WTF appointment

We had our WTF appointment on Friday at our New RPL Clinic (a recap of my diagnosis is here). Although it took us a 7 hour round trip journey up north it was worth it.

We didn’t wait to be seen. We were given 45 minutes of solid consultation time. We were listened to and encouraged to ask questions. We learned a lot.

Although we left there without any concrete answers we both felt remarkably reassured. He helped us to see that the treatment for a highly receptive (but not selective womb) can’t save every little embryo. We knew that, but sometimes it’s just nice to hear it.

He encourages us to keep trying, wants us to carry on with the progesterone in the 2WW for a few more months. Then have another biopsy as it has proven to be the most effective treatment in resetting the stem cells in the womb that will support an embryo. The progesterone and the biopsy both promote the healing process called decidualization which encourages implantation and brings the womb lining in synch with embryo development. All the things that seem to be going wrong for me.

He also explained a thick lining doesn’t always equal a good lining. That even a thick lining can still send out mixed signals, allowing a good embryo to be unsupported. So I can continue to improve the thickness but this won’t solve all my problems.

He relaxed my concerns about age when I touched on egg donation, saying it will be there as an option whenever I want it, whether I’m 37 or 47 (as long as I’m still menstruating) and so why not give myself the best chances of conception with my own eggs for now.

He cautioned us on the treatment proposed by our other doctors, saying that timing is the most important factor to consider. Blood thinning and reducing NK cells are certainly beneficial for me, but only at the right time in development of an embryo. Too much of these things too early could hinder early development, making miscarriage a likely outcome. The right amount of NK cells is critical to embryo development. Too few can cause problems. Just as blood thinning causes an influx of oxygen to the embryo, too much oxygen too early can cause damage.

So much to consider. But his is a science makes sense to us. It has explained so much about what keeps happening. The fact that these people are pioneering the research from a teaching university is encouraging to me. He has the studies and evidence to back up his argument.

He admitted they are still learning so much about this aspect of RPL and that they are in no way there yet with the science. It pains me to think that in five or ten years they may have a solution to this but in the meantime we have to simply keep trying. In the meantime these treatments might help but they are not a cure. Knowing they are working hard on finding answers is encouraging.

And now we wait. We are deep in the middle of the 2WW. I don’t have a lot of hope for this cycle, I feel a sense of foreboding that 2014 is going to become a lot more complicated. But I’ll try to ignore that for now. Instead I will think about 2014 bringing a new energy, new direction, new hope.

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Is history repeating itself?

It is 5am on CD35 / 16DPO and I’m kind of freaking out. Not in a good way.

Where the hell is Aunt Flo? Why have I had 16 consecutive high temps and three BFNs? I have tested on 9dpo, 12dpo and 15dpo and nothing. Where are the cramps, the mood swings, the headaches? Instead I’ve got the hum in my abdomen, the sore boobs, the restless legs, the sleepless nights, the unusual twinges.

Historically all these things meant one thing. I fear history is repeating itself. These symptoms + late BFP + late implantation = miscarriage in my world. Nothing else.

This was supposed to be fixed by taking progesterone after ovulation as New Clinic suggested. They even said it would make it harder to get pregnant. I followed their instructions and stayed on it for a week, one week after ovulation. POAS. If BFN stop and AF will appear. Well AF is MIA. We had imagined this cycle was a bust. I was OK with that. I was already focused on the next.

They said it themselves. Late implantation and late BFP means over 90% risk of loss. Over 90% likelihood of chromosomal abnormality. The later it gets, the worse the outcome. Is this Super Fertility in action yet again?

Now I’m stuck in this strange purgatory. I never thought I’d beg to see AF. I’d take her over a late BFP at this stage I’m sad to say. I’m not ready to be told of the likelihood of miscarrying again. Not now. Not like this. I can’t go through this again so soon.

In the meantime I am hoping late ovulation this cycle just means late AF. That maybe my cycle is just out of whack. Maybe it’s the UTI and kidney infection I’ve been battling causing the raucous. I’m hoping that’s all it is. But I’m on the lookout for soreness on one side, as an ectopic pregnancy can produce late BFPs too. And I’ll test again on Monday, when 18 consecutive high temps only mean one thing.

6 is my lucky number. It’s not meant to happen this way. I knew it would never be easy, but to be filled with hopelessness and dread even before it begins isn’t how I hoped things would go.

Can of worms

So much has gone on in the last week. I don’t know where to start. Today I’ll try to recap the latest from all the recent investigations.

Test results are back. Here’s what’s been done, or retaken in the last five weeks to investigate the reasons for our multiple losses:

uNK cells via biopsy
Leukocyte Antibody Detection
HLA DQ Alpha Antigens
NK Assay Panel
TH1/TH2 Cytokine Ratio
MTHFR
LFT Liver Function test
AMH
FSH
LH
Prolactin
Thyroid Antibodies
Thyroid function
Anti phospholipid antibodies APA
Karyotyping (still waiting for that one)

Many of these came back normal. Four did not.

1) Endometrial biopsy came back borderline abnormal. uNK cells present, not super present, but enough to possibly cause issues. Treatment so far will begin with progesterone only, no steroids yet which I am thankful for. But steroids might be introduced after BFP, if that ever happens.

2) My anti cardiolipin antibodies in the APA screen came back positive. These produce an autoimmune response that prevents the fusion of cells that help the embryo to attach firmly and grow deeply into the womb lining. I’ve been tested for this before and it was negative so will be tested a third time to confirm it. In the meantime this will be treated with Clexane injections at BFP in addition to the 150mg aspirin for the increased clot strength I already have. This could also explain our RPL.

3) Leukocyte antibody detection panel also came back abnormal. This is when the mother’s body has an inadequate response to the growing embryo and will be unable to produce antibodies that protect the embryo from rejection and stimulate growth of the placenta. We haven’t had a chance to discuss this with our reproductive immunologist yet but we know from previous discussions with him that the treatment is LIT. White blood cells from Hubs are injected into my body to get it to produce blocking antibodies that will protect the embryo.

These three results are manageable. We can work with these. Sadly though they are all dependent on a BFP. But the next one is the one that could prevent us from dealing with the first three at all.

4) AMH. It plummeted from 12.9 to 2.1. In 8 months. For those of you in North America that’s 1.8 to .29. A shocking drop. This is most definitely NOT good. And we don’t know why. I spent much of that time pregnant, how can that drop so quickly? How can that number reflect my egg reserve if no eggs were spent for over four of those months? At this rate they’ll be no egg reserve by the end of this year. I am terrified. After hearing the news a complete meltdown of crying, destroying and dry heaving took place.

Unfortunately my GP who delivered the news doesn’t really understand the role AMH plays in fertility. She quite bluntly said I’m likely no longer a contender for IVF at all, especially since we won’t be able to start it until January (ie the drop is so rapid that next year will be too late). We’ve been at the top of the NHS IVF list for months but we put it off 1) because we were already pregnant and 2) because we were hopeful since I could get pregnant that IVF wouldn’t be necessary.

How could I go from being ‘super fertile’ to having nearly no viable eggs left in such a short time?

I frantically researched AMH when I found out, as I did back in January when a consultant flippantly said donor eggs was our only route (we had two BFPs since that day BTW) and its role in infertility and came up with some really conflicting results, particularly when women are able to conceive naturally. Our consultant at the RPL clinic advised us previously that AMH wasn’t that important if we can conceieve naturally and that drugs from IVF might actually do more damage to than good to someone of my RPL history.

The fertility experts we’ve seen previously, back when getting knocked up wasn’t happening, thought they could work with my AMH as it was in January. But they also sided with the RPL clinic, thinking it probably isn’t suited to someone like me. My GP thinks they will be even less willing to work with my new number now. We’ll find out on the 22nd October when we have our next appointment with them. In the meantime we are considering going to a private IVF clinic so we don’t have to wait. There is still so much I don’t know or understand.

My new Chinese Medicine practitioner (love her) was completely dismissive of the AMH results. She tells me that the hormone, released by the antral follicles, is only as good as the follicles are in any given cycle. Given that I recently miscarried she believes the whole system is still recovering and the hormones are out of whack and if we test again in a few months things will likely improve. Even though western medicine suggests AMH can never improve she has seen it in her clients. She stressed what is important is the number of follicles, more than the hormone reading. I seem to have a decent number of follicles but no one knows whether they’re any good or not.

Right now we are waiting for further appointments with the various four professional groups. Feeling like we are swimming in opinions and information. Not knowing what’s real, what’s important, what to do next. It’s hard deciding who to believe. The RPL clinic? The fertility clinic? The reproductive immunologist? The Traditional Chinese Medicine practitioner? I have no freaking clue who to trust and I have a hard time hearing my gut at the moment. I don’t feel like I have the full picture.

This just feels like a cruel joke. It seems not only does my womb make a habit of losing babies but now the very essence of my ability to produce proper eggs at all is in doubt too. And to top it off, the beating heart of our last loss, the one who seemed to beat the RPL, AMH and age odds, stopped because of an independent fluke abnormality. F U universe, F U.

The New Clinic Part 3 : B is for Biopsy

Part 1 Super Fertility
Part 2 Super Fertility treatment

A continuation of my appointment on Friday.

Right, so the biopsy. The very thought of it makes my eyes roll back into my head.

The biopsy is done 7-10 days after ovulation so the lining is thicker and so they can see how the womb is responding to what should be a critical implantation phase.

The first point of the biopsy was to test NK cells in the womb, something I will go into in another post.

The second reason was because it has been proven that the very act of taking the biopsy at that critical time after ovulation can be treatment in itself. It mimics the signal of implantation to induce healing and recruit stem cells to support the embryo in a following cycle. So in short, this can actually help to keep an embryo implanted as many of you ladies in North America know as endometrial scratching / biopsies are often performed prior to an IVF cycle to increase chances of success.

I was alone for the procedure, something I don’t recommend. I knew the Hubs couldn’t make it that day and we decided it was better to get it done at the right point in my cycle that they needed to rather than wait another cycle. So I went alone.

They explained the procedure starts like a smear test. A speculum is used, the cervix is cleaned, then a catheter is inserted and some cells get sucked off the lining. Thankfully it’s not a cutting type of biopsy.

But first a scan to check how thick my lining is. They won’t perform the biopsy on anything under 7mm. I told them a scan I had two days before ovulation determined my lining was too thin at 6mm but this doctor told me not to worry, that for sure it would be over 8mm by now. So wand goes in, he scoots it around. Lining? 6mm. Thin. Too thin. Oh wait. He finds one spot that measures 6.9mm. That spot is up and over and the furthest point away deep in my uterus. It’s still too thin for his standards but he says he’ll do it considering the look of desperation on my face and that I’ve travelled over 3 hours for it. But he tells me to prepare myself because this is going to hurt.

We always get the difficult uterus on a Friday afternoon, he says. Prepare yourself.

Meanwhile he’s making small talk asking me what I do for a living as he preps the tools for the biopsy. I can barely hear the questions over my pulse in my eardrums. I’m terrified I tell him. I’ve had a horrendous HSG procedure that almost knocked me unconscious with pain. He recognises how that could be an awful experience but carries on with fixing the speculum. He then explains again showing me a what looks like a 20″ catheter how far he’s got to go to get that thing in the right place. This is where most women get their sample taken (points to area just inside opening of womb). This is where we have to go to get yours (points to uterine no mans land). This might take a while and you are going to feel it.

Thankfully I had done my research unlike prior to my HSG. I was well aware this could hurt. So I took 800mg ibuprofen about 45 mins beforehand in addition to half a Diazepam. Thought I was going in prepared. Both did nothing.

First attempt at getting the catheter in doesn’t work. My uterus is too tilted, too awkward. Can I move down a little. Can I try a tilting my pelvis. Poked and prodded but still no luck.

Ok time for the bigger speculum. We’ll be right back. Nothing like being naked from the waist down, inspection lamp pointed brightly at your crotch, your feet in stirrups when everyone evacuates the room to fetch larger tools.

Bigger speculum is right! How they got that thing in there I will never know. But that was the easy part. The next attempt at the catheter. It’s going in. And in. And in. And this I can feel. It gets progressively worse as it goes in. Eventually it reaches it’s final destination and what I can only describe as pulling begins. This must be the suctioning. See on the screen this is the catheter and this is where we’re taking the sample. No I do not want to see just get the thing done! He tells me he counts down from 10 and at each number he pulls the tissue out with a yank.

After much fussing around he’s got what he needs. Or does he. Not convinced he asks if I mind if he checks the sample before removing the speculum. There’s a chance we might have to do this again. Thankfully though upon inspection he thinks we should have enough.

I’m warned that I may spot for the rest of the day and my period will likely come a few days early and I’m sent on my way.

Consensus : Painful? Yes. Endurable? Yes. As bad as HSG? Definitely not.

The New Clinic Part 2 : Super treatment for the Super Fertile Female

Part 1 Super fertility

I have a warped vision of my super fertile super hero costume now : Super Fertile Female! A cape in the right shade of menstrual blood red. A crown shaped like a large uterus. Armed with pellets of Cyclogest, syringes of Clexane. Fear not little embryos, citizens of Lisette’s unselective wasteland of a womb! Super Fertile Female is here to help!

Something just seems so wrong in the terminology. I’m beginning to hate the term. Makes it sound like a good thing. It’s not. There is nothing super about this at all.

So what do we do to sort this out super fertile business?

1) An endometrial biopsy. I plan to go into this a bit further in another post but as far as this clinic goes, the biopsy is considered treatment in itself. It helps to mimic the signal of implantation to induce healing and recruit stem cells to support the embryo in the next cycle. Bloody awful thing to endure but if it gets us what we want then I would do it every day for the rest of my life.

2) Then plan for me is to start a course of 400mg progesterone a day between ovulation and AF, in my case from day 22 for a week then if BFP carry on taking it, if BPN stop taking it and AF will appear. We do this for 3 cycles only because it can make it harder to fall pregnant and they don’t want to waste time. But the goal is to prepare the lining for reception and then selection at the right time. Progesterone will apparently enhance the lining of the womb. It will help to make the phase when the embryo and lining meet and size each other up a more succinct and efficient and selective process. Therefore resulting in no more late BFPs and hopefully no more losses.

3) If I’m lucky enough to pass stages 1 and 2 with success, after the first viable scan I’m to go on Clexane. This isn’t for its blood thinning attributes but because of the nurturing qualities Clexane provides to the womb in the early stages of pregnancy. It apparently activates growth and helps placenta to grow better. Who knew?!

Next cycle we are going to put this into action. Not getting hopes up too quickly as we are well aware this could take some time. What freaks me out is time is something we are running out of.

The New Clinic Part 1: The trials and tribulations of the Super Fertile.

Part 2 Super Fertility treatment

Ok you ladies interested in this super fertility argument let me fill you in on my day. My mind is racing with all this new information but I’ll try to get the gist down here in a way that’s hopefully legible!

Today I had my follow up appointment (previous appointment discussed here) to investigate NK cells in my womb lining with a biopsy and to discuss the suggested prognosis that I am someone who is “super fertile”. I will go into the NK cells in another post I think because this super fertile thing has got me all riled up.

The idea of super fertility suggests that the womb is overly receptive to embryos but is not selective enough. It allows embryos that aren’t developing properly to implant. This results in miscarriage.

When I first heard this idea I thought, great does that mean we’ve produced no good embryos in nearly 3 years? Are all of them destined to be chromosomally abnormal? That could mean huge money in PGD IVF etc.

Apparently not. And apologies for paraphrasing in my lay woman’s lingo, it was difficult to keep up with this guy. He knows so much and was throwing these amazing ideas at me non-stop. I was also all by myself because hubby couldn’t get away from work to be there today. A lot of notes to take, a lot to digest!

So it was explained to me that no not all our embryos are shit. Some are more flawed like our last loss (triploid) but that is a random occurrence. He questioned why the womb allows a deficient embryo to implant at all. A process called decidualisation, the cells tailored response to abnormal embryos, is not occurring.

He carried on to say that actually most embryos are formed with some element of abnormal chromosomes in it. With a selective nurturing environment the womb knows how to respond to enable the healthy chromosomes to take over and flourish. In a womb that isn’t functioning as it should this step is missed and subsequently this allows the abnormal cells to grow further which results in miscarriage.

This struck a chord in me. No one, out of all the 8+ consultants we’ve seen so far, has been able to explain this to me. Allow me to clarify. For our first four implanted little embryos I never got my BFP until 5 weeks or later, then a few days or weeks later I would miscarry. My hcg rose too late. This I’ve learned today is a sign of an impending miscarriage, the late rise of hcg. But the late rise of hcg is also indicative that the critical stage, at what is meant to be day 21-23, when the embryo and lining make contact and suss each other out, is delayed, resulting in late implantation. This isn’t supportive of the embryo and the selection process that should occur wasn’t given the appropriate chance to do so and the womb begins to shed its lining because it’s all confused and voila. Loss of pregnancy.

When I asked other consultants about why I might be getting late BFPs and could that have anything to do with a slow rise in hcg I was told I was delusional. One RMC consultant told me I was just getting multiple false positives and to go get donor eggs because I was clearly too old for this.

I feel a huge relief that at last someone can potentially account for our losses. Even down to the details! It is something I can buy into. For now anyway. And when I reread my notes I can see how much sense it makes.

So to break it down here are the main observations for women with recurrent early pregnancy loss like mine explained as super fertility, as far as it was explained to me:
1) they fall pregnant easily
2) embryos that shouldn’t implant are implanting. Why? Flawed process of womb preparation
3) high quality embryos without a good response are not adequately supported

Crazy huh? I find this fascinating and so unlike anything I’ve heard from other clinics. I have so much more to say but your eyes are no doubt drying out from reading all this crap so I will continue the details tomorrow. Thanks for reading today

“Super Fertile”?

Now that I’ve reached the end of my conventional recurrent miscarriage clinic journey and they’ve tested for everything they could, I’ve more or less come up negative for everything that could cause recurrent pregnancy loss. Our case is now “unexplained.” I guess medically speaking it’s a good thing not to have something wrong with me but strange as it sounds I want something to be identified, something to be wrong with me so it can be treated. I need answers.

The next step in my journey has lead me to a specialist Dr. Q who is so different to the other RMC’s. The primary focus is the lining of the womb. She’s told me I’m a textbook example of someone who is “super fertile.” At last, a possibility, something I can hold on to.

Click here to read about the Super Fertility Study

A normal womb will be selective when approached by fertilised embryos and may even take six months or more to choose the best quality one to implant. Apparently my womb isn’t selective enough and allows any old embryo to implant regardless of its quality or viability. A problem with the lining of the womb will cause this to happen.

The proposed treatment protocol is a course of 400mg progesterone daily started from ovulation for either a week or BFP and to continue if BFP. The good news is that the progesterone will increase the thickness of the lining of the womb which will make good embryos really work at implanting and the bad embryos won’t have a chance. The bad news is that the progesterone will make it harder to get pregnant.

But my main concern at this point is could all five of our fertilised embryos really be that poor quality? They won’t know for sure. If it’s a case of constant chromosomal abnormalities then PGD IVF might help our chances.

But Dr. Q tells me that it might not be that simple. She suspects I might have the presence of high natural killer cells in the womb which will make a nasty environment for fertilised embryos. The cells increase blood vessels and oxygenation which isn’t what you want when fertilising an embryo. Who knew? A simple biopsy will be taken after ovulation to check the levels and if they are higher than normal Prednisolone will be prescribed.

Click here to read about the endometrial natural killer cells study and recurrent miscarriage

So it’s the next piece of the puzzle. The next thing to try out. Keen to get cracking.