The ERA (Endometrial Receptivity Test) is something that I have been thinking about doing for almost a year now. It is tough to decide to do yet another medicated IVF cycle, because emotionally I feel like I'm completely lost in a shell of who I once was before this emotionally crushing journey started 4 years ago (initially with Artificial insemination and timed intercourse, of course). The really tough part in deciding to do a sort of experimental test at this point is that 1. It requires more medications that I hate taking and that makes me feel like shit all of the time 2. I'm not able to attempt to do another transfer for at least 2 months due to the timing with the procedure and then getting the results back, and 3. I am going to be 36 next month, so I really feel like I'm running out of time :(
However....I only have one "normal" embryo left to transfer. After having suffered the tough losses and cancelled cycles all due to what is believed to be a lining thickness or a timing issue (also related to the lining tissue), I have come to terms with either giving up on this journey to have my own children, or trying this option. So here I am. I haven't really been able to find much detail about others that have gone through the ERA procedure, other than statistics on a website for the company advocating for it (which make it sound pretty promising), so I decided to write about it while I go through it in hopes of helping out other women out who may be considering it.
Why do an ERA test?
The reason that women elect to do these tests is to determine if the timing of their embryo transfer during an IVF cycle is off. If that is the case, it is believed that transferring an embryo too early or too late will result in the loss of a pregnancy due to the endometrial tissue being "less than optimal" at the time of transfer. In a typical IVF cycle, there is a medicated protocol to first grow the endometrial lining (using estrogen for about 2 weeks) followed by a little less than a week of progesterone (intramuscular injections, and vaginal inserts in my case) to make the lining "sticky" and receptive for a potential embryo to attach to. Typically, progesterone exposure is only for 5 days after the lining is thick and the endometrial pattern optimal (which is determined via vaginal ultrasounds and blood work) in the "typical" woman's case. However, it is believed that somewhere around 15% of women are not "typical" and require an additional day of progesterone exposure to get their lining to become optimal for transfer. Some even more unique women (very small percentage) require one less day of progesterone exposure before the transfer, which means the typical IVF protocol is transferring their embryo past the optimal window for an IVF transfer. This is where the ERA test comes into play. This test analyzes the DNA of your lining and something like 200+ genes within the tissue in order to assess the "receptivity" of the cells that make up this precious and essential lining for baby to implant into.
My doctor suggested this option for me after I experienced several cancelled IVF cycles due to endometrial lining issues as well as two failed IVF transfers of high quality 5 day blastocyst embryos (one frozen genetically screened embryo and one freshly retrieved and fertilized one). Since I've had a tough time with my lining the entire time during IVF, he thought this would be a good way to look into the timing potentially being the cause of my failures since he cannot give me suggestions on how to improve the health of my lining diet, etc. wise (which I think is incorrect and am taking into my own hands at the same time). I figured what do I really have to lose at this point. It is frustrating, because since IVF I have taken a lot of initiative into improving my overall health (outside of this stressful mess), but I cannot seem to get pregnant. My egg quality has always been good, so we know that the issue is most likely not the cause of these failures.
And so it begins....
The start of this process was no less stressful than the last 6 IVF rounds and 5 IUI's have been. I got a new job since I did my last IVF cycle, so I had to have the tough conversation with my new boss about IVF, just has I had done a couple years ago with my last one. Everyone is different in deciding to do this or not, but for me its just easier having my boss know what is going on. It's very personal and emotional to discuss, and it never gets easier to "explain" why you are going to seem like a completely fickle and emotionally unstable employee over the next several months. Luckily, my new boss is awesome (and a woman), so she was very understanding as I bawled my eyes out at one of our routine weekly meetings while awkwardly trying to explain what I was getting ready to endure. I knew I needed her blessing before starting this to gain her understanding, and thankfully it was a good idea and she was wonderful and totally supportive about it :)
The first protocol I was sent by my also pretty awesome nurse was unfortunately missing medication that most IVF patients probably would not know any better to question. Having done this before, I addressed it with my nurse and she corrected it before any harm was done. My next hurdle was dealing with new insurance and a new "required" pharmacy to use based on said insurance changes (at least they are trying to cover something I guess). The people at these pharmacies filling your orders for the specialty medication do not seem to have a clue or even pay attention to what your doctor orders, so be mindful of what they are telling you is ordered for you every single time. After several back and forth calls to get a hold of the pharmacy to check on the status of my order because my period felt like it was coming soon, the person I had to deal with ended up pulling up the wrong person in their system and insisted that I needed to contact my doctor if I thought what she was telling me the order was wrong. I was ready to go through the phone at this point, but then of course this person realized that they somehow typed the wrong birth date by one number, so SHE was the wrong one. You can't make this stuff up, people!! Next, the entire Midwest and East Coast of the United States was blessed with a polar vortex which delayed the guaranteed delivery date of my medication by two days (during which I of course got my period!). Because the delivery was supposed to occur on a Saturday, I couldn't even contact the pharmacy about it until Monday (a day later than I was supposed to start the estrogen) so I was really frustrated from the start to say the least!
If my periods were a little less irregular, it would have been a bit easier to predict when I needed the meds, but that is just how things have been since I stopped taking birth control (which DID NOT help any of this - see my other post about BC). So overall the start of my ERA cycle was essentially delayed a day and a half without the proper medication because what I was supposed to do on Sunday AM didn't start until Monday evening (after hearing from my nurse to get the OK).
I'm hoping this delay doesn't inevitably delay everything scheduled moving forward, but I won't really know much until they do the first lining check a week from Tuesday. As I've said in my other posts, there is so much waiting and so many things that can go wrong with infertility treatments. It really tests your sanity and patience!! It doesn't help that EVERY SINGLE ROUND gets harder than the previous one after a failure occurs and you have your hopes up (because negativity and stress are also bad for fertility). I've cried a lot already based on having to do this again and just the hormones and headaches that accompany the meds (at least for me), and I've only made it 5 days at this point!
Protocol for the ERA:
My current protocol is as follows: 2 weeks of estrogen pills (2mg Estrace) 3 times a day, followed by a lining check (the worst part for me because of the anxiety and worry of the lining issues), and then if everything with the lining is good, I go on to add in the intramuscular shots (Progesterone in Oil) every 3rd day as well as daily Endometrin inserts twice a day (which are very messy). The estrogen is to help build up a good lining, and the progesterone is to help maintain it and prepare for an embryo to implant itself into the uterine lining.
After these things check out, a biopsy occurs (without any anesthesia or medication for the procedure) on the 6th day after my lining check (so 20-21 days overall with the medication) at a local doctor's office. The biopsy is then sent off to the lab that does the ERA testing, which will take approximately 2 weeks to get results from. I am really hoping that this test will finally give me some answers and some new found hope.
Here is the link to the place that is doing the ERA test for me, in case anyone wants more details on the procedure outside of my experiences:
https://www.igenomix.com/tests/endometrial-receptivity-test-era
Sonohysterography (Cycle Day 11):
This morning I had to do a Sonohysterography Ultrasound (Saline Sonogram) to ensure that my uterine cavity was clear from any scar tissue, fibroids, etc. I believe it is a standard IVF protocol to complete one every year, especially if you've had previous surgeries for adhesions (Fibroids, scar tissue, etc) like I have.
The procedure wasn't really related to the ERA cycle, but something I needed to do before starting my next IVF cycle, so I decided to get it out of the way now. These procedures are typically done between days 5 - 12 of a woman's menstrual cycle. Typically the procedure doesn't require much prep, but some doctors recommend a NSAID pain reliever (OTC is fine) and an antibiotic taken before the procedure to prevent infection. My IVF doctor did not prescribe any of this to me, and I've been sitting with a heating pad ever since the appointment! Also, FYI it is a messy procedure, too. The saline solution leaks out while they are trying different approaches with inserting the catheter and/or when they remove it since the liquid is supposed to fill the inside of your endometrial cavity to allow the doctor to see things more clearly.
Me being special in every way, I had a hell of a time today. What most women say is "painless" had me slamming my eyes shut and mentally talking to myself with tears running down my cheeks as the doctor tried every single catheter he had in the office without luck getting the tube in. Perhaps the doctor should have dilated my cervix to help things along, I've heard of others having that done, but he chose not to for whatever reason. Maybe I was tensing up and making it worse but the pain I was experiencing made it tough to "just relax." So after what felt like 15 minutes of this (it was probably less), the doctor ended up just shoving the tube that usually goes through the catheter (to keep it steady I think?) and saying it was "good enough" to get some pictures. I just hope it was sufficient and not going to be yet another thing I have to redo later. Thank god my husband came with me to hold my hand, I'd recommend that too. Next is the lining check, my big challenge. Praying that goes better!!
Day 16 of Estrogen:
I have been going strong with no caffeine, no pop/soda, no sugar or refined processed foods, no alcohol, and less than 40% carbohydrates per day since the beginning of the month. I am doing well, but my emotions are tough. I've had a few hard cries. I don't tell people much about it because they frankly are sick of even asking me how I am doing I think at this point they just wonder why/how I haven't quit yet. I ask myself that a lot....
I just found a gigantic garbage bag full of injections, needles, used meds, and some unused meds from the previous 6 IVF cycles, and its just surreal that I've gone through all of this to date and I'm still having to continue. It scares me how many injections and synthetic hormones I've put into my body! I am so anxious about tomorrow. I go for my blood work and ultrasound before 8am tomorrow, so I am PRAYING that all of these diet changes have made an impact on my lining. I really want to be able to get this ERA over with, which is currently scheduled for next Monday at 2:30 pm at my local doctor's office. Tomorrow will determine if I can keep that date or not, mainly my lining is the factor that has been the go/no go factor for every cycle to date. Please say some extra prayers for me, friends. <3
Day 17: Lining Check and Bloodwork
Well....as usual this did not go well today. I am so fucking aggravated that I'm using vulgar language and this is me calming down for the last 6 hours of being really pissed off. I have to force myself to eat, especially because I can't go binge out on some junk food. And if I drink now, I'm going to regret that too. Anyhow, so my lining was only 5.8mm this morning, and it needs to be an 8mm measurement to proceed with the ERA (or anything IVF for that matter) so my progress is not good enough to move on to the progesterone as per the usual protocol. Since I'm so special, they said even a 7mm reading would do, but a 5.8 is not going to cut it. My bloodwork looked good enough for a nice thick lining, with an estrogen level of 459 and a progesterone reading of 0.37, but my body is not responding to the meds on a physical level. (Mentally I can tell you it DEFINITELY is)
So my next steps were to cancel the ERA scheduled for Monday 2/25 and plan to go back to the doctor after another week of the Estrogen pills 3x a day. Doctor suggested I could add in the DelEstrogen injections, but he's not sure it would help me specifically since we've tried that in the past and things didn't change much.
As hard as it is, I am going to continue to avoid the caffeine, alcohol, carbs and sugar and try to fight through the tears, sadness and depression I continue to feel about everything that I can't seem to get a break on. I'm just hoping I can keep getting up at the usual crack of dawn and function properly at work because I honestly feel like every day is a struggle just to pick myself up out of bed, not to mention this hour commute into work. My mental state is just so burnt out. The pain is so raw and fresh that it feels like a never ending hell. Sorry for the negativity, but this is my reality.
Day 46:
3 weeks ago, I went in again to see if the extra week of medication worked for the lining thickness. As predicted, it did nothing, so we cancelled the cycle on February 26th. Now 3 weeks later, I am still living with this failed cycle waiting for all of the estrogen in my system to deplete. I was thinking by now this would have been over with, but I still haven't gotten a period :( Talk about the never ending mental waiting...when will this finally be over and behind me?
I've been feeling pretty down about the whole having a baby thing. The fact that I just wasted the last 46 days on medications and doctor's visits for nothing but medical bills is just downright depressing.
Once I do get my period finally, I'm not super sure where we go from here. Is this the end? When do you give up after so many failures? I'm not sure how much my mental being can take. But how do you give up on creating a family with your SO? I'm at such a loss, and wishing there was some way out of this constant depressing mess.
Comments