Finally Arrived

A Rant on Vaginal Suppositories

After my IUI, to pass the time during the two week wait, I acquainted myself with Progesterone suppositories. 

This was a switch. I had spent the first two weeks on Viagra suppositories that were supposed to improve my thin uterine lining. Maybe they improved my lining, maybe not. But I’m sure they didn't improve my mood.

A Viagra suppository is similar to white butter in the shape of a bullet, about 1.5 inches long. Also like butter, it melts at body temperature and must be kept refrigerated. Now, figure out a way to get a bullet of butter into your vagina without an applicator. Not easy.

For some reason, Viagra suppositories don’t slide in easily (as they warm up, they start to melt and stick to everything), but can slide out with almost no effort at all. Being unaccustomed to sticking my fingers up my twat (I’m part of the Tampax generation) - I found it difficult to shove a Viagra suppository far enough into my vagina so that it did not fly out – at high velocity, across the room - the moment I sneezed or sat down.

I even had to use those Viagra suppositories during my period. It created a revolting, creamy, nasty mess – like bloody cake frosting - on my maxi-pads. And when inserting them, I’d get the bloody mess on my fingers and under my fingernails. Can you say GROSS?

And to top it off, the Viagra irritated my nether regions to no end. The burning and itching was like the yeast infection from hell.  So, there was no desire for sex during the one and only portion of the cycle where such activity was officially allowed.  We did without for over 5 weeks.

So when ovulation time rolled around, I was relieved to be off the Viagra suppositories.  Surely, the Progesterone suppositories would be better, right?

Wrong. Turns out I hate them even more than the Viagra suppositories.  The progesterone suppositories were even more difficult to get “in there”.  They looked like capsule pills that you would take orally. (In fact, I once did take one orally by accident - too many damn pills to keep track of - and ended up calling the clinic's after-hours RE Fellow in a complete and utter panic, convinced I was going to die.  The Fellow laughed at me and assured me taking progesterone orally was harmless but completely ineffective.) But instead of swallowing the progesterone capsules with a glass of water, you’d put them where the sun don’t shine.  Their small size made them even harder to put in than Viagra.  They would rotate and turn around as I tried to insert them and sometimes get stuck in uncomfortable positions.  Like the Viagra, the progesterone also caused irritation.

But for me, the last straw was when the progesterone oil managed to escape my maxi-pad twice and permanently stain two of my favorite pairs of slacks. Imagine, if you will, my discomfort while pointing out the stains to the dry cleaner.  I mean, how do you explain an OIL stain in the crotch of your pants?  Someone ordered a Big Mac with fries and used my crotch as a napkin? I was douching with extra-virgin olive oil? How would you explain it?

Take my advice, don’t wear nice slacks if you are on progesterone suppositories.

On top of all the above mentioned trials and tribulations, I had to wear a maxi-pad for 5 weeks straight - no tampons allowed.  In comparison, the injections are a walk in the park - no muss, no fuss, and over in 3 seconds.

Downgrading to IUI

We downgraded our first IVF attempt to an IUI cycle after I produced only 1 follicle on maximum stims.  We had three lifetime IVF attempts covered under our insurance and did not want to waste one attempt on a crap cycle. Besides, there was no point subjecting myself to the surgical risk.

I tried to focus positive energy on the IUI. There was a real chance I’d get pregnant with an IUI and my one follicle.  I kept beating the damn odds for everything else (ectopic pregnancy, poor response at a relatively young age), so maybe I could beat the odds for this.

For the next few days, I maintained my dedication to taking all medications exactly on schedule and not indulging in any of my vices (mainly coffee).  I continued with the ultrasounds and took my HCG trigger shot as directed.  On the big day, I coordinated the “donation” with my husband, got in the stirrups, assumed the position, closed my eyes, and thought of England.

And then we waited for two weeks.

Pondering Poor Response

After receiving the devastating news that I had only produced one follicle during my first IVF cycle, despite being on the maximum dosage of stims, I tried to make sense of the world. It seemed so unfair that I became angry with God.

I always thought IVF would be the answer to our problems; part of me suspected it would be how we would have a child, even before we tried Clomid.  I despaired as I realized that IVF might not work at all for us – we might be one of those pitiable couples whom it does not help.  It hadn’t really occurred to me before. That I might not be able to have my own biological child, even as advanced as medical science is.  It just broke my heart.

I had been the perfect IVF patient. All drugs taken exactly on time, no caffeine or alcohol injested, and was taking care of myself. And still, this happened. I was supposedly too young to have this type of ultra-poor response. On the High FSH Forum, I discovered lots of older women with higher FSH who nevertheless produced a lot more follicles with a lot less drugs!

I knew there was a chance IVF would not work, but I didn’t expect it to “not work” so soon in the process – I mean, we hadn’t even started yet!  I thought the major pitfalls would be in getting the eggs to fertilize and in getting the embryos to implant, not in producing follicles.  While I knew I would probably be a low responder, I thought that meant producing only 7-8 follicles as opposed to a more typical 20.  I had no clue that it was even possible for me to produce just one.  Basically all those drugs did nothing, since I naturally produce one follicle per month anyway. I think I might have responded better on Clomid, for God’s sake!

The women on the High FSH Forum told me not to despair. Many of them had IVF cycles with similarly abysmal responses, but had improved markedly with different protocols.  Although many doctors prefer to treat High FSH patients with the Lupron Flare protocol (the protocol I used), this protocol was very out of favor among the Forum’s women. It seemed like hardly anyone had a good response with it – many women had been over-supressed with the combination of Lupron and birth control pills.  They urged me to try IVF again, but to insist on a different protocol.

IVF Attempt #1: $4500 of wasted meds

In October, 2004, I started my first IVF cycle.

I was on the Lupron Flare protocol, with the max dosage of stims: 450 Gonal-F + 150 Repronex per day (600 IU of FSH plus 150 of LH) and 10 units of Lupron twice per day. The cycle was preceded by 2-3 weeks of birth controls to quiet my ovaries down.

I was the perfect IVF patient, I tell you. I did all of those shots exactly right. I managed to get every damn flake of that Repronex powder properly dissolved in saline vials, drawn into a syringe without so much as a bubble, and injected into my roll of stomach fat (I knew that my love handles would be good for something one day…).  All shots were given exactly 12 hours apart, give or take 5 minutes, even though I traveled to Chicago twice and needed to mind the time difference. I even managed to briefly adjourn a business meeting with a customer and colleagues at precisely the right time to shoot up in the women’s room.

I shot up on an airplane from my seat during turbulence - not in the bathroom because the seat belt sign was on – and probably freaked out the person sitting next to me. I shot up in restaurants and movie theater bathrooms as well (I missed almost the whole leper colony portion of The Motorcycle Diaries). I shoved those creamy white Viagra suppositories as far up into my vagina as I was able, four times a day, even though they made my nether regions itch and burn like the yeast infection from hell. I put aside my misgivings about using Viagra for such a clearly off-label purpose, and the fact that very little, if any, health testing of Viagra on women has been done. And let’s not forget the oral meds – baby aspirin, pre-natal vitamins, and Synthyroid.

But despite my perfection and enthusiasm, the cycle did not go well. Although I had a few antral follicles on both ovaries during my day 1 baseline ultrasound, by cycle day 5 all was still quiet.  Dr. Blond said maybe I was just a “slow starter” – it would be much worse if there were only one or two follicles. In this case, zero follicles were actually better than one or two. 

But by day 8, one and only one follicle appeared and it was clear that no others were going to show up at the party this month. So, this was pretty much the worst scenario.  Just one lousy follicle. And after being on the maximum dosage of stims, at age 34 – a relatively young age in the ART world. All that medication, all those shots - $4500 worth (covered by insurance, thankfully) - for nothing. I would have produced one follicle on my own naturally (I know I ovulate). Many 45-year-old women have a better response to fertility meds than me.

I was officially termed a “poor responder” - not entirely unexpected since I’d failed the Clomid Challenge test and had high FSH (14.9) on day 3. But the Big University IVF docs were quite surprised at just how poor my poor response was – I mean, just one follicle on max stims is about as bad as it gets.

Anyway, I was pretty devastated. I had fantasies of producing 10-15 perfect follicles. I think Dr. Blond had those fantasies too, because she had been recommending PGD to choose the best embryo for my single-embryo transfer.  Well, we didn’t have to worry about that anymore.

Dr. Bigshot was covering for Dr. Blond on day 8 and he broke the news to me.  He said he was sorry and strongly recommended I cancel the IVF cycle and change it to an IUI, but it was up to me.  They would do the IVF if I requested, but it had only the slimmest chance of succeeding. Typically less than half of the eggs in follicles successfully fertilize and make it to day 3. 

I burst into tears, and Dr. Bigshot mumbled something and walked out of the room. I had so many questions for him – why did this happen, might it be different next time, what were the odds for success with an IUI versus a one-follicle IVF – but he ran out of the room so quickly I couldn’t ask them.  An IVF nurse remained behind, and stroked my hand – there, there – while I blubbered.  And after about 3 strokes she ditched me too.

I was absolutely devastated. I had been sure that IVF would work for us; I had been very, very optimistic. So I felt like the wind had been knocked right out of me, leaving me gasping for air.  I was KO’d – out for the count.

So there I was, sobbing and sobbing on the examining table, abandoned by the doctor and the nurse. I was shaking so much I felt physically sick.  But after about 10 minutes and a cell phone conversation with T, I finally managed to collect myself and get dressed.  I had no idea if the doctor or nurse was planning to come back, no clue if they even wanted to know my decision (continue with IVF or switch to IUI), and no inkling when my next appointment should be.

It didn’t matter. I couldn’t face them anyway. I couldn’t face anyone.  I was afraid I would burst into tears if anyone spoke to me.  So I snuck out of the examining room, averted my eyes as I hurried through the waiting room, and went to my car.   I called T again, and I was so distraught that he left work and drove 30 minutes, just to give me hugs and get coffee with me. He was clearly worried about my fragile mental state. He was - as he always is for the big things - the perfect, supportive husband. But alas, he had to go back to work.

Knowing I would likely break down crying if anyone even looked at me, I called in sick to work. I spent most of the rest of the day crying on my couch, and felt very sorry for myself indeed.

The Future Fate of Frozen Embryos

Prior to beginning IVF treatment, Big University IVF required we sign a form describing what we want done with any resulting frozen embryos in the event of our divorce or death. Yikes.

This was an extremely difficult conversation for T and me.  Death was easy for us to agree, but divorce was another matter. T wanted to donate or destroy them in that instance, where I wanted to retain “custody”.  I did not want to donate them as they could be my future children, and I definitely did not want them destroyed. Call me selfish, but realize that at age 34 I was already showing signs of ovarian failure. After the interval needed to get divorced, meet some one new, get married and decide to have children, more than likely my ovaries would have stopped responding to even the most aggressive fertility treatments.  Those frozen embryos could very well be my one and only chance for children if we became divorced, where T could still go remarry some nubile 22-year-old and have as many children as he wanted.

I sobbed as we discussed it – so much I had snot running down my face. I did not want to even attempt to imagine life without T by my side. It made me so sad. I personally don’t think it is healthy for a marriage to imagine its divorce. Imagining my life with neither my husband nor children made me so very sad – almost desperate.

We were at an impasse about what to do with any frozen embryos, and might have stayed there if the IVF coordinator hadn’t told us that the form wouldn’t be the last word on the subject. Divorcing couples almost always explicitly address frozen embryos in their divorce settlements, and it was routine for divorcing couples to override what they originally stated in the IVF clinic’s forms.

So, in some ways that form did not mean much at all.  Everything would be explicitly renegotiated in the event of divorce.  Perhaps the form was there just to add even more pain and tears to the IVF process.

Preparing for IVF

Starting in September, 2004, there were a whole bunch of things I had to do to prepare for my first IVF cycle:

1. His and hers blood tests.
Our state regards IVF as similar to an “organ donor” procedure, and by law requires the following blood tests for both of us: HIV I & II, HTLV I &II, Hepatitis B & C, and Syphilis. I also had blood tests for Rubella, and blood type / RH factor.

2. IVF Orientation and Injection Training.
Big University IVF usually does this as a group class. But we had private lessons because BUIVF changed the date of the training and forgot to tell us. We showed up at 7am for this class, only to find it had happened the day before. Fortunately, Terri, a lovely nurse at BUIVF, took time out of her personal schedule to train us personally from 7pm to 9pm on a Friday night.

3. Selected a Fertility Pharmacy.
I learned that your average Long’s or Walgreen’s drugstore does not carry fertility meds; you have to find a pharmacy that specializes in fertility drugs.

I learned this the hard way. I made the mistake of trying to go with my insurance company’s general mail order pharmacy. I thought they’d be more likely to pay that way (the insurance company constantly flip-flopped on whether fertility meds were covered or not, depending on who answered the phone). But after sitting on my massive prescription (9 different medications, 3 types of syringes and 4 types of needles) for over 2 weeks, they finally figured out that they do not actually stock Repronex. And they were making it really difficult to get just one pill of Valium (for the transfer day) – they wanted the doctor to mail in (not fax) the original prescription. Too much hassle.

I ended up switching to one of the mail-order fertility specialty pharmacies, Freedom Drugs, at the last minute and received everything with one day to spare. Two HUGE boxes – I was surprised how large they were.

I’d highly recommend Freedom Drugs. Their telephone hotline agents are nice, supportive and understand how the medication works (I think they are RN’s?). They work with both primary and secondary insurance on your behalf. They Fedex out everything, packaged in ice, so it arrives the next day. (I had insurance coverage for most everything, but had to pay for Viagra suppositories out of pocket and their prices were the best I could find.)

4. Hysteroscopy
My regular gyno, Dr. Mustache, had already given me a very thorough infertility work-up so this was the one and only additional pre-IVF test I had to do. Basically, they threaded a camera through my cervix and into my uterus, to take a look around and see if anything was amiss.

For the procedure, they knocked me out with a light anesthetic that just made me sleep; I breathed on my own. I swear, it was like the best sleep I ever had. Once or twice during the procedure I woke up for a fraction of a second. I remember feeling some mild cramping (like menstrual cramps), moaning, and opening my eyes a little to see Dr. Blond working away down there, but then I fell right back asleep.

It turns out everything was OK with my uterus, except for its slightly weird shape (good news!). I had a great nap in the recovery room (best nap ever!), eventually donned my clothes, and then my husband drove me home. I then worked at home for the rest of the day (still slightly groggy).

5. Repeat of Day 3 Blood Tests
It had been about a year since my last day 3 blood test, so they ordered another. Fortunately, my FSH level was low this time – about 8.0. I guess if it had climbed too high they might have encouraged me to change the IVF plan (but note that BUIVF does not have hard FSH cut-offs, in general if you are willing to pay they are willing to play), and it is possible the insurance company would refuse to pay.

In the Infertility Playoffs: IVF

In August, 2004 we had our first appointment at Big University IVF.  My husband T and I sat down with Dr. Blond to discuss options.  Turns out Dr. Blond and I went to college together and graduated the same year even though we didn’t know each other.

I had mailed her my complete medical records ahead of time along with a letter asking detailed questions on my conditions and how they might impact our success.  We went over the questions for about an hour.

She first reviewed the films from my HSG in October, 2003.  She said that while my uterus was not normally shaped, it wasn’t the classic “T-shaped” uterus caused by DES exposure either.  It was something in between.   Note that neither Dr. Mustache nor the radiologist said my HSG was anything but normal, despite my questions.  But, even so, it was not a surprise to me.  When I left Dr. Mustache’s care, he gave me copies of my HSG films, and I then did my own research on the Internet to interpret them. As a DES daughter, I knew I might have uterine abnormalities, and to my eyes the films did not look quite normal.

Anyway, the bottom line is that Dr. Blond believed my uterus was not capable of bearing twins or higher-order multiples, and thus recommended that if we did IVF that we only transfer one embryo.  She also recommended that I line up a high-risk obstetrician (which seemed a bit premature to me!).

She also said that DES exposed patients usually have thin uterine linings. To improve mine, she wanted me to use Viagra vaginal suppositories to increase blood flow to the uterus.

She believed my FSH levels did not spell “game over” since I was only 34.  It meant that my ovaries would be harder to stimulate, but  my eggs should still be of good quality.  She also explained that there was still a chance of a second ectopic with both IVF and IUI, but they should be able to better control the risk with IVF because they would place the embryo directly into the uterus via ultrasound guidance.

By the end, we decided to do IVF instead of an IUI with injectibles because:

• Lesser risk of ectopic with IVF versus IUI

• Lesser risk of multiples with IVF when transfering just one embryo, versus IUI where they can’t control how many eggs get fertilized.
• Higher success rates with IVF, since I had already failed 2 IUI cycles.
• We have insurance coverage for 3 lifetime IVF attempts, including drugs.

Dr. Blond then did a quick ultrasound.  Everything was normal , but she mentioned that my ovaries were on the small side and therefore had less eggs, which makes sense with my higher FSH levels.

By the end of the visit, I felt excited and confident that this would work.  And I was prepared to be the perfect IVF patient.  I was hopeful for the first time in ages.

Big University IVF

After the second Clomid IUI failed, Dr. Mustache sat me down for a talk. He said we could continue trying with the IUIs, but since we had been trying for over 2 years now he recommended that we start seeing an IVF specialist.  Dr. Mustache is an OB-GYN with a specialty in reproductive endocrinology, but he doesn’t do IVF.  I think he did a great job for me though; he did all the right tests and did a great job on my surgery – I had a really quick recovery and almost no scars.  I’d highly recommend him.

So, I started researching IVF clinics. There are seven or eight clinics in our area. But it turns out just one takes our health insurance (which is totally awesome health insurance that covers 3 lifetime IVF attempts) and it was only 30 minutes away.  So, the choice was easy – we chose Big University IVF Clinic.

The first available appointment was 6 weeks later, so I gathered all my medical records, did the clinic’s prerequisite blood tests for STDs, attended the clinic’s excellent monthly “Introduction to IVF” lecture.  This lecture was so academic and full of results from recent experiments that I just loved it.  (I'm a nerd, what can I say?)  And I really liked their attitude with regard to my high FSH levels. They were willing to let me try even though my chance of success was not the greatest; they viewed it as my choice. Many clinics won’t even let you try IVF if you have high FSH, probably to keep up their success rates with the CDC.