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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6 is no longer my lucky number

No longer positive. 5 weeks and 3 days. Our sixth pregnancy is over.

I knew from the very moment I saw that late weak positive there was no hope for the little one. No hope for me. Doomed from the start.

Infertility has played yet another cruel joke on me, spurring me on with progressively stronger positives and symptoms before taking it all away. Allowing my telltale sign–the beautiful buzzing abdominal hum I get each time– to rage, filling me with hope and promise and love. Then to stop it all in an instance. There aren’t many experiences quite as deflating as watching BFPs progressively fade to nothingness.

And now I get to wait for the full sensory experience of my tormented cramping womb screaming out in anger as the sweet pea begins to slip away from inside me. How long I have to wait for that I have no idea.

I have been through this so many times but I still, somehow, relentlessly add up all the things I have done to potentially cause this loss. Someone has got to take the blame. It has got to be me.

And now, cruelly, I am beginning to grasp that I will never ever have a child.

I am a fool for ever thinking this might work one day. Shit eggs + shit womb = no hope in hell. There’s no point in proceeding with egg donation if I can’t nurture a baby in the wasteland that is my womb. And there’s no point in surrogacy if I can’t produce a single decent egg for someone else to carry for me. I will likely never bear a child or contribute to the making of one. I can only contribute to death and loss.

This is me not coping. This is me one inch away from burning down my house, getting on the first flight to Nepal alone with nothing more than my passport, or binge drinking myself into a coma. I’m not sure which one.

As I commuted home last night, conscious of impending trauma, after a week at my new job where I have to be disgustingly ambitious, motivated and keen, no one gave a shit. Why should they. They don’t know my story. I wanted to shout at them all “I AM LOSING MY SIXTH PREGNANCY, BE NICE TO ME!!” but I didn’t. Instead I allowed them to push me and shove me and step on me as they do everyday on my journey home. Instead I listened to my colleagues talk about how drunk they got at a fancy dress party when I was was busy sobbing myself to sleep. My story does not matter to them or to anyone. It only matters to me.

Nothing else matters anymore besides this story. I have no feelings for anything or anyone. I feel empty of everything but hate. I have never felt more alone in all my life. I can’t relate to anyone.

Regret, guilt, rage. I brought this on myself. If we had only started earlier, if we had only not moved across the world at a time when people start having families, if only we had not put ourselves, our ambitions first. We wouldn’t be in this situation. Running out of time, out of options, out of money. It is my fault and I have to face the consequences for the selfish naive decisions of my foolish younger years. Nothing will make me feel differently about these choices. I deserve this punishment.

Today the only thing getting me through my day is the idea of heavily self-medicating as I cry myself to sleep. Dosing up enough in hopes that I sleep through the miscarriage. How I tackle tomorrow I have no idea. Oh what great things I have to look forward to.

One step at a time

It’s been a busy couple of weeks and I have been in a bit of a funk for most of it. I started writing several posts but never published them. I’m just not feeling it, I feel like I have nothing to contribute. I feel like I’m all doom and gloom these days and trying to be positive is just not working. So rather than bore all of you with my mundane drivel I’ve been hanging low.

I have been reading loads of great blogs but I haven’t even really had the opportunity to comment on them, which I would like to do. So I’m going to try to make some time to do that tomorrow. I also drastically need to update my blogroll because I think I am following in the region of 200+ blogs at the moment and they all deserve recognition. I promise to do that soon.

On the upside I had my last day at my old job the other day. I am finally free of the Sweet Pea Thief. And it feels damn good. I immediately felt the huge weight lifted off my shoulders. It could not have come soon enough. The constant drooling over her by others nearly did my head in. I literally sat at my desk with my headphones on max so I didn’t have to hear the crap they were spewing over her. I even managed to skirt my leaving drinks, and saying goodbye to her and the rest of my colleagues because thankfully my last day was spent entirely in meetings and one of my particularly needy clients wanted a handover meeting as the last thing I did that day, which meant I was nowhere near the office on my last day. Couldn’t have worked out better if I had planned it.

I had one day off in between jobs which I spent getting a massage, going to the spa and having lunch with a friend and her brand new puppy who is pretty freaking cute right?

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I know, she’s crazy cute. It was a pretty great day. I felt rested and ready for the new job the next day.

And so far the new job is pretty good. Despite a few very stressful days last week when I was kind of working for them while also working for the other place (naughty I know), for the most part it’s going well. It’s always a scary transition isn’t it, but the people and environment are nice and I am busy (in a good way) right away. I have had plenty of “what am I doing” moments but I guess these are to be expected when going through this kind of transition. Being anonymous feels great. No one there knows my story except for a super good friend of mine who started working there this week too. She happens to be one of the most supportive people in real life right now. And I even like my view on my commute home.

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Not bad right? So everything seems somewhat positive, I am feeling good about that side of life.

I had my second LIT treatment yesterday. This one was far more painful than the first and my skin bubbled up in hives immediately. This apparently means it’s working. I was far too annoyed to listen to that because I was too busy watching the dumbass nurse eject at least £200 worth of the Hubs white blood cells onto her lap when it was meant for my arm. Stupid stupid fool. Today I’m bandaged up and sore and glad it’s over. I won’t need another one for 6 months or so.

In the meantime, this cycle was pretty much a bust. I felt like it was a bust from the very start. Just wasn’t feeling it. I tested on 9dpo and 11dpo and both were white as snow. So I came off the progesterone support so AF could make her appearance. I’ve been feeling pretty crampy and emotional and was just riding it out for AF. I was actually OK at processing the disappointment this month. On one hand I felt slightly relieved because next cycle I would officially qualify for maternity pay should I be lucky enough to fall pregnant again, but on the other hand it was yet another sad result. I had a good cry that evening and felt a bit out of sorts but was already looking ahead at what I would do differently for next cycle.

Viagra suppositories. Yep, my womb lining needs all the help it can get and a few of those puppies can do a girl’s lining wonders. I was poised on “click to buy” online when I decided to do one more test this morning for the hell of it, purely because Viagra is expensive and I don’t want to be out of pocket for something I might not need for a while. Anyway, I was confused as to why AF is still nowhere to be seen when my cramps have been pretty full fledged for 5 days now. AF is only one day late but this is not unusual, especially after last cycle’s trauma.

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Today is 15dpo. Sorry for the shit pic but can you see a second line? Because I can barely see a second line. In fact, I totally missed this second line. First thing this morning after I peed on this stick and saw within thirty seconds that it was stark white, I went back to bed. It was only a few hours later when I was having a pee when I glanced over at it and saw a super faint not even really there second line. Convinced this was an evaporation line, I quickly sought the advice of Doctor Google who says that an evaporation line is a different colour to the test line. This second line is pink. Pink like the test line.

Commence freak out. I had been really successful at ignoring any symptoms and not allowing any symptom spotting to occur during the 2WW this cycle. That is, until my telltale symptom kicked in. The raging super quick pulse I get in my abdomen. This has only ever meant one thing. And when the pulsating hum hadn’t stopped this morning I ran out to buy a digital test expecting it to be negative. Instead I got this.

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I’m sad to admit it but we didn’t even smile for each other. There were no hugs or high fives or elated kisses. Instead we muttered a few “oh dears” and sat in silent shock at the result sitting before us. What the hell do we do now.

A faint positive at 15dpo is considered late implantation. Consistently, the last five pregnancies have all been late implanters. All five pregnancies ended in tears. This has been a critical part of my diagnosis with the unfortunately termed condition known as “super fertility.” I know all too well what a faint double line means at this late stage. I have been off progesterone for four days now so who knows what havoc this has caused for my lining or for the poor little embie trying to make a home.

I could list all the things that I have done wrong in these two weeks. For someone who is acutely aware of what to do and not to do in the 2WW I have been pretty lame at it this cycle. My gloom got the better of me. Because I expected things to fail this cycle I lived like they had. I could have stayed on the progesterone, and messed up my cycle for a few more days but provide the support the embie needs. I could have not gone to the spa or spent all day getting hot, then cold, then hot, then cold. I could have eaten better or slept when I needed it or gone on the steroids I’ve been prescribed but been too reluctant to go on. But there is nothing I can do about any of that now.

But I guess on the flipside there are a lot of things we have done differently this time around. Since our last loss I’ve been diagnosed with a clotting disorder, immune issues and a defective womb. And we are / will be actively treating all these things. Aspirin, progesterone, LIT, intralipids, clexane, prednisone, chinese herbs, acupuncture. We can only hope that one / all of these treatments might tip the scales this time.

I am angry that a moment that should be full of happiness and celebration was replaced with impending doom, fear and raw panic. How can I stop feeling this way? How can I turn this around? How does one do that exactly?

Will history repeat itself? I don’t know. There is nothing I can do to change the outcome of this. All I can do is try to look forward. Try to be hopeful. Try to take one step a time. The phrase has never been more poignant in all my life.

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.

Immunology schmimmunology

We’ve been to see our reproductive immunologist to fully discuss our test results. From an immunological perspective it turns out there are a few more issues than we initially thought.

Here are the bullet points for his diagnosis :

• Raised NK cells in general blood stream
• Raised NK cells in the womb lining
• Leukocyte Antibody Detection panel too low

Here’s what he’s suggesting as treatment :

• 25mg Prednisolone daily from CD7 to subdue the NK cells
• 40 mg Clexane daily from CD7 to encourage the right environment for implantation
• Lymphocyte immunisation therapy LIT (an injection of the Hubs white blood cells under my skin) for my womb to produce antibodies to protect the embryo from rejection and stimulate growth of the placenta. 2x injections 3 weeks apart starting on 21 October, with top up shots every six moths afterwards
• Intralipid infusion (a soy & egg yolk based drip that’s intravenously injected into my bloodstream) once a month, to subdue the NK cells and to stimulate the immune system to remove danger signals that can lead to pregnancy loss

Any of you out there doing this? I’m feeling slightly daunted. Feels like a lot of weird shit is about to be thrust into my body. Except for the LIT. I weirdly find the concept of injecting his blood into mine kind of sweet. Like we are bound by some invisible commonality. Sharing blood is as fundamental as it gets right? And baby makes three? We’ll see…

We didn’t even tell the RI about the AMH situation. I don’t think I could’ve handled much more on that particular afternoon. But also the Hubs is so dismissive of it. I’m trying to put my AMH out of my head for a little while as I wrap my head around the rest. But it’s the dark shadow in the corner that doesn’t go away. For now it can stay there until I’m ready to deal.

We do what we gotta do. Bring on the moonface, the belly bruises, the allergic reactions, the hours spent in a doctors office on an intravenous drip. I’ll do all this like an automaton and then face that bitch AMH. We know how many thousands of other ladies are doing this and so much more everyday if it means the get to have their sweet pea at long last.

Bring it. I’m ready.

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.

Happiness is

Happiness is getting the karyotyping blood tests performed by your GP for free instead of forking out cash privately.

Right now that’s how I can measure my happiness. In blood tests that save me £600. Sad but true.

Doesn’t change the fact that I’ve just forked out over £1400 on other tests privately but hey we’ll take whatever we can get!