Alternative Therapies: Restoring Fertility Yoga DVD

I ordered these DVDs in May of last year, and I have been using them most days (I took a break for my surgery and recovery). Each workout is 35-40 minutes long and coordinated with your cycle. There are four phases: Menstrual, follicular (end of menstruation to day 10), ovulation (days 10-14) and luteal. They claim to treat a variety of conditions that cause infertility: endometriosis, PCOS, irregular ovulation, etc. The creators of the DVD are practitioners of Chinese medicine, which views infertility as the result of imbalance in the body. The goal is to balance the various energies in the body, after which fertility should result.

Each workout is short. Even on days when I'm exhausted and busy, I can usually squeeze in Fertility Yoga. Before my surgery, the workouts seemed to be alleviating my cramps a tiny bit. (It would be unfair to expect 30 minutes of yoga a day to dissolve a 10-cm adenomyoma.) I love all the twisting and hip-stretches in the menstrual and follicular phases.

The authors are very on top of their Amazon reviews, and respond to the questions and comments therein. This is how I know that these DVDs have the potential to help women with DOR, but it takes as long as 13 months for new follicles to emerge.

This is where my issues come in. These workouts are very mild, probably because according to Chinese medicine, exercising to the point of depletion is a bad idea when trying to conceive. All well and good, but the exercises were so mild that after a few months, I had lost a lot of muscle. (I am a thin person who must really work at muscle building. I've never had nor desired a rock-hard, muscular body, but I don't want to be skin and bones, either.) While you can do other kinds of yoga, between the end of menstruation and ovulation, for me that's only one week, not nearly enough to prevent loss of muscle. The luteal phase yoga, on the other hand, offers no challenges for stretching or resistance for two weeks of every cycle. Doing this for a couple of months would have been fine, but for more than a year? It didn't seem like a good idea to scale back my exercise so much for so long.

Now that I'm not letting infertility steal my soul anymore, I still use these DVDs on days when I have no other workout planned--about 3-4 days a week. I go to my Vinyasa class, even after ovulation (though only once or twice a week). I go swimming because nothing, NOTHING soothes my anxiety like swimming.

The authors are very insistent that menstruation is a vulnerable time when women are pre-disposed to overextending themselves. I take their advice and just do the DVD menstrual phase workout and no other, which provides a nice rest during my period.

****This post is a reflection of my own experience and does not constitute any medical advice to anyone.****

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.

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.

Something is working

It's CD1. No disappointment this time, because we took a break this month. But here I am, sitting up in bed with minimal pain: no vomiting, no writhing, no tears, no wishing death upon myself. Last month was similar; I was even able to drag myself out of bed for a work function that I could not miss.

The hard thing about my kitchen-sink approach to alternative therapies is that I have no idea what's working. My periods took a turn for the better when I started taking blood movers (Chinese herbs) during the first part of my cycle. They aren't safe during pregnancy, so I would discontinue after ovulation. Around the same time, I started fertility yoga. The creators claim that this yoga, in which you do a different set of poses for each phase of the cycle, helps with endometriosis (or in Chinese medical terms, blood stagnation). And at the same time, I started avoiding stagnating foods. I've always eaten healthy food overall, but once a week or so I would indulge in french fries, potato chips, eating to excess. For months, I've been avoiding any food that gives me that bloated feeling.

And finally, after that dreadful experience being off the NSAIDS in anticipation of my hysteroscopy, I was reminded of the magic of prostaglandin inhibitors and starting taking them liberally at the first sign of PMS cramps.

So I have no way of knowing what's working and I don't intend to try any kind of process of elimination, because I have no desire to spend a day in bed disabled by severe abdominal pain and vomiting.

I'm feeling a bit silly for scheduling surgery because of my intolerable pain, when suddenly, it's become quite tolerable. On the other hand, my surgeon was quite clear that the adenomyoma could be causing implantation failure, and I don't want to spend another year TTC, only to find out it was the adenomyoma all along.

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?

What's wrong with me, Part I: Adenomyoma

Adenomyosis is a condition in which the endometrial tissue in the uterus goes crazy, invading the muscular wall of the uterus. Like its cousin, endometriosis, it causes severe pain with menstruation.

Instead of diffuse adenomyosis all around my uterus, I have an adenomyoma, a focused growth in one, large, painful place at the top of my uterus.

Some women have pain from adenomyosis all the time. I'm relatively lucky; I have mild pain the week before my period, severe pain and vomiting on day one, and mild pain that I control completely with Aleve days 2-3.

It's unclear whether and how such an adenomyoma affects fertility. In endometriosis, the endometrial tissue grows outside of the uterus, causing a toxic environment for fertilization and affecting ovarian health. In adenomyosis, the endometrial tissue is more or less where it's supposed to be. Thus, most doctors will tell you that women with adenomyosis might have a higher chance of miscarriage, but that it shouldn't otherwise affect fertility. Anecdotally, I've seen many women on fertility forums get pregnant with adenomyosis.

On the other hand, this paper suggests that some women with adenomyosis have trouble getting pregnant (this article suggests the same). On the fertility forums, not every woman with adenomyosis gets pregnant. It seems self-evident to me that if my 5x7mm polyp could cause implantation difficulties, then surely my enormous adenomyoma could.

I would hazard a guess that since it affects the structure of the uterus itself, fertility depends on the extent of the adenomyomas/adenomyosis, as well as the unpredictable nature of fertility itself. In other words, some women with adenomyomas can get pregnant naturally, others need medical intervention, others will never get pregnant.

Although the above articles present surgery as a treatment for both pain and infertility, my pelvic pain specialist has warned me that surgery carries with it the risk that my uterus will scar closed, ending my chances at carrying a pregnancy to term. His advice last year was to wait, get pregnant, then have the surgery when I'm done with child bearing.

That was April 2011; it has been a year and obviously, I am not pregnant. Every month, the pain, vomiting, and blood loss continue. Every month I fall into despair. Some months, the pain is better than others, but emotionally, the pain gets harder to deal with.

If I continue to not get pregnant, at some point, I will have to gamble: a chance at restored fertility or infertility. All or nothing.

Returning to the scene of the crime

I'm not doing so well.  I arrived at my parents' house for a visit Tuesday, and my period started Tuesday evening, which was no surprise, since we missed the egg this month.  Wednesday was my monthly day of hell, which I initially thought was not going to be so bad. Hadn't I been keeping up with my supplements, my fertility yoga, the centering prayer? Wasn't I feeling less stagnant than usual?

But then I called my RE's office to schedule my hysteroscopy, and the nurse told me to avoid all blood-thinning medications: aspirin, NSAIDs, etc. I was already doped up on Aleve, so she told me not to take any more. I thought I was over the risk of vomiting, so I had a light dinner with my parents.

Then the Aleve wore off. I took Tylenol, but, to put it indelicately, it didn't do shit. Stabbing abdominal pain, severe aching in my hips and knees, and vomiting followed, plus very heavy bleeding. I took one of my specially-compounded Valium suppositories, and continued to vomit. I took another. No effect. I finally gave up and took an Indocin suppository, which is an NSAID, but I just couldn't take any more. Ten minutes later, I was asleep.

The pain was excruciating, but worse was the accompanying despair. The deep sense of failure of not being pregnant. The hatred and disgust that my body was doing this to me again.

I missed DH, who couldn't come home with me because of work. My mother was on hand, emptying the vomit bucket at regular intervals and directing me to rinse my mouth with water, but her presence was a mixed blessing. She never knew how to comfort me when I was a child. When I was a teenager, suffering with the same damn cramps (which were longer in duration but less intense) she told me that I would feel better if I moved around.

She now understands how very abnormal this is, and I know it's hard for her when she has to see me like this, but she's no better at comforting me. I learned long ago how to comfort myself, but when I'm in that much pain, I just can't. My despair at failing to conceive finally spilled out, but her response was to remind me that we're "going to adopt anyway" and maybe I should just tell DH that I want a hysterectomy now, and that I should just "think positive."

I told her that that was Gospel of Prosperity bullshit and that I didn't want to hear anymore of it. She got the message.

That was two nights ago, but the effects of the physical and emotional trauma still remain. I thought it would be better to come home for my day of hell than to stay alone at home. But now I wonder if it's the best thing for me to be back at home in the house where I felt so alone growing up experience the same medical condition.

I wonder how long I can keep doing this, going through this monthly hell.

I can't have surgery to remove the adenomyoma, because it might scar my uterus closed. I can't conceive, possibly because of the adenomyoma.

How long before I call it quits forever?