Waiting and Stewing, and Certainly NOT Thinking!

I can’t wait for surgery. Seriously. I called the chosen doctor’s office for an appointment. I already knew that they accepted my insurance, so it was simply a matter of figuring out the logistics of transportation and timing of the appointment. It would take half a day, so I figured that I needed to take an afternoon off of work, and that a morning appointment would not work unless it was the only option.

I called and ended up with the first available appointment… almost two months out.

So I stressed some more about my other options. Because really, I can’t wait two months to quite possibly be told that I need to either get pregnant or go on the Pill.

After stewing for a few days I called the Expert Surgeon office and found out that they do indeed take my insurance. I hung up happy since it seemed that this might work both well and quickly.

But the next day I thought about the fact that I did not know for certain that they were really, really experts at endometriosis, even if they are experts at surgery.

So I didn’t call. Instead I researched endo experts in the area. A common consensus was that there are no experts in the area. Someone and her friend liked a surgeon in Baltimore, and two people liked Expert Surgeon, but someone else (who hadn’t actually had treatment, only an initial consultation) didn’t.

I thought about all of the risks of surgery and how it can often make things worse rather than better. I thought about expertise. Ahhhh, the lure of expertise. The idea that someone out there is skilled surgically, and skilled in recognizing endometriosis, and skilled in protecting (what should be) the normal healthy state of the body, and skilled in ending pain rather than merely allowing pregnancy.

I concluded that there may be no real experts out there. Sure, some doctors are infinitely better than others (actually, their superiority is quite quantifiable in many ways!) but there is not the clear EXPERT/NOTEXPERT line that many would like me to believe. A surgeon who is young may be inexperienced and ignorant. A surgeon who is old may be incorrectly convinced that one way is the right way when it would not be the right way for my body, and age negatively impacts vision, physical dexterity etc.

Then I read this:

Most patients will have relief of pain with simple removal of the endometriosis. However, 20% of patients will not respond to surgery and will need further medical treatment or pain management specialists.

And this:

Endometriosis recurs in about 20% to 30% of cases over 5 years.

And they aren’t talking about surgeries done with super-specialist IAmARockStar!!! doctors. This is just surgery in general. That means that even if my surgeon isn’t an “expert,” I still have an 80% chance of pain relief from surgery and a 70-80% chance of endometriosis not regrowing for 5 years.

That sounds amazing.

It makes sense that I am in the minority in not having any pain relief from my last laparoscopy. After all, the doctor deliberately left some endometriosis on my ovary. Adding in the likely adhesions, it only makes sense that I didn’t get a break from pain.

But really, all I have to do is get a decent surgeon to actually remove the endometriosis and I have an 80% chance of not needing further help for pain relief for a while?!

So I decided to call Expert Surgeon. Only it was too late that day and the office was already closed.

At home I talked with my husband about the fact that I had changed my mind (last he knew I was set with calling to schedule the appointment) and then changed it back after lots of internal drama.

There is lots to worry about if I wanted to. And to think about even if I don’t want to. After all, surgery always has its risks, and there is a reason that the last doctor did not touch my lovely endo-enhanced ovary. Why risk a functioning ovary over endometriosis removal?

Thankfully the answer is incredibly clear: because I want to be able to function. Because I want to have the chance to give myself in an active way. Sure, if it all falls apart and I have to just live with pain and exhaustion I will deal. But that is not clear now.

The next day I called and got an appointment with Expert Surgeon. And they offered me one which could have been today, except I was already scheduled to meet the wonderful Rebecca. So the consultation is scheduled for next week.

I really, really hope that it will involve scheduling surgery. The day after I scheduled the appointment I checked with work. They are cool with me taking off any time other than next week. I hardly think the doctor will try to schedule surgery two days after the appointment, so I am good to go.

And really, I can’t wait. A certain someone with whom I live thinks that it is odd that I am looking forward to getting cut open. But really, considering how often I have wanted to cut myself open? This is thrilling.

Treatment , , ,

Personality and Fertility Method

I was completely drained after my last CrMS class. The instructor is wonderful and everything went fine, but it was exhausting. It occurred to me that the problem is simply that it is really, really talking intensive.

I think that the instruction model of group classes with the instructor presenting the material, followed up by short meetings with each couple/woman is the best for introverts. That way it is not too much personal focused talking (draining!) but there is also time for people to ask questions they may not be comfortable with in the group setting.

Funny how I never would have considered personality type as an issue of which method is best to learn, but now that I think of it, it is clearly such an important issue with everything from the method of instruction to the ways in which the charts are kept.

So far it looks like CrMS is perfect for ESFJs since it seems perfect for women who are extroverts, trust doctors/”science” more than themselves, and are people pleasers. Of course this is likely different when the issue is just women who are desperate for a baby and nothing else as they are probably operating in a specific way which is not necessarily standard with their personalities. Who knows?

Fertility Awareness , ,

More thoughts on CrMS

Before the second class/first real meeting changes my thoughts, I want to post my initial experience with the famed CrMS. I am sure that I will become a great fan-girl later, so I should get this out while I can still think clearly.

CrMS was clearly designed by not-young people, not-recently. The examples are out of date, though easy enough to translate into contemporary… except when they aren’t. I can only guess about the substances that they compare to various cervical fluids for explanation.

Also, the format of the instructions is dreadful. It is far, far more confusing/not user friendly than it needs to be. And believe me, I have read a lot of confusing NFP books and materials. Josh says that this might be a good thing since making it unnecessarily complex could keep users on their toes and make us make better observations/chart more faithfully than we would if we were allowed to realize how easy NFP can actually be.

It purports to be perfectly scientific and accurate, and because of that I resent the fact that it isn’t. It is as if it is pretending to be objective about things that are ultimately subjective. And that makes me want to run to Billings. Because with CrMS I can have days where I know the difference in fertility and what is going on, but what I “objectively” observed will fit in the exact same descriptions on the chart, even though the days are NOT essentially the same. It is fine, except that I know there is information being lost, and yet it is still a complex form of charting.

And have I mentioned the organization and typography/layout of the booklet? I have read it multiple times now, but Josh has struggled through a few chapters simply because it is hideous and he hates ugly things. He read all of Taking Charge of Your Fertility and all of our other NFP materials. It seems odd to charge so much for materials and not have them half decently designed. Also, there is a stinking typo on the CHART instructions. How could they miss that a million times?

Finally, I loath the description of “using” days. I never understood why infertile Catholic women had such a distressingly non-Catholic approach to marital intimacy. Now I know. It isn’t necessarily their approach, it is the way they are trained to see it by their CrMS instruction. Not good.

Fertility Awareness ,

Healthy and Happy BEFORE Pregnancy

We want you healthy and we want you happy. And then we want you ovulating with a chart with good hormones and everything else sorted. But if you’re not healthy or happy to begin with, then it is going to be very difficult to get everything else to work right. And this has been born out by clinical experience.

Initially we started out that the fertility care chart tells us about gynecologic health. More and more we are beginning to discover it is not just confided to gynecologic health. If your general health is off, then the fertility chart goes off and it is kind of like your body is saying “you must be joking. I am so unhealthy, I can hardly look after myself let alone reproduce and have to run after a young one.” So your fertility cycle actually slows down and it is like a defense mechanism that your body builds in.  -Dr Phil Boyle

Listen to the whole presentation here.

Fertility ,

Pregnancy As A Solution For Endo

The thing about pregnancy–and I can’t be the first to have noticed this–is that it ends with a baby.

Q. I really want to get pregnant. Is it best for me to be treated for the endometriosis, or should I just try to get pregnant? – Lynn

A. Only you can answer that question. However, some general guidelines may help. If you have mild symptoms, or no symptoms at all, there is no reason to rush to surgery. If your symptoms are debilitating, surgery will help relieve them and may enhance your chances for conception. In between, you might use the following scenario as a tool:

Picture yourself on the worst day of your cycle. Now add a crying, hungry, wet, crabby infant to the mix. If you see yourself coping well, choose pregnancy. If you see yourself in too much pain to care for your baby properly, then you need to get yourself feeling better first. Source

This is a reality worth so much more attention than it gets. At my worst times I was angry at the women who suffered “only” from infertility. If they only wanted they could adopt a baby and have plenty of health and energy to mother the child. Their main problem was that all they cared about was being biological mothers.

But now I realize that having less can give one the ability to appreciate more.

If you find a husband easily, you can completely neglect that unfathomably wonderful blessing and focus only on babies. And if you are not in physical pain etc. you can focus only on infertility, and never realize the gifts that you are given in the form of health.

But, more importantly, this is so essential to remember for the very practical treatments that are chosen (or not). Pregnancy, when achievable, does not cure endometriosis. At best, it shuts down the source of pain for the time of pregnancy and breastfeeding. But then one is left with the child to raise. And the child is left with a mother who is unable to parent.

Whenever I am having a very bad day I thank God that I do not have a baby. For it is one thing to struggle to function and realize that I am a failure as a wife in every normal sense of the word. But it would be quite another thing to realize that I was unable to properly care for my child.

The pain is bad enough. I am so thankful that I do not have to have the burden of being a bad mother on top of it.

Fertility , , , ,

I Like The Bright Colors And The Babies

One of the advantages of being married to a geek is that he might just end up using words like “fun” and “interesting” to describe the introductory session to CrMS even though he already knew just about all of the information. Or perhaps it was because he already knew the information that he could focus on analyzing things like the fact that brightly colored stickers are a great psychological trick for making people feel like charts are easy to read.

In any case, he loved it, and that meant that I really, really loved it. I am not sure what we actually learned in terms of fertility facts, but I learned something incredibly important: not all CrMS-types are complete snobs. And this was what I really, really needed to learn.

What he liked? Bright colors and babies (stickers).
What he learned? That Creighton does not use any cross-checks.

What really matters? We are both happy to be going back.

Learning

Shiver Me Liver

This week brought the results of basic blood tests.

At the end of the day  I told Josh about the results and he was surprised.

He was not surprised in general, he was surprised that my liver was in great shape.

Now I am overweight, but I am not so fat that I expected liver problems, and my drinking could be only be classified as moderate if you think that Saint Augustine is a “moderate” in his view of sex.

But Josh thought that the amount of painkiller I take would have done serious damage already. Which is a little amusing considering how very hard I work to not take too much pain killer. I typically simply live through headaches because I know I need to save up for the times that I cannot function without pain killer–the times when a crazy dose of naproxen is all that stands between me and multiple sick days each month.

Anyway, the results were generally good overall and the doctor was very impressed with how healthy my diet is and said so at least three times. I think that since I am overweight she had expected poor results. As it turns out one can indeed be both fat and healthy. Or at least have great cholesterol, blood sugar etc. Three cheers for flaxseed and lots of vegetables!

I was happy that my iron levels were normal considering all the bleeding I’ve been doing these days. The only slightly negative result was my vitamin D levels, but hey, I don’t want to get skin cancer. So I will now take the supplement regularly rather than once a week or so.

The doctor skimmed over the fact that my thyroid results were on the high side of normal. I believe my thyroid results were solidly normal a few years ago, so I don’t know if it  was simply a variation in testing or if things are getting worse.

Hopefully the more in depth blood tests will reveal more on that matter.

In the meantime, it is time to drink to a good liver!

My Body , , , ,

Blood 2.0

Last month was fairly typical for the heavy bleeding that I experienced for several years, though it was the worst that it had been in the past few years. It seemed too much to deal with while working and I was surprised to remember that one of the things that had finally pushed me to actually take artificial hormones in 2008 (after having needed them for pain for so long) was the insane bleeding. There was not only the incredible weakness that comes from losing so much blood, I could not go to class without leaving multiple times. I waited once for half an hour (after all, surely a cup and pad could handle 30 minutes of blood?) only to find myself with a mess when I made it to the bathroom.

Remembering that and facing the same level of bleeding again I thought that it was nothing less than extremely stupid for me to keep resisting artificial hormones. Perhaps my overwhelmingly foggy mind is responsible for my irresponsible decisions?

But of course it passed, as it always does, and as I decided (primarily through lack of alternate decision) to see what my next menstruation would bring.

It was incredibly different from the month before. The first three days were light bleeding–sometimes only spotting. The fourth day was a Sunday, and I was fine through most of mass until the very end when I hurried to the bathroom during the final hymn. I made it in time, and the clots were blessedly small.

My pain was still minimal, so we stopped by a store on the way home. The cramps that came were so sharp that I had to crouch down on the floor, despite not wanting to embarrass my husband. The lack of pain and bleeding over the past days meant that I was still feeling well enough mentally to mostly be in awe of how sharp and sudden these pains can be. I have no idea what makes my body go from light spotting to clotting and sharp cramping. But it is so genuinely shocking that I can’t help but find it interesting if I am well enough to think clearly.

The clotting and cramping stopped within a few hours (and the clots were never that significant in themselves) and then I continued with the light bleeding and spotting through the tenth day of the cycle.

It was not bad at all, but it just seems so unhealthy. When I was younger I would often bleed for at least a week, but after experiencing a few more normal menstruations I find the prolonged bleeding troubling.

 

Living With Endo , , ,

Blood. The real sort.

Blood is one of those things that one just can’t explain. Well, I suppose I could explain it since most people have enough experience with it to grasp the concepts at hand, but it is utterly socially unacceptable.

Michelle was so concise: “menorrhagia is one” meaning one good reason to take the artificial hormones which are frequently used for contraception.

That says a lot to me, but nothing to most people. They cannot understand that the day before I read Michelle’s comment, there was absolutely no way that I could go to mass. I could have moved through the pain and taken advantage of the elevators and slowly walked up the ramp, but there was no way to get past the blood. There is nothing sold that can handle the amount of blood that I would lose in the half-hour it would take for mass.

How do I explain what it is like to stand weakly in the bathroom, thankful for the certainty that my body must stop within a few hours. After all, if the bleeding continued at this rate for more than a few hours at a time I would have to go to the hospital, and I have never been hospitalized.

The product that I have found handles the most blood is a menstrual cup, either the disposable softcups or the reusable–and more awkward for me–DivaCup (I’ve never used the Keeper) plus, of course, a pad since there are always those times that the cup may fill up before you’re able to get to the restroom. I have nothing against tampons (though I do believe that they increase the cramping sometimes) but on days with heavy clotting, the clots simply cling to the outside of the tampon. It absorbs little, and so the gushing returns within minutes, and it is impossible to deal with without bloody hands.

It is not just that significant blood loss is annoying or scary (and it is often scary, even though I’ve been through it many times) or that keeping iron levels up is an extra task. It is significant. It requires significant adaptation. And sometimes that adaptation comes at a very high price.

Living With Endo , , ,