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Archive for the ‘endometriosis’ Category

I’m 4dp5dFEt and just not feeling PG.

I’m trying to imagine how I’d deal with a BFN this time. I really think this is the end of the road for us. We have 5 great blasts left on ice but I just can’t see spending more money to put them back when clearly nothing is working. It’s like every penny I spend on IF is a penny I should be putting in my son’s college fund or something.

I really should go on BCP to manage my endo and avoid pain and a 3rd lap, so it’s not like I can just see what happens after this.

I just yesterday told someone to try to avoid getting upset until there was something to be upset about. Why can’t I take my own advice?

I can’t believe I have more than another week of this limbo. I just want to wake up when it’s over.

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I went in for my post-op appointment on Friday and also found out some information about my upcoming FET cycle.

In bad news, my endo had moved from stage 1-2 to stage 3. Blech. He said there wasn’t a ton of endometriosis on my left ovary, but there was a lot of scarring and adhesions that had left it adhered to my pelvic side wall again. It was also wrapped all around the uterine ligaments. Given that I don’t really need it anymore in terms of getting pregnant, we discussed beforehand whether it might make more sense to remove it as 90% of my pain is on the left side.

He said he was surprised that I had gotten PG on my own at all because both of the tubes had telescoped in on each other (I didn’t understand this description, but he just means they have collapsed like a closing telescope.) There was a little endo on the right ovary and tube that he removed.

He also removed a small uterine fibroid. Not because he thought it was a problem, just because it was bothering him to look at it (his words.)

He said he was up at 2am the night before thinking about me (um, weird!) and decided to put me on some add-back estrogen because he’s afraid being on the lupron depot could be cutting off too much blood supply to my uterus. When he did the hysteroscopy (camera in the ute) during the surgery, he said the lining looked very very thin. It should because of the Lupron Depot, but he didn’t want to go overboard.

So on Tuesday I’ll get my last Lupron Depot shot. That will be CD1 I’ve started taking add-back estrogen (2mg) 1x a day. CD 19-28, I’ll start up on prometrium (progesterone) again to bring on a period.

When I get my period, I’ll continue with the estrace, take prometrium CD 19-28 and start daily lupron day 21 (daily shots meant to suppress ovulation.)

I’ll probably do an endometrial biopsy between days 22-26 of that cycle. It should give him an idea of what my lining is doing after the lupron and will have the added benefit of “irritating” my ute so that it will produce a thicker lining the next month.

Somewhere around June, I’ll start a patch protocol for the FET, which, as I understand it, means using estrogen patches (Vivelle) of increasing dosages to build up my lining. Then I’ll start some antibiotics (protect against infection) and prednisone (a steroid to fight inflammation and help with implantation.)

My husband will also take antibiotics do he doesn’t give me anything gross. 🙂 About time he had to take a pill!

I may do intralipids at some point. I’m not entirely sure how they work, but they’re supposed to be helpful with women who have immune issues that prevent implantation/cause miscarriage.

My RE is VERY conservative and is still hemming and hawing about this. I have volunteered to be his guinea pig as it is experimental, and I have nothing to lose at this point. The only risk is that I could have an allergic reaction to them, and that’s a pretty small risk.

The actual embryo transfer will be in mid to late June sometime. The last shot!

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Would you be upset if you lost one?

My Mom seems to think it’s going to hit me like a ton of bricks and I’ll be all upset.

I just don’t really care at this point. I don’t want to be in permanent menopause if my right ovary doesn’t kick in, but it seems like there’s a small chance of that happening, and I’ll deal with it if it happens.

I don’t need it for making babies as I’m not going to get PG that way anyway. I have 7 blasts on ice. If I have any more kids, it will be from those “frosty tots.” My ovaries are just keeping me sane and upping my bone density at this point, not fertile.

My endo pain was almost exclusively on the left and I’m hoping that losing that one will make the pain go away.

Am I nuts? I’m just not that upset about it.

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The irony is not lost on me!

So as I mentioned yesterday, the worst part of a laparoscopy is the gas bubbles you get under your diaphragm because they blow you up to be able to see. It sounds like no big deal, but there’s some kind of nerve confusion between your diaphragm and shoulder that makes your shoulder hurt like crazy from the gas.

Yesterday I was 4 hours into my percoset (ie 2 hours away from another one.) I thought I’d try to go lay on the couch since being in the same position on my bed was making my back sore.

When you stand up, though, the gas puts more pressure on your diaphragm, making the shoulder hurt more. (I’ve been pretty much flat on my back for this reason since Monday.)

It hurt so damn bad that I couldn’t breathe and was hyperventilating, panicking, etc. I couldn’t get a breath because it caused a stabbing pain in my diaphragm, and the shoulder pain was so bad I couldn’t move. The harder time I had breathing, the tenser I got. The tenser I got, the worse it hurt.

Thank God for my Dad and husband. Dad stayed with me all day to fetch stuff for me. He rubbed my shoulder under the heating pad until Ben could get home (called and asked him to come early) to come do the relaxation stuff we learned in our Bradley Childbirth classes (oh, the irony, but that’s some good sh!t). Between the two of them I was at least able to breathe again and get semi-comfortable.

Turns out I can take 1-2 percoset every 4-6 hours and I was taking 1 every 5 hours. Plus I can take Advil in between. So I upped the drugs and started walking around once they kicked in, which has helped the gas dissipate.

Doing MUCH better today. Now I just have to wean off some of these drugs so I can drive myself to work on Friday.

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This is getting kind of old!

I had a call-in consult to talk to the RE today about the schedule for our FET planned for June. It’s a little complicated since I’m doing 3 months of the devil drug (Lupron Depot), and I wanted clarification on the scheduling. Also (and perhaps more importantly as I could have cleared up some scheduling questions with the nurses), I wanted to talk to him about the possibility of doing intralipids before my FET. I’ve been reading about immune issues and IVF failure/miscarriage HERE (blog of a RE at a well-known clinic), and I swear it’s like reading my reproductive history. Supposedly the intralipids don’t hurt, and they might help.

My REs concern with them is that my 2 hour glucose test had slightly elevated levels and an influx of calories (I don’t remember exactly how many, but it’s insane. It’s literally a giant IV bag of fat infused via an IV line) might have some interaction with that. He’s going to look into it more, though. He hasn’t used it, and it’s a new idea. I volunteered to be his guinea pig if he thinks it will help.

Before I could get to any of those questions, he started asking me about my pain levels. My AF this month was INTENSE. I was on the couch for 2 days with a heating pad and on Vicodin. I’ve also started having a dull cramping sometimes sharp pain throughout the month. I’ve been into their office 2x with this pain, and they think it could be cyst related (I had cysts, but it’s hard to tell what’s a big old bad cyst and what’s just part of normal ovulation, which is by nature cystic.) It could also be related to my endometriosis.

Lupron will take care of the small implants of endometrial tissue they can’t visualize well (which could still be screwing up my hormones). It will not, however, take care of larger adhesions like the one that was attaching my left ovary to the back of my uterus last year. There’s nothing to say those adhesions aren’t back (the last doctor said it was a good likelihood because they make things kind of “sticky.”

So he wants to clean it out again, despite being rather opposed to the idea of the annual “laporoscopy carousel” that many women with endometriosis seem to end up riding. If I had coverage for multiple IVFs or FETs, he’d probably go the less invasive route (I assume, he didn’t say that, but our conversation was hinged on the fact that we’re doing one FET and then we’re done.) But I don’t. So no messing around.

The new plan is a lap in March. Starting Lupron Depot as planned (but on February 22nd now because it’s more convenient for work, and I won’t have to take time off). FET still in June (probably towards the end of June, depending on my cycles.

I’m starting to feel like my job is going to think I’m one of those psychotic women who come up with random vague ailments so they can get surgery. At least, I’m having surgery about that often.

Can I get off the carousel after this?

You know what, though? If it gets me back here (well, maybe minus the IV), it will all be worth it.

Owennb

I swoon just remembering those sweet little baby coos, the snuffling sound he made when he wanted to nurse, the warm feel of his body against mine, and don’t even get me started on the smell of his sweet head.

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My friend Kerry was recently featured with her family in the NYT. (Her blog about her IVF w/ ICSI, twin boys and NICU stay can be found here: ourstorkgotlost.com

The topic of the NYT article was on “The Gift of Life and its Price” It had to do with the high cost of twin+ pregnancies and how the number of premature births has increased 36% over the last 25 years. That increase is due at least in part to fertility treatments. 60% of twins are born prematurely.

My friend’s Kerry’s beautiful boys Max and Wes were born about 10 weeks premature at around 3lbs and had 43 day and 51 day NICU stays at a cost of $1.2 million.

Kerry and Jeff, like Ben and I, have ONE SHOT for IVF. They spent 23% of their annual income trying to have a baby, so when the choice was given to them “put back one or two high quality blasts” they of COURSE chose 2 to maximize their shots of pregnancy.

The thing is most medical organizations, including the CDC and Society for Assisted Reproductive Technology (SART) suggest putting back only one embryo because of the increased risk of multiple pregnancies.

Yet most insurance companies don’t cover IVF. It’s a “luxury” to have a child, I guess. Well guess what. I have a child and am still willing to pay about $25,000 to have a second. We did put back one blast, but only because we had high qualities blasts to freeze. When we do our FET (it costs another $5000 or so), we’ll put back two. If I had my options, I’d put back one, one, one, one, one, one, one. That whole procedure would cost $60,000 for the IVF and all resulting frozen transfers. If that whole process were covered 2x (and most people are lucky to have 1-2 blasts make it to freeze), I bet the number of twin pregnancies due to IVF would go WAY down.

Unfortunately, so much of this is about cost.

My laprascopic surgery to remove endometriosos (a covered expense) cost more than $30,000. I got it in the hopes it would improve my chances to conceive. The pain from it can also be treated with birth control pills (though not when TTC, obviously.) My insurance company could have paid for 1 IVF for less than the cost of the surgery.

Too bad nothing about our medical care system makes sense.

This is the March of Dimes Prematurity Awareness month. IMO, the quickest way to reduce premature births is to do all we can do to reduce multiples. My first baby was in the NICU for 4 days. It was 4 days of hell, and I don’t know how those families survive extended NICU stays, let alone with young kids at home. IMO, the best way to ease that suffering is to cover the MUCH cheaper cost of IF. Don’t even get me started on what that would do to the mental health costs of IF patients! To me it’s all dollars and sense.

You can give money to the March of Dimes to help premature babies here:
https://www.marchofdimes.com/howtohelp/donate_online.asp

You can take action with the advice of RESOLVE’s (national infertility association) tips to improving IF coverage here (call your representatives and senators, write to your company’s HR department demanding reasonable IF coverage, etc):
http://www.resolve.org/site/PageServer?pagename=ta_home

You can see the letter I wrote to our insurance company here:
https://seekingsibling.wordpress.com/2009/07/27/why-i-think-insurance-should-cover-infertility/

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There’s this term “chemical pregnancy” that you see around the fertility boards. My midwife and RE have just said miscarriage. It’s a really early miscarriage and technically defined as a pregnancy that never gets far enough to see on an ultrasound (around 5.5 weeks, probably). This is my second. I made it about a week longer than the first.

The first was our second month trying the first time. I was sad, but not really pregnant long enough to feel too attached. I got a BFP at 10 and 11 DPO and then started getting negatives, so I went in to get my blood drawn and to find out if I needed a Rhogam shot for spotting. Found out the levels were dropping, got the Rhogam shot (for women who are O-), and it was all over quickly and with no intervention. At the time I was even relieved because it meant we could get pregnant. It was my 2nd month TTC, so I was sure it would happen again quickly. Sure enough, I got pregnant with Owen 3 months later.

This time it was somewhere around our 20th (ish) cycle of trying. Except we weren’t really trying. No medical intervention these days=not trying. The pregnancy test that said “pregnant” elated me. I really thought after the failed IVF I might never see it again. We’ve only got so many options left, after all. I was re arranging bedrooms in my mind upstairs to make room for a nursery. Even stopped by diaperswappers.com to see what newborn cloth diapers run these days to supplement my stash. I can’t even explain the excitement of it FINALLY happening.

That excitement lasted a day until I got the bloodwork back. When I got the results, I knew it was over, despite them wanting to come in for a 2nd test. The levels were just too low for as many DPO as I was. All of the progesterone they pumped into me over the course of a few days didn’t really matter because I started bleeding despite it. Then it all came CRASHING.BACK.DOWN. I had terrible nightmares and relived them every time I thought about it, every time I went to the bathroom.

The thing I don’t like about the term “chemical pregnancy” is that it in no way signifies a loss. This is my second and I can 100% say it feel like a major loss.

Now I don’t know what to think about our chances. Several friends I’ve told about it say, “see you CAN still get pregnant. It will happen again.” Part of me buys that. I even have a tiny bit of hope for these couple months of ignoring IF while we wait to start the Lupron for our FET (probably will start Lupron around January or February for a FET between April and July, depending on how long my body takes to go back to normal after the Lupron.) That part of me wonders if it would be worth refilling my progesterone prescription to support any miracle pregnancy that happens (which I wish I had been doing last month. I feel like it never had a shot.)

The biggest part of me is afraid to even hope. Because as I’ve explained before, hoping too much just makes me crash harder. That same skeptical part also thinks if it took 20 months to happen once, I don’t have 20 months of trying left in me for it to happen again. There a couple of reasons for this.

#1 is emotional. I can’t ride the roller coaster of emotions anymore. I have been an emotional wreck for the last year or so. It’s not fair to myself or my family, especially Owen.

#2 I don’t have 20 months. My endometriosis WILL come back. The surgery I had last February just removed what was already there (mostly grown in the 2 years since Owen, the surgeon thought, though I have no idea why he thinks that.) The RE said we basically have a year before it’s problematic fertility wise again. The pain and IBS-like symptoms haven’t been nearly as bad as pre-surgery when I’m not medicated, but it hasn’t been fun either. Just better compared to what it was before.

So today I went in to the RE because they wanted to make sure my beta levels were back down to zero. I’m not sure exactly why they do that. I suppose to make sure you’re not retaining any tissue. My only thought was that I didn’t want to go back to that place of torture for a long long time.

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