Uh-oh, Low Estrogen

I had another ultrasound and bloodwork done on Monday. Things were looking good from the ultrasound. 5 follicles on the right, which is about normal. Even 3 on the left, which is really good considering the left side normally doesn't produce anything. But even a few follicles doesn't mean they'll all end up being mature so we're looking at still around 3-5 possible eggs.

Then I got the phone call. My estrogen (E2) level is really low. For baseline at the beginning of the cycle it should be below 60. Mine was in the 20's which is good. For CD6 which was Monday, it should have been over 200, but it was only at 68. This is bad. It means my body is not responding to the meds. This is a new problem for me, I've never had to worry about my E2 levels before. Just goes to show that even having a protocol that worked one time, doesn't mean it will work again. My hormones are different, I'm 2 years older, and my body has changed.

They increased my dose. I'm now doing the maximum amount of drugs at 300 IU Bravelle and 300 IU Menopur. My bloodwork on Wednesday will be the indicator of if this is working or not. If my E2 doesn't increase to an appropriate level, we'll probably need to cancel this cycle and start doing more testing, try a different protocol, etc.

As a reference, each injection at the prior dose is about $300. At the increased dose it's around $500. So I shove $500 a day into my stomach (not counting all the other oral Rx I take). You would think that losing the money and cancelling the cycle would hurt, but I am so numb to the amount of money it takes to make a baby. We just paid $600 to have the infectious disease bloodwork done for both DH and me in the even that we ever have an embryo that survives to be frozen, which we won't but have to pay it anyway.

What really hurts is the thought of not being able to have another baby, or to spend a few more years trying while not being able to focus in the moment on everything DS is doing. DH and I had a pep talk last night, I meditated this morning, and I'm sending super estrogen thoughts to my ovaries right now. Come on follies, grow!

Another Diagnosis

Had a consult with my RE yesterday. He said I have Asherman's Syndrome. It's when a trauma to the uterus (my c-section) results in the formation of scar tissue. There are varying degrees of severity and that is what we still don't know. Will it keep growing back? Is it gone? Will it get worse?

Here's the revised plan. Stay on my current estrogen and progesterone therapy for the full 21 days to let my uterus heal from the last surgery. Go in for ultrasound on day 1, then start birth control (BCP) on day 5. Have another hysteroscopy so they can check to see if the scar tissue has grown back. If it's clear, I heal for a few days while on BCP, then go off, get a day 1 and start IVF. If only minor scar tissue removal needs to be done, I heal for a while on BCP then same thing and start IVF. If it's major regrowth of scar tissue, they remove it and we re-assess.

Any way you look at it, it's all a whole lot of delays. I was really planning on getting at least 2 IVFs in this year (possibly even 3) until all this happened. I've already hit my out of pocket maximum on insurance so I was hoping to get 2 IVFs for minimal money (although the Rx costs are still the biggest hit). Now, I'll be lucky if we get to do 1 this year. Based on all these hysteroscopies/healing/waiting by the time I'm ready to start it will hit my family all-inclusive trip to Jamaica. I already declared that there is no way in hell I will be in any type of a 2 week wait during that trip. I'm either not drinking because I'm happy and pregnant. Or drinking it up because I'm sad.

To put it quite simply, IF sucks.

Not the news I wanted to hear...more surgery

We aren't moving forward very quickly. I just had a consult with the RE today to review my hysteroscopy and MRI results. Apparently if you think of my uterine cavity as a triangle, 1/3 of it is blocked off. He assumes it's with scar tissue, which is bad. Scar tissue doesn't have any blood supply and it's blocking an entire wall of my uterus. This poses a number of problems.

1) I have bad eggs, I'm making the numbers up but it means only about 1 in 50 of my eggs is any good.
2) I don't stim well (I don't respond to the drugs). Typically, people doing IVF will have anywhere between 5 - 15 eggs retrieved which can then be fertilized into embryos. On my 3 previous IVFs, I had 1 egg, 3 eggs and 4 eggs that fertilized, although most were crappy eggs.
3) If there is no blood supply, there is nowhere for the embryo to implant. With my limited chances from #1 and #2 above, I don't want to decrease it by another 50% if the embryo decides to implant on the scar tissue side instead of the clean side.

All in all, this does not bode well. What to do? Apparently I need to have another HSG test (massive x-ray/ultrasound where they shoot dye up your hoo-ha) to see if there is any opening in my fallopian tube and to determine how massive the scar tissue is. Essentially, the RE is trying to figure out where/how he'll be able to cut the scar tissue out. Once that is decided...

I need to have another hysteroscopy, the same surgery I had three weeks ago. But this time, they'll be cutting the scar tissue out. My RE assured me that since scar tissue doesn't have any blood supply, I shouldn't have any issues with bleeding beyond a normal hysteroscopy. However, in order to prevent additional scar tissue from forming while my body recovers from surgery, they will insert a balloon into my uterus to keep the sides from touching each other. I'll keep it in for 3 days, then have it taken out at a normal office visit. It doesn't sound like any of this will be very pleasant.

Right after the surgery, I'll be put on massive doses of estrogen and progesterone for the next week or so. With the massive hormones and balloon shoved up me, don't be surprised if I complain of bloating. I don't quite recall the reason for all the estrogen and progesterone, but after that I should get another AF and be ready to start the IVF cycle.

On another venting side note about Rx issues, I had noted that my Bravelle finally shipped - yay! But that was a week ago and it has not arrived. It's coming via USPS Express International and requires a signature. I even paid the extra $89 for Speed Shipping which normally has it arrive in 3-4 days. I called about it last Friday, they said it was in the US. Tracking finally saw it in NY on Saturday. Sunday night it left Houston and was supposed to arrive today. I worked from home today in order to sign for it, but alas, it is still not here. I'm going to have to work from home again tomorrow to get the package, because going to the post office and waiting 30-45 minutes in line is probably worse, since they are only open during my work hours, or the time I have with my DS.

A regular theme throughout TTC#1 was...can I just catch a break? I'm starting to feel that way all over again. Why, oh why, doesn't *anything* just work smoothly?

MRI Results

I called for results. The nurse read the radiologist report and said that everything looks good and I'm fine. I asked, then how do you explain that the doctor doing my hysteroscopy couldn't see the end of my right fallopian tube and thought my uterus looks small? The nurse said she would talk to the RE.

The call back said that Doc G. reminded the nurse of the issues with my c-section and that the blood pooling in my uterus could cause scar tissue preventing implantation. Doc G. is going to look through all the radiology films himself rather than taking the radiologist report. This is good that he's taking it seriously and will be confirming everything before we start. The bad news is it could take well over a week. The waiting game continues.

On a positive note, I just had my TSH checked and it's holding steady at 1.76. And the UK got their delivery of Bravelle and my drugs have shipped. According to the tracking number they aren't in the US yet but I should have them in a few days.

Once we get the go ahead, there are still many more drugs I'll need to order (steroids, estrogen, progesterone, antibiotics, valium, blood thinners, etc..), but the heavy hitting expensive ones will all be in hand.

MRI - check!

In my quest for baby #2, I've now completed my diagnostic hysteroscopy and an MRI (with and without contrast). The last time I had an exam with contrast (dye) was a HSG (hysterosaligram or something like that) and I shoved my legs in stirrups and they shot it in. That's what I was expecting again today. But nope - yet another IV had to be started into my tiny, barely there veins. Luckily they did the IV in the crook of my arm rather than in my hand, since my hand is still bruised from last week's IV.

An MRI is LOUD! I had earplugs and headphones on and it still sounded like an alternating machine gun and fire alarm going off. The exam itself wasn't too bad. Although I'm not sure I could have mentally handled being in the machine any further. I was just able to roll my eyes back and see the ceiling which helped me to stave off any feelings of claustrophobia. The radiologist wouldn't tell me anything. Hopefully I'll get some type of results on Monday.

In the meantime, the UK is still short on Bravelle, but think they will have shipment on Monday to send out. The cost savings from ordering in the UK vs the US is still worth waiting a few extra days. I already have to wait for the MRI results so maybe the timing will work out.

Fingers crossed that the MRI results don't show scar tissue requiring the laporascopy (another surgery where they would scrape the inside of my uterus - what fun).

Hysteroscopy today

Well, I had my hysteroscopy today and it wasn't the result I was looking for. Sounds like the right fallopian tube is clear. The left fallopian tube is either blocked, or embedded in so much scar tissue that the doc couldn't see the end of it. It might also be the reason why the doc said my uterus looked smaller than he would expect, too much scar tissue. So now I need to have an MRI to help figure out what's going on. Good news of course is that since we know we're doing IVF, my fallopian tubes aren't really needed anyway. Although this also pretty much rules out any "surprise pregnancies". Bad news, too much scar tissue, nowhere for a baby to grow. More to come.

I am wiped out. Normally I do pretty well after surgery and anesthesia (I had 6 surgeries to have DS, so I know what I'm talking about). I always get the post-anesthesia chills and I go to the hospital with a sweater and a blanket to use in the car. Today I got home, finally ate food for the first time at 1pm, then proceeded to sleep for 3 hours and I still feel groggy. I wonder if it's my old age....

Updates from my previous post. My prolactin level looks great. It's supposed to be between 3-30 and mine is at 4. I ordered the most expensive drugs from the UK and my Ganirelix and Menopur have arrived. However there is a shortage of Bravelle and they are waiting to get another shipment. I'm going to have to play the time game to either hunt some down in the US, or keep taking birth control until it arrives. Considering I now have to have an MRI and see what those results are, the Bravelle might get here in time.

Any my favorite, I've already gained 2 lbs after being on birth control for 2 weeks. Lovely.

Incompetent Medical Staff

I remember back to a time when I was naive and thought that doctors and nurses knew everything. I trusted what they said and unless it was something huge, never thought about getting a second opinion or researching something over and over again online. Sadly, I know better now and I've learned that the hard way.

As I've been thinking about when we're going to try again, I'm running through all the items that I have control of about my body, which are pretty few. Two years into my infertility journey I learned that I was hypothyroid and needed to be on thyroid medication. Having an underactive thyroid negatively impacts fertility, you may think, why wasn't this checked up front? The OB checked it but it fell "in range". The RE didn't check because he assumed the OB did. I went to an endocrinologist on my own to have a full panel run and found out that while I was "in range", for fertility it's best to have your TSH <2. Mine wasn't. I got all that fixed and we had our DS.

My Rx dosage changed during pregnancy as it normally does and I wan't to make sure everything was back on track. Enter my company's health clinic. I gave blood, they called with the results and said I was slightly elevated and they wanted me to take an extra pill on Saturdays. Since I don't implicitly trust doctors anymore and keep my own records of everything, I ask, what is slightly elevated? 4.79! Are you kidding me? I told them I needed it to be under 2 and they needed to increase my dose. But apparently they aren't authorized to do that. Whatever. My PCP increases my dose and I go back to my company's health clinic (because it's free) to have my blood tested 4 weeks later. They attempt to get blood out of both arms and can't get any. They tell me to come back another day after I've had a lot of water. Um, I just drank 34 oz of water, had a protein shake and oatmeal, I can't be any more prepared to give a blood sample.

I do have tiny veins and always require a butterfly needle. Some people can't get blood out of one arm, but I've never had it where they can't get it out of both. I am tired of incompetence and of being a pin cushion. So today I'm headed to an actual medical lab where I'll have to pay to have a blood sample taken in order to work with my PCP to get my dose adjusted to have a TSH <2. I'm so glad I thought about starting this process now before I waste any money doing an IVF just to find out my TSH is out of whack.

On that same note, I've been headed to the chiropractor a lot lately to make sure my lower back is inline. When I did acupuncture on and off for a year during my last 2 IUIs and my first 2 IVFs, he thought that I had "sticky blood" and needed more flow to my reproductive organs. Testing revealed that I do have a MTHFR genetic mutation causing blood clots and I took injectible blood thinners my entire pg. Again, this wasn't found until about 2 years into TTC. It was only found because I insisted on having what my RE called a miscarriage panel run on me. They didn't want to do it because I hadn't ever had a miscarriage. So let's think about that. Never having a miscarriage means I've never been pg. If I've never been pg, then nothing has ever implanted. Think I might have an implantation issue? Alas the MTHFR which means I don't absorb folic acid and don't get enough blood to my uterus to allow an embryo to implant and grow. During my pg I went to the chiropractor every 3 weeks to make sure my back was properly adjusted to allow as much blood as possible to flow where it needed to go.

I am tired of incompetent medical staff that don't go above and beyond to find the issue. But this time around I am much wiser, much more educated, and I really do not take no for an answer. When the health clinic said they couldn't increase my dose, my brain immediately started scanning my list of doctors to see which one I could talk into writing an Rx for me. My life, my body, my money, I need to get what I want.