Have I Had Enough?

I have spent a lot of time in the past few months asking myself:

Have I had enough of this infertility?

Have I had enough procedures?

Have I had enough stress?

Have I had enough Doctor visits?

Have I had enough treatments?

Have I had enough medications?

Have I had enough of what western medicine has to offer?

Have I had enough pain from endometriosis?

Have I had enough strain on my marriage?

Have I had enough holidays ruined by our inability to have children?

Have I had enough delays in starting my career?

Have I had enough of putting the rest of my life on hold?

How do you really know when you have had enough?

I’m pretty sure I’m at that point. I’m done.

I don’t want to think or deal with infertility anymore.

Admitting that hurts more than infertility and endometriosis combined.

Yet Another Holiday with Empty Arms

Father’s Day is once again fast approaching.

For me, I hate it even more than Mother’s Day.

My crappy body is the reason we aren’t pregnant and may never be. The enormity of my guilt whenever I think of my husband never experiencing fatherhood is overwhelming. He would be an amazing father.

I know how much he wants to be a father.

And it’s the one thing I can’t give him.

  

Today Is A Hard Day

If only…

If only Petri had hung on…

Today would have been my due date…

Tomorrow is surgery day…

I need to be strong going forward…

But for today…

Today I will let the tears fall…

Don't Get Your Hopes Up

You think I would have learned by now.

Good news in regards to my fertility is always too good to be true.

Our plan moving forward with surgery was to go on hormones afterwards to suppress ovulation for a month or two and give us and my body a much needed break from trying to conceive. But since I can never leave well enough alone I asked for a repeat ultrasound during my pre-op appointments yesterday to reassure myself I do in fact have normal ovaries. Dr. Endo also said it would be helpful to repeat the FSH and E2 levels just to see how they correspond to what the ultrasound showed.

Ultrasound showed 7 antral follicles on the right and 5 on the left. 12 follicles are lower in the range of normal, but still a respectable amount. Today Dr. Endo’s nurse called with my lab results.

I’ve spent the last hour sobbing uncontrollably.

FSH 18.1 E2 30

Once again, our hearts are breaking.

I know this doesn’t mean we’re completely done. Yet.

But it does make everything so much harder. We will have a very hard time recruiting eggs and making embryos, which I know is something we’ve already struggled with. I guess we’re back to researching clinics; if we can even find a clinic that will touch me with an FSH that high. I know it’s hard to stimulate me, but seeing the numbers just crushes my spirit. I had hope, but I’ve lost it once again.

Oh yea, and we just found out my Husband’s sister is pregnant. Again. This is baby number three and due exactly one year after she had the last one. It’s so hard to see since she barely takes care of the two she already has. And my MIL can’t even fathom why it upsets us?!!

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….