The Plan Moving Forward

We have a plan to move forward.

I’m not sure if I’m ready for what is to come.

But I need to be. And soon.

After consulting with Dr. Endo for a total of three hours between two visits we came up with a game plan. It is reasonable and somewhat conservative. She feels it would be in my best interest to do surgery again for my endometriosis. After my last surgery I absolutely decided to never again do surgery.

My last surgery for endo was horrific. We didn’t yet know I had endo going into surgery. I had been having severe pain the previous week and had landed in the emergency room. I was worked up for kidney stones and ovarian torsion, but they really didn’t know what was going on. If my Gyno had any clue, he didn’t tell me. The pain at the time was so awful and unrelenting I was puking up jello. I lost over 10lbs in a week and I didn’t exactly have much to lose in the first place. Even after surgery I went on to lose another 10lbs.

The surgery itself was not fun. I remember everything that happened just before surgery and from when they woke me up in the operating room. Normally people don’t remember those things, but I sure did. I remember being intubated. That’s something that should never happen, but in hindsight and what we’ve learned since, I wasn’t given enough medication for my body’s metabolism. I also remember waking up in the OR in so much pain and having the pain continue in the recovery room. The nurse I had was a bitch and didn’t believe I had so much pain and therefore, didn’t give me enough pain meds.

I never really felt much relief from my surgery afterwards. I should have felt better, but still had a lot of pain every day. Then we tried Lupron and that didn’t do much for me either. So I feel it’s reasonable to see why I was not ready to even contemplate having surgery again. Before Dr. Endo could say the word I was already shaking my head and saying no.

But….

Dr. Endo went on to explain why she knew she could do better for me. I didn’t want to hear it, but my Husband insisted I at least hear her out.  She described how the technique she used would cut away all of the endo. My old gyno used electricity to cauterize my endo. And according to the surgical reports, there were spots he didn’t ablate because he would have damaged good tissue, including my left ureter. Which would explain why I didn’t get a lot of relief, he never got it all. She also said that with cauterizing it doesn’t get all the deeply imbedded layers. Dr. Endo uses lasers. She can even find endo that is hidden from the previous cauterizing and scrape out all of those cells. She can even take care of the spots on my ureter and other delicate areas. Recovery should be quicker. I should in theory be pain free shortly after.

And where do we go after surgery?

Her recommendation for post-surgery caught me completely off guard.

She recommends going back to doing IUIs for at least 6 months.

Say What?!

Her reasoning is that with my normal looking ovaries and my good response to letrozole we have a reasonable chance of success. She also quoted a study done for people with stage 1 or 2 endo. Everyone in the study had a laparoscopy but only the ones in the test group had their endo removed. Neither group was told if their endo was removed. The test group went on to have a 30% higher pregnancy rate in the six months following surgery. And those were all natural pregnancies. The theory is that by removing the harmful tissue you make a better environment for your eggs. It’s certainly not a guarantee it will work, but she thinks there has been enough evidence shown to make it worth a try. And IUI cycles here would be around $400-500. Financially doable.

So I scheduled surgery.

It’s in three weeks.

And then we’ll jump into IUIs shortly thereafter.

I guess we’ll see what happens….

One Doctor Can Change Everything

I’ve been told by several doctors that:

I am in diminished ovarian reserve.

I am running out of time.

I need to do IVF ASAP.

A few days ago, everything changed.

My endometriosis has progressed to the point where nothing I do or try helps to alleviate my pain. I went to a new doctor in our new city here. She is an endometriosis specialist. She does some work with infertility and the other doctor in the practice focuses on IVF. I had day three FSH, E2, and LH labs drawn. I also had an ultrasound done to take a look at my ovaries and uterus to rule out any new problems.

I went in to my consult with her expecting bad news. After all, it had been seven months since our failed IVF. I figured my FSH was up even more than it was from the 11 we saw a year and a half ago. I also wouldn’t have been surprised to see some endometriomas on the ultrasound.

Instead we received good news.

Awesome news.

Better than we could have ever dreamed of news.

FSH was 5.5. LH and E2 were also within normal limits. I wasn’t too excited about the labs as I knew levels can fluctuate, but we were so thankful that the levels were not higher than before.

Our good news was only getting started. Because then we did the ultrasound.

My ovaries are normal.

NORMAL.

As in, appropriate size for someone my age. Not little like you would expect in a DOR patient. Well, my right ovary was very normal; the left one may have some minor issues.

AND we have follicles. A decent amount of them. It was the middle of my cycle and the doctor counted at least 12 with most being on my right ovary.

Soooo…..WTF??

How do we go from doom and gloom to rainbows and butterflies?

Let’s back up a bit. Why did my old RE and the two REs’ I did phone consults with believe I was running out of eggs and time? Well, I had that FSH of 11. The second FSH I did six months later was 7.2, but my E2 was really high that month which can artificially suppress FSH levels. I also responded very poorly to IVF cycles. And my cycles have been running shorter around 23-26 days.

Those are all indicators of DOR. The one thing I don’t think my RE looked at too closely was my actual ovaries. And old RE never told me any of my antral follicle counts. The more I learn about IVF the more I think my old RE was not very up to date with current knowledge.

So how can I have so many symptoms of DOR, but not actually have DOR?

Elevated FSH – Upon looking at my left ovary during the recent ultrasound, there were not as many follicles growing on that side. Only a few compared to rock star right ovary. If something is going on with my left ovary it could explain why I had a high level.

Short cycles – Endometriosis can cause problems with your cycle. I never read much into that aspect because for the first few years after my diagnosis I was on birth control. Dr. Endo said that many times in her endometriosis patients she finds they have a shortened luteal phase. They sometimes also go quicker to ovulation. This would result in a shorter cycle.

Poor Responder to IVF – This one is starting to make more sense. Every time I have had pain meds for surgical procedures I have never been given enough to help my pain and so every recovery room visit I have hated. I am usually in tears from the pain and they have to give me extra doses and sometimes seem surprised at how much pain medicine I require. It seems my body metabolizes medications much quicker than the average person. (Rock star liver!) Looking back at medical interventions I have had, this is a very common theme of iv and oral meds not seeming to ever be a high enough dose for me. This may translate into why I don’t respond well to IVF meds. Dr. Endo said there are some people that are just genetically designed to where they don’t respond to injectable gonadotropins. This is very likely the case for me. If we remember, I responded very well to the lowest doses of clomid and femara. My ovaries liked those drugs and were happy to spit out 3-5 follicles each cycle. If I was truly in DOR Dr. Endo said I likely would not have responded so well to those drugs either.

So what does this all mean and where do we go from here?

We have HOPE.

We have TIME.

We still have OPTIONS.

Since this post is already so long, I will save our plan for another day.

We have many things to contemplate right now.

And we are so overwhelmed and thankful for the GLIMMER OF HOPE we have been blessed with.

Santa's an Asshole

He brought me something red ON Christmas Day. Prick. I was hoping for a miracle baby like I do every month. We are still trying naturally as we wait to figure out how to finance several more rounds of IVF. Earlier this month we even went on a tropical vacation and relaxed (for a friend’s wedding). I quit my stressful job of working with small children the day before we left (stupid to take that job to begin with, I know) and had just signed on to a new job making a lot more and working less hours. It was the least stressed I have been in over a year.

Next time I ever hear someone use the phrase ‘just relax and go on vacation’ I will not refrain myself from slapping them silly.

Next step is an appointment with an RE in our new city here. I’m not expecting a whole lot since their clinic has only been up and running for a few years. They’re the only local one and they give employees a discount. So it’s worth visiting. At the very least I need scrips for more pain meds as I’m running out.

We do not have any fertility insurance coverage here and that really sucks. Even the insurance we have for covered services sucks. I keep telling myself we have less than two years left here, but by then, it may be too late for us.

Menopause does not wait while we’re making plans. It’s so frustrating that in two years we can afford treatments, but by then my ovaries may have shut down completely. Provided my endo doesn’t destroy them before I run out of eggs. I’m actually a little worried about what endo has been doing to my insides. It’s getting worse. Much worse. But I absolutely refuse to do surgery again, so time for me to just suck it up.

I’ve spent countless hours researching different places. It’s so frustrating because each place tells you something different. Except of course that with my high FSH I need to be doing something NOW. They all can agree on that. Only, again, lack of money is preventing us from trying. I’ve even looked in to scholarships and discount programs. But of course with high FSH I do not qualify for most of them. Even in the infertile world I feel discriminated against.

My biggest debate right now is whether to do full out max dose meds or to try mini IVF where I just stim with clomid. My reason against the heavy protocol is just that, it’s heavy. And expensive. And painful. And only resulted in three eggs and one embryo. On the mini end of it, my body liked clomid. 3-5 follicles each time. I’m just so torn; I don’t know what to do. And I’ve talked to doctors on both sides of the fence. I just want to store up as my embryos as I can since I know we don’t have much time left. I just don’t know the quickest route to achieve that.

Outside of all the infertility crap I’ve been doing better. Happier than I’ve been in a while even. I’ve been making friends and getting out and about in our new city. It feels like home here. I feel settled and comfortable. Now if only we could make our little family a little bit bigger….

TTC Naturally After IVF

Out: Max dosing of fertility drugs

In: Usual daily vitamins, baby aspirin, DHEA

Out: Needles

In: 90 minute massages

Out: Sitting on my butt at home (didn’t want to risk upsetting implantation)

In: 40-50 min of cardio and 30-40 min of weights Every. Day.

Out: Eating a ‘fertility friendly’ diet and pigging out after BFNs

In: More fruits and veggies, no soda, a little desert most nights

Out: Eating out at restaurants

In: Learning to cook

Out: Charting my temps, cm, ovulation, etc.

In: Only noting the first day of my period

Out: Feeling like a crazy hormonal person

In: Feeling more level headed and calm

Out: Social recluse

In: Making new friends and exploring our new city

Out: Dealing with family drama

In: Trying to stay far away from it all (the extra 400 miles certainly helps!)

Out: Boycotting facebook entirely while TTC

In: Adding many new friends and not hiding pregnant friends

Out: Fighting with Hubby about the timing of sex

In: Trying to reclaim a more normal sex life

Out: Lots of acne

In: Clearer skin, but still a few pimples

Out: Analyzing every little symptom or lack thereof

In: Still working on ignoring the signs

Out: Abstaining from alcohol

In: Enjoying a drink or two or sometimes even three without guilt

Out: Most days feeling sad about not having a baby

In: Occasional sad days, but getting fewer and farther between

Out: Worried about early menopause before having funds to try again

In: Yep, still worried about that one. A lot. Stupid ovaries.

Out: Not getting enough sleep

In: Allowing myself to use melatonin to help reset my sleeping pattern

Out: Crazy work schedule

In: Not working (hopefully will have something lined up by September)

Out: Working opposite shift from my Husband

In: Seeing my Husband every night and the days he’s not on call

Out: Dodging questions about us having a baby

In: Still dodging from family and old friends, trying honesty with new friends

Out: Stressing out about infertility

In: Trying to forget it most of the time…still working on this one

Out: Endo pain

In: Worsening endo pain (fertility drugs are NOT endo friendly)

Out: We only have a 2% chance of getting pregnant naturally

In: Fuck the 2%

Transitioning to TTC naturally after IVF is a difficult journey. You go from having everything carefully regulated and every little symptom diligently tracked to absolutely nothing. Who are we kidding, even the receptionist knows more about our period than we do. Then suddenly you run out of options for awhile or maybe even forever and find yourself in a very strange place. Suddenly no one cares if you have your period and if it’s the full flow or spotting. There are no appointments to attend, no more things shoved up your vag and no more instructions to wait for. You’re now a very seasoned infertile, but you’re back to doing things old school. It’s like going back to the beginning, only not. Because you’ve lost the innocence you once had. You know way too much now. You know the odds and everything you’re working against. And yet, you’re still willing to give it a try, because what else are you going to do?

And let’s be honest, you will forever be wondering and hoping, what if?

It Wasn't Supposed To Be....

We made our big move a few weeks ago. It’s been quite the transition.

My Husband had exactly three days off from his last day there to his starting date here. Obviously that doesn’t leave a lot of time to move. The whole process was actually a lot smoother than I thought it would be. We had a couple awesome friends of ours that helped us move by loading up there, driving one of our cars, and helping unload here.

I haven’t yet been able to land a teaching job and likely won’t be able to in this community. I will substitute teach, but I still have almost two months off before I’ll start. This leaves the unpacking mostly to me. I’m so tired of looking at cardboard boxes I could scream. There are a few rooms I have pretty much put together as I want them. The two bathrooms, the kitchen, and the balcony are done. We have a rather large balcony and so we purchased a little patio set and plants and it has become my little retreat when I need a break.

We still have our bedroom, the living room and the second bedroom. Our bedroom isn’t done because we still plan on painting. The living room won’t be done for another week as our furniture hasn’t arrived yet. We decided when we moved that it would the perfect time to sell our old furniture and buy new ‘adult’ stuff since we were tired of looking like we still lived in a college dorm. The set we picked was of stock so they had to build it new. That’s awesome, except for waiting for it to arrive. Hello, camping chairs! The second bedroom will be our office. I have a huge mental block to putting that room together.

It was supposed to be our nursery.

Had our one little embryo hung in there, I would be decorating the room for our future child. I hate going in our office. Every time I do, I keep picturing a crib and changing table. It makes me so incredibly sad. I’m hoping time will ease the pain. We were so busy preparing for our move after our second failed IVF I never took the time to really grieve our loss. I didn’t even cry when we found out. The grief really hit about a week after we moved. I spent several days in tears and not wanting to get out of bed. I’ve had some good days since, but it’s still hard. Still sad. Still not what I pictured for our life.

So many of the girls I follow have finally received their hard earned BFPs. I am so happy, but just can’t comment as I have no idea what to say. I still follow everyone, just more as an observer.

Hoping one day it will finally be MY turn.

  

You Know You Have Endo When...

Your Doctor asks YOU what pain meds and their doses to prescribe rather than making their own suggestions.

You can go from perfectly cheerful to being curled in a ball sobbing in pain in 1.2 seconds.

Your medicine cabinet requires TWO boxes when you move.

You know more about your disease than your gynecologist.

Your Husband tries to comfort you by rubbing your back and when you say, ‘DON’T TOUCH ME’ he knows to get up and leave the room before you rip his arm off.

You hear someone without endo complaining about cramps and you just want to shake them silly while yelling at them they have no freaking idea what they’re complaining about.

Your BFF’s are pain meds and a heating pad.

You’ve spent weeks of your life researching potential cures for your disease, trying any and all diets, exercise, hormones, etc. and finding at the end of the day most if it is all a bunch of crap.

You hate taking pills but the alternative is much worse so you choke them down and hope they kick in soon.

You celebrate good days by doing everything you can because you know it’s only a matter of time…..

You finish sex with tears in your eyes and your Husband thinks he was just that good, but it’s really because it hurt that much.

You become bitter and resentful that endo has taken away your ability to have children.

You write a blog post for the first time in a month and it sounds a lot like complaining, but you just don’t care because it’s one of those days.

Kick My Uterus Some More

It didn't take long for my period to show up post IVF this time.

At least I didn't work yesterday or I would have had no choice but to call in sick.

I soaked through five tampons in six hours.

Enough said.

Thank goodness for my BFFs oxycontin, valium, and prescription ibuprofen.

Today I felt somewhat better, but still pretty crappy.

Tonight we had an awards dinner for my Husband's work.

We got there a little early and found a place to sit.

Soon enough our table filled up.

And of course a 9 months pregnant lady ended up sitting right next to me.

And rubbed her belly through most of the evening.

And one of Hubby's coworkers dumped his week old baby in my arms.

Pretty sure if anyone asked when we would have kids, I would have lost it.

I'm so hurt and lost right now.

Still reading blogs but not commenting.

I don't know what do do with myself since we're benched for at least 2 years.

Just so much sadness in our life.

And we move in less than a month.