Surgery follow up

My follow up phone call with Dr. E went well.  I don't need any more surgery.  Hooray!  She reviewed the path report with me and explained that she removed several of the black spots from different areas, and they were confirmed to be carbon deposits from my previous surgery (vaporization of endo).  Even though each spot is my body's immune response to a foreign body, she said they will not affect fertility.  (**big relief here**)  I did a bit of light googling later and read that in that situation there is minimal ongoing inflammation, so that put my mind at ease more.

I did have five confirmed spots of endo: 2 behind the bladder, 2 on my rectum, and on my right posterior broad ligament.  They were each small, so it's stage I.  Again, they were all new spots since last surgery.  There was one lesion on my left ovary that she wasn't sure about, but it turned out not to be endo because it only met part of the requirements for endo.  But it's gone, along with the others.  :)

I forgot to ask Dr. E what percentage of patients get new endo growth after a NaPro fellow surgery.  My case doesn't count as a "recurrence" of endo, so I don't fall under the NaPro fellow stats of 22% chance of recurrence after vaporization or 7% chance of recurrence after excision. I've actually never seen stats for patients like me who regrow endo in new spots...  I'll have to ask Dr. K what her experience has been.

I haven't done any cycle reviews with Dr. K since my November surgery, and I haven't asked PPVI for the results from DH's semen culture from December.  I plan to do that before this cycle ends in case she wants to change the antibiotic we would take at the beginning of next cycle.  My culture results from surgery indicate the antibiotic I had been taking is the correct one for the infection I (still) have, but we'll need to know what showed up on DH's culture in case it gives us more info. (Last time we did a semen culture it showed different results from mine.)

Surgery was post-peak last cycle, and we're avoiding this cycle so I can heal (doctor's orders). We'll be back to TTC next cycle.  Recovery continues to go well; I took my last ibuprofen three days ago. I can't fully bend forward at the waist, but I can squat to pick things up from the ground, so that's a welcome improvement.  :)

Surgery recap and recovery

This is rather long.  Read what interests you, and skip the rest.  I mostly wrote it out as a record for myself.

Day of Surgery

hospital socks

Friday morning (Nov. 21) I was supposed to be at the hospital at 5:30 a.m.  I showered with a special soap that morning (and the night before).  After we filled in the paperwork at check-in, I headed over to the chapel to spend a few minutes with Jesus in the tabernacle.  I love Catholic hospitals.  :)

When the nurse took me back, before putting on the hospital gown, I had to use large wipes on my entire body.  The wipes were supposed to leave a film on my skin that would help prevent infection during and after surgery.  I think she said it was protective up to 24 hours after surgery?  It was new since my previous surgery at this same hospital.  I also put on the fashionable hospital socks that have no heel and are the same on both sides so you can't put them on upside down.

In the past, my biggest worry the morning of surgery was the IV, but this time I didn't even blink when the nurse inserted it.  I guess years of blood draws and some awesome prayer warriors can help a girl get over her fear of IVs (and needles in general).

my view in bed all prepped for surgery

This time they put what I call "water wings" on my calves while I was still conscious. They're supposed to help prevent blood clots by sporadically inflating to squeeze my legs.  After I was all tucked in bed, the nurse turned on the warm air to inflate my gown and keep me comfortable (and to keep my body temperature up which improves recovery after surgery).

When the anesthesiologist came in, I mentioned that I had nausea and vomiting after both previous surgeries.  He said he read that in my file and would be giving me a patch to prevent that.  I was definitely looking forward to no vomiting.  :)  Later the nurse anesthetist came to give me the patch. She stuck it behind my ear and said I could keep it on for up to three days.  She warned me not to touch it, but if I did, I would have to immediately wash my hands.  I guess if you touch it and then rub your eyes, it will dilate your eyes and give you a headache.  She gave me a rubber glove to use to remove it at home.

Around 7:20 a.m. Dr. E arrived with a third year med student who was accompanying her for the day. It was the student's first day on her ob/gyn rotation, so she was just going to be observing, not assisting.  I gathered that Dr. E hadn't had a chance to explain much about her training or NaPro, so I decided to fill the med student in a bit.  Just a bit.  :)  I told her that many of Dr. E's patients travel long distances because she has done a special fellowship in surgical techniques for endo and that she's 1 of only 14 in the country (not including Dr. Hilgers himself) to have that kind of training.  I think I might have slightly embarrassed Dr. E, but I wanted the med student to know ahead of time that she was going to be observing a highly-trained surgeon.  The med student seemed intrigued.

Dr. E then prayed over me which I loved.  I noticed at the end of the prayer the med student made the sign of the cross when Dr. E did, so maybe she'll be even more interested in NaPro because she's Catholic...  Hopefully Dr. E was able to plant more seeds as she spent time with her...  :)

Dr. E promised to tape a rosary to my hand before surgery started.  She said she had a bunch that were blessed by Pope Francis.  My last surgery I had one that was blessed by Pope Benedict.

rosary blessed by Pope Francis

Just after 7:30 a.m. the nurses came back to wheel my bed to the OR.  I was awake long enough to see the inside of the OR briefly before the anesthesia kicked in.

My surgery lasted about an hour.  I don't know what time I woke up from anesthesia, but when I did I was in a large room with curtains around each bed and a rosary wrapped around my hand.  I wasn't nauseous at all.  :)  I asked the nurse standing next to my bed for water, but she said that would make me nauseous so she brought me apple juice instead in a cup with a straw.

Dr. E stopped by to explain what she found during surgery.  I tried really hard to concentrate on what she was saying because it was unlikely I would remember anything based on previous post-surgery talks with the surgeon.  I remember her saying that I had stage I (nearly stage II) endo and that perhaps Dr. K (at PPVI) would want to do the next surgery.  Somehow I was coherent enough to reply that my insurance didn't cover the hospital in Omaha.  She said she would at least consult Dr. K before doing my next surgery.  What is not clear in my memory is if she said it would be robotic "with the possibility of opening you up." (meaning a full laparotomy)  I really hope I am remembering that part completely wrong.  A laparotomy would be a six-week recovery versus the robotic laparoscopy's two-week recovery.  She also said that she could tell I had ovulated prior to surgery by looking at my ovary.  Surgery was on P+1.  She did cultures of my endometrium and cervix, but I won't have those results for a while.

Dr. E spoke with DH separately and gave him pictures of my insides.  As she explained them to him, she labeled some of them.  I had endo near where my rectum meets the colon, and that would be the tricky spot to remove.  I had another spot of endo near my cervix.  There is some scarring on one ovary, but I don't know if that's endo.  There was another questionable spot that might be endo or could be something else.  All of the endo is in new spots.  Why, oh why does my body regrow new endo so easily?  :(  It's been 21 months since my last surgery.

The nurse anesthetist stopped by briefly to ask if I was nauseous.  I said no.  She smiled and said she has a 100% nausea-free streak with the patch on her patients.  I'm glad to have kept her streak alive.  I ended up keeping the anti-nausea patch on for a day and a half.  I'm definitely asking for it next time.  :)

So there I am lying in bed sipping my apple juice and feeling pretty good.  The next thing I know the nurse says it's time to get me dressed.  I was really surprised (since I hadn't urinated yet...that was the ticket out of there in my first surgery) but I didn't mind.  I got some granny-style hospital underwear (so comfortable!) and two large pads.  Why two?  I don't know.  I didn't discover the second one until later in the day when it fell out in a rest stop restroom...  At that point I was thankful the first one was still in place.  :)

Shortly after getting dressed, the nurse moved me to a chair next to the bed.  DH came into my curtained room and got some last minute directions from the nurse.  Another nurse brought a wheelchair and wheeled me to the hospital entrance.  It was about 10:30 a.m.

We drove to a pharmacy near the hospital to pick up my two prescriptions for pain meds.  I learned that Dr. E doesn't call in pain meds, so we had to walk in with the prescription in hand (well, DH walked in) and wait until it was filled.  Thankfully it only took about 10 minutes, unlike my previous two post-surgery experiences where it took an hour or more.

I had a small pillow in the car to put between me and the seat belt to cushion bumps in the road.  I reclined the seat a bit because that was more comfortable than sitting straight up.  I ate a few snacks, which tasted so good after the previous day's clear liquid diet of chicken broth and apple juice.  :)

At home, DH made me chicken noodle soup, my comfort food of choice.  I set alarms in my phone to take the pain pills on a schedule (hydrocodone/acetaminophen aka "the good stuff" and ibuprofen) and then napped until dinner.

Day after surgery

Early the next morning, I awoke after a poor night of sleep thinking I'd spend the day watching movies and napping.  As DH was helping me out of bed, he stopped and sat on the side of the bed.  He was having terrible abdominal pain on his right side.  He never has pain like that.  After a few minutes it subsided.  He took a quick shower in case in came back, and it did.  I was worried about appendicitis.  He normally avoids going to the doctor, but he said he needed to go to the ER. I knew that meant it was bad.  If he didn't volunteer to go, I would have forced him in my I-can't-get-out-of-bed-by-myself state.  Don't mess with a girl who just had surgery.  ;)

I did spend my day watching movies and napping at home as I had expected...but also e-mailing back and forth with DH who was lying in a bed in the ER.  It turned out to be a kidney stone. Thank God it wasn't more serious.  He came home in very little pain.  He had no pain when he passed the stone.  A little tiny thing sure caused a big problem...

Rest of recovery

The next morning I felt decent enough to make a public appearance, so I went to Sunday Mass with DH.  I took both pain meds beforehand so I was happily drugged up.  I couldn't genuflect, but everything else was fine.  Afterward I was exhausted.  You don't realize how much up and down there is (sit, stand, sit, stand, etc.) until it's hard to stand up on your own.  Mass on Thanksgiving was better (no pain meds), but I still felt like I had competed in the Olympics afterward (i.e., was wiped out).

I took my pain meds on the prescribed schedule for the first four days, and then I started to wait and see how I was feeling before taking something.  On Wednesday, I only took one pain pill.  I took my last one on Friday, a week after surgery.  Since then, I have been using the heating pad for random pain flares, and it works well.

I learned a new post-surgery trick the hard way.  After surgery, I had no other choice than to sleep on my back.  I normally sleep on my stomach or my side.  By the third night after surgery, I could lie on my side a little.  One night while sleeping I rolled onto my stomach and woke up in the morning in a lot of pain.  Not fun.  To prevent it from happening the following night, I slept on my side and hugged a large pillow.  It kept me from rolling onto my stomach.  I still sleep with the extra pillow because I don't think I'm ready to sleep on my stomach.

Something else new I realized this time around is that a straw is a really useful thing to have, especially during the part of recovery where it's difficult to sit up when you're lying down.  If you have a bendy straw in your cup or water bottle, you don't have to sit up to drink.  It will come in handy more when I have my next surgery.

I experienced a new and unpleasant symptom during this recovery that I didn't have after my previous surgeries.  Involuntary, quick deep breaths started about four days after my lap.  At that point, taking a deep breath was not really enjoyable because it increased the pressure on my incisions, but it was possible if I did it slowly.  I know most breathing is involuntary, but this was strange because they were little gasps for air when I thought I was breathing just fine.  They would happen quickly like hiccups and last a second or less, but they didn't happen as often as hiccups. Oh, did they hurt.  :(  Dr. Google told me it was common after abdominal surgeries.  They lasted 4 or 5 days, but became gradually less painful because my abdomen could tolerate the pressure better.

About the same time the weird hiccup breaths began, I started sneezing quite a bit, which hurt more than a deep breath.  I should have read the discharge directions that said I should hug a pillow tightly against my stomach whenever I had to cough or sneeze to minimize the pain.  Next time I'll have a pillow ready.  :)

Even though I had been told you can expect to go back to work within a few days of a lap, I was happy that I took the week off through Thanksgiving.  Being able to nap whenever I wanted was really nice.

I ended up spotting for eight days after surgery.  My urge to urinate disappeared for two or three days after surgery, so I had to remember to go to the bathroom those days.  I was very happy when it returned.  I guess you don't appreciate things so much until they're gone.  ;)

My incisions still ache a bit on and off.  Sneezing is still a bit painful.  I can bend forward most of the way without pain and pick up things from the floor.  I probably could drive (the prospect of slamming on the brake doesn't scare me like it did last week), but I've preferred not to drive since DH can.  I've been really grateful that this surgery's recovery is so much easier and quicker than the robotic lap.

I haven't heard back from Dr. E yet about scheduling my next surgery.  I assume she's going to consult with Dr. K first to better plan the surgery.  It will be January at the earliest.  I have a post-op appointment in two weeks.  I don't know if it will be in person or virtual (phone or Skype).

Here's a little summary of what I've learned:

What to bring to the hospital when you have surgery

• yoga pants or any clothing that isn't snug at the waist
• underwear that sits either really high (granny-style) or really low
• pads
• all prescription medications in their original containers
• small pillow to put between you and the seatbelt
• large pillow to make napping in the car more comfortable
• plastic bags or bucket for car in case of vomiting (if you don't get the anti-nausea meds)
• food for the ride home

Nice things to have at home during recovery

• straw for drinking when lying down
• large pillow to hug during sneezing/coughing and sleeping (to prevent rolling onto stomach)
• heating pad

Surgery's done

Dr. E found stage I endo in a few spots, and at least one of them is in a tricky place to reach, so I'll need another bigger surgery with the robot to remove it.  There were no new fibroids.  She also did endometrial cultures.  We're heading home shortly, and I'm looking forward to a nice long nap.  I'm offering up the pain for all of you.

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?  ;)

Good news, sort of

I don't have a brain tumor!  Yay!!!  Thank you, God.  I am so relieved.  :)

Since I hadn't heard anything from PPVI, I sent an e-mail to Dr. K's nurses today asking if they had received the results from my MRI last Monday.  I also mentioned that I was "just curious if I have brain tumor."  I normally hate to bother them between cycle reviews, but I figured this was reasonable.  :)  I know they are super busy with lots of patients, but I didn't want to slip through the cracks and end up waiting until my next cycle review for the results and possibly starting a new medicine.

They either had the results ready or they were planning to call me anyway because just over an hour after I sent the e-mail I got a call from a PPVI nurse.  She said there was no evidence of a microadenoma (tumor), but they did find a "diffusely enlarged pituitary."  Dr. K didn't know what the significance of that was, so she contacted a neurosurgeon colleague.  The neurosurgeon said I should go see an endocrinologist in case the pituitary is causing other hormone problems.

Dr. K is starting me on the medication bromocriptine to try to lower my prolactin.  She'll recheck the level in a month to see how the medicine is working.  I'm hoping the side effects aren't too bad.  It's not known as the nicest medicine to be taking.  Common side effects are nausea, vomiting, dizziness, and headaches.

I called to make an appointment with an endocrinologist in the same building where I had the MRI.  I figured it would be easier because the doctor would already have access to the results.  The receptionist said Dr. K needs to contact them directly asking for a consult for me.  I protested that the MRI was the reason for the consult, and they had that already.  Didn't work.  :(  Can't blame a girl for trying...  So once the nurses fax over a request along with my prolactin lab value, I can make an appointment.  I've never been to an endocrinologist so I'm curious to see how this appointment goes.  I'm not looking forward to explaining that I'm taking T3 (thyroid) and hydrocortisone (steriod).

And DH's response to the above news?  "So you have a malfunctioning brain, huh?"  :)

And then he said, "Can we get a picture from your MRI?  I want to put it up as my background on the computer."

I, of course, consulted Dr. Google about the diffusely enlarged pituitary.  Hopefully it's nothing to worry about, but I did find some case reports where the patients were treated surgically.  I am not a doctor.  Let me repeat:  I am not a doctor.  No more internet searching for me until after meeting with the endocrinologist.  :)

I want to say thank you again for all your prayers!  They are much appreciated.  :)

The plot thickens

Hopefully in the next few days I will be able to have an MRI of my head. They're looking for a brain tumor.

I'm not joking.

It's not as bad as it sounds though. If they find one, the brain tumor should be benign. But still, no one wants a brain tumor.

How did this happen, you ask? Well, Dr. K's nurse called me today. I thought it was strange to see the PPVI number appear on my phone because they rarely call for a cycle review; they prefer e-mail. For my P+7 blood draw, they were going to measure prolactin in addition to the usual progesterone and estradiol. The nurse asked me if I had been fasting for 12 hours prior to the blood draw, which was required for the prolactin. Yes, I was fasting. She asked if I had avoided the other things I was asked to avoid (sex, exercise, and nipple stimulation). Yes, I did avoid those things.

Then she took a deep breath and said my prolactin was elevated. I asked what the value was. She said it was 62. (whoa...my jaw was on the floor...that's not normal...normal range ends around 25) She added that when Dr. K saw that value, she did not believe it. So they double checked that it was my blood and then she had the lab run it again. The second time it was 59.2. That meant it truly was elevated.

The nurse said she'd have to relay my answers to Dr. K and find out what the plan was. She promised to call back tomorrow. I had an e-mail in my inbox within half an hour. I was expecting it to tell me that they had called in a prescription to my pharmacy for a medication to decrease prolactin. There was no new medication mentioned. Instead, there was an attached order to get an MRI of my head. I guess I knew it was a possibility (I didn't know how high the prolactin level had to be before a doctor orders an MRI), but I didn't expect it so soon. When prolactin is elevated, they do an MRI to check if there's a prolactinoma, a benign tumor that produces the extra prolactin.

I was wondering how much of an effect a prolactin level around 60 would have on fertility. Cue Dr. Google. One site I found said that levels in the range of 25-50 "may" decrease overall fertility, and levels in the range of 50-100 "significantly" decrease fertility and may cause irregular cycles. Significantly decreased fertility...wow. In reading that, I actually felt a little optimistic that if we could reduce my prolactin level with medication, we might have a chance at conceiving...if—and that's a big if—the antibiotic can do it's job for a while longer (which is questionable, at best) and if there aren't other things we have yet to discover that need fixing.  Since prolactin can inhibit ovulation, who knows if I have even been ovulating?  My ultrasound series that showed I ovulated was two years ago.  If I'm not ovulating, my body is sure doing a good job at pretending that I do—my mucus, cycle, and hormones are all normal looking.

After I read the e-mail with the MRI order and explained it to DH, this conversation happened:

Me: Whom did you marry?
DH: A walking disaster. But I still love you.

(you need a little humor in this kind of situation) :)

I'm trying not to be nervous, but I'm nervous.  I'll call in the morning to make the appointment for the MRI.

. . .

Friday update:  No MRI for at least a week.  The next openings in the schedule are next Friday.  Plus my insurance has to preauthorize it first.  Now I have to try to not think about it for a week...  :P

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.

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.

Find a NaPro surgeon

Since the FertilityCare website does not yet have a separate list of the ob/gyn graduates of the year-long NaPro surgery fellowship with Dr. Hilgers, I have been keeping track of them for my clients who want to pursue surgery.  I created a map with their locations.



View NaPro surgeons in a larger map

If you click on each marker, I listed the name(s) of the surgeons, their current address, and website.  For some of the websites, you'll have to search for the physician by name.

Twelve ob/gyns have completed the fellowship.  One worked with Dr. H for a year before there was a fellowship.  Three more will be trained in the next year, including Dr. H's own son!

Note #1:  I added another ob/gyn surgeon to the map (the yellow marker).  He did not complete the year-long fellowship.  However, he did do a rotation with Dr. H and has co-authored a paper with him, so he is very aware of Dr. H's techniques.  He completed a fellowship at the Center for Endometriosis Care in Atlanta, so his training is excellent.  He is a medical consultant (trained in medical NaPro).  I would recommend him as highly as any of the other surgeons listed.  He gave a presentation at the 2012 FertilityCare annual meeting about his surgical techniques and research.

Note #2:  Dr. Stegman had been trained in NaPro surgical techniques and practiced in Camp Hill, PA.  Before he retired, Dr. Stegman trained another surgeon (the red marker) to take over for him.  That surgeon now practices in Louisiana.

This map does not include the many medical consultants who were trained in medical NaPro, a six-month program involving two separate weeks in Omaha (usually).

I will try to keep this map up to date.

Treating endo pain without surgery and other NaPro updates

As I get ready to head to this year's Creighton Model and NaProTechnology conference, I was looking through my notes from last year's meeting.  I learned a lot of fascinating information and wanted to share it here before my brain is filled up with all kinds of new stuff from this year. 

1.  There is a possibility that charting CrMS and getting treatment from NaPro can be helpful in early detection of breast cancer.  This is a huge project for the future to understand this better, but Dr. H has done some preliminary work.  He found that infertile women with low progesterone were 5.4 times more likely to have breast cancer than infertile women whose infertility was due to non-hormonal causes.  In his study, breast cancer patients had statistically significant lower progesterone levels starting on P+5.  Their estradiol levels were normal.  Breast cancer patients also had statistically significant lower mucus cycle scores and higher variability in the length of their post-peak phase (about 5 days variation vs. 2 days variation for non-breast cancer patients).  A mucus cycle score is a way to numerically rate the quality of mucus in a given cycle; a higher score is better.

2.  Only 9% of cycles have ovulation occur on day 14.  Ovulation occurs slightly more often on day 15 or day 17 (11% of cycles).

3.  If you or anyone you know has been on progesterone support during pregnancy in an attempt to prevent miscarriage, you might know that most non-NaPro physicians think it's unnecessary, silly, etc., especially after the first trimester when the placenta is supposed to take over production.  Dr. H swears by it though and has a standardized progesterone curve that he uses to determine how good or bad a pregnant woman's progesterone levels are given how many weeks gestation she is, which guides the dosing of progesterone.  Previously there had been no study showing that progesterone was beneficial, especially after the first trimester.  Dr. H didn't think it was ethical to do such a study because half of the pregnant women would have received a placebo (no progesterone), and he didn't want to risk them losing their babies in order to publish a study to satisfy the skeptics demanding, "We want to see the evidence."  (evidence is good, of course, but at what cost?)  Now there is really good news: This study--a double-blind, randomized controlled trial (the best type of study)--is underway!   Well, it was underway as of last summer.  How is this possible, you ask?  What about the poor women at risk for miscarriage who get the placebo?

This is probably the only situation that I can think of which made it ethical to do the study:  A NaPro physician (Dr. V) in another country was following Dr. H's progesterone protocols on his pregnant patients.  Dr. V's boss found out and demanded that he show the boss the study supporting this practice or else stop prescribing progesterone to all pregnant women.  Dr. V was in a bind.  He also believed the progesterone was doing some good, and he could not bear the thought of withholding progesterone from his patients, especially the ones with a history of miscarriage.  So he said to his boss, "How about I conduct the study to come up with the evidence that progesterone is beneficial?"  His boss agreed.  Dr. V figured that this way half of his patients would get progesterone, which was much better than none of his patients.  He later got approval to do the study.

This is huge.  Huge.  I hope they'll give us an update at this year's conference how the study is going.

4.  Random fact of the day:  Endometriosis has been found in men.  In women, it has been found outside the pelvis--in the brain, eye, and lung--so the theory that endo is caused by backward flow of menstrual blood through the fallopian tubes doesn't explain everything.

5.  An audience member asked one of the physician presenters, "What anti-inflammatory diet should we recommend?"  The presenter said, "I would defer to the bloggers on the answer."  Love it!!  Probably 98% of the room had no clue what he was talking about, but I had a giant grin on my face.  How would this physician know about the IF blogs?  He's married to a blogger.  :)  The audience member waited for him to elaborate.  He then said the diet would include:  no gluten, dairy, sugar, caffeine, alcohol, or red meat.  It would also include supplemental omega 3.  He said his wife was on a "boatload of omega 3" when she conceived.  The audience member asked him to define "a boatload."  He said at least 2000 mg/day.  Another physician, an expert in omega 3, said that the EPA content of the fish oil supplement was the key ingredient and should be at least 700 mg daily.  They also mentioned that it's important to try to increase the ratio of omega 3 to omega 6 (so decrease omega 6 while increasing omega 3).  Red meat has omega 6 and is generally pro-inflammatory.  Omega 3 (in fish oil and flax seed) is generally anti-inflammatory.

6.  Two doctors had different answers for how to control endo pain without surgery.

The first said this combination of four items works for his patients:

• 5000 IU vitamin D daily
• at least 2000 mg of fish oil daily (EPA content at least 700 mg)
• low dose naltrexone
• diet with no gluten, dairy, or sugar

The second gave a long list of possible things to try, including:

• 100 mg of vitamin B1 daily
• 400 mg of magnesium twice a day beginning one week before CD1 and ending one week after the period
• 600-800 mg of Motrin every 6 hours beginning the day before CD1 and continuing through the painful days of the period (usually 2-3 days); the Motrin should be taken with food
• 60-100 mg of pycnogenol (this may also heal the endo)
• eliminate meat from the diet (works for some)

7.  Dr. H has often said that one of his big regrets is that he didn't insist that women chart during pregnancy from the beginning of his career.  He thinks there is so much more we could know about the signs of possible pre-term labor on the chart if he had many charts to study.  What he does know is that observing 2W (wet) in pregnancy usually means a cervical or vaginal infection.  Spotting in pregnancy also means infection most of the time.

8.  Sleep deprivation causes the same symptoms (low temperature, etc.) as thyroid system dysfunction.  Getting enough sleep is important!

9.  A good endometriosis surgeon needs to

• find all the endo
• remove all the endo
• prevent adhesions

Because a surgeon who doesn't do endometriosis removal regularly can actually do more harm than good (if his techniques aren't superior), it's best to go with a surgeon who specializes in endo.  I have heard NaPro surgeons (those trained by Dr. H for a year) say that they have done surgery on patients who had a previous endo surgery with a non-specialist and that the surgery could have been a lot shorter if the first non-specialist surgeon hadn't made things worse (e.g. adhesions everywhere caused by the first surgery).

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!

SA drama

Click on the image for the novena text.

The lab didn't do the semen culture on DH's sample.  We have to redo the seminal fluid collection.  :(  :(  :(

Here's the story...

Before Dr. K would decide on what treatment we might try next to combat my TEBB, she wanted to have a semen culture done to see if that would identify any other unwanted bugs that may be hanging around.  Her nurse mailed us the order (written on a prescription pad) along with the collection kit (unlubricated, perforated condom and a sterile container).  If ever you need a kit, you can order one from the PPVI Institute without a doctor's order for $20. 

I remember how we did the semen analysis (SA) two years ago.  Our city isn't that large, and there is only one clinic in town that does SAs.  That clinic requires the man to make an appointment when he will drop off his sample and spend five minutes with the nurse giving his medical history.  I called the clinic to make the appointment.  The receptionist said they would not accept the paper order I was holding in my hand; she said the clinic had a specific order form that Dr. K would have to fill out and fax to them directly.  I hoped that this extra step would ensure that the semen culture would be done because I was a bit worried they would miss that request and just perform the regular SA with counts, morphology, etc.  After some back and forth with PPVI, they confirmed that they had faxed the order to the clinic here.

I called the clinic again to make the appointment.  Surprisingly the receptionist asked me if DH was going to collect his specimen in the clinic or if he would be bringing it in.  I guess we're not the only ones to do the collection at home, although I'm not sure how many people actually use a kit so it can be done through a "normal" act of intercourse.  (Using a perforated condom is anything but normal...)  The receptionist said we were to abstain for at least two days prior to collection, but no more that four days.  (PPVI had told us to abstain for at least four days.  I was going to follow PPVI's recommendation over the local clinic's recommendation.)  The receptionist also reminded me that the specimen should arrive at the clinic within about 30 minutes and should be kept at body temperature during transportation.  The clinic is five minutes away, so we figured this wouldn't be a problem.

We were ten minutes late for the appointment.  The collection itself was awful.  I was extremely relieved that we had a specimen to take to the clinic.  We brought the paper order along that PPVI had originally sent us.  I told DH to show it to the nurse and remind her that we needed a culture done.  He did that.  The nurse said it would be no problem and kept the paper order just in case.

We did the collection post-peak, so I decided to wait until our next cycle review to ask PPVI for the results.  (Actually I did call the local clinic to see if we could get the results over the phone like I did two years ago, but the nurse said we had to get the results from Dr. K.  Can't blame a girl for trying.)  I suppose a little waiting never hurt anyone.  ;)

When I received the cycle review e-mail, the nurse said our clinic had not done the culture.  She didn't have any results to share with me--not even the sperm count, etc.  She said Dr. K had spoken with the medical director at the local clinic to find out 1) why they never told Dr. K they couldn't do a culture since they had her request in their hands (on THEIR form!) far in advance and 2) why they never told DH they couldn't do a culture.  The director told Dr. K that their clinic doesn't do semen cultures and that we (meaning DH or me) would have had to have coordinated with the local hospital lab (totally unaffiliated with this clinic) to arrange for the culture to have been done there.  How were we to know this?  Dr. K was really frustrated.  DH and I are really frustrated.

I called the medical director to find out what kind of arrangements would have to be made and whom I should call at the hospital.  After a few days of messages left on various voicemails and then some phone tag, the medical director called me back.  It was bright and early in the morning when I wasn't exactly awake and fully lucid.  (Mornings are not my best time.)  He said that in his twenty years as a doctor, he had never heard of anyone ordering a semen culture.  He said there's no link between infertility and infection, and a culture wouldn't tell you anything useful.  He said he was under the impression that he had talked Dr. K out of ordering a culture.  No, Dr. IVF, you didn't talk her out of it!  She, unlike you, actually wants to fix the underlying problem(s) in our infertility.  And if you want to be intellectually lazy and not bother to investigate the newest discoveries in the treatment of infertility, that's your business.  Thankfully not all doctors think like you.  (I did acknowledge to him that the connection between infection/endometritis and infertility is not widely known among mainstream doctors, and he agreed.)  I told him that Dr. K had helped couples conceive by treating their infections.  I almost told him to look up Dr. Toth online so he could learn about how infection is related to IF.  But I realized that I still needed his help if I wanted to have this culture done, so I bit my tongue and limited my comments so as not to antagonize him.  I explained that I had symptoms of an on-going infection, so the culture would hopefully help identify the bacteria involved because the endometrial culture I had done was only partially helpful. 

He then reluctantly shared the information he had.  He had spoken with two different doctors from the hospital's microbiology lab.  They have never done a semen culture.  I really had no idea that this was an unusual test to order...  They are unwilling to do a semen culture because they don't have a protocol to do one (and there were two other reasons that I don't remember because I wasn't really awake).  He suggested that I try calling the independent lab in town to see if they could do it.  I'm wasn't holding my breath, because if the hospital can't or won't figure out how to do it, the independent lab sounded even less promising.  And yeah, after calling them, they won't do it either.  :P

The nearest larger city where there might be a chance of getting the culture done is over an hour away.  So we'd have to stay overnight in a hotel to make that happen.  And that's if I found a lab who could accommodate this request.  The other option would be to try to find a lab in the even-larger city where my parents live and do the collection while visiting them.  It's not ideal, obviously, but it seemed more feasible than the hotel option.

I called the big hospital's lab about twenty minutes from my parents' house that I've used for blood draws in the past.  The person who answered the phone was quite knowledgeable and was able to confirm rather quickly that their lab could do the culture.  I even asked her how they would do it--to double check that she understood what I was asking for.  She said they'd treat it like any other "reproductive culture," let it grow on a plate for two days, and identify all bacteria that grew (if any).  What was even better was that we could drop off the sample at any time 24/7.  No appointment!!!  Actually, DH doesn't even have to come along.  I can drop off the sample myself (which will be much less conspicuous...no need to explain to my parents where I'm going.)  ;)  PPVI sent us another kit, so I hope everything works out this time.

After asking again, I did get the results from the first SA that was run locally.  All DH's numbers were normal.  They were actually better than the numbers from two years ago (which were also normal.)  At least one of us has a correctly-functioning reproductive system.  Although I told him he probably needs to have super sperm to overcome whatever is wrong on my end, hostile uterus included...  ;)

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.

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.)

Phlebotomist's dream, ultrasonographer's nightmare

Much has happened since my last post.

1.  I had my first blogger meet-up!  It was lovely.  The group included Rebecca (The Road Home), Ania (The 411 on the 418s), E (God's Plan is my Joy), and TCIE.  It was as if I was chatting with old friends, even though I had never met any of them before (except TCIE).  It was so nice to talk to ladies who completely understand what it's like to be infertile and Catholic.  And since Rebecca had just had her surgery, we of course had to swap surgery and doctor stories.  I wish they all lived closer so I could hang out with them more often.  :)

2.  I earned this:

I had my ultrasound (US) series.  TCIE was so kind to let me stay at her house the entire week and a half. Hers is the only clinic besides the PPVI Institute itself where Dr. K would allow the series to be done.  TCIE explained to me in detail what a NaPro US entails and why it has to be done by a NaPro-trained ultrasonographer.  She told me they have tried to work with other ultrasound centers that are more conveniently located for out-of-town patients, but no one to date has been able to do a satisfactory job.  Her clinic has a detailed worksheet that they've sent along with patients who go to outside centers, so you would think the ultrasonographer would be able to handle checking boxes and filling in blanks if it's all spelled out for them.  Apparently that is not the case.  Some things on the checklist are not taught in ultrasound school, and others are simply not part of the template report that many centers use, so it's too much work to make extra observations or measurements.  TCIE said even when the patient holds a copy of the worksheet and asks for certain things while she is being wanded, the ultrasonographer still doesn't always cooperate.  I understand now why Dr. K insisted I go to a NaPro ultrasonographer, and I am thankful I had the opportunity to do so.

Here's how my US series went.  TCIE described it as an "ultrasonographer's nightmare."  It doesn't seem THAT bad looking back...

CD6:  I had my baseline US.  It was the only one that included both a pelvic US (on the belly) and a vaginal US (internal).  (The rest were vaginal only.)  I completely forgot that I was supposed to have a full bladder for the pelvic US, but luckily I had drunk enough water that day that my bladder was full enough to proceed.  A follicle on my left ovary was identified as the one that would likely progress toward ovulation.  There was a shadowy area of my left ovary that looked suspiciously like an endometrioma (endometriosis on the ovary).  I was told it doesn't necessarily interfere with pregnancy since they see endometriomas in pregnant patients sometimes...  [Note: it turned out not be an endometrioma.]

CD9:  I started to observe fertile mucus just before the US.  The US showed that my cervix was dilated a tiny bit, and my endometrium was thicker than it was on CD6.  These were good signs.  (The endometrium is supposed to grow in thickness as you get closer to ovulation.)  The follicle on the left ovary didn't grow at all since CD6.

CD11:  This was the third day of good mucus.  The US showed my cervix was dilated more and my endometrium was thicker than CD9.  Progress!  However, my follicle on the left ovary still hadn't grown at all.  (Nothing was happening on the right either.)  This was not consistent with my mucus, endometrium, and cervix status.  At this point it was possible that 1) the follicle could have a quick growth spurt right before ovulation or 2) the follicle would be too small when it ruptured at ovulation.  Still it was puzzling that I was having good mucus with zero follicle growth.

CD13:  This was the fifth day of good mucus.  I don't usually have more than five days in my mucus cycle, so I expected that the follicle would have grown by now.  The US showed my endometrium was thicker than CD11, and my cervix was still dilated.  Unfortunately, that silly follicle still did not grow one bit.  This really didn't make any sense.  Why was I having a normal mucus cycle, normal endometrium growth, normal cervix dilation, and zero follicle growth?  Neither TCIE nor the doctor could explain it.  When I spoke to DH on the phone, he joked that Dr. Hilgers should use me as a case report in his next book or presentation.  I hoped someone would be able to figure out what was going on.  I didn't particularly want to be a case report...I just wanted my ovaries to work!  A few hours after the US, I had 10KL that stretched three inches.  (Yes, I just wrote how much my mucus stretched.  I have no shame.)  :)  I also had very obvious left-sided abdominal pain (mittelschmerz), which I have observed occasionally in past cycles.  I mentioned this to TCIE in the evening.

CD14:  TCIE told the doctor about my mittelschmerz and fabulous mucus from CD13.  She called me and said that the doctor wanted to run some labs (estradiol, progesterone, FSH, LH) to see if that would give us a clue of what was going on.  I drove to the clinic to have my blood drawn.  The woman who drew my blood took one look at my arms and complimented me on my veins.  (She had her pick of four easy-to-access veins.)  Just about every phlebotomist who draws my blood comments that I have good veins.  I wish I could take credit for them.  hahaha  At least it made one person's job easier.

CD15:  It was Peak+1.  I had a six-day mucus cycle, which is great.  At least my cervix was on its best behavior this cycle. :)  I wish I could say that about some other organs...namely my colon.  Yes, my colon.  You'll see why in a minute.  The US showed my cervix was closing up, and the follicle was as dormant as ever.  The blood work from CD14 was perfectly normal for someone who had just ovulated.  The doctor was completely stumped.  TCIE continued the US and guess what she found on the left ovary?  A corpus luteum!  (that's what the follicle becomes after ovulation) That meant I ovulated!!  But the follicle we'd been watching since CD6 on the left ovary was still there.  The corpus luteum was not near that follicle; it was in a separate location but still on the left side.  What did this mean?  I have a dumbbell-shaped left ovary.  The corpus luteum was on the other half of the ovary.  We had never seen this half of the ovary before this US.  Apparently the half of the left ovary with the dormant follicle had very nice, clear borders so there was no reason to suspect that my ovary was dumbbell-shaped. So you might be wondering why the other half of my ovary didn't show up on any other US...that would be thanks to my very active, redundant colon.  My colon has extra loops to it (a normal variant which I knew about before the series), and the loops covered up the half of my dumbbell ovary containing the follicle that eventually ruptured.  For whatever reason, my colon decided to get out of the way on CD15 so we could see the corpus luteum.  Silly colon.  Unfortunately, we don't know how big the follicle got before it ruptured.  Follicle size is important to know.  (If the follicle is too small, it's not a good ovulation.)  The corpus luteum looked "fresh" which meant I likely ovulated on CD14, which was consistent with the blood work.  How's that for a textbook cycle?!?  Ovulating on CD14 and Peak Day!!  ;)

On the bright side, measuring follicles is something any ultrasonongrapher can do, so if Dr. K decides that she wants to know how big my follicle gets before ovulation, I could have that done locally.

3.  DH was able to visit for a short time while I was having the US series done.  We spent a whole day in New York City, which was a lot of fun even though there was snow and slush on the ground.  It was his first time there.  The timing of his visit was okay but not great in relation to ovulation.  I don't think I can completely blame our not getting pregnant this cycle on the timing though (as much as I want to!).  There's obviously something still wrong, and I wish we could figure out what it is.  I still have lots of TEBB, so that's one thing to focus on yet.  I am really curious about where Dr. K will want to go from here.  I'll find out in a few days when I receive her feedback on my cycle review.

4. While I was staying with TCIE I visited these beautiful shrines, each with first class relics of the saint.  I offered prayers for bloggers still waiting at each one.

National Shrine of St. Rita of Cascia in Philadelphia

St. Rita is a patron saint for infertility and hopeless cases.  Her parents prayed for many years to have a child before St. Rita was born.

Shrine of St. Anne in New York City

St. Anne went through a period of infertility before becoming the mother of the Blessed Virgin Mary.  She is a patron saint for those facing infertility.

Distractions from IF

What a month and a half it has been.  It all started with an ER visit due to the worst pain I’ve felt in my life.  Several doctor visits, tests, procedures, and some prescription medication followed.  I have some lovely new pictures of my insides to add to my collection from my laparoscopy.  Everything turned out to be normal except a small hernia, which the doctor shrugged off and said we don’t have to do anything about.  The hernia doesn’t explain the pain I had, so some of the procedures may be repeated at a future date if the pain ever returns.  So far, that pain was just a one-day occurrence.

What compounded things a bit was that my body did not react kindly to the cocktail of medications I was taking.  Shortly after starting the above-mentioned prescription for a problem the ER doctor assumed I had, I started the antibiotic Flagyl to possibly combat my TEBB.  Meanwhile, I had been slowly increasing my naltrexone dose under Dr. K’s direction to reach the usual dose they prescribe for PMS.  Managing to take all the pills at the right times was the easy part (surprisingly).  One medication was to be taken twice a day with a meal, another was not to be taken within an hour of eating (twice a day), and the third taken four times a day.  (This excluded my T3, which is taken every 12 hours on an empty stomach, and the probiotic, which was not to be taken within 2 hours of the antibiotic, but prior to eating.)  The hard part was dealing with the nausea and vomiting that resulted.  It became pretty predictable at night.  Naltrexone anytime after 6 PM plus either of the two new meds within hours of each other resulted in my GI system declaring war.  When it got bad enough that I couldn’t think straight, I would be reduced to tears.  I admit I’m pretty weak when it comes to that... No amount of eating after dinner would prevent or lessen the nausea (but it would give me heartburn so I slept on the couch in a sitting position several nights).  Sometimes it would return after I had fallen asleep, and I’d go sit on the bathroom floor in the middle of the night until my stomach decided it was empty enough.  If my experience is similar to what happens during pregnancy, I have a new profound respect of what women go through.  I even tried to imagine that I was pregnant (I wasn’t, of course) to try to make dealing it better, but that didn’t help. 

I spoke with Dr. K’s nurse several times.  She said my side effects were really unusual for naltrexone; most women have no side effects and actually feel great.  She thought that my hernia was further exacerbating the medication interactions.  (She also informed me that it would cause extra nausea and heartburn during any future pregnancy on top of what is normal for pregnancy.)  She gave me suggestions on how to try to reduce the side effects, including lowering the naltrexone, which helped sometimes.  I ended up just sticking it out since the antibiotic was almost gone, and I was tapering off of the other prescribed medication from the ER visit (which was deemed unnecessary after all the tests).  Just a few days ago, when I was down to only naltrexone and T3, all my side effects disappeared.   In fact, I felt great.  Fabulous even.  It kind of feels like the small high you get after exercising.  Or like the time right around ovulation where you feel extra motivated to get things done.  So this is how naltrexone is supposed to work.  I love my naltrexone now.  :)  I’m really looking forward to post-peak this cycle to see if my PMS is gone.  And I’m almost to the point where I can take non-compounded naltrexone just once a day (easier than four times a day and cheaper hopefully).  I’m at 32 mg (compounded) per day now.  The end goal is 50 mg (non-compounded) per day.  Things are looking up!  :)

So after DH and I took the Flagyl simultaneously, there has been no change in my TEBB.  Bummer. I wonder if they’ll try a different antibiotic next.  Maybe Biaxin?  I know that worked for one of my clients to get rid of her TEBB.

This whole series of events took my mind completely off of IF (and blogging and even reading blogs) for quite a while.  I missed everyone and have some catching up to do!

We’re thinking seriously about doing the ultrasound series to monitor ovulation in January.  PPVI said it would be best if DH could come along so we could TTC, but right now we’re just planning to have me go alone.  It may be possible for DH to come for a couple days, but we won’t know that until the last minute because of his work schedule.  I am looking forward to learning if my ovaries are doing their job!