CD2: And it begins again

AF started right on time despite that 4 weeks ago both of my ovaries were operated on to remove type 2 endometriomas. Apparently I have very resilient ovaries as they weren't stymied at all from doing their thing and ovulating last month.

I go in for bloodwork and my CD3 ultrasound tomorrow morning. Despite my love for my clinic in NYC, they can't transfer into a surrogate, freezing is too pricey there, and I really feel like I need to try something new in my last few tries. So I've moved on. Maybe not forever, but for now.

I've been trying to collect records from the two clinics that I did cycle with. Dr. Italian's office sent theirs over quickly but interspersed between my records were copies of other patients' records. Oy! I shredded them as it was the only decent thing to do. Some of my records were incomplete. I asked them to resend my records and they said they would do so by email....and so they did and I'm unable to open them. Ugh. One of the records they sent originally was for a pathology report for some wispy material that was found in my uterus last October during a hysteroscopy. The pathology used the ICD code of "9 621.5", which I looked up and found "intrauterine synechiae" as the translation. Googling this, however, gave me a rather shocking deciphering:

Asherman's syndrome

OK. WTF? Seriously? Do I really have Asherman's and my RE didn't let me know? Or is it that ANYTHING taken out of the uterus is defined as Asherman's by the pathologist? I am baffled. As is usually the case, I discovered this after business hours and can't pick up the phone to call anyone and get immediate answers. I hate that feeling of being left hanging with something like this. There's a number for the pathologist on the report but you know that when you call these numbers that they never want to talk to the patient. I think I'll try it anyways tomorrow, just to see how far I can get without them redirecting them back to my doctor.

On the surrogate front, no, I haven't found anyone yet. Everyone I've found has turned out to be inappropriate in one way or another. I found one surrogate in California (the primo state of surrogacy in our country) and she just went through a divorce. I was advised by my clinic to stay away from anyone who has undergone a major life change in the last year (and they did mention divorce as a major life change). She also mentioned that she's taken in a foster child. I know that some people take them in out of the goodness of their heart, but others do it for the money. I am worried that this gal might be doing it for the wrong reasons. Also, she is 45. So a bit long in the tooth (as am I as I am 45).

My other potential surrogate is in Ohio, a fairly friend state as far as surrogacy goes. She wants $25K plus expenses. She doesn't have medical insurance. Ouch. She has, however, carried triplets in the last 3 years or so. I just can't afford the medical insurance on top of her fees though. It winds up adding about $11K just for the premiums, not to mention deductibles.

I met another surrogate online, from Indiana, but it's a state that doesn't recognize surrogacy. She, also, doesn't have insurance. It took me a 2 hour long call with her to find out that she didn't have insurance. It feels like a waste of time some days.

I wrote to a cousin of mine, on my maternal grandmother's side and asked her if there were any girls on that side of the family who might be interested. Sadly, her mother took DES and three out of four of the daughters wound up infertile because of it. The cousin that I asked, one of them. She explained that she went through horrible heartache with her infertility and wound up adopting. I had no idea. I felt so horrible for even bringing it up.

I met with my first cousin's wife who has an older daughter that I thought might be interested. Unbeknownst to me, she found her way into the drug scene, her mother explained. Another one crossed off the list.

I've asked my best friend (who has fibroids and other issues), the wife of a good friend, the wife of a neighbor, the wife of my ex's cousin. Nothing.

I really feel as though I have exhausted the list of people around me which was no small feat. In asking each person I had to retell the story of how I got to where I am now, which as you know isn't the most pleasant thing. But I also had to share something about what I'm going through which isn't fun either. It's a huge favor to ask. I expected to get rejected by most, but not by all. I realize I have to go back to the pool of women on some of the websites and look again.

Oh ... there was one person who sorta of accepted though. My niece, whom I've never met, offered to do it but I am a little afraid to accept her offer. She's whimsical, tatooed, shaved her head and then tattoed it ... seems a bit reckless but maybe I think that only because she's not like me ... but on the other hand she's vegan, open minded, and she's family. I'm not sure that her offer was genuine either. The one person I haven't asked is the half sister that I have who lives in Ohio (who I have never met). How do I ask someone who is family but we've just never made it a point to connect? She has three little girls of her own. She can bear children. I just hate to come out of the woodwork after all these years to ask her this huge favor. I'm not sure that I can do it.

So my focus tonight is on getting through tomorrow's ultrasound...seeing if my ovaries have shut down completely after this last surgery. Praying it's all systems go. Onward and upwards into cycle number nine.

One Big Step Forward For Surrogacy

This was just released yesterday. This is a huge step forward for surrogates! Intended parents (IP) often have to pay for extra insurance to cover the birth of their child. This makes it a covered event in the state of Wisconsin. Hopefully other states follow suit. Insurance for a surrogate can cost about $11K in premiums and has a massive deductible that makes it financially IMPOSSIBLE to afford.

I'm elated to see this news article.

The actual court opinion.

Surrogate mothers win insurance battle in court

By SCOTT BAUER

MADISON, Wis.

Insurance companies may not deny coverage to surrogate mothers, the Wisconsin Supreme Court unanimously ruled Friday.

The decision overturns a lower court's ruling that said Mercycare Insurance Co. and MercyCare HMO of Janesville did not have to provide benefits to two surrogate mothers who were denied coverage during their pregnancies. The companies had a policy of covering pregnant women, excluding surrogates acting as "gestational carriers" for other people's babies.

But the Supreme Court said insurance companies may not make routine maternity services unavailable to surrogate mothers based solely on their reasons or methods of becoming pregnant. The ruling affirms an opinion by the Wisconsin Insurance Commissioner that the HMO could not legally withhold coverage under its 2002 policy.

The two surrogate mothers involved in the legal battle are not identified by name in court records. Combined, they incurred more than $35,000 in medical bills during their pregnancies in 2003 and 2004, according to the court opinion.

Wisconsin Insurance Commissioner Sean Dilweg said the ruling supports his department's view that insurance companies can't discriminate against women based on the reasons they got pregnant.

Dilweg said he wasn't aware of any other women in the state who were denied coverage and his office does not have figures about how many surrogate mothers there are in any given year in Wisconsin.

MercyCare HMO issued a statement saying it disagreed with the ruling and that requiring the coverage will increase insurance costs.

I am in love

I stopped taking my post-surgical darvocet yesterday so that I could make the 80 mile drive to Marlton, New Jersey. There was a horrible downpour on the way there that made me thankful that I didn't take my meds. I wound up there an hour early anyways which was good as they had a bunch of paperwork for me to fill out despite the stack of forms that I'd already faxed over.

The office facilities themselves aren't impressive. Rather mundane and low tech. That always scares me a bit but these guys have some of the best stats in the world for older women and women with higher FSH. I just have to trust that these guys are world class even if their office isn't.

Dr. Check was late due to the storm. I sat in his huge office, A/C on a bit too high, Loreena McKennitt blaring over the intercom. Interesting choice of music. His office was filled with medieval furniture - I sensed that this person was a romantic at heart. I figured he was a curious person, too. I waited for him for a while and a nurse finally came in to apologize again for his lateness. I explained to her that I was thinking of going the GS route so she brought in the Donor person to chat with me while I waited.

I got lots of great information on their donor program. They will indeed transfer into a compensated GS, no issues there. They gave me suggestions as to what to look out for (red flags) and what I should be looking for in a surrogate, who the good attorneys are in the state. No one too old as it can cause complications. No one on public support. No one who REALLY needs the money. BMI up to 31 or 32 is generally fine. A psych evaluation needs to be done even on a seasoned GS if she's had any major life changes in the last year (ie, divorce). All good information. One of my two surrogates was eliminated due to age (45) and that she'd recently become divorced and seems to be in financial need.

Eventually Dr. Check showed up with a 3rd year medical student in tow. We went right to the meat of why I was there. And after seeing that I had gone through EIGHT IVFs, 1 FET, 2 IUIs, a lap, and two laparascopies since 2005...he didn't even breath the "donor" word. No. He didn't. I was shocked.

Instead, he spent the next two hours telling me why he felt that he could in fact get me pregnant. That I'd transferred 27 embryos into my supposedly defective uterus didn't give him the slightest fear. He sees me as a challenge. Not an insurmountable one either. He honestly thinks he knows what to do for me. And the adenomyosis? He's not convinced that it would cause a problem with implantation. He even felt that my recent surgery might have been completely unnecessary (and he is friends with my surgeon, Dr. Persian from Stanford, too. That's saying something). That, I didn't need to hear as I'm still in pain from the healing. Especially when I am worrying that the surgery on my ovaries to remove the endometriomas may have totally fucked my ovaries and FSH levels.

But as he talked, he walked over to a sideboard filled with stacks of studies. He'd pause between his stories and, every so often, would pull out a relevant study for me to read. Apparently he had an Israeli woman as a patient. I believe she was 38. She'd transferred 92 (not a typo) embryos without a single pregnancy. Then she went to see Dr. Check. And yes, she has a baby today due to his work. FSH? He sees no correlation between FSH and his ability to get women pregnant. He showed me his data on this. He actually has pregnancy rates of at or above 50% at the age of 44 and 45, but the live birth rate is about 8% (loads of aneuplodies at this age seem to be the reason for why he can't KEEP these women pregnant). His data is nothing short of mind boggling and he was more than happy to share anything he had with me.

He explained that he has a PhD in Reproductive Immunology and is board certified in Reproductive Endocrinology. A perfect combination, in my opinion. He knew Dr. Beer in Los Gatos (my RI doc) and did a lot of research in the same areas. He said that he found that IVIG and intralipids DO NOT WORK at all. They do nothing. They're a waste of money. The one thing that DOES work? LIT. Thank god for that. We chatted about the Ober study that made LIT illegal here in the states. I didn't tell him that I do my own. I didn't want to freak him out that much. But something tells me that he wouldn't have been freaked out.

Another interesting thing he told me about LIT. It doesn't work for the reasons that Dr. Beer, Dr. Coulam, and the other famous RI's have written about. It has nothing to do with DQ-alphas, LADs, etc. You can do LIT with ANYONE'S WBC's - again, DQ-alphas don't matter. Dr. Beer's office finally caught onto this but they are going down the T-Reg Cell path. What it actually does, according to Dr. Check, is to provoke an allogenic immune response that forces a certain type of cell (delta gamma something) to produce progesterone receptors. When he discovered this, he figured that if the cell made receptors, it must be for a reason. He then added in progesterone to see what would happen. At a certain threshold level of progesterone the cell kicked out a protein. (mRNA codes for proteins). He wondered what this protein was for. So he stuck it into a dish with a square segment of natural killer cells and found that this protein deactivated the NK cells. So, LIT reduces NK cell levels because of this protein that is formed by mRNA. That's why LIT works. It's all so fascinating. I actually do remember Dr. Beer saying something about LIT helping to reduce NKs but I am not sure if he ever figured out "why" while he was alive. Another brilliant doctor he was.

For over two hours he told me story after story like this, diving into incredibly technical lab research he'd done. I had a stack of studies at least one inch thick when we were done. It will take me a few weeks to read everything he gave me. Fodder for most posts I suspect. :-)

He did an u/s, they didn't see any fibroids or endometriomas...so it was good to see that Dr. Persian's work was indeed done at my surgery just over two weeks ago. The did a pap, tested for mycoplasma, ureaplasma, and then put a swabbing from my cervix under the microscope. He put the images on a screen....and showed me that my cells were "clumping". What this means, he explained, is that if I were to become pregnant that they wouldn't be able to use my cervical secretions to tell if I was getting enough progesterone. Apparently 85% women will "clump when pregnant IF they are getting enough progesterone". No clumping? Then you need progesterone. The other 15% of women clump for no apparent reason at all and cervical secretions can't be used on them as an indicator of progesterone saturation. Well, I fit into this peculiar category of "non specific clumper". 8 IVF cycles later and there's a test I haven't heard of before. Utterly fascinating.

He thinks that the high stim protocols that I've been on were a huge mistake. He feels that I'm one of the few women that the gonadotropins really screw up our linings. (Why am I always in the minority category?) My endo is probably also playing a part in it. There's a medication that he wants to put me on for endo pain that I believe he said will also help my body to produce the same protein that is coded for when someone does LIT. I have to go to his office in Pennsylvania to get it...so I'm hoping to fetch this on Friday. It's worth a try at least. I do believe that it works though. He brought in one of his nurses who had had repeated IVF failures. She's 42. He put her on the medicine and she got pregnant the first try. Lost it. She had a second loss. The third try? She's now in her third trimester. So he was able to get a 42 year old woman pregnant three times in a row with this drug. Her losses might be attributed to aneuploidy or just not a high enough level of the drug in her system. No matter, what he is doing works.

There's so much I could say about this meeting. It was just amazing. I left with the hugest sense of hope I've had in a long time. If anyone can get me pregnant (or my GS), it's him. It's as if I've been to the Mecca of IVF at long last.

He has a memory that is amazing. He remembers every patient. Every detail. He's willing to go WAY out on a limb to try to get a patient like me knocked up. He doesn't see a woman with a high FSH or repeated failure as a problem, but rather as a puzzle that needs to be cracked. He truly sees it as a positive challenge. He is one of those people that you look at and say, "Someone needs to clone this man or retrieve every piece of information that this man has in his head before his life is over". When he one day passes, I cannot even imagine the knowledge that will pass with him. He's that frighteningly brilliant and amazing.

He is willing to transfer embryos into me or into a GS. Either way, he is willing to treat me. He's not turning me away or pushing me at donor. I wish I'd flew out to meet this man 4 or 5 years ago when I first read about Cooper. He's the most amazing physician I think I have ever met. He's inspirational, admirable, enthusiastic, sensitive. Everything you want in a physician.

I am in love.

And our RE's say our uteri are sticky like a peanut butter sandwich?

I've been doing a lot of reading while I heal from my surgery a week ago Wednesday. I feel a bit better each day but had a setback on Friday when it seemed I had a mild case of food poisoning. I ran a bit of a low fever, slept for about 36 hours, and today I'm feeling perky again. I am still experiencing some cramping on the right side, where I am told the bulk of my adhesions were at (and this is what Dr. Persian explains why I've had ongoing pain on the right side). Add in the appendectomy that they did and it's no wonder my right side is aching.

In my off time, I am trying to find a surrogate (no small feat), prepare for my meeting with Dr. Check at Cooper (which is in NJ, a state that hasn't completely banned surrogacy), and I'm trying to find out if there's anything concrete to the link between adenomyosis and infertility.

From, "Adenomyosis: New Knowledge Is Generating New Treatment Strategies: Adenomyosis and Fertility":

"The first experimental evidence that adenomyosis may cause infertility comes from Barrier et al. [50] In 2004, they published a case–control study in a population of captive baboons and found that adenomyosis was associated with the presence of lifelong infertility (odds ratio: 20.6). Their conclusion was that the condition is strongly associated with primary infertility in baboons, even in the absence of coexisting endometriosis."

I wonder if lupron depot therapy offers any relief for adenomyosis as it does for endometriosis? Something I'll be researching. In one of my many adenomyosis articles I came across a mention to JZ contractions, which seem to be correlated to failed transfers.

On this particular subject, I found in subsequent reading that our uteri actually elicit these contractions, called JZ (junction zone) contractions, which seem to kick off when something foreign (ie, a catheter) is put into our uterus by way of the cervix or when a tenaculum is affixed to our cervixes. Ladies, if your RE has ever assured you that your embryos aren't going to slide down your leg after a transfer ... please point him (or her) at this article.

Junctional zone contractions and embryo transfer: is it safe to use a tenaculum?
http://humrep.oxfordjournals.org/cgi/reprint/14/9/2367.

This is an older article, from 1999. But it starts off with,

"Embryo transfer is one of the most critical steps affecting the success rate of in-vitro fertilization (IVF) and has changed little since IVF was first described.

Unless something has changed in embryo transfer research in the last 11 years this article may very well still be current.

Then, go to the 2nd page and locate the paragraph on the right that begins with, "The ability of fundo-cervical contractions to move the mock embryo towards the cervix...".

Read and be stunned.

All I know is that my paranoid fears of losing my embryos with transfer aren't all that unjustified. They do say that a surgical transfer that bypasses the cervix is more successful. Interesting indeed, but where on earth does one get a surgical transfer. This article is 1999 though, and perhaps it's something that died off in the late 1990's?

Anyways, back to reading more and trying to figure out this mystery called adenomyosis.

Surgery Aftermath

It feels like a long time since I wrote last. I didn't get a chance to blog at all while I was in California for surgery as there was too much to do, then I was consumed with healing and getting home as fast as I could.

Rewinding back to last week...

As I mentioned in my last post, I went for my pre-op on Tuesday around noon. Thank god I ate breakfast because to my surprise I was to be on liquids the rest of the day in preparation for the next day's surgery. Not only that, I was to drink two 10 oz. bottles of wretched magnesium sulfate to clean my bowels, followed by an enema. Why? Apparently a sigmoidoscopy is part of the protocol when doing a lap with Dr. Persian. Oy.

So I yacked down the stuff, canceled both lunch and dinner dates, and spent the day in the "loo". They scheduled my surgery first thing in the morning (he had three laps to do on Wednesday morning) and we arrived at the crack of dawn. My very good friend "J" came with me as my advocate to ensure that I had blankets, attentive nurses, and every question answered.

I thought that I was getting the "Da Vinci" variety of robotic surgery that this surgeon is famous for, but they didn't feel that I needed it (who knows how this determination was made?).

So...3 hours after they administered the gas I woke up. I was alert rather quick, as is my way, and was coherent enough to remember when Dr. Persian came by with 8x10" glossies of my procedure. He was kind enough to go over each photo and make notes for me as to what was found in each.

In a nutshell, they did the following:

• Removed my appendix (I have a family history of them "going bad" so he agreed to remove it - my post-op report says that they found adhesions on it, but who knows if this was true?)
  
• Removed endometriosis throughout my pelvis, on my bowel, and god knows where else
  
• Removed type II endometriomas on both ovaries (type I is a pocket of endometriosis that invades the ovary while a type II is where a functional cyst is taken over by endometriosis). The capsules were completely removed and ovarian tissue was conserved.
  
• Removed extensive adhesions throughout my abdominal cavity
  
• Freed my ovaries from being stuck to my bowel and uterus (adhesions, again)

The determination:

• I didn't have ANY fibroids. They are, instead, pockets of diffuse adenomyosis
  
• The 3 x 1.5cm area in my uterus that was found on the pelvic MRI was a pocket of adenomyosis. I have what is called "diffuse adenomyosis", which means that my uterus has essentially been destroyed from adenomyosis - he suggested that I might wish to have a hysterectomy at some point in the next 5 years
  
• I have stage 4 endometriosis, all of which was removed
  
• My ovaries are in otherwise excellent condition for my age

I didn't bother to ask any other questions until my post-operative meeting two days later. I walked in with a page full of questions. The most important being:

Should I bother to try another IVF cycle and put them into my own uterus, or would I be better served with a surrogate?

His answer: I should have seen him much sooner and, yes, I should turn to a surrogate

So, one door closes, and (hopefully) opens. I asked him if I could hug him, and he said yes. I tried to not cry but I couldn't hold back the tears. It was a horribly bittersweet moment to finally know what the problem has been all these years. To know I have to give up on trying this on my own. I have old eggs, and I do know this like no one else knows, but the problem has mostly been my uterus all this time and having this proof at last was the very thin silver lining.

I entirely forgot to ask him why my right ovary seemed to have shut down. How I could have forgotten to ask this most crucial question, I have no idea. But I will be speaking to him again later this week and will make a point of talking to him then.

There's so much more on my mind, but I'll save these rants for another day.

I'm healing well and was out to dinner with day after surgery with my ex. I ate lightly (soup and a few bites of pasta) but it was remarkable that I was mobile just 24 hours after being on the table. I truly believe that my surgeon made all the difference this time. I just wish I'd seen him sooner so that I would have known years ago that surrogacy was a "must".