Oh my, do we have a lot of catching up to do! In my previous post I talked about how I did an HSG test for the first time. I hated it. But I apparently needed it more than I realized. The images and results determined I did in fact have Asherman’s Syndrome. The series of events that took place afterwards included a flurry of phone calls and emails to multiple doctors to coordinate treatment, as well as a lot of research on my part. Within about one week of diagnosis, I was on a plane headed out for surgery in California. I found out later there was even more to the story of what was going on with me.
Why I Fired My Previous Fertility Team
I decided to seek a second opinion in addition to my current OBGYN. Why did I seek a second opinion? I’ve done a lot of research online about my diagnoses and I discovered I was not tested for a lot of things over the years, including a basic karyotype test, which I will talk about later.
I learned there were substantial gaps in my treatment. So I fired my previous OBGYN from earlier this year, as well as my previous out-of-state reproductive endocrinologist. Not only was I continuing to have miscarriage after miscarriage but I also had two rounds of IVF with no success. Not to mention a lot of missing diagnostic tests that were never suggested to me over the years. One of those tests included an HSG test, which I learned is a pretty routine test to take with recurrent miscarriages but it was never done on me. I just recently learned new information about this HSG test that was shocking and could completely change my future treatment plans. I’ll get more into that in a bit.
I was told over the years by several doctors “It’s just bad luck” and “keep trying.” But if you have recurrent miscarriages, this type of advice is at the very least negligent and at worst it can be deadly. I’ve heard of stories where women follow this advice and experience major health risks when they miscarry and hemorrhage to the point of needing emergency care, only to find out that they were missing vital diagnostic tests that could have potentially prevented the entire scenario with proper treatment. I have a new diagnosis I will talk about in a bit, one that was missed by doctors who told me to “keep trying.”
Several months ago I decided to seek diagnostic testing from two new OBGYNs simultaneously, mostly because my trust in OBGYNs and fertility doctors has taken a nosedive. I believe that in my complex fertility situation, I needed to move on and try something different with a new fertility team. I’m still deciding which one I will make my primary OBGYN. But for the time being two brains are better than one right? I will probably decide on who I want to stick with after a few visits so I can compare who I feel has the best individualized treatment plan.
I also fired my out-of-state reproductive endocrinologist for different reasons. They never requested an HSG test, therefore I never knew I had Asherman’s Syndrome, then they implanted my one and only embryo (PGS tested normal) but it failed to implant and I realized afterward they didn’t even test my endometrium lining the day of my transfer to see if it was thick enough for implantation. The previous week my lining was too thin and they said, “hopefully it will be thick enough by transfer day.” But like I said, I learned after the fact they didn’t even measure it. These were just a few of the reasons I decided to kick them to the curb.
I am currently seeing a new doctor in California who specializes in corrective surgery for Asherman Syndrome scarring in the uterus. This A-listed doctor who comes highly recommended is unfortunately retiring the end of this month. I feel like I finally found a real gem amongst all the other dirt out there, but at the very least he has been able to point me into a new direction for treatment. So now I will need to find a different reproductive endocrinologist if I want to continue with IVF treatment.
Three months ago I set up a phone consultation with an IVF clinic in New York. I wanted a clinic that had great reviews, quality care, innovated treatment techniques, and that was more affordable. Cost was one of the biggest concerns for me, but I also sought out this clinic because they actually consider reproductive immunological issues during treatment. My past doctors either told me they don’t have the capability to test for reproductive immunological issues, didn’t know who did test for it, or they were completely dismissive of the fact that I wanted to do it at all. None of them ever followed up with a referral for me, I had to do that research on my own. Even though reproductive immunology is controversial, why would a doctor not even consider the realm of possibility that my body may be rejecting embryos due to immunological issues? I’ve had six miscarriages and they all end at about six weeks and a few days, I would think a doctor may ask themselves, “Hmm…I wonder why the embryo continuously stops growing around the same time? Maybe her body is rejecting the baby due to immunological issues.” I’ve seen six different providers over 4.5 years and not one of them did immunological testing, even if just to rule it out.
But this IVF clinic in New York I’d like to go to seems much more innovative compared to the more run of the mill treatment I received in the past. The fact that some of their medication protocols are specific to women with immunological issues gives me hope. Even if I can’t afford the whole battery of reproductive immunological tests, I want to rule out some of the more basic immunological issues at the very least. I deserve individualized treatment, not cookie cutter plans that continuously fail. You also deserve the best care possible with a doctor who will actually listen to you, does the proper diagnostic testing, and comes up with a treatment plan based on previous scientific studies similar to your own diagnosis. I’ll be doing a more in-depth post on when you should potentially fire your provider and seek out a new one.
Karyotype Test Results
I’m glad I found two new OBGYNs willing to work with me, because they both thought of different tests I was missing. While the first OBGYN suggested I do an HSG test the other said I should do a karyotype test. A karyotype test is a simple blood test. I’m not sure if it was because I was located in Alaska, or if it was the usual process, but they said they wouldn’t have my results for up to three weeks. They had to process my test out of state. I can’t recall if she said it was being processed at the Mayo Clinic or the Cleveland Clinic.
I got the good news that my karyotype test results came back normal, my doctor was able to officially rule out a balanced translocation. But I found out afterwards that my husband could also take a karyotype test too. I’ll see where his head is at with this. I want to respect the fact that he really needed a break from treatment, so something like this could be done maybe in a few months if he wanted to. He understands that although I am not actively pursuing IVF right now, I am most definitely in the phase of doing any diagnostic workups.
In the not so distant future I can restart IVF again, armed with more information and possibly a better outcome. I am also mentally preparing myself for the possibility of getting these workups to determine whether and when I should move on from trying to have a biological child and instead look into other options. Knowledge is power, and I feel all these tests will help me decide what is best for building my family.
Do some of your own research on karyotype tests to find out if you might benefit from taking this test. If you’ve had recurrent miscarriages your doctor may recommend a karyotype test on you and your partner. In my particular case, they wanted to rule out whether I had a balanced translocation which could have possibly explained why I had miscarriages due to the babies having a chromosomal abnormality. Although my chromosomes were determined to be normal from this karyotype test, I still had miscarriages due to Trisomy 15 and 16 (both due to maternal origin). We also had a triploidy miscarriage (due to paternal origin). From what I understand, a karyotype test is a type of genetic test that looks at your chromosomes.
Remember, just because your individual karyotype test results come back normal, this does not mean that your male partner does not have an abnormality. Ask your male partner to get tested as well. Like I said before, my husband asked for a break from fertility stuff for a bit, which is fine because I have at least a dozen other tests I can do on my own in the meantime.
Asherman’s Syndrome + Septate Uterus Diagnoses & Surgery
In my last post I talked about how read my HSG test report and saw he word synechiae. I googled the word synechiae and realized there was an actual name and diagnosis for what was happening to me. Asherman’s Syndrome. In a nutshell, Asherman’s Syndrome is when you have damage to your uterus to the point where scarring forms. If the scarring is bad enough it can close up the cervix entirely, backing up the menstrual flow with nowhere to go and causing potential for major complications. I’ve heard of some women who didn’t think much of their Asherman’s diagnosis, unaware of the importance of getting it treated, and they landed in the emergency room with immense pain. They would find out later the reason they weren’t having a period was their scarring literally blocked off the natural menstrual cycle. It’s a worse-case-scenario kind of situation, but given my bad luck (reproductively speaking), I did not want to chance it by not doing anything to treat it.
I sat there in my appointment with my new OBGYN who was talking about how severe my scarring was and how I would need surgery. She felt she was unable to help me, due to it being such a complicated and delicate procedure, on top of the fact that she had never performed this procedure before. “I don’t think what I would do would be any different from what Dr. X did.” Dr. X being the one she believed actually caused the damage. She thought it would be best if I see a specialist and avoid repeating another surgery that could make my scarring worse.
I asked who she would suggest I see to repair the scarring. She named a doctor from the fertility clinic out-of-state that I had zero luck with after two rounds of IVF. Nope, not happening. I was not going back to the clinic I felt like had several major oversights with my treatment. I have more information now about things that they failed to help me with that they should have done earlier. Some of those things included an HSG test, karyotype test, and a basic recurrent pregnancy loss panel that should have been done on me years ago. She had no other suggestions for any other specialist who could help me, so I decided to take matters into my own hands.
I joined several Asherman’s Syndrome groups online to learn more and to gain access to resources. This was actually how I found my doctor who ended up performing the surgery. I found a post where someone asked, “Which A-list Asherman’s Syndrome specialist would you recommend?” I was amazed at how many people responded, and most of them kept repeating over and over the same two doctor’s names. There were a few others who mentioned some of the lesser known doctors that helped them. So I narrowed it down to two doctors.
I chose the doctor whose technique included using a balloon stent to help prevent scarring from reforming, therefore reducing the number of subsequent surgeries. I called his office and found out he was retiring by the end of the month, so I had to quickly make arrangements if I wanted the opportunity of getting his help. He was so highly regarded in the Asherman’s community.
After a flurry of phone calls, emails, and lots of paperwork I somehow managed to get everything set up and I was on the plane to California for my treatment in just over one week. I essentially went from just learning about my new diagnosis one week, to getting corrective surgery from one of the top doctors the next. It’s pretty unheard of when it comes to reproductive medicine to have such a quick turnaround with treatment time. It was headspinningly fast, yet also really satisfying knowing I was getting things done so quickly, so I could hopefully move on with my life.
Before my surgery my doctor sat down with me after looking at my HSG images and said, “This doesn’t actually look like severe scarring like the initial report says they found. I mean there is some scarring I’m seeing, but not severe like they are saying. If you look here, it should be horizontal, but your uterus is like this…” he held a piece of paper at a sharp diagonal angle across the image of my uterus. “This looks like a congenital disorder, a septate uterus,” he explained to me that a septate uterus is a birth defect and showed me how my uterus was misshaped, which can affect my ability to get and stay pregnant. This could be a major reason why I keep miscarrying.
He was the very first doctor to ever tell me that I may have a birth defect in my uterus. I was shocked to hear this news. I was so shocked I didn’t know what to say other than, “Really?” He said again, “We won’t know for sure if that’s what it is until we are in there and see.” During the surgery I was put under general anesthesia, and when I woke up I got a lot more information on what was going on.
He told me he removed the uterine scarring and inserted the uterine balloon stent to help prevent the scarring from reforming. I would need to have the balloon in for one week, which isn’t that long compared to other times I’ve heard these can be in for several weeks. He also said that I did in fact have a septate uterus and he was able to easily correct this birth defect during the surgery. So basically this surgery was like a three-for-one kind of deal; 1) remove the scarring, 2) reduce or prevent future scarring, and 3) correct the septate uterus. No wonder this doctor is so highly regarded.
I think his well-trained eye with decades of experience was easily able to spot my septate uterus, whereas none of my local medical team were able to do this over the nearly five years I’ve been seeking treatment. I’m so thankful I was able to get into seeing him, literally the week before he retired. I was super time-crunched but everything worked out for the best.
If someone were to ask me, “What does it feel like to have a uterine balloon stent in?” I would say, “It feels like you are walking around with a blown-up balloon inside your uterus.” No joke, that’s exactly how it feels. I would say I was consciously aware of it about 95% of my waking day because I could feel and sense it that often. It occasionally would feel achy and painful on rare occasions, but only briefly. But then again that could have been pain from the several other things that had been performed on me during that surgery.
I avoided bending over to pick up anything, because I was afraid of the stem popping out. My doctor in California said, “If the stem pops out, just shove it back in,” he said it so matter-of-factly. But I’m sure he saw the terror in my eyes and then he followed it with, “It’s not that big a deal, it happens sometimes.” Needless to say, I avoided bending over for fear of needing to “shove it back in there.” You never realize how often you need to pick things up until you are trying to avoid bending over. Thankfully I had a gripper tool I used to pick up anything I dropped on the floor around the house.
After one week, I got the balloon stent removed by my second-opinion OBGYN back in Alaska. Yes, I was seeing two OBGYN’s locally, trying to determine which one to go with regularly. The first one told me she would remove my balloon stent but when I happened to call for another reason and asked if she was still good to go with the procedure I was told she was “on vacation for two weeks.” No one called me from their office to tell me she could not do it anymore. To top it off they offered ZERO solutions to help me that day. I called them several times afterward and still they were of no help. I was left high and dry with no solution on who would remove my balloon stent that had to come out at a very specific time.
So I had to scramble to coordinate another doctor to remove it. Thank god I was seeing a second backup OBGYN at a different clinic. When you deal with all the crap I’ve had to over the years with fertility issues, it’s good to have a backup doctor, and this is a prime example of why. If I did not have a backup doctor I would likely still be stuck with the uterine balloon stent inside me, beyond the recommended time the doctor in California told me it should be in.
It wasn’t until three days afterward the first clinic (with the doctor who bailed on me) called me back to say they had someone else arranged to take it out, but I told them, “I made arrangements with another clinic that was actually able to confirm they could take the balloon stent out at the proper time.” I didn’t say it with anger, I simply said it with finality because this situation was an excellent reason to fire them too. It’s completely unacceptable to leave your patients high and dry like that. At the very least, arrange a substitute doctor to perform your procedures that are time-sensitive.
The backup OBGYN who performed the balloon stent removal was very nice and incredibly knowledgeable about Alaska and why we don’t have a reproductive endocrinologist up here. She essentially said that she thinks the reason is that there isn’t a big enough population in Alaska to make it fiscally doable for an RE to be in Alaska and to do any IVF treatment. The lower the population the less likely an RE will be able to sustain their practice. The way she described it made a lot of sense to me. She also mentioned there used to be an RE in Alaska but she was up here only by happenstance, because her husband’s job was relocated in Alaska and she happened to be trained as an RE already. This RE passed on her knowledge and expertise to the clinic I ended up seeing to remove my balloon stent. I was starting to feel like I was finally in the right hands.
Unfortunately the actual removal of the balloon stent was quite painful, but it only lasted for a few seconds. The level of pain I experienced was right on par with how bad the HSG was for me, except the HSG pain was going on for much longer. I was so happy to have that balloon out of me. Having it removed felt like a new chapter of my life in a way. The scarring was gone and the birth defect in my uterus was corrected from my recent surgery. It felt like a new lease on life. It may not be the end-all-be-all to my fertility issues, but it certainly got rid of several major obstacles.
Also, while I was down in California I was able to do an actual recurrent pregnancy loss panel like he had recommended. I had my blood drawn for these tests. I had seventeen, yes seventeen vials of blood taken from me that day. The lab worker suggested I sit in the lobby for a bit afterwards and the front desk guy brought me water so I wouldn’t pass out. That’s a lot of blood! I got tested for various things like Lupus, Natural Killer cells, prolactin, and a bunch of other things. I’m glad I was able to do some immunological tests, although it’s not as extensive as a full reproductive immunological workup. I did some research on that and I don’t have near enough money to afford that.
So what are my next steps now that my balloon stent is removed? Well I need to continue taking estrogen for 30 days after surgery, then progesterone pills for the last of those 5 days. If I understand it correctly, the estrogen helps to somehow prevent the recurrence of scar tissue developing, possibly due to keeping the endometrial lining more thin.
After I’m done with the medicine, and after my cycle restarts I’ll need to do a repeat HSG and also a pelvic ultrasound to confirm that everything is looking good and no scarring has reformed. On the off chance that scarring does reoccur, my California doctor who recently retired, suggested a doctor on the East Coast for me. He is also a specialist treating Asherman’s Syndrome. So I have him in mind, just in case it happens again. If everything looks good, yours truly will be arranging treatment at a new clinic for my next IVF cycle in New York.