What Happens Next

There are so many decisions to make regarding infertility: when to seek to treatment, where to seek treatment, what kinds of treatment to try, and ultimately, when to stop treatments. I feel over many months now I’ve been moving closer to the choice of stopping treatments. Granted, we’ve been stuck not being able to do anything for over a year now, but the thought of going through it all again, is very unappealing to me.

My current thought is I’m done with infertility treatments for good. My decision is based upon many factors. Financially we wouldn’t be able to even think about doing treatments until my husband finishes his training next year and finally starts his career.  At one point I scoured the internet for grants and discounts, only to find for most of them I’m almost immediately disqualified due to my FSH. Yep, having infertility is not enough; you even get discriminated in the infertility community. I find it ironic, a big reason for us needing IVF is the same reason we won’t get help for it… There’s so much about infertility I will never understand.

Another driving factor in my decision is my health. After my second surgery for endometriosis in February, I was horrified looking at the pictures afterwards and seeing just how much damage was done to my body in a little over three years. And I’m convinced our seven rounds of fertility drugs played a huge role in the damage. In less than 1 ½ years my left tube was left completely blocked by endometriosis when prior to starting treatments both tubes were wide open. Again, I note the irony in how the same treatments meant to help us get pregnant are the same ones that have made me even more infertile.

My age is also bothering me. Big time. I’m not worried about being older; I embrace the person I’ve become. I just always thought I would be done having children before I hit my 30’s, not still sitting here with empty arms. Now I know 31 is not old by any means, but let’s just say I changed my mind and wanted to try treatments again, and they were successful. I would be 33 at the earliest and If I had the three kids I always wanted (greedy at this point, I know) I would be 37+ when we finished. Again, that’s not old, but it’s just beyond the point I wanted to be starting a family.

Our lives have been put on hold for many years now because of my husband’s career. I’ve had to put my career on hold and we’ve put many other things on hold as well. It’s hard seeing so many of our friends settled down and buying houses (and some are done having children already…) when we are still a ways from all of that. Once my husband is done next year, we plan on moving again to a place where I can finally start my career. Hopefully. I have an education degree and thanks to infertility, I’ve been having serious doubts about continuing on that path. But I’m ready to move on with our lives. Settle down. Buy a house. Pursue my career. And travel. We love traveling.

So I’m done. I’m done waiting and wondering and torturing my body. I’ve already decided I won’t ever have another maintenance surgery for endometriosis. Next time my pain starts impacting my daily life I will have one last surgery to remove the endo along with my ovaries so I hopefully won’t ever have to deal with it again. IVF for us has maybe a 20% chance of working. Those odds are not worth destroying my body more than we already have.

Our plan for now is to let nature take its course. Either we’ll have a miracle pregnancy (less than 2% chance), or my endo will eventually get bad enough to require the final surgery. We’re leaving that open for now. I’m done with hormones suppressing my endo since I just felt awful all the time. Do I have any hopes a natural conception will occur? Of course not. And yes, that annoying little voice in the background keeps saying, what if? What if, indeed.

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.