The New Clinic Part 5 : A fresh perspective

Part 1 Super Fertility
Part 2 Super Fertility treatment
Part 3 The Biopsy
Part 4 NK cells

I feel a bit of relief having been to this new recurrent loss clinic. Just hearing that they can account for my losses, whether it’s true or not, is a relief. They’ve explained reasons why these things might be happening when other clinics I have seen just shrug their shoulders and send me on my way with unexplained recurrent loss. So I suppose any answer, whether it’s 100% accurate or not is better than no answer at all.

What struck me most about this place is how they stand out from other clinics. How their perspective is so different. They are not just focused on all the usual blood clotting disorders that fit within the tiny NHS parameters, they actually assess the bigger picture.

In fact they were dismissive of the blood clotting disorders generally and of the recurrent miscarriage clinic I’m seen by currently. And for very well explained reasons that I couldn’t argue with:
1) most RMC patients show no cause for their losses when tested within the NHS loop of blood clot testing (in fact most go on to have a healthy child with or without medical treatment)
2) the abnormalities identified by standard RMCs ie blood clotting also represent themselves in women who have had a healthy pregnancy and child
3) the disorders identified if any aren’t dangerous in normal life, so why are they deemed dangerous in pregnancy? It is commonly understood that blood levels are raised during pregnancy which is why testing during pregnancy is avoided since results become skewed
4) why aren’t women who suffer from recurrent miscarriage more seriously ill with diseases or disorders if there is something fundamentally wrong with their blood?

These guys believe the conditions in the womb far outweigh what else could be happening in the blood. That these conditions need to be perfectly synchronised for success. Skip one step or miss one beat and the result could be catastrophic.

Makes you start to think outside the box huh? I think it’s kind of what I needed to realise that maybe I don’t fit in the generic recurrent loss box. Or that maybe there isn’t a one size fits all diagnosis for everyone. That everyone’s situation is unique and deserves to be assessed individually so that a unique treatment plan can be put forward.

Interestingly, these are the guys that are publishing reports and studies and findings, pushing the boundaries of what’s known in the recurrent miscarriage medical world. It’s these guys I want to talk to, who I want looking into my problems. Their zest and enthusiasm is contagious. I want to be as hopeful as they are. For now at least I will try.

Advertisements

The New Clinic Part 4 : Uterine Natural Killer cells

Part 1 Super Fertility
Part 2 Super Fertility treatment
Part 3 The Biopsy

In addition to being investigated for having an insufficiently selective womb, last week’s biopsy was taken to determine if NK cells are elevated in my womb lining.

Natural killer cells I’m told are good, despite their name. They appear apparently in the womb at the time of implantation (which is why they do the biopsy a week after ovulation) and determine whether the womb is short on steroids to support a pregnancy. You can read more about what they do here. And there’s also a study I found interesting.

Apparently if the tissue taken from the biopsy shows that there were too many NK cells at the surface of the lining then treatment may be required to reduce the number of cells that might be impeding growth of the embryo.

Treatment in my case would be with steroids. Prednisolone I’m told reduces the amount of oxygen in the womb which subsequently reduces the amount of blood vessels. Apparently excess oxygen and blood vessels are harmful to a developing embryo and the goal is to create an oxygen free environment, more like a normal womb.

I won’t even go into the huge list of side effects from the steroid treatment: moon face, weight gain, migraines. Won’t worry about this until we get results. All are obviously worth it if we get to bring a little one home one day.

I’m meant to have blood tests for NK cells as well under investigation by a private doctor. Not the uterine kind, but the kind circulating in the blood. There seems to be some disagreement between immunological camps as to whether general blood NK cells are harmful to pregnancy. That’s a whole other issue, whether we decide to pursue that form of testing. For now we will focus on the womb lining kind.

Who knows if this will be another battle to overcome. We’ll find out in four weeks.

Have any of you been tested for uNK cells and if so what kind of results did you get?

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

OPK – not today

20130823-124342.jpg

There she is, that cute little OPK happy face smiling back at me. My little eggy just begging to be courted.

Sadly she’ll be flying solo today.

Yes a conscious decision to let this special monthly moment go by the wayside.

It’s freaking killing me but we have made and unmade this decision several times. The plan, I’m reminded, is to wait for tests to be performed and results received before we try this again.

Am I nuts? It has been over 2-1/2 years since these opportunities have been deemed golden and put to good use. Watching this one pass us by going to waste is a very sad thing to witness.

But I guess what we are after are answers. Next week I’m due to have a biopsy to test for NK cells and to test out this super fertility assessment. We’ll also be doing karyotyping and other immunological testing, many of which I explained here. For all these tests we need to be unpregnant. We are doing this to prevent more losses, I have to keep reminding myself.

But there’s the part of me that wants to throw caution to the wind. Part of me that wants to just go for it and see what happens. Was it all just bad luck? Is there really a problem? Could it work maybe just this once? Is there a good egg in there that will bring us our little bundle? Is this one, is she the one?

I guess the bottom line is we are too stunned and scared to find out. Still sore from recent losses. Still aching and exhausted from all the trauma. And so we’ll be sitting this month out.

I’ll be watching and hoping to see some smily faces put to good use out there in Fertility Cyberland ladies! Just hope I get to put one of my own to work again one day soon.

Recurrently normal

One of the lead consultants at our recurrent miscarriage clinic said this to us during an appointment to discuss the outcome of our fifth loss:

“You think you’re special? You’re the only one you know going through this? Well I’m here to tell you that you’re not special. You are no more special than anyone else out there in that waiting room. There is nothing unique about your experiences.”

Phew, glad we cleared that up! It’s great to have it confirmed that no one actually cares about the specifics or individual nature of my five losses besides me.

“And you are here to ask why this is happening to you, what is so abnormal about you that this keeps happening? Why can’t you have a normal pregnancy? Well let me remind you that the sheer act of getting pregnant and carrying a baby to term is in fact actually ‘abnormal’ and the act of miscarriage is the ‘norm’. So don’t be upset if you miscarry multiple times, or be surprised. That’s actually how it’s supposed to work. Think of all the things that can go wrong! It’s a miracle babies are even born at all!”

Oh! I get it now! So the 20 year old from two doors down with the enormous baby bump and two little kids who smokes three packs a day and chugs a two litre bottle of cider in one sitting? She’s abnormal! And all those ladies with baby bumps I pass on the sidewalk everyday. Totally not normal. And all those kids in the park. Nope. And all my friends who are nursing or tending to their little ones. Definitely not. They’re all abnormal! What a relief!

Well now it’s all clear! I can see now how the possibility of never having a child is quite a realistic, normal outcome. Merely going along with nature’s way. I feel so much better now thanks!

Dickhead.