A New Month Begins, and Another Door Slams Shut

Got the “official” MRI reading back from my RE late this afternoon.  Here is what she sent me:

  
As you can see, not the best news. Of course, both cases were bad news, but another fibroid could at least be removed with hopes of it not coming back again.  Not that I was even positive I was ready for surgery again, or that it wouldnt come back, but still, it was a possibility.  I guess many women have achieved successful pregnancies after fibroids, so in the back of my mind there was a tiny glimmer of hope it was that. 

But, it doesnt appear thats the case..surprise surprise! Anyways, like you read, I will get a more in depth report next week.  However, in the meantime, here is what I already know from our prior discussions about the MRI showing adenomyosis/adenomyomas:

  • Further surgery is not an option
  • This is a chronic condition
  • The only way to completely rid the uterus of adenomyosis is via hysterectomy 
  • We can try shrinking the adenomyomas using Lupron for about 3 months 
  • If that fails, a gestational carrier is the board of RE’s recommendation 

Right now, my plan is to generate a list of questions about shrinking it.  Heres whats off the top of my mind–

  • Since this is a chronic condition, is it even worth trying to shrink it? Injecting myself everyday for 3 months…and thats just to get to another hysteroscopy to see if it worked.  Im not interested in the BS percentages of it working, Im insterested in hands-on experience…has anyone of these RE’s actually seen Lupron suppression work for this before? 
  • How quickly is it all going to grow back after I stop taking the Lupron? Long enough to even transfer one of our embryos? 
  • What about if we transferred and got pregnant? What are the chances it will grow back then? Another miscarriage? 
  • Lastly, where the HELL do we even start with a surrogate? 

I have so many questions about the last bullet, but dont know if I am ready to ask them or hear the answers.  Ill be honest, it is pretty hard for us to swallow.  I think I will post more about it soon.  

Always Room for Improvement

Right off the bat, I should say that I know no person is perfect, and no IF clinic is perfect either. Perfection should never be the expectation. However, in any profession, if you aren’t reflecting and trying to improve or do better, that could be a problem. Experience only makes you wiser if you learn from it and apply it to future situations. I know this from being a teacher the past 5 years.

This being said, we have made a list of things we think could be improved upon at our current clinic, or any clinic for that matter.  Here is what we have so far:

  1. The most advanced uterine tests should be performed on all patients before IVF. This means a Hysteroscopy should be done on every patient prior to IVF.  You heard me right.  That is our opinion after the hell we have gone through. We are proof in the pudding that an SIS and HSG aren’t always enough.  If we had done this procedure from the start, there would be no questions in our minds or our RE’s if that fibroid had truly been around for all 3 losses or not.  
  2. PGD should be offered to all patients before they begin IVF.  Looking back, we were never informed of this option & I wish we had been. We cannot do PGD testing now with our remaining frozen embryos, as it can only be done in the days following the retrieval.  We never knew about this option until we miscarried and started searching the web. Suddenly, we started seeing all of these women who did PGD before transferring.  I mentioned it to my doctor at that point, and found out it was too late to genetically test our embryos.  Since we looked good on paper (under 35, appropriate weight, etc), perhaps it was assumed we would succeed & not need this expensive option added on. If we were to miscarry again, I do not know if I could go through another transfer. Instead we have discussed a surrogate. How much more confident we would feel knowing we were transferring a genetically normal embryo into a surrogate than not! While I get that PGD is not 100% accurate, it should be offered to the patients if it is a service the clinic provides.
  3. RE’s should discuss the worst case scenarios upfront with their patients before they begin IVF.  When we began IVF, we were so set on it actually “working” that we didn’t think of anything before that point or after that point. We didn’t discuss that only embryos making it to day 5 or 6 would be kept.  We never talked about the chances of chemical pregnancies, miscarriage, or RPL.  We had no idea we would go through the torture of beta testing and what would need to happen with all that if we ended up pregnant.
  4. The RN’s should not do all of the ultrasound monitoring during an IVF cycle.  This is probably common at most clinics simply due to the amount of patients undergoing treatment.  It was never an issue to us before we miscarried either as we do trust our RN.  However, our nurse ended up missing something early on in one of our cycles that our RE probably wouldn’t have if she had been the one doing the ultrasounds to begin with. Moving forward, we have told our RE we will not be monitored by anyone other than her and she has agreed this is best.  If our RE would like to have the nurse with her for another set of eyes, great! Bottom line…I want the person who will be transferring those embryos into my uterus monitoring it before hand. No exceptions.
  5. All viable embryos should be considered for transfer.  At our clinic, only embryos that make it to day 5 or 6 are transferred.  On the day of the retrieval you are handed a piece of paper that says “be here on day 6 at _____ am for embryo transfer.”  I know several women who have had successful day 3 or 4 transfers, so I do not think it is fair to limit to just a day 5 or 6 transfer. Thankfully, our 8 embryos made it to day 6, but what if they hadn’t?
  6. After retrieval, the embryologist should provide daily updates on how the embryos are doing.  I never once talked to the embryologist for an update. I received a voicemail the day after retrieval with a brief summary, but that was it. Those days after the retrieval are sooo stressful as it is, and remember we had to wait until day 6 not knowing anything. In my opinion, not knowing anything until you show up for the transfer is adding a lot of unnecessary stress to the situation.
  7. Get input from the patient about their IVF treatment plan.  Sit down and show patients all of the different “protocols” available for an IVF cycle. Short, mini-stim, antagonist, un-medicated, etc. Tell them the success rates with each. Explain what type of patients you have seen do well on each type of protocol.  Understand that this should not be a “one-size-fits-all” approach.  Ask them questions about their bodies, and act like they are educated. Through this process, I have learned that I know my body better than anyone. Just because Susie did well off all of the drugs you gave her, doesn’t mean I will. Show me what is available, whether it is your preferred method of treatment or not.
  8. Clinics should disclose what will happen if you do get a positive beta post IVF.  We never talked about the cost to continue a pregnancy if we achieved one.  We had no clue we would be spending thousands more on medications after the actual IVF cycle itself ended.  Medications are only paid for up until the beta test in case you get a negative.  If you get a positive, you will need meds for 6 more weeks, at least.  That adds up to thousands more.
  9. Designate clear roles within the practice.  Since it is so easy to communicate with everyone at the practice (listed as a perk yesterday!), you never know exactly who to talk to about things. For example, we have had prescriptions not called in, called in twice by different staff members, etc. It would be great if each person had a clearly designated role or each patient had a clearly designated go to person.
  10. Wellness services should be provided at clinics. Everyone goes into treatment hoping it will work the first time.  But, that is not always the case.  Actually, majority of the time it is not the case.  After all of the emotional and physical trauma, we wished that our clinic offered things like acupuncture, counseling, etc.  Don’t get me wrong, when asked, they provide recommendations, but we have ended up finding our own specialists in these areas.  It would be great if clinics started including these in their treatment packages.

Hind sight is always 20/20. But we hope this list is helpful to those searching for a clinic to call home!