I Need the 411 on TEBB

Since my surgery, my cycles end with 2 days of brown bleeding, followed by another two days of black, spotted discharge. I would describe it almost like a scab that's flaking off inside off me. (It's great that there's no such thing as TMI in the infertile world.)

I've read enough bloggers who are using NaPro physicians to know that this could signal something VERY bad that could require 10+ days of intravenous antibiotics. But I also know that such regimens often don't work. 

At this point, I'm pretty much done with TTC. In a few weeks, we leave for our orientation weekend with our adoption agency. My mind is occupied by the homestudy and adoption profile. Once we make the payment to the agency, it really is best if I do not get pregnant. (Not that I can be bothered to avoid pregnancy.) We didn't even try this month because during my fertile time, we were out of town for my sister's wedding, sleeping in my old bedroom with ten other people in the house.

Still, I'm curious about this TEBB:

-Is there any problem with doing nothing? If I do have an infection, is it fine to just let my uterus be infected?

-Why would this have suddenly popped up after my surgery?

-Is there any chance it could be anything other than an infection? What?

-Did you have any other evidence of infection besides the TEBB? (e.g. foul-smelling discharge, etc, abdominal tenderness?)

-Did antibiotics clear up your TEBB? Have you conceived in the time since?

-Are there any non-NaPro physicians (besides Dr. Toth) who buy that TEBB is the result of infection?

-Should I go to my pelvic pain specialist about this? Or would he just laugh at me?

Any and all opinions, experience, anecdotes, and data are most welcome!

Life post Surgery

Having the adenomyoma removed was the best decision I've ever made.

Pain: I am free from the heavy and painful periods I've had ever since I was a teenager! No more do I spend a day curled in bed vomiting. I do have some cramps and fatigue, but I usually take Aleve and get on with my day. I do have an upset stomach on CD1, but usually avoiding heavy or greasy food takes care of this.

Bleeding:  Instead of five days of heavy bleeding and two days of light bleeding, I now have three days of light bleeding. I thought there was something wrong with me, until acupuncturist informed me that the regular tampons are named thus because that's what most people use.

Energy: Lighter periods mean that I'm no longer in a constant battle with iron-deficiency. My energy is far, far better. Enough to get me through a ten hour work day, plus a work out, plus centering prayer, plus cooking dinner some evenings, cleaning, and practicing. For the first time in years, I spring out of bed easily instead of dragging myself out of bed after oversleeping my alarm by an hour. Exercising is no longer a chore; I go to the gym because I look forward to stretching and moving my body.

PMS: Before the surgery, I used to have a full week of PMS: fatigue, tender breasts and belly, irritability, despair. Now, I have one or two days of fatigue and a day of sadness.

Other benefits that may or may not be surgery related: I no longer have diarrhea most mornings. My sex drive is back (though that may not be surgery related).

Lingering problems: I still have my "spot" of pain on my lower right side. Dr. S says that he may have missed some of the adenomyoma or that I could have some ovarian issue causing pain (though my ovaries looked normal before the surgery--hypofunctioning, but normal). He said that as long as it's not interfering with my quality of life, I should leave it alone. I should give him a call if my periods get heavier or more painful.

Really, my only regret is that I didn't do this much sooner. I was making the best decisions with the information I had, but I do feel sad that diagnosis and misinformation took so many years of my life.

Will Dr. F take me back?

Dr. F, my pelvic pain specialist, is my very favorite doctor. He's so smart, open-minded, thinks outside the box. We have all these interesting conversations together. If he weren't my doctor, I would want him to be my friend. And I don't even like doctors! But I've been feeling somewhat sheepish about telling him that I went off and had surgery with some other surgeon. Would he be hurt? Betrayed? Would he ask me awkward questions about why I liked Dr. S better than him?

Not wanting to spill the beans yet, I asked Dr. S if it would be okay to ask my primary care physician to remove my sutures rather than Dr. F. He said no problem, and my appointment with my PCP was today.

The only problem was that she didn't seem to know what she was doing. She couldn't tell the difference between a suture and a scab. She looked back and forth being my operative report and my pelvis before giving up and calling Dr. F for help. Dr. F!

Apparently, Dr. F is still speaking to me. He's willing to take the stitches out and do my post-op. My appointment is Monday.

Well, I guess I have no option but to go back to Dr. F. And it doesn't seem like it's going to be a problem that I didn't have surgery with him. Among all his other good qualities, he's humble.

Hrmph.

Recovery Update

Turns out that I did have diaper rash--but when you're an adult, they call it a yeast infection. I've just begun a course of Diflucan and should be feeling better soon.

I'm still tired and high on painkillers most of the time, but every day, I walk a little farther, I take fewer painkillers, and I'm conscious for a greater part of the day. This is progress, frustratingly slow though it may be.

DH left my parents' house this morning and I have been feeling emotionally vulnerable and weepy ever since he left. Though he had a bad cold, we have a lovely Thanksgiving, just the four of us. I also love seeing how my parents love my husband. I know that they loved him before, but after my sojourn in the hospital, something has changed with his relationship to my family and to my parents. He is one of us in a new way.

My mom and I are flying back to my city on Tuesday. I'm not ready to go back to work a week from Monday, so I will call Dr. S's office tomorrow to see about getting another week off work. I'm trying not to feel like I'm malingering, but every time I think about going back to work in a week, I burst into tears.

Oh, I'm not sure I mentioned this before, but DH and I are benched from TTC for the next three months. My uterus needs time to heal before it could sustain a pregnancy. In a way I'm relieved to have the time for DH and I to focus on our relationship and sex lives without the stress for TTC.

On recovery and regression

According to the information on Dr. S's website, laparoscopic surgery isn't that big a deal. I should have been discharged from the hospital after twenty-three hours (sooner, if I wanted), able to travel after seventy-two, and back to work in two weeks.

Lies, all lies.

It always sounded unlikely that I would be able to get up and waltz on home right after having my uterus shredded and surgically reconstructed. Twenty-three hours after my surgery, I still couldn't walk or pee on my own. The walking, I expected, but no one warned me about the pain of having a distended bladder in the middle of the night, crying on the toilet as DH ran to get the nurse who would inevitably drain me with a catheter so I could repeat the whole scary process a few hours later. I have a fear of catheters.

When nothing worked to induce me to pee, they put a catheter in connected it to a large bag and sent me back to the hotel where my family was staying, hoping that a few days of complete "bladder rest" would enable me to pee on my own again. I ended up traveling back to my parents house with the catheter. I was scared that I still wouldn't be able to pee during the drive and then my family would be driving around rural _____________ looking for an ER to drain me.

The irritation from the catheter made my vulva swell up to twice its size. On Monday night, when my parents' neighbor (thankfully, a urological nurse!) came over to remove it, I cried from the relief of finally having the catheter out and the remaining anxiety that I still could not void. But I woke a few hours later with a full bladder and used a tip that the nurse  suggested: I sat on the toilet and poured a bucket of warm water over my vulva and I was finally, finally able to pee. My mom did a little dance in the bathroom in celebration and my dad sent a text message to my DH.

Now, my vulva is still swollen and covered in a rash. Monday night, I ditched the mesh hospital panties for my regular cotton underwear and pads, and now I'm wondering if that was the best idea. Could I have diaper rash?

If there is anything more infantalizing than having my dad change my pee bag and having my mom in the bathroom with me cheering me on as I try to pee, it would be a case of diaper rash.

Surgical Findings

1. NO ENDO: Anywhere, at all. The choice phrase from the surgical report was that my ovaries, fallopian tubes, and entire pelvic cavity were all "grossly normal."

2. Adenomyoma: The mass in my uterus was larger than expected: 10 centimeters. It was all across the top right hand side of my uterus and a bit on the back side of the uterus as well. My uterus was the size of a sixteen weeks pregnant uterus! This meant that the surgery went longer than expected: six hours rather than four. I'm so glad that I went with the more experienced surgeon, despite the expense and inconvenience that entailed. What if a less experienced doctor had called my uterus a lost cause and performed a hysterectomy?

So for Thanksgiving, I'm feeling very thankful. For the health of my ovaries (despite the DOR, which I guess is really DOR), tubes, and newly reconstructed uterus. For the expertise and compassion of Dr. S. For the support of my parents and DH upon whom I was until very recently dependent for even my most basic bodily needs. I am truly thankful.

T - 1

The fast has begun.

Pre-op surgical consultation has been had.

The first of many doses of laxatives has been swallowed.

Happily, I have not bitten anyone's head off, including my loving husband and my dear parents who have flown in to be with me during the surgery.

Even better, Dr. S. is very optimistic about the surgery; no more adenomyomas were found during my ultrasound today, though he did say I could have adenomyosis. Also, the adenomyoma doesn't appear to have grown since last year.

Though I am a wimp about medical procedures, I'm actually feeling optimistic and relieved that it will be over soon.

Fear and Trembling

Today, I received the sacrament of the anointing of the sick in preparation for my surgery next week. Father J anointed my head with oil, he laid his hands on me and prayed that Jesus would keep me in the hollow of his hand during the surgery and my recovery. He prayed that God would guide the hands of the surgeon and everyone who will touch me.

I know that I am loved by God all the time. But it made me feel so special to receive God's love through human hands and through the (extra)ordinary substance of (holy) oil.

Father J assured me that he would put my name on the list of the sick so that all in the parish at all the Masses would be praying for a successful surgery and my quick recovery. This made me feel loved too, by God and by God's people.

The sacrament gave me a moment of peace in what has been a very anxious week. I have irrational fears of needles (I get dizzy before a flu shot), knives, germs (I am afraid of contracting an incurable flesh-eating bacterium in the hospital), drugs (a big reason IVF was never a temptation for me), and pain. I know that most of these fears are irrational, but they are very, very real to me. In addition, I am swamped with work that needs to be done before I go, work that I cannot finish efficiently because I am so distracted by my anxiety.

I ask you, my dear readers, however many or few of you there are to pray for me, as I go into the week of my surgery. Pray that I may have courage. Pray for Dr. S my surgeon. Pray for my DH and my parents as they watch over me.

Update: I take that back

It was slow in coming, but I had horrible pain, nausea, vomiting and LOTS of despair this morning. I'm feeling better now, but

YES, I'm happy I'm have surgery.

NO, there is absolutely no point in waiting.

YES, it will be worth the money, the inconvenience, the time off work.

NO, I cannot keep living like this.

True and False with my RE

Dr. S, world-famous endo surgeon, has very different opinions from my RE about my fertility. Let's evaluate what she told me in the course of my consultations:

1. "I don't think your adenomyoma will affect implantation."

Dr. S says: FALSE! Although adenomyosis, unlike endometriosis, is not considered a cause of infertility, in my case, there is so much tissue, all balled up in one place. "It definitely could be affecting implantation."

Comments: This was my perspective all along. This was why I sought out an RE in the first place, so she could take a look at my MRI, evaluate the size and location of the adenomyoma and tell me whether it would affect fertility. Instead, she never even looked at the MRI records I had sent to her. She saw the adenomyoma during my hysteroscopy, but she didn't seem to think it would be a problem. F--- her.

2. "Laparoscopy is a bad idea for you. It will aggravation your ovarian reserve issues."

Dr. S says: FALSE! This is only true for women who have very large endometriomas on both ovaries. He knows I don't have such a problem, because none of my multiple pelvic ultrasounds, MRIs, nor hysterosonogram has ever shown any evidence of endometriomas on my ovaries. "In any effort to protect a woman's ovaries, REs often prevent women from getting the treatment they need."

Comments: My RE issued a blanket recommendation apart from the specifics of my case. DOR = avoid laparoscopy like a cloud of tobacco smoke. In reviewing the literature about laparoscopy and DOR, many of the articles emphasize that preservation of the ovarian function is entirely dependent upon the skill of the surgeon, something my RE never mentioned to me. Which is why we're traveling to ____________, rather than having my surgery locally.

My RE is one of the best in the country. Although only in her 30s, she is on the editorial board of the top journal of reproductive endocrinology. She is the recipient of a prestigious NIH fellowship. In other words, she's no small potato.

And yet, she seems to be making decision by virtual of a decision tree.

Diminished Ovarian Reserve? It's hopeless. Do not get a laparoscopy. Head straight to IVF.
Adenomyoma? Never affects fertility. Don't worry about it.

The particulars of my case, my adenomyoma, my ovaries, my (possible) endometriomas, were of no interest to her.

Of course, the most devastating things she said about me, she didn't say to my face: She told my pelvic pain specialist that I have a one percent chance of spontaneous pregnancy. Even though I ovulate every single month.

But she's been wrong about so much. I'm going to bet she's wrong about this.

And suddenly all is new

I wrote my last post from the depths of despair. Of all the deadly sins, despair, the enemy of hope seems to be the one that gets me every time. But there have been some big changes that give me reason to hope.

Number one is that DH got a job! It is a temporary job, to be sure, and one that takes him far from me, but one that will hopefully set him up for a permanent job closer to home in the future. And it will provide us with the money we need for....

Number two. I spent the summer coming to the realization that the amount of pain and anxiety I experience with every menstrual cycle is untenable. The despair of CD1 is one thing. The despair of CD1 combined with excruciating pain and vomiting is seriously enough to drive me to self-harm every single month. This situation cannot continue. My pelvic pain specialist in my city is, unfortunately best friends with my RE. After consulting with her (with my consent), he is under the impression that I cannot get pregnant without IVF, and that if I don't want to do that, I might as well have the adenomyoma excised. He has only removed such masses for women who were done with childbearing.

Not inclined to put my fertility in the hands of someone who thinks that I will never get pregnant, I sought a second opinion with a very famous surgeon who specializes in endometriosis. Dr. S has done this surgery hundreds of times, for women who have gone on to have children. The surgery is expensive, but now that DH has a job, we can afford it. I am scheduled for November, which means I will only have one! more! period! before surgery.

Dr. S will remove the adenomyoma, reconstruct my uterus, and remove any additional endo that he finds in my pelvic cavity. I am terrified, but others have been through worse and survived, right?