Fair warning, this post is not for the faint of heart. It might be triggering for some. So I’ll give you the option to skip ahead to the section titled “Next Steps.” As you’ve probably noticed, I decided to scale back my number of posts because I’ve been fairly busy lately. So instead of weekly posts, I’ve been doing monthly posts, at least for the time being. Thank you to everyone who has sent me well wishes, it means a lot to me.
In case you haven’t read my last post, here is a super brief summary of what has been going on. I was diagnosed with Asherman’s Syndrome and was told I would need to fly out of state to see a specialist for surgery. I did the surgery in California and the doctor discovered I also had a septate uterus, which he corrected in addition to correcting the scarring. He also put in a uterine balloon stent to prevent the reformation of scar tissue. I flew back home and needed to have the ballon stent removed within one week. The doctor back home who agreed to do it then decided to go on vacation, and I had to scramble to find a different doctor on short notice to do the procedure. Luckily I found a different doctor who was able to do it for me. Alright, now you are all caught up.
So here’s the part where I tell you again, if you don’t want to hear potentially triggering details please fast forward to the section titled “Next Steps.” Normally I don’t share things that are too overly detailed, or at least I don’t think I do. But I think there is value in sharing my experience for other women who have been diagnosed with Asherman’s Syndrome or a Septate Uterus and they are wanting to learn more about what to expect. Let me preface this with saying I’m not sure if the complications I experienced were due to the surgery on my uterine scarring or on my septate uterus, or maybe it was a combination of both. I don’t think I will ever know for sure.
If you are anything like me, you research what surgeries are going to be like and what happens afterwards. I would look up the basic medical information, to see if there was anything the doctor missed explaining. I’ve also gotten into the habit of looking up a few personal experiences of what to expect. I mostly see these personal experiences in infertility forums, blogs, or on YouTube channels. I saw a real mixed-bag of experiences regarding the uterine balloon stent surgery and what to expect after it’s removed. For me, it was painful having it removed, but at least it was quick. I thought the worst was behind me. But what happened next I really did not expect at all.
After the balloon stent was removed I had what seemed like a normal period for a few days. Not a big deal, my doctor told me I should expect this. Okay great, everything seemed on track. But slowly the bleeding started to increase over the next few days. It got to the point where I was getting really concerned. I was going through about 1.5 pads per hour, and I remembered from my previous miscarriages they told me if I go through one pad per hour for two hours I would need to go to the emergency room. At one point I went through one pad in two minutes. Not only was the amount now worrisome, but I was passing very large clots, some almost as large as my fist. But then it would slow down. I never did reach the “one pad per hour for two hours” rule they typically say, because it would start up, then slow down, then start up again. It was never two consecutive hours.
It looked and felt identical to a miscarriage. I did not expect this at all and I was starting to feel myself panic. Unfortunately it was the weekend and my doctor’s office was closed. I spoke with their answering service who told me they would contact my doctor but it might be upwards of one hour for them to return my call. As they were asking me questions about what was going on I started to cry, because I felt so overwhelmed and I didn’t know what was going to happen. I was scared about possibly passing out from blood loss because I was feeling light-headed and dizzy. I was also scared about the possibility of needing to go to the hospital during a COVID outbreak in my city. The answering service lady was nice and helped to calm me down a little bit.
I somehow managed to calm myself down and decided to lie down, hoping this would slow the bleeding, which actually worked somewhat. I chose to do this instead of going to the emergency room because I wasn’t quite at the one pad per hour timeframe, it was more like one pad per 1.5 hours. I chose to do this because I was waiting for my doctor to call back and I felt it was not severe enough to go to the emergency room yet. Please remember this is my own personal experience and if you are going through something similar you MUST talk with your doctor for guidance.
I tried to stay as still as possible, avoiding walking around at all. After about 45 minutes of waiting, the on-call doctor called me. She asked if I was on estrogen and I told her yes. Estrogen is commonly prescribed after uterine balloon stent removal to help control bleeding, but clearly it wasn’t working for me. She advised me to start my progesterone pills right away, instead of the original plan which would have had me starting them about 3.5 weeks from then. So I would need to start the progesterone a lot earlier, in hopes to slow down the bleeding. She also advised me to take 600mg of Ibuprofen, drink plenty of water, and to rest.
Thankfully the pharmacy was able to get my progesterone ready really quickly. My husband picked up the progesterone for me and I took it as soon as he got back. I think the combination of ibuprofen and progesterone was what really helped. It took a while but I was starting to feel better. I bled for 13 days after the balloon stent was removed, even after being placed on both progesterone and estrogen to slow the bleeding.
This whole situation was very similar to my first miscarriage, so it brought up a lot of emotions for me. I would not say it was necessarily PTSD I was experiencing this time, but it was definitely a feeling of being overwhelmed. I managed to control that panicky feeling when I lied down and took some deep breaths. I think had I not done that it would have turned into a panic attack. I think another reason it was emotional for me was that it was totally unexpected. I had done plenty of research on what happens after the uterine balloon stent is removed and even asked my doctor, and no one described anything like what I was experiencing.
I think it will take several cycles for me to get back to normal after all of that. But even though it was really difficult for me, I am thankful it wasn’t any worse. I could have passed out from the blood loss or been told to go to the emergency room during the COVID outbreak. Even though the whole situation sucked and caused me a lot of stress and pain, I am thankful I got the help I needed just in time. I think had I not got help from my doctor when I did it most likely would have gotten worse and ended up needing to go to the ER.
I now need to do a follow-up HSG and pelvic ultrasound. Basically they are going to be checking to make sure everything looks good and that there is no more scarring. From what I understand the follow-up HSG is anywhere from Cycle Day 5-11 days, and the pelvic ultrasound is Cycle Day 13-15. All of this is done in the cycle that takes place 30 days after your surgery when the balloon stent was put in, so it’s not the cycle that starts after it is removed. This way it gives you over a month to heal up before they do the follow up HSG or pelvic ultrasound.
Recently I finished up my 30 days of estrogen and my progesterone. They told me to expect my cycle to start up once I stop the medicine. So far everything seems normal. I am scheduled for my follow-up HSG procedure where they will check to see if all of my scarring is gone and whether I will need another surgery or not. My doctor in California said to do this day 5-7 of my cycle but here in Alaska they are telling me they do it day 7-11. They also said they only have availability on day 11 because they do HSG tests on specific days of the week. So I am scheduled to do mine on day 11. I will also need to do a pelvic ultrasound day 13-15, which I still need to schedule.
I was prescribed to take an antibiotic the day before, the day of, and the day after my HSG test. I believe it’s to help prevent infection from the procedure. I decided to make an appointment with an outpatient radiologist office instead of radiology at the hospital, which was where I went last time. I’m really trying to avoid doing anything at the hospital unless necessary because of COVID. I actually requested my doctor not refer me to the hospital for the HSG and they were happy to refer me to an outpatient radiologist instead.
December 17th I have a phone consultation with the IVF clinic in New York. I don’t know whether he will recommend I wait a few cycles before doing IVF because of the surgery I just had. He may want my body to heal up more. Last time I checked New York has a 14-day quarantine upon arrival for certain states with high COVID numbers, and my state (Alaska) is one of them. So that means I would have to sit in a hotel for 14 days straight doing nothing before I could even get IVF treatment, unless there is some medical exemption. But I kind of doubt there is a medical exemption available for fertility patients. I could be wrong though, I’ll have to do more research. If I need to quarantine upon arrival that is a lot of money I would need to pay to sit in a hotel and do nothing.
Basically I will be establishing care with the clinic in New York by phone. In all actuality, now is really not the best time to go down. I’m concerned about getting COVID, because I have two preexisting conditions, high blood pressure and I am technically obese. I’ve been working really hard to lose weight. I’ve lost some already but I have a ways to go. I am almost out of the “obese” range and into the “overweight range.” It would be awesome if I could get to a healthy weight and not need high blood pressure pills anymore. Not to mention I am concerned about being overweight during IVF treatment and the impact it would have on my egg quality.
So there’s the health concerns, and on top of that I don’t have enough money saved up. So I will need to figure out another way to pay for it, most likely I will need to get a loan or use credit for part of the cost. I’m looking into a second job, well technically it would be a third job. I have two jobs now but they are part-time and the hours vary. The clinic in New York can do a monthly payment plan for their portion of the cost but I would need to pay for the medication up front.
Realistically speaking, I may not be able to IVF for a while. At this point I really don’t know when. I’m hoping the doctor can give me some information on his end about whether I would need to quarantine or not. He may even advise me to wait until a vaccine is out. At this point I truly have no idea when I can go. My husband has some time off planned early next year, so maybe I’ll ask about the doctor’s availability then. But he’s a pretty in-demand doctor, it took me 3.5 months to get a phone consultation with him, so it might be even longer to actually do the egg retrieval.
I’m leaning more towards doing only an egg retrieval at first, and then sometime later the actual embryo transfer. That way I have more time to get to healthy weight, and I really don’t want the added stress of being pregnant during COVID if at all possible. With embryo banking I can wait until the right time before actually getting pregnant. But then again my doctor may say something to the effect of “you’re not getting any younger, you should just do it now.” It will be my first phone consultation with him, so I don’t know if he will be gung-ho about just starting treatment or if he will be more cautious and have me wait.