Still tweaking

1.  I would have thought that doing NaPro treatments for over four years would mean that we would be done with finding new problems and just be on maintenance treatment for the "old" problems.  That doesn't seem to be the case yet.  In NaPro there are usually three stages: find, fix, count (find the problems, try treatments to fix them, and then start counting good ("effective") cycles (up to 12-18) where your chart is pretty and everything seems to be normal).  In my experience, I've bounced back and forth between find and fix for a while, and then stayed in "fix" because the treatments weren't working (e.g. to eliminate TEBB) or the problem came back after having been fixed (endo—resulting in my second surgery last year).

I thought (naively?) that saying goodbye to TEBB and lowering my prolactin were the last things that needed fixing.  Apparently not, at least if you look at my chart.  I had one picture perfect cycle the first cycle without TEBB a few months ago.  Effective cycle count: 1.  The next cycle I had three days of premenstrual spotting at the end.  Boo.  Where did that come from??  Premenstrual spotting is usually caused by low progesterone after ovulation.  But that doesn't make any sense.  I'm on low-dose Clomid and post-peak HCG.  My P+7 hormone levels have been great for months and months and got even better when the TEBB disappeared.  But just in case my hormones drop too low too soon before AF arrives, Dr. K thought I could try taking more HCG.  So the following cycle I took HCG on four days post-peak (adding in P+3) instead of the three days post-peak (P+5, P+7, P+9) which I have done for the last four years.  Guess what happened to my P+7 hormones that cycle?  They were through the roof.  Like way too high.  And I didn't take my P+7 HCG before the blood draw.  Estradiol was 57 (goal >12; my previous high: 53), and progesterone was 96 (goal >13; my previous high: 73).  96!!  Yikes!  Dr. K was on vacation for that cycle review, so I had a substitute doctor review my chart.  He said to try P+3 HCG for one more cycle and see what the next P+7 values were before changing anything.  But the third cycle without TEBB looked good otherwise, so effective cycle count is at 2.  Or maybe it's back to 1 because of the premenstrual spotting the cycle prior?  Not sure if the effective cycles have to be consecutive...

2.  Now I'm in the fourth cycle in a row without TEBB.  Am I dreaming?  Is this possible?  :)  I love it!  But this cycle won't count as an effective cycle either, and it's not even over yet.  Why?  I had three days of random brown spotting around the time my mucus started.  On two of those days it lasted all day.  Gross.  Disappointing.  And bizarre—the brown showed up days after my period ended.  I'm hoping it's not a sign my endo is back.  Looking back on old charts, I noticed that, for the most part, I would have the occasional mid-cycle spotting about every three months or so...prior to my first surgery for endo.  After surgery?  Spotting disappeared for a long time.  It reappeared about when my pain returned 15 months later.  Again after my second endo surgery I had very rare mid-cycle spotting.  It's becoming a little more frequent lately.  I might have had a little pain during my last period, but it happened so fast that I really wasn't paying attention to see how bad it was.  I hope that I imagined it.  I really don't want my endo to be back.  :(

3.  My vitamin D is much better.  In May when I had it tested during my endocrinologist visit it was 79, a significant improvement from 39 last November.  I've been taking 8000 IU of liquid vitamin D daily since November, and I'm glad it's helping.

4.  Oh, and speaking of the blood work the endocrinologist ordered...  I called her office and asked the nurse to send me copies of all the results.  When I received them in the mail, I was rather surprised.  I wish I would have looked more closely at the order sheet that I dutifully carried from the exam room to the lab after finishing the appointment.  You will never guess what additional test she ordered without telling me?  A pregnancy test!!!  Ugh!!!  Talk about sneaking behind a patient's back.  :P  That day was CD6, and AF was completely normal (including a heavy day and a moderate day), so I had zero reason to think I was pregnant.  Did she ask me if it was a normal period?  No.  Charting didn't even come up.  I probably even had my chart with me.  (Gotta be prepared!)  ;)  So now in the time we've been TTC, I've had three blood pregnancy tests done, all three of which I was 110% confident would have been negative.  The first two were prior to each surgery...I understand they want to be extra careful so they check anyway.  I really hope I don't have to do any more fake blood pregnancy tests.

5.  And in completely unrelated news, there was an article floating around Facebook about the unhealthy things used to make disposable menstrual pads, which led me to search out more on the topic.  I wonder if any of those chemicals in the pads have a hand in the development or regrowth of endo...?  Even if they don't, all those chemicals near such a vascular area can't be a good thing.  The pads I buy are just the mainstream brands, nothing organic.  I mentioned a while ago that I haven't used tampons since my second surgery a year and a half ago because I heard stories from a couple ladies that their TEBB stayed away after ditching tampons.  While using only pads didn't make my TEBB go away, I didn't want to make things worse if I could help it so I have continued avoiding tampons.  I have noticed my periods are lighter (the heaviest days are not nearly so heavy) than when I used tampons, so that is a welcome change.  I have heard others make that observation as well.

Someone commented on the article that she makes her own cloth pads.  I was immediately intrigued.  If you had suggested cloth pads to me last year, I probably would have been like, "Eww.  No way."  I'm not sure what changed, but the idea sounds great to me now.  (DH's first reaction was, "Eww.  I am NOT washing those.")  I've searched a bit for fabrics online but I haven't decided on anything yet.  I do know I want organic fabric.  Cotton flannel or bamboo?  That is the question!  If I'm going to make pads to avoid the chemicals in the disposable ones, I'm going to go all out on these and make sure there are no chemicals.  I'm also debating between all white pads (boring but no dyes) vs. super cute patterns and colors.  I haven't found anything that says dyes are bad, and I do love cute things so I might be leaning that way...  Anyone else use cloth pads?

6. One of my favorite hobbies is sewing.  When I sew something for the first time, I usually create a Word document with step by step instructions and pictures on how to make it so I can use it for future projects.  For a change of pace, I've sometimes considered posting little sewing tutorials here on my blog for the different projects I've done, but I always decided against it because they were mostly baby-related gifts (burp cloths, breastfeeding wrap, etc.) and didn't really seem to fit on an IF blog.  I know all IFers have fertile friends and family that they might want to sew for, but I just decided not to post them.  A cloth pad tutorial would be much more appropriate for an IF blog, now wouldn't it?  ;)

A little medical mistake

On the plus side, the medicine I'm taking to reduce my prolactin level (bromocriptine) is working.  Let's focus on the positives here.  :)

My prolactin level rechecked last week was 1 ng/ml.  That's pretty low.  Maybe a tad too low... (goal is under 10; I started at 60)

The endocrinologist mailed me a letter with the result.  She said I should reduce my dose from taking the medicine twice a day to once a day.  I passed the information along to Dr. K.  Apparently there was a bit of a miscommunication when the medication was called into my pharmacy.  This reduced dose is actually what my starting dose was supposed to be.  Ooops.  Dr. K thought the mistake happened because the order was given verbally to the pharmacy instead of in writing.  Also the pharmacist maybe thought there was a mistake with Dr. K's order because it meant I had to cut each pill in half since it doesn't come in smaller doses (which is exactly what she intended).

So I started at double the typical initial dose...  That might explain the crazy side effects I had on the first day or so and the ongoing random bouts of dizziness.  (I almost fainted at Mass last week for the second time.)  I'm glad nothing worse happened.  I hope with this lower dose the dizziness goes away.

The prolactin medicine and/or whatever caused my TEBB to disappear (this is the second cycle without TEBB in a row!) is having a great effect on my hormones.  My P+7 values have been in the normal range for a long time, thanks to low-dose Clomid and post-peak HCG.  However, my P+7 results from last cycle—the first cycle on bromocriptine and no TEBB—set a new personal record.  They pretty much blew all previous months out of the water.

	Last cycle	Goal	My typical value	My previous high
Estradiol	53	>12	30	40
Progesterone	73	>13	20	58

So no TEBB = very happy hormones. If this keeps up, I wonder if Dr. K will have me stop the Clomid?  Now if only this would lead to a pregnancy...  :)

Lemons or something

A very curious thing happened this cycle.

I had no TEBB. (brown bleeding at the end of the period)

None.

This has only happened twice before:  1) the cycle after I finished the IV antibiotics two years ago and 2) the cycle after finishing the ampicillin last August. We've been continuing the antibiotics each cycle from CD1-CD10 in the hopes of keeping it away, but the TEBB reappeared and has been increasing little by little.

In August there was jumping up and down and dancing in the living room and a strong desire to scream out loud out of excitement. (I may have limited it to a small squeal.) :) This time, I'm mostly just scratching my head trying to figure out what made the TEBB go away and staring at my chart in disbelief. Don't get me wrong—I'm very happy to have a pretty red period. (Yes, I just used the word "pretty" to describe AF. After years of brown, which is truly ugly and gross, it seems fitting to me.)

The only things different this cycle were:
1) bromocriptine (to reduce prolactin) - started six days before AF arrived
2) turmeric - started day 6 of this current cycle
2) daily mug of lemon water

I tried to ask Dr. Google if bromocriptine could have an anti-inflammatory effect but didn't get very far, except for one seemingly unrelated article.  I suppose there could be a different mechanism at work, but I can't speculate what it could be. I think starting turmeric on day 6 is a little too late to explain the disappearance of the TEBB.  So that leads me to believe it's most likely the lemon water? It really seems too good to be true that such an easy "treatment" could be responsible...

In the past I had read about foods that were anti-inflammatory and knew lemons were on the list. Someone posted an article on FB about the benefits of drinking lemon water daily, so I decided, "Why not try it?" I figured it couldn't hurt. The directions said to put a thick slice of lemon in a cup of hot water, let it steep for a while, and then drink it. I was a little skeptical about the lack of sweetener in the water, but decided to trust the article. When DH made his daily cup of tea, he boiled some extra water for me for my "lemon tea" as I called it. (It actually sort of does remind me of lemon tea.) I was pleasantly surprised that the lemon water doesn't taste too bad, considering that lemons are so sour.

I had been drinking the lemon water daily for 3-4 weeks before AF arrived this cycle. I didn't write down the exact date I started it, probably because I didn't think it would have this dramatic of an effect.

If anyone has a better idea of why my TEBB disappeared this cycle, feel free to enlighten me. I'm not holding tightly to the lemon water theory. ;) (I spared you from the pun. You're welcome.)

So the TEBB is gone and I had been on the bromocriptine for three weeks prior to ovulation time this cycle...do you know what that means?  If there isn't another issue (still low vitamin D?) or five that remain undiscovered, we might be able to count this as our first "effective" cycle*. After nearly five years of TTC, the concept of me having an effective cycle is completely foreign. The 2WW is going to get rough, especially if I get to the afternoon on P+16 like last cycle. (Thank you, bromocriptine, for lengthening my post-peak phase to the point where the mind games begin.) This cycle I won't be able to tell myself that there is no chance of pregnancy like last cycle (because prolactin was super high), so there is a possibility I could go crazy. ;)  But it's been a very long time since I've had any optimism about our chances of conceiving, and that feeling seems really hard to shake.  I probably should be a bit more excited than I am.


And the scoop on the bromocriptine...

Bromocriptine has definitely required time to get used to it. I knew beforehand that it has a reputation for its side effects; sometimes the side effects are bad enough to make patients switch to another medication that is easier to tolerate. (That other medicine isn't quite as "safe" to take if you're pregnant or TTC, hence starting with the safer but harsher med first. It's quite possible the nicer medicine is also safe, but a bit less is known about its effects on pregnancy.) The list of side effects on the information sheet from the pharmacy was super long...seemingly longer than most other meds I've been on. I just hoped I would be spared from nausea and vomiting. (I'll deal with them if a baby ever took up residence, but not before then.)

I took the first pill with a little fear—the first time I've been afraid to take a new medication. The side effects came rather quickly and wiped me out. I counted six different side effects on that first day, a couple of which were on the "uncommon side effects" part of the list. Lucky me. One of them was full body weakness; I could barely walk (only tiny, slow steps) and I couldn't even lift a half gallon of milk. It felt like I had the flu plus a sinus infection with some nausea on the side. Lovely, right? Thankfully I felt better the second day and the nausea was gone. On the third day I felt totally normal. I thought, "That was it? I can handle this medication!"

On the fourth day, I came *this close* to fainting during Sunday Mass. Yep, dizziness is on the list of side effects. It was warm in church and I was wearing a cardigan, but it wasn't that warm, DH claims. (In my teenage years, I fainted now and again during Mass if it was too warm, so I know the experience.) After nearly blacking out during the prayers of the faithful, I spent a while sitting with my head between my knees (still in our pew), taking slow, deep breaths in an attempt to keep oxygen flowing to my brain and trying to will myself to remain conscious. I recovered by the sign of peace, and the older woman behind me gave me a big smile of relief as I shook her hand. I swear the look in her eyes said, "Oooh, I bet this girl is pregnant." Do you know the look? (One of my Creighton clients nearly fainted once during Mass, and that's what the old ladies told her after Mass—that she must be pregnant. I knew for a fact that she was not.)

The following Sunday I made sure to wear short sleeves. I did start to feel a little dizzy again but no where near blacking out this time. Since then, I sometimes get dizzy if I stand too quickly. Thankfully, other than that, I have no remaining side effects.

Now that I know my body recognizes the bromocriptine, I hope it will be able to do its job and lower my prolactin. I think I'll find out my new prolactin level in a couple weeks.


*An effective cycle is one that looks normal (and presumes or knows ovulation occurred), has a good mucus cycle, has normal P+7 estrogen and progesterone levels, and has all known medical issues addressed (including appropriate management of stress).  There also should be more than one act of intercourse during the fertile time.  NaPro usually recommends TTC for 12-18 effective cycles.

Still here, still IF

That just about sums it up.  Read on if you want the slightly boring medical details.

1.  We're still fighting the TEBB.  I think we're losing.  After the three-week course of antibiotics took it away for one cycle, it came back the following cycle for five days.  Then we started taking the antibiotics every cycle from CD1-CD10.  The first cycle had two days of a tiny bit of TEBB.  The second cycle had three days (again a tiny bit).  The third cycle had one day of TEBB.  I wonder if maybe acupuncture helped?  The fourth cycle had two days.  This cycle (#5) had three days.  Dr. K told me to start turmeric to try to combat it.  I'm feeling maxed out in the pill department, so I was happy to find that liquid turmeric exists (and is possibly better absorbed than pill form according to Dr. Google).

2.  (this is just my personal theory) The TEBB isn't just a marker for the infection in my uterus.  The longer it stays around the more likely my endo will return.  My theory is that the infection played a large role in the regrowth of my endo after surgery #1 in 2011.  It's either that or I have some crazy genetics that make me super-predisposed to grow endo at a fast rate.  (Pain during my period returned less than 16 months after surgery #1...and surgery #2 last year showed endo in all new places--no recurrence from the first surgery.)  So I'm thinking that if we lose the battle with the TEBB, it's just a matter of time before the endo returns.

hanging out with a needle in my foot

3.  I was mistaken in thinking the acupuncturist was a physician; he is actually a chiropractor.  I've never been to a chiropractor before, and I didn't know they use the title "Dr."  I get the impression that he is good at what he does, but normally he relies on instant feedback from his patients because their pain goes away (so he knows he did something right).  The only symptom I walked in the door with was infertility, and there's no quick fix for that.  One day he complained to me that I don't praise him for what he does.  I told him he will get no praise from me unless I get pregnant.  I mean, what he does he expect me to say?  "Wow, the way you stuck that needle in my foot was great!"  Seriously.  (rolling my eyes here)  He did tell me on another occasion, "I WILL get you pregnant."  I don't know if he's confident or crazy or maybe a combination of the two.  Besides the acupuncture he ordered some blood tests (blood count, chem panel, etc.) to see if he could figure out anything else that's wrong.  A bunch of the labs were not in the normal range, but he really couldn't explain to me what they meant, other than I need to eat more protein and my vitamin D is still really low (39--at least it's better than it used to be...).  During each appointment he poked me with 2-3 needles and checked muscle strength in different places.  I ended up going every week or two for two months.  During my last appointment before Christmas, he had a neurologist with him for the day.  The neurologist found some (little?) things that were abnormal, like an intention tremor--my hand shakes a little when I reach for something far from me.  They shooed me out of the room so they could talk about me before I could ask what anything meant.  He promised to call me to tell me what the neurologist found, but he never did.  He closed the office for a couple weeks before Christmas and then I was out of town until after New Year's.  When I got home, I kept putting off making another appointment.  If there was another acupuncturist in town, I would switch in a heartbeat, but there's not.  He just rubs me the wrong way.  I'll probably go back to see if it improves my TEBB, but I don't think I'll last very long.

4.  Dr. K rechecked my thyroid labs.  My free T4 was low, so she increased my Synthroid dose.  I don't really have symptoms of low thyroid, so it's basically just treating my lab numbers.  When I started Synthroid, it was also just for my lab numbers.  Apparently it's common, according to the PPVI nurse I spoke to, that after a patient takes T3 for while, her T4 drops requiring the addition of Synthroid.  I had heard other patients on T3 say that this had happened to them as well.

5.  I learned that a certain well-known NFP-only physician of another method (not Creighton) treats any prolactin level that is above 10 in infertility patients.  My prolactin was 23 when it was last measured in 2010.  I asked Dr. K what she thinks about this and if a slightly elevated prolactin could affect fertility even if I have regular cycles (around 28 days).  Usually elevated prolactin would make cycles longer, but I don't have long cycles.  She's rechecking my prolactin this cycle, so we'll see in a week or so during my cycle review what she says about it.

From the girl who was afraid of needles

Guess what I did today?  Okay, you'll never guess.  I had my first acupuncture appointment.

A while ago I read about people trying acupuncture on the IF blogs.  It's always been in the back of my mind since then as something to consider.  I was in no rush though because it involves needles and even though I'm much better than I used to be, I still don't like them.  For years, if I wasn't lying down or reclining enough so I was essentially lying down during a blood draw, there was a good chance I would end up on the floor passed out or very close to it.  Now as long as I don't watch as my blood is taken, I'm fine (excluding one episode last year first thing in the morning on an empty stomach).  Anyway, I knew acupuncture was different and wasn't supposed to hurt, but voluntarily subjecting myself to multiple needle sticks wasn't at the top of my list.  And I've seen pictures where there are a gazillion needles sticking out of nearly every inch of someone's body, which looked a little scary to me.

I've read a little here and there about acupuncture.  I knew it could possibly help decrease inflammation, which my uterus is (or at least was, at the time of surgery in February) filled with.  I knew it could help with fertility in general.  And that was the extent of my knowledge.

So naturally I made an appointment.  :)  I reasoned that if there was any time when we could use all the help we can get to maximize our chances of pregnancy, it would be now, when it appears the infection is gone for the time being.  (No TEBB this cycle!  Antibiotics worked again!)  I do not know how long the antibiotics will continue to work before the bacteria develop resistance, so I thought we could take advantage of this time.  The timing also nicely coincided with a coupon I found for the local acupuncture clinic.  :)  And I found out our insurance partially covers (or appears to cover) acupuncture.  So, why not?

The acupuncturist is also a physician trained in western medicine, so it's kind of like getting the best of both worlds.  He took my medical history first.  He wasn't too happy that I was on Synthroid (T4 thyroid hormone) because it doesn't really fix the problem at the source.  I'm not surprised that he felt that way.  He implied that he wants to find out why I'm hypothyroid because he said I'm not a typical hypothyroid patient (not overweight, etc.).  He wants to see my last thyroid labs, and if they're too old, he wants new ones run.  He was a little hard to follow sometimes, but I didn't ask many questions.  I just mostly listened and answered his questions.

He tested the strength of a bunch of different muscles (arms, legs, neck, etc.), and I could tell some of them were weak because I couldn't resist the pressure he put on them with his hand.  Every time there was weakness, he said something to his assistant girl who was taking notes.  He pressed on different spots on my abdomen to see if it was painful (nothing was).  He also looked inside my mouth, but I don't know what he was looking for.  He told his assistant to write something down, but I didn't ask what it meant.  I was happy to just curiously observe everything.

After all that testing, he started with the needles.  The first one went in my left forearm.  It stung like a bee sting while it was in and that spot ached for an hour or so afterward.  The pain was really mild though.  The second one went somewhere to the right of my belly button.  I couldn't feel that one at all.  I don't know if there was a third needle because he wasn't announcing them as he did them, and I was lying flat on my back so I couldn't see anything.  He was asking me questions or talking about something else or moving my arms and legs around while he was poking me.  The needles stayed in for a little while--maybe a few minutes--but I wasn't watching the clock.  He later retested the strength in the muscles that were weak, and the one muscle that I thought was weakest was surprisingly much stronger and able to resist him pushing against it.  I was impressed.  I have no idea what happened, but the needles did something good.  :)  Obviously, for both hypothyroid and IF, there aren't instant happy results, so we'll see if the needles do more good things down the road.

The other sign that the needles already had some kind of effect was a sensation I had in my entire chest and abdomen.  It felt like the whole area was...more active.  It was subtle, but definitely different from anything I've felt before.  I would describe it as warmer or maybe tingly (but not as tingly as when your hand falls asleep and you're regaining sensation).  It was like blood flow suddenly increased everywhere in that region.  Dr. Acupuncture said the needles were helping to "wake things up."  That is certainly what it felt like.

I asked him if he times the treatment to certain parts of the menstrual cycle, and he said he does and asked where I was in my cycle.  I told him I was about a week before ovulation.  He said he wants me to come in again either tomorrow or Thursday, so maybe something he does will help improve ovulation.  Again, I'll take all the help I can get, especially because I didn't take Clomid this cycle.  I was taking it to boost ovulation a bit; I don't have any known ovulation problems (aside from low post-peak hormone levels).  I forgot to call in the refill until AF arrived, and even though there were refills left on the prescription and normally I would have had the Clomid in hand by CD3, the pharmacy needed an authorization from my insurance company that I could continue to take Clomid, which takes a while.  I didn't know about that extra step.  So no Clomid this cycle.  I don't mind it at all actually.  We'll see how my body does on its own plus acupuncture.

Before I went to the appointment, I did a quick search online for what Catholic teaching might say about acupuncture.  What I found on a Catholic apologetics website that I trust is what I expected to find--that acupuncture as a medical treatment is fine (i.e., not immoral) as long as the patient doesn't participate in any non-Christian spirituality.  There was no spirituality aspect to my appointment today at all.  It went just like a normal doctor appointment, except after the physical exam, there were a few needles sticking out of me.  That's how I had assumed it would go.  If there had been anything questionable on the spirituality side, I would not go back.  My next appointment is Thursday.  :)

I know this might all be a long shot, but all the more fitting to start this treatment on the feast day of St. Jude, patron of all things long shot.  :)

St. Jude, pray for us!

What's new

1.  Remember last cycle when I had a crazy high progesterone level on P+7?  I asked Dr. K what might cause that.  She said it was so high because I was taking an antibiotic and it cleared up the TEBB in that cycle.  Interesting.  (So my speculation about possible pregnancy was not the answer.)  I didn't realize the infection was affecting either the quality of my egg or the ability of my body to produce progesterone.  This infection has got to go.  Seriously.

2.  Since the last set of antibiotics eliminated my TEBB for a cycle, we're going to be taking them at the beginning of each new cycle from CD1 to CD10.  I hope they work.  I try not to think about what happens if they don't work.  I have this sinking feeling that we're getting close to the end of our treatment options.

3.  I had my worst mucus ever this cycle--just two days of peak-type mucus, and neither day was really that good.  I've been on low-dose Clomid for a while, and it's never affected my mucus this much.  It might have been my fault though.  I did accidentally forget to take the first dose on CD3, so I started on CD4, thinking it wouldn't make much difference if I was off by day.  Between that and the TEBB returning, I've never been more excited to start over with a brand new cycle.

4.  DH is back to giving me the HCG shots.  I had been self-administering them for a long time (2+ years), ever since DH was out of town during one post-peak phase.  I never became comfortable with doing them.  I would usually sit on the couch holding the filled syringe and make many (fake) attempts before I could actually bring myself to do the injection.  I think over time, it took me longer and longer to actually do the injection after filling the syringe.  One day this summer I had to do the injection before leaving for the airport.  I had a half hour before our ride was coming, and I just couldn't do the injection.  Our ride arrived, and I still hadn't done it.  Somehow I did manage to do it under the pressure of "We have to go now," but something about that situation stayed with me.  The next cycle, I sat there for a long time holding the syringe, and I just couldn't do it, so I asked DH if he would help.  It was such a relief when DH did the injection.  I didn't care that it hurt.  (If you do it right, it doesn't hurt.)  He has done all the injections since then.  I still prefer the physical pain over the anxiety from self-administering them.

5.  We have a new neighbor living upstairs.  Her parents have lived above us for a while, but she was just born a few weeks ago.  It hasn't been as difficult as I thought it would be.  Maybe you should ask me how I feel when AF arrives...  I've only heard her cry while I've been awake.  (DH said he has been woken up a couple times by her crying though.)  I see her almost daily because she is carried right in front of our living room window on the way to their car or if they go for a walk.  I think my brain goes into self-preservation mode whenever I see or hear her.  Instead of thinking, "Oh, there's the neighbor baby.  I wish I had a baby," my thought just stops after the matter-of-fact "Oh, there's the neighbor baby."

6.  I don't really daydream much about what it would be like to have our own baby.  The one big exception to that is when fall arrives.  Years ago friends of mine took the cutest pictures of their baby in the middle of a pumpkin patch.  Ever since then I have looked forward to the day when I can take our own baby to a pumpkin patch.  DH and I weren't planning to visit the local farm to buy a pumpkin this year like we did last year, so I thought I would be spared the reminder that we're still waiting on that dream.  Then yesterday a friend posted a picture of her baby next to some pumpkins.  I didn't cry, but it's just one of those little things that pierce my heart.

TEBB: 3, me: 2

The TEBB is back.  :(  These victories are short-lived around here.

For one beautiful month, the TEBB was gone thanks to the antibiotics.  In my cycle review e-mail earlier this week, the nurse said this was "great news" and used exclamation points in more than one sentence.  Plus my P+7 numbers were the highest they have ever been...by a lot.  I could tell they were excited for us and pretty much implied, "This is your best chance to conceive. Go! Go! Go!"

I was really surprised at my P+7 numbers.  My estradiol was 35 (goal is >12; my typical is around 17), and progesterone was 58 (goal is >13; my typical is around 32).  I've had isolated spikes both the month I started Clomid and the first month at a slightly higher Clomid dose, but this month beat all previous values.  Maybe my body noticed that the infection was (temporarily) gone and decided to do its best work?  Is the infection affecting more than just the (in)hospitality of my uterine environment?  And I'm going to go there...could I have been pregnant very briefly?  Obviously I'll never know, but those numbers make me wonder.  Progesterone of 58?  Seriously?

So...about the TEBB.  To say I'm disappointed that it's back is an understatement.  Tears were shed.  Worst-case scenarios played through my mind.  The world is ending, etc.  But!  Then I remembered in the e-mail the nurse wanted me to send an update on CD10 about TEBB vs. no TEBB.  To me that means they have some more tricks up their sleeves.  Otherwise if they have no more treatment ideas, why bother having me update on CD10?  So I'm curious what Dr. K will recommend.  Antibiotics for the first part of each cycle, perhaps?  I've heard of others being on an antibiotic CD1-CD10 each cycle.  We shall see.

Meanwhile, I'm trying to remember this...

(source)

The moment of truth

DH and I are just finishing up a three-week course of antibiotics to treat the infection found on the semen culture.  We started them on peak day last cycle.  We would have started them earlier in the cycle but there was some mix up at the pharmacy that delayed things.  I was bummed that we wouldn't be able to take advantage of the mucus-enhancing side effects of ampicillin.  My mucus is usually pretty good, but more of the good stuff wouldn't hurt.  ;)

Once AF arrived, I started to get a bit nervous.  Would there be TEBB?  Waiting for AF to taper off was like the final days of a 2WW where there is some chance of pregnancy.  I just wanted to fast forward a few days to find out what would happen.  During the heavy and moderate days, I tried to observe if the color of the bleeding was different in any way, which might give me a clue as to whether the antibiotic had successfully eliminated my TEBB.  Nothing was different as far as I could tell.  I tried to be patient.

First day of light bleeding--no brown.  That's typical for me.  I sometimes have two days of light or very light before the brown starts.

Second day of light bleeding--no brown.  No need to get excited yet.  This is still normal for me.

Third day.  Now it's very light, and the color is bright red.  Every time I went to the bathroom, this was me:

Is there brown?   (source)

What?  No brown??   (source)

Surely this was a fluke and the brown was coming.

Fourth day.  Pinkish red.  No sign of brown.  Now every bathroom trip looked like this:

Still no brown!!!  (source)

Now it seems like AF is done except for some pink. This is me now:

There was no TEBB!!!  (source)

The one other cycle where I didn't have any TEBB was right after the IV antibiotics over a year ago.  That happiness lasted all of one cycle because DH wasn't treated simultaneously and the TEBB came back the next cycle.  (I also suspect that my endo had already returned at that point.)

But this time DH has been treated too.  And I am free of endo.

You know what this means?

This might be our first real chance of conceiving.  Ever.  This is the first time all of my known issues have been fixed or treated at the same time.  We've been TTC for more than four years.

We're going to try to make the most of this time.  Since my uterus had a lot of inflammation at the time of my surgery in February, I'm doing what I can to try to decrease inflammation in case it was not caused by the infection (but I'm hoping that it WAS caused by the infection...).  I'm not eating sugar in any form (or any substitutes like honey) along with the rest of an anti-inflammatory diet that I've been doing for a long time.  A couple ladies have told me about a possible (anecdotal) link between TEBB and tampons, so I haven't used tampons since my surgery.

I don't know how long the TEBB will stay away.   I doubt it will be permanent.  At the NaPro conference a few weeks ago, Dr. H said that even when both spouses are treated, the infection usually comes back eventually.

But for now, we begin counting effective cycles; essentially our TTC clock has been reset to zero.  An effective cycle is one that looks normal (and presumes or knows ovulation occurred), has a good mucus cycle, has normal P+7 estrogen and progesterone levels, and has all known medical issues addressed (including appropriate management of stress).  There also should be more than one act of intercourse during the fertile time.  NaPro usually recommends TTC for 12-18 effective cycles.

This is cycle 1.  I think I might be ovulating early this month because I've had some decent looking mucus during these last few days of spotting.

St. Jude, pray for us.

Culture attempt #2

We did a second seminal fluid collection while at my parents' house.  Awkward.  I managed to slip out with the sample under the guise of "I'm going shopping" (which was also true).  DH didn't come along when I dropped off the sample.

I don't know if the "you must get the sample to the lab within 30 minutes of collection" requirement applies when you're only getting a culture done (no sperm counts this time), but I did manage to get to the lab within 30 minutes.  Yay.  One less thing to worry about.  When I arrived at the lab, I handed the technician the order from Dr. K.  He stared at it for a while and then left to ask someone if they could do the culture.  I told him I had already confirmed by phone that their lab could do it.  He returned and said it could be done, but his tone left me questioning whether it would be done correctly.

I just heard back from a PPVI nurse.  The lab did do the culture!  And they found a new bug!  It's probably not good to be excited that DH and I have a bacterial infection, but I'm relieved that they were able to identify the bacteria (enterococcus), and it's something that is treatable.  DH will be taking three weeks of moxifloxacin, and I will be taking three weeks of ampicillin.  I can't take the moxifloxacin (it can't be taken while trying to conceive), and DH has to take the moxifloxacin because it penetrates the prostate where this bug is hiding out.  The nurse said taking ampicillin would prevent the bacteria from being passed back to me.  So we'll be starting those soon...hopefully this week.  I hope this treatment works!

Back to the regular program

I'm calling my first full cycle after surgery my mulligan cycle. I'm going to ignore that it happened. I can do that, right? ;) I'm blaming the craziness on the fact that my body was recovering from minor major surgery and didn't know which end was up. It turned out to be super short, just 20 days long. The post-peak phase (PPP) was only 9 days and ended with four days of premenstrual spotting, which I never have. My PPP without HCG is normally 12-13 days, so this was unusual. I didn't do a P+7 blood draw because we weren't TTC, but if I had, my progesterone would have probably been abysmal. I thought the doctor's order to avoid during that cycle was just so my body could heal physically, but it appears I needed time to heal hormonally too. I hope my body got all this nonsense out of its system and is ready to get back on track.

Thankfully this cycle does seem like I am back to normal. I only had moderate pain on and off for a few hours on CD1, a big improvement from last cycle. Hopefully the pain will continue to decrease over time. After my surgery two years ago, my periods were completely pain free, so I know it's possible. I had a good mucus build-up, and I didn't even take any mucus enhancers to offset the potential drying effect of Clomid. I'm feeling maxed out with the number of pills I swallow everyday, so something had to give (the B6 and Mucinex). My peak day was also back where it belongs (CD15).

My old nemesis TEBB is still hanging around though. DH and I started taking a three-week course of Flagyl about a week before this cycle started, so I don't know whether there was even a chance of it affecting the TEBB this cycle with that timing. Although Flagyl is supposed to be effective at killing the type of bacteria that has invaded my uterus, I'm not holding my breath that it will work because it didn't eliminate the TEBB when we took it in the past. I suppose another theory is that last June when the IV antibiotics successfully knocked out the TEBB, a new and different bacteria took up residence which might be susceptible to the Flagyl? Maybe? I'm probably grasping at straws here. :)

Boy am I glad to be done with the Flagyl. The last time I took it I spent some quality time on my knees in the bathroom because I couldn't keep food down. At that time I was on a different medication which was likely interfering with the Flagyl, so I thought this time would be better and uneventful. While this time was better, it was a tough three weeks. Even taking the Flagyl with a meal (which was supposed to help), I still had a near-constant stomach ache, almost like nausea. My appetite was close to zero, mostly because my stomach hurt, but partially because of the metallic taste in my mouth. I would not be surprised if I lost weight (and I don't have weight to lose). With three days left--the end was in sight!--I found myself kneeling on the bathroom floor again. At least it was just one night. About a day after I took my last Flagyl my appetite came back in full force. I felt like I hadn't eaten in weeks. I don't think I made up completely for the previous three weeks, but I definitely made a dent in the calories I was missing. :)

Post-surgery outlook

I'm in the middle of my first new cycle since surgery.  I'm kind of glad that we're avoiding this cycle--I'm not sure my body knows what it's doing.  First there was a "peak day" on day 11, which is quite early for me.  The mucus buildup was six days, a normal length, but it wasn't great quality.  So I thought, okay, short cycles happen.  I've never had one, but I suppose there's a first time for everything.  Now I'm a few days past where I normally peak, and I've had three days of spotting.  I'm waiting for either a double peak, which would make this my longest cycle ever, or for my period to come soon, which would make this my shortest cycle ever.  It's all rather bizarre.  On the plus side, I only had four days of TEBB this cycle, so that's a mild improvement from pre-surgery cycles.

Dr. K prescribed Flagyl for DH and me.  We've both taken it before, and it didn't help the TEBB.  I was about to call and ask why we should take it again, but I decided to just take it because it is supposed to be good for treating the bacteria I have (Gram positive rods).  At this point I'm ready to go down the list of reasonable antibiotics that work against Gram positive rods until I'm pregnant or we exhaust the list.  I'm all cleaned out inside (endo, adhesion, and fibroid-wise) so this may be the best chance we've had to conceive, and I want to make the most of this time.  DH still doesn't want to do an IV so that's not on the table at this point.

I'm also trying to eliminate sugar from my diet.  Dr. K had recommended that several months ago, but I dragged my feet starting it because I didn't think I could do it right before Thanksgiving and Christmas.  (I first started eating gluten-free and dairy-free the week before Thanksgiving that year, and it wasn't a very wise decision.)  I really don't eat that much sugar on a regular basis, but the few times I do (my favorite peanut butter, for example) are proving very difficult to give up.  I figure that if I write it here, maybe it'll keep me more accountable or motivate me.  I did manage to wean myself off of sweetened almond milk before Christmas, and now I don't mind the taste of the unsweetened stuff, so that's some progress.  I don't know if I'll be able to survive Easter without anything sweet (besides fruit), but I guess I'll try.  There may be a brief consumption of the two gluten-free/dairy-free dark chocolate candy bars that are in our pantry now, but otherwise I'll try really hard.  :)

I was looking back at the time after my first surgery two years ago, and I realized I wasn't taking very many meds (naltrexone, fish oil, HCG, and B6).  Since then quite a bit has been added (see my right side bar if you're curious).  Obviously the uterine infection still needs to be treated, but I'm hoping the rest of my current meds and supplements are pushing me closer toward a healthy reproductive system that could be able to conceive.

I guess I'm hopeful in the sense that we're doing what we can medically to optimize our chances, and if God wills it, we'll get pregnant.  But if He has some other plan for us, I'm going to trust that it will be for our good.  Do I expect that I'll get pregnant?  Honestly, no.  But thankfully God doesn't need me to expect to get pregnant in order to make it happen.  I will gladly be shocked if it happens.  I'm going to do my best to take this one day or one cycle at time and not try to look too far ahead.  I know our TTC clock is being reset to zero after surgery, and with NaPro they would encourage trying for 12-18 effective cycles.  An effective cycle is a cycle that looks like a normal fertility cycle.  I don't think having TEBB counts as an effective cycle, so we may be at zero for a while until the TEBB and infection are treated.  I'm okay with that.

Maybe because it's been over 3.5 years of TTC, but I'm really not in a rush or anxious to conceive.  Yes, I wish that we had conceived already, but being impatient isn't going to make it happen any faster.  Maybe it's just one of those IF survival skills you learn after you've tried the opposite tactic for so long.  Maybe it's saying to God, "I'm tired and my way of handling things isn't bringing any peace."  Maybe it's acceptance of the cross after carrying it for so long.  Maybe it's giving up the illusion that I have (any) control enough to let God's grace in.  Maybe it's all of the above.

Everything since Christmas

1. Before I start with my updates, I'd like to say thank you so much to all of you who prayed for those of us still waiting during Advent as part of the spiritual bouquet. (Yes, that was a month ago.) It's so easy to feel forgotten by those who have moved on into the world of motherhood and whose IF blogs have become mommy blogs. Your prayers and sacrifices were so touching and very much appreciated.

2. After some tough few weeks of Advent, I ended up having a fairly joyful Christmas (as much as possible anyway, considering the circumstances). It was nice to spend time with my grandma. She made way too much food as usual and wouldn't accept anyone's help as usual. :) None of the relatives asked us about having kids, which was nice. I wonder if they think we're not going to have kids given that we've been married for so long. One of my cousins got married last summer, and I admit I was quite relieved (maybe too relieved) to see his wife with an alcoholic drink in her hand. Family gatherings are usually my "IF safe space"--there are no babies and no pregnant women. The only children are school-aged, and my only married cousin announced they were "done" as soon as she was pregnant with their second child, who is now six years old.

3. New Year's Eve was not an IF safe space. We went to a party with friends. There were babies being passed around and multiple pregnant ladies. I had a pleasant (to the outside observer) conversation with a very visibly pregnant friend about maternity dresses and how well they fit. I felt so fake asking questions and pretending to be interested so she'd never know it was killing me inside. I really just wanted to run to the bathroom and cry. Oh, I forgot to mention AF arrived 10 minutes before we left for the party. I was in an unhappy mood (to put it mildly) most of the night, especially since I had gotten my hopes up more than usual because my post-peak phase was a day and a half longer than normal. So I was mad at myself for hoping and mad at AF for appearing when she did. Thankfully DH understood when I wanted to leave five minutes after midnight.

4. A curious thing happened on my chart this cycle, and I'm wondering what might have caused it. I had significantly less TEBB. Usually when I have it, it's present all day long and in large amounts (ewwww), but this cycle it was just a little bit once or twice each day and much lighter in color. Technically I only had two days of TEBB this cycle, compared to seven days last cycle. I did have two other days mid-cycle with a single occurrence of brown, but they were not directly after AF.

There were several things different that may have caused this change. I spent the last two weeks of the previous cycle visiting family for Christmas and New Year's, in a different part of the country from where we live. I think I ate more healthy foods while traveling--and more food in general--but I also completely overdosed on sugar. "Overdosed" is not an exaggeration. My family made multiple batches of cookies and other addictive tasty desserts just for me (with all my diet restrictions). There was a container labeled "polkadot's treats" (actually two containers) and a separate one with "treats for everyone else." I had not yet gone sugar free as Dr. K recommended--I was planning to do so after all the New Year's festivities. In my attempt to offset all the sugar, I took a probiotic twice a day without fail. (Normally at home I'm lucky if I remember to take a probiotic at all because I keep it in the fridge, so it's not in my pill box.) The probiotic is my best guess at what would have deceased my TEBB. I really haven't been diligent about taking it regularly since I had the IV antibiotics last summer when my TEBB disappeared for one cycle.

5. Another thing different about last cycle was that it was the first cycle at a slightly increased dose of Clomid (went from 25mg to 50mg on CD3-5). I had the best mucus I've ever seen. (My mucus cycle score, a way to rate the mucus quality, was the highest it's ever been. I looked through all my old charts to confirm this.) I took very little Mucinex or B6 that cycle...so much for Clomid drying up mucus! I also had breast tenderness from P+2 on which was quite a bit more painful than usual. I guessed that my body was responding well to the higher Clomid dose. My P+7 blood draw was not shipped to PPVI like normal because I was traveling, so it can't truly be compared to the PPVI values from previous cycles...however my progesterone was 43 and my estrogen was 32. Both were twice as high as the previous cycle. My body likes more Clomid. :) This cycle the breast tenderness is really mild, so I think I might be back to my "normal" hormone levels.

6. Back in December I had received an e-mail from the surgery scheduler at PPVI saying that she would be contacting me in January about picking a date for my laparoscopy with Dr. K. When I received a phone call to schedule my surgery, I was quite surprised that it was from Dr. E's office, the NaPro surgeon who is a few hours from here. It turns out that she had openings in her schedule much sooner than originally expected. When I had my appointment with her in November, she had estimated February or March, but when I later spoke with the scheduler, it was going to be a longer wait. Upon learning that, Dr. K at PPVI offered to do the surgery, so DH and I agreed because we didn't want to wait. But now since Dr. E had openings in February, we're going with her. Interestingly, Dr. K's scheduler called the day after Dr. E's scheduler called. Dr. K's scheduler was aware of the situation and was very happy to hear that Dr. E could do the surgery because she knew we much preferred to have it done closer to home.

So my surgery is Friday, February 8th with Dr. E. That's next week!!! I am excited that is it so soon and that we can drive there. I have a pre-op appointment and blood work the day before, so we'll stay overnight that night. My surgery is at noon. Dr. E will start with a regular laparoscopy, and if there's endo in hard-to-reach places or a lot of it, she'll switch to a robotic laparoscopy. If she switches to robotic, I'll spend that night in the hospital and have a two week recovery. If she stays with the regular laparoscopy, I'll spend that night in the hotel with DH and have only a few days of recovery. After my surgery two years ago it took a full week to get back to feeling close to normal, but Dr. E thinks a lot of that had to do with my uterine septum reduction. (I am very curious to learn how things look inside my uterus now...) She said a weekend would probably be enough recovery time for a typical laparoscopy. Without going into details of why I was having surgery, I explained the situation to my boss that I might be out for up to two weeks or it could be less. (I didn't say that I might be back the Monday after surgery though...) He was really understanding and said to take whatever time off I need.

7. Besides the laparoscopy, Dr. E is going to do the following: biopsies and cultures of the endometrium and cervix, selective hysterosalpingogram (she'll also clean out the fallopian tubes if they're blocked), and hysteroscopy.

8. I've started making a list of things to take along on the trip for after the surgery since we won't be home until the following day. Normally I'd be packing a lot of food for an overnight road trip, but if it's anything like last surgery, I was too nauseous to eat much for about a day. And I'm on a liquid-only diet the day before surgery, so that limits my options. I'm trying to remember what I used last time or had just in case...so far I have a pillow for the car, heating pad, sweat pants, etc. If I would be spending the night in the hospital, any advice for what I might want to have with me?

9. I'm glad I wasn't given that much advance notice of my surgery date because it's less time to be worried about what the surgeon might possibly find. I have this fear in the back of my head that the inside of my uterus is all scarred up from the septum removal, and Dr. E will say our TTC days are over. Irrational, yes, but isn't most fear like that? ;) I'm also a bit scared that she'll find absolutely nothing wrong--no endo, etc. That I think is less likely because my ultrasound series from last year showed a shadowy area on my left ovary suspicious for endo. I guess I want to know whatever it looks like inside. Any info will be helpful going forward.

Two steps forward, one step back

I'm trying to look on the bright side here. In my heart, it feels like I've taken one step forward, and two steps back.

The forward progress was the elimination of my TEBB after the ten days of IV antibiotics. Yay!

I was TEBB-free for one cycle.

The TEBB returned the following cycle. Argh!

My first reaction was major disappointment. I'd say it was worse than how I felt when CD1 arrived. The IV was neither easy nor inexpensive. Was all of that effort, inconvenience, and money wasted? It's not like I could just have another one to make the TEBB go away again. What if this new/returned infection is now resistant to the antibiotic? And the big question in my mind...if DH had been treated simultaneously with an IV, would the TEBB have still returned?

But then I realized something. The fact that the IV eliminated the TEBB for one cycle gives us answers.

1. My TEBB is infection related. This was assumed to be the case before the IV since we exhausted the other five known causes of TEBB with other treatments; the IV simply confirmed that infection was indeed the cause.

2. My TEBB can be treated. This is good news. It took me several days to realize that this was good news because of the disappointment and sadness I was feeling, but better late than never.

When I did my cycle review at the end of the TEBB-free cycle, I received a response from Dr. K a couple days before the TEBB returned. (She said to continue with all the same meds, as expected. We were giving it three cycles post-IV before considering another surgery.) A week later, a nurse from PPVI called me unscheduled. (There had been a mix up with my local lab for my P+7 blood draw from the previous cycle, and we were trying to figure out what happened to my blood.) At the end of the call, I mentioned to her that my TEBB was back. I figured that she'd write it in my chart, and Dr. K would address it during the next cycle review.

I expected that Dr. K would say that she couldn't offer me any more treatments for TEBB and that I should look into visiting Dr. Toth in NYC for a complete diagnosis of the bug(s) involved and appropriate treatment. I know other bloggers have gone to see Dr. Toth, so I am aware of what it entails for both the wife and the husband. I have explained it to DH several times this year, knowing that Dr. K might recommend it to us at any time, so that he wouldn't be completely blindsided by the idea. There just is no way of sugar-coating the prospect of prostate injections. Or both of us spending 10 days in NYC for the treatment. (Logistically that would be very hard for him to do, but I think we could figure out a way to make it work.) At this point, DH is not open to the idea of going because of the prostate injection part.

Knowing this, I wasn't looking forward to hearing back from Dr. K. Surprisingly, she didn't wait until the next cycle review, and she didn't suggest Dr. Toth (yet). A nurse called me back the next day with the following recommendation:

-vitamin C - 1 gram twice a day on days 1-10
-bioflavonoids - 1000 mg three times a day
-B-complex - 100 mg a day

She said it's one of their TEBB protocols; the idea is to boost immune function. I had never heard of this combination being used for TEBB. I didn't ask how well this protocol worked for others or how long it takes to have an effect on the TEBB if it's going to work, so we'll see what happens. I've been taking the bioflavonoids and B-complex vitamins for a couple weeks now, and I'll start the vitamin C soon when CD1 arrives.

My TEBB is...

GONE.

(picture me screaming here)

The IV antibiotics worked. I am stunned. And excited. Like jumping-up-and-down excited. This cycle might be the first realistic shot of getting a BFP that we've ever had. Except that I think my endo might have returned, but that's another story.

I talked to Dr. K. She said we'll give it three cycles. If we're not pregnant by then, a laparoscopy—my second one—is likely up next. I figured that would be the case. I'm okay with that.

But for now, I am hopeful. Like through-the-roof hopeful. :)

I have so much to write about and no time to do it in the near future as DH and I take a little vacation, but I couldn't wait to share this news.

I'm free!

The PICC line has been removed! Yay! Free at last! :)

I didn't feel a thing as the nurse removed it. The "worst" part was actually when she was removing the tape that held everything in place, but that wasn't too bad.

I still have to wait another day before I can shower so the hole in my arm closes up. I don't often look forward to showers this much, but I can't wait!

Now we wait and see what happens. I'm mid-cycle now, so it'll be several weeks before we'll know if the antibiotics eliminated my TEBB. Of course, if AF doesn't come, that would be fine with me, too. :)

To be honest, I am scared. I am scared to hope. I am more scared of the disappointment if this doesn't work. I am scared that Dr. K could say there's nothing more she can do against the TEBB. I keep telling myself that I just have to trust God on this for whatever happens, but it's so much easier said than done. I may have to keep reminding myself every five minutes, "Jesus, I trust in you."

Life attached to a bag

It’s not so bad, really.  Most of the time I don’t feel anything.  Sometimes if I move my arm too quickly I feel pain in my shoulder or arm, but it’s brief.  My main concern is keeping track of the long tubing that connects me to the medicine pump so I don’t catch it on anything when I’m moving around.

The PICC line procedure on Friday went pretty well.  My definition of “pretty well” is that I remained conscious the whole time and it wasn’t horribly painful.  I did, however, nearly faint during the pre-procedure blood draw where they needed five tubes of my blood.  One of the labs was a pregnancy test—my second ever—and like last time (before my laparoscopy) it was completely unnecessary; one look at my CrMS chart which would show a zero percent chance of pregnancy...but of course no one would trust that.  I digress.  I thought I was over my fear of needles.  I guess I'm not.  You'd think that after all the blood work I've had done in the last couple years that I would be used to it by now.  I've been having monthly draws for P+7 labs for about the last year without a problem.  The fact that I hadn’t eaten anything Friday morning as instructed was probably a factor in my lightheadedness.  Fortunately I was only lightheaded briefly and didn’t pass out completely; if I had fainted, I would’ve had to have gone to the ER, and they would have cancelled the procedure.  I like to think I have a pretty awesome guardian angel watching over me.  :)  And I appreciate the prayers from all of you.

The nurse who placed my PICC line was very nice.  He said he does PICC lines all day every day, which was reassuring.  When I mentioned to him that I nearly fainted during the blood draw earlier, he asked if I had eaten anything, to which I replied that I was told not to so I didn't.  He got upset (at the person who gave me that direction) because the nothing-by-mouth order is not necessary at all for PICC line placements.  He promised to make sure I would stay conscious for the whole procedure.  :)  I asked if he would use my left arm since I spend lots of time on the computer and wanted my mouse-using arm uninhibited, but he reminded me that the anatomy on the right side gives him a straight, short route to the heart; the left side can be more challenging for him because it’s not so straight or short.  I was immediately convinced that the right side was the way to go.  ;)

First, he did an ultrasound of my upper arm to see the vein.  Then he injected anesthetic so I didn't feel anything painful during the rest of the procedure aside from a strange, uncomfortable sensation that there was something deep in my arm and shoulder.  (He was guiding a catheter through my arm vein so it reached my heart…superior vena cava if you want to be exact.)  The actual procedure part took five minutes.  I couldn't see anything he was doing—not that I wanted to look—because he had draped my arm area with a bunch of blue fabric-like paper which created a little wall blocking my view.  He did another ultrasound at the end.  Then I went for a chest x-ray to make sure the tip of the catheter he had inserted was in the correct place.  Finally they did a test infusion of the antibiotic for a half hour to make sure I didn't have a bad reaction to it.  Meanwhile they served both DH and me breakfast.  The meal looked like something you'd get at a restaurant, not typical hospital food.  At that point, DH declared that he was glad that he came along.  He likes to be fed.  :)

Three and a half hours after arrival, I left the hospital with the two “ports” (aka lumens) taped to my upper arm and covered by a cloth band that looks like a white gym sock.  I was not hooked up to any medicine at that point.

My arm with the two ports

The home health nurse came later to start the antibiotic and teach me what to do.  Each bag of antibiotic lasts for one day (it's infused continuously over 24 hours), and then I need to change the bag.  When I attach a new bag I also need to flush one port with a syringe full of saline and the other port with heparin.  The second port is there in case they need to draw any labs.  The heparin keeps that port from clotting up while it's not in use.  I don't really feel anything when I do the flushing part.  I don't see anything except the ports; there is a bandage over my skin where they are attached.  The nurse will come back sometime this week to change the dressing.  I'm glad I don't have to do that.  :)

The pump, medicine, and other supplies

In my attempts to conceal this whole arrangement from other people’s attention, I discovered that a shirt and a cardigan together are sufficient to hide the bulge that the ports create on my upper arm.  The tube running from my arm to the infusion pump is long (about 5 feet). I am able to hide it under my shirt by running it up my sleeve and having it come out by my waist.  The pump and bag of antibiotics are both kept in a pouch with a shoulder strap, which looks like a large camera bag.  I have dubbed it the ugly purse. 

The ugly purse (with a 8.5"x11" piece of paper behind it)

There is no way I can hide it under my shirt.  If I took the pump and antibiotic bag out of the pouch, I could possibly hide them if I strapped them to my abdomen and wore a bulky sweatshirt, but that’s not my typical attire when I go out in public.  I might try that if the pump had a belt clip on it, but it doesn’t.  For Mass and for running errands, I put the pump and antibiotics in my regular purse so no one would notice anything out of the ordinary (except for about an inch of clear tubing which I tried to cover with my hand).  I’m sure I looked a bit strange with my purse on my shoulder during all of Mass, but no one questioned me about it.  ;) 

Daily activities take a bit longer to do when you’re attached to a bag all the time.  Getting dressed is challenging because essentially my arm is now 5 feet longer than usual.  My arm’s range of motion isn’t quite as good as normal, but it has improved since Friday when certain movements caused shoulder pain.  When the phone rings, I can’t just jump up and get it; I have to gather all my tubing together with the bag to make sure I don’t snag it on something.  Bathing takes a lot longer because it was drilled into me by several nurses that I cannot get the PICC line wet for fear of infection.  One nurse said I could wrap my arm in plastic wrap before showering; another said no showering at all.  Since it’s just for ten days, I’m avoiding the shower and using a sponge or washcloth.  I wash my hair in the sink.  At night the bag sits on the stand right next to my pillow so there is plenty of slack in the tubing in case I roll around while I’m sleeping.  I’ve stopped sleeping on my right side because the ports dig into my arm if I lie in that position.

So far I haven’t had any bad reactions to the medicine or to the PICC line itself, aside from occasional itchiness where the tape is.

I'm glad this is only for ten days.  I’ve been thinking a lot about people who need to have PICC lines in place for months at a time.  I’m not sure everyone needs to be attached to their medicine 24 hours a day like I do (they may just have brief infusion periods and then can be “free” of the tubing and bag for most of the day) but it definitely has made me more sympathetic.

Less than a week to go!  I’m counting down the days…

Attempt #10 to get rid of TEBB

Tomorrow I start ten days of IV antibiotics to hopefully eliminate my TEBB.  I really, really hope this works.

It turned out to be a lot easier than expected to arrange everything, aside from the 12 or so phone calls.  At first I was told by one of the nurses at PPVI that most states require an in-state provider to prescribe IV antibiotics.  However, when the nurse called in the order to the home health care agency, the fact that Dr. K is out-of-state wasn't an issue at all.  That was a nice surprise.  

So tomorrow morning at 6 am I will go to the hospital to have the PICC line placed.  That was the not-so-nice surprise.  I thought I was just going to have a regular old IV, but the medicine is irritating to the vein, so they use a catheter to go deeper into the vein so it's less irritating.  (At least that's how I understood their explanation.)  I'm a little nervous about the procedure.  I can handle IVs okay, but this sounds way more invasive.  And they said I'll be there for two hours.  DH is coming along for moral support and to drive me home in case I pass out.  :)

Tomorrow afternoon the home health nurse comes to my home to start the medicine and show me what I need to do.  Once everything is hooked up, my first priority will be to try to figure out a way to cover it all up so it's as discreet as possible when going out in public.  Vain?  No, I'm not vain.  ;)

I tried not to Google all of this too much so I wouldn't cause more anxiety.  Who knows what I'm getting myself into...

Clomid notes

This is our second cycle with Clomid. I'm on a low dose: 25mg on CD3-5. It is definitely having an effect. My mucus this cycle was not quite as good as my normal non-Clomid cycles, but it still scored in the normal range. The big effect is on my hormone levels! For the past few cycles before Clomid, these were my P+7 results:

Estradiol 9.1 - 12.7 (normal is >12)
Progesterone 20.6 - 24.2 (normal is >13)

During my first Clomid cycle:

Estradiol 19.2
Progesterone 49.9

Wow. A little Clomid is doing big things. :)

I will admit I sorta thought I was pregnant last cycle. Oh, you post-peak symptoms that mimic early pregnancy symptoms, how you mess with my sanity. ;) I had some brief, localized abdominal pain on and off on P+8 and P+9, which I wondered if it could be implantation cramps. It was similar to Mittelschmerz. I've never had an ovarian cyst but I assumed that pain would have been worse and lasted longer. I was living in my daydream that I could be pregnant, so no one could have convinced me it was a cyst. ;) And I swear my breast tenderness was worse than previous cycles. You know how it is when you've convinced yourself you could be pregnant... Alas, it was not to be.

So while everything is looking good with my hormones, I still have that pesky TEBB. If I'm not pregnant this cycle, Dr. K is recommending 10 days of IV antibiotics (clindamycin). When I first heard this, I pictured myself attached to a pole for a week and a half. The nurse said I'd be attached to a box, not a pole, which sounds like the size of a shoe box but varies by manufacturer. (Anyone had IV antibiotics before?) A home health nurse would come to place the IV and teach me how to change the bag. It's likely that I will need to find a doctor in my state to prescribe this because most of the time they don't accept out-of-state prescriptions. There are a few NaPro medical consultants in my state, so I might have to schedule a visit with one to become an established patient. I'll probably have to call them first to make sure they are willing to prescribe IV antibiotics for TEBB before making the appointment; not all NaPro doctors are necessarily comfortable with this, even though they should be at least familiar with this particular PPVI protocol because it's been in place for a long time. The nurse said they tend to have good success with the IV antibiotic in eliminating TEBB, but I didn't ask her to quantify what "good" meant.

I did ask if it would be an option to take the antibiotic orally instead of via IV. She said too many people get C. diff infections after the oral antibiotic that they don't prescribe it that way. (C. difficile is a really bad infection...)

I asked if DH would be treated also (since an infection can be passed back and forth between spouses); he's been treated with oral antibiotics every time I've been on them. She said for this one they don't treat the husband, probably for practical purposes. They may in the future if their research indicated it, but so far they don't.

What is interesting is that the nurse, who has been at PPVI for almost a decade, said that it's really been in the last year or so that Dr. H and Dr. K have been investigating more closely the link between infection and IF, and they are realizing that they are just hitting the tip of the iceberg, so lots more research has to be done. At least future IFers will be able to benefit from their research. :)

A year since surgery

The end of last cycle was stressful! AF was nearly two days "late," and I was *this close* (picture my fingers here) to P+17 and taking a (blood) pregnancy test. Normally AF shows up on schedule and starts while I'm sleeping or first thing in the morning when I get up, so there's no time to be anxious or hopeful. This time AF waited until bedtime on P+16. Not cool, AF. Not cool. Rather cruel, if you ask me. Surviving those last days before AF comes has got to shorten time in purgatory, right? hahaha Okay, perhaps not since I could have practiced the virtue of patience, and then maybe I wouldn't have felt like I was being tortured with the suspense and waiting. ;)

This is our first cycle with Clomid. I didn't notice any side effects except maybe some blurry vision for a day or two. It could have been completely unrelated though. Since Clomid has anti-estrogen properties, it can dry up cervical mucus which is important for TTC. The nurse told me to take 1200mg of Mucinex (guaifenesin only) twice a day from day 12 to P+2 to improve my mucus while on Clomid. I'm also taking sustained-release B6 for the same purpose. I had some really great mucus the day before I started the Mucinex—actually the best mucus I've seen in a year—so I thought maybe the Clomid wasn't going to affect my mucus at all. Unfortunately, the days following that were pretty pathetic mucus-wise. So...yeah, my mucus definitely took a beating this cycle.

Normally I get excited about new treatments. I was even reading in the big NaPro textbook and came to the conclusion that Clomid was a very reasonable choice for my case. But I don't feel as hopeful this cycle as I have during past cycles on a new med. I think a lot has to do with the fact that the TEBB is still front and center on my chart; I had seven days of it this cycle. I don't know how long it takes for the Cortef to work if it's going to affect the TEBB. Maybe it takes longer than three weeks to work? Here's hoping that is the case.

It also could be that I'm getting more discouraged in general about our chances of conceiving. It's been over a year now since my laparoscopy. I honestly never thought I'd still not be pregnant a year after surgery. Yet, here I am. I know with NaPro they look at your time TTC in terms of "effective cycles" (normal-looking cycles following surgery) but with all my TEBB I'm not sure I have technically had any effective cycles. I'm probably still in treatment adjustment phase. I suppose that means I should be more hopeful than I am, but it's hard because so much time has passed, and we're still trying to figure out how to fix my body. I've been offering up all the frustrations and disappointment for my prayer buddy.

The other slightly discouraging thing is that my P+7 estrogen from last cycle was low. It was 9, and it should be >12. And that was while taking HCG. Yikes. It has never been that low before. Come on, body-of-mine, I really don't need any new problems here! I guess that's something the Clomid could improve though.

I know there are limits as to how long you can take Clomid, so I hope I'm not wasting Clomid cycles while I still have TEBB. I suppose I have heard of people conceiving while having TEBB (feel free to share those kind of stories with me in the comments...haha), but I'm not sure it's the norm. Everything I learned during FCP training was that TEBB is abnormal and has to be eliminated.

Sometimes I think it would just be easier to exchange my uterus for another one than to fix what's wrong with the one I've got.  ;)

If only my uterus (and whole reproductive system) were as happy and cooperative as this one looks:

I bet this ovary works fine on it's own and doesn't need Clomid.

Source

(I'm not sure who buys plush organs—maybe anatomy teachers or doctors' offices—but they sure are cute.)

No stone unturned

Dr. K gave me her recommendations in my last cycle review: two new drugs to take. I am going to start Clomid (25 mg on CD 3-5), but not until next cycle because my pharmacy didn't have any in stock when I called. I guess I'm a bit surprised they didn't have any since I assumed that was a fairly common drug. Oh, well. I guess that just means we'll have one cycle where I'm only adding one new drug instead of two. Dr. K also wanted me to start Cortef to try to combat my TEBB. Cortef is hydrocortisone, a steroid. It's used to treat adrenal fatigue. I haven't ever been tested for adrenal fatigue, but that is the only remaining cause of TEBB—of the six causes that I know of—that hasn't been explored for me yet. Infection could still be playing a role since we've only tried two antibiotics. (I am reminded of one of my clients whose TEBB was eliminated with the third antibiotic her doctor tried...) I am actually kind of excited to try the Cortef. Obviously if it helps us get pregnant I will be overjoyed, but I am very curious to see if it improves my TEBB, and I'm glad to have a break from the antibiotics. My face, neck, back, and chest are finally starting to clear up after a horrible acne breakout (maybe the worst since high school…yuck) that started suspiciously close to the time when I finished the second of the two back-to-back antibiotics. My theory, supported by Dr. Google, is that after the antibiotic effects wore off (yay, clear skin for a couple weeks!), a crop of really bad bacteria took up residence. Even my sweet DH, who claims never to see my acne, commented to me yesterday that my skin looked so much better than recent weeks.

Back to the Cortef…since I wasn’t supposed to start taking it until AF stopped this cycle, we won't know its effect on the TEBB for another month at least. I am also interested to see if it affects me in other ways—good side effects, if you will—like increased energy, improved concentration, etc. I looked at the list of symptoms for adrenal fatigue, and if I have any of them, they are very mild. For example, if you asked me if I have fatigue, I would say no. To me, fatigue would mean dragging through the day or having trouble staying awake. But I would qualify that by saying I am pretty much always open to taking a nap if the opportunity presents itself (give me a pillow and a flat surface), and I would have no trouble falling asleep even if I didn't "feel" tired and even if I was getting plenty of sleep at night. If I fit it into my schedule, I could easily sleep 10 hours a night or more. I bet that sounds odd. I wonder if it could be like what happened with taking naltrexone. If you had asked me before taking it if my mood was low/poor/etc. (even excluding PMS days), I would have said no, but after taking high-dose naltrexone I could definitely notice my mood was improved and not just post-peak. I guess I never knew any different so I assumed my mood pre-naltrexone was normal. That's how it is with my energy level; I don't know any different so I assume this is normal. I can function well enough during the day. I just happen to like to sleep. ;) But I would be pretty excited if taking Cortef made my energy and alertness even better. We shall see what happens. The jury is still out because I haven’t been taking Cortef very long.

And speaking of the naltrexone, I am up to 50 mg per day. I was at 25 mg but that just wasn't helping my PMS enough. When AF arrived this cycle (while taking 50 mg), I was much more stable emotionally than usual even though I still had some CD1 blues, and I'm attributing it to the higher dose. I hope this lasts.

Of course new meds means more pills to pop each day. I was feeling kind of maxed out in the pill department until recently when I found a couple of my supplements are sold in gummy form. Now I get to eat candy every day.  ;)  I wish all medications were available as gummies. That would certainly make the life of an IFer undergoing treatment a little brighter.

I made the graph below for fun and out of curiosity. These are all the TTC-related medications and supplements I’ve taken since we started TTC in summer 2009. The spike in February 2011 is for my laparoscopy. The graph does include the gummy supplements I’ve been taking lately, but I don’t count those as a “burden” anymore. They almost should count as negative pills because they’re so fun to take.  :)   I should mention that I could decrease my pill count by four if I ordered my vitamin B6 online (500 mg capsules). It’s easier for me to buy it locally, but the store only sells 100 mg capsules, so I take five of them.

My daily pill counts (TTC-related)

DH wanted to see his pill count too, so I added it to the graph.  He's the red.  But I'm guessing you could have figured that out.  ;)


P.S. I have a list of my current meds on the right side bar if you were wondering.