fluid inside! Unlike the horrid HSG test, it's only slightly uncomfortable.
The ultrasound allows you to see any little bumps on the uterus that shouldn't be there, little growths called polyps that can prevent conception. Doctors can go in and manually remove those polyps, scar tissue, or any other problem areas, a procedure commonly known as a D&C.
It's standard procedure to do a saline ultrasound before an in vitro cycle. You want to make sure everything looks okay in the uterus before you drop some expensive little embryos in there! So I've had a saline ultrasound quite a few times before.
This is an example of a saline ultrasound where you can see a few polyps.
But we did the ultrasound and didn't see any polyps. We did see some faint static that the doctor thought might be some light scarring, but he was not too concerned about it. I went on my merry way to work (unsuccessfully) on getting pregnant with my second child.
Now that I'm doing in vitro, the stakes are a lot higher and we need to be more careful about the condition of my uterus. I got a call from my doctor, wanting to follow up on that static we saw a few months before. He wanted to take a closer look and make sure everything looked good before we proceeded.
So we scheduled a hysteroscopy, where they actually go in with a camera and take a very close look at the inside of my uterus. For your sake, I won't include a picture of how the procedure works. Thankfully, I am asleep while this happens.
Unfortunately, this was more money we had to spend, but I'm happy to have a cautious doctor.
My procedure was scheduled for June 24th. I was not nervous at all. I had a hysteroscopy a few years ago and it had been fine. Well, besides my heart rate dropping to about 40 beats a minute during the procedure and them having to give me epinephrine to keep my heart rate up and stuff like that. But other than that, everything was fine!
Here's a little video of me on my way to my procedure, basically explaining everything I just explained in the last few paragraphs:
After I was finished talking with my doctor, everything went very quickly. I was all prepped and sleeping within a few minutes!
Here I am just before the procedure:
And here I am after:
Haha! It is such a trip to go under.
When I went in to the operating room, the anesthesiologist went to work right away getting me hooked up to an IV. He said, "We're in business," and I didn't know if that meant the IV was all set or if that meant that the magic juice was already flowing! I didn't have time to ask because my two nurses asked me to reposition. As I did that, it seemed like the lights on the ceiling were moving around in my vision. Was he already putting me under?
The best part was after I was all set up and the two nurses were just looking at me, waiting. I was asking them if we were waiting for the doctor, since they were just standing there smiling at me. I honestly don't remember if they answered or not but I think the real answer was, "No, we are waiting for you to go to sleep!" Because that's what I did!
It's always a little creepy to think about how you were totally violated while you were asleep. So I don't dwell on it. I'd rather be violated and asleep than violated and awake because the awake stuff is awkward and painful.
After I woke up, the doctor came by to chat with me about the hysteroscopy. I was working really hard to keep my eyes open because I wanted to hear what he had to say. He had a few pictures in his hand, pictures of my uterus.
There was indeed some scar tissue in there and he was able to get it out at that time. I was not too surprised by that considering what had happened when Gavin was born, and I was happy to know that he was able to remove it. The big surprise though was that he found a dark red patch in there. He wasn't too sure what it was, but he removed what he could and got some tissue for a biopsy. He suspected it might be some inflammation. If that was the case, he told me I would have to go on antibiotics for a month or two to get rid of the inflammation and that would push my in vitro plans back a few months.
I slurred my reply, "But I really wanted an April baby."
Then I added, "I guess June is good too."
He smiled at me and said,
"Maybe July."
Here are some pictures of my uterus. You can see the dark red areas there in the pictures.
One thing I've learned is the pointlessness of worrying. Of course it's not always easy to dismiss anxiety and there are many cases where worrying is warranted. But for maybes and unknowns, when things can go one way or another and there's nothing you can do but wait, I find it's best to keep going on with your life and keep busy instead of dwelling on what might happen. That's the attitude I had throughout Gavin's pregnancy and it worked well for me.
So I worried very little about that dark red patch. I gave it hardly a thought and kept about my busy schedule.
I met with the doctor a week later. It did cross my mind that he could have a scary diagnosis for me, something worse than was even mentioned before, but I didn't think it worth worrying about. I'd cross that bridge when I got there.
Well, the news was just fine. Nothing was cancerous and the patch was not inflammation but just a benign polyp. I was almost sure I would end up on antibiotics so I was shocked to find out I could proceed as planned and still try for my April baby!
Maybe.
There are sometimes hiccups along the way, so you have to be flexible with in viro. Because of my procedure, we wanted to give my uterus a little bit of time to heal. They basically went in and roughed it up a little bit so it might not be ready for a baby just yet, though some studies show a little roughness can actually improve pregnancy rates! I did have my uterus "roughed up" before I had Gavin, called endometrial scratching. So this may actually be a benefit. But we still pushed my schedule back about two weeks to let things heal, which would give me a due date of April 28th if all goes according to plan.
But when has anything in my life gone according to plan? Haha!
Thank you to all who contributed to this blog post and thank you to those who are reading! In becoming more aware and more educated, it can be easier to reach out to others in compassion and understanding. That is my purpose here, for us to be more connected and for you to feel a greater sense of gratitude for your body and your children and everything that had to happen to get them here!
