much, much later

It’s been a long time. So many of you have moved on and have a baby (or even two!) now. I’m very happy for you, I truly am. But also feel stuck in the same place as almost two years ago.

Between moving to the other end of the world an the butt pain becoming too annoying to bear, we stopped trying for a while (as in, back on BCPs). And for a while I was fine with that. But eventually I asked for a referral to Big Teaching Hospital — the wait for talking to one of their endometriosis specialists was 2+ months, but worth it, I think. My doctor seems very experienced (or maybe it’s just that I accidentally found out that she has over 200 papers on the issue, that always helps in impressing a scientist ;) and I feel like she gives me a realistic understanding of what might work and what is less likely to.

The odd part is that, apart from my history, things look okay on my side. Follicles, check, lining, check, ovulation, check, clean uterine cavity, check. So the main data point we’re waiting for is the next SA — if it has significantly improved over the previous ones, we’ll try IUI, otherwise it’ll be IVF. Which is not only much more expensive, but also not covered by insurance in the slightest. We’re lucky in that we have insurance that would cover part of the IUI costs — but if that won’t work for us, it seems a bit like all-you-can-eat: sounds good at first, but perhaps not what you really need. I have no idea how we’d finance IVF, but that has time for later posts. I’ll try to slowly find my way back into this, and, admittedly, I’m not keen on trying to open that particular can of worms.

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(breathe out)

Luckily I could get an appointment this week for my scary lump. My doctor listened to my report, did an exam and then an ultrasound. She said she thought it felt like a cyst, which should show up on the screen as a “black hole”. But there wasn’t any. There wasn’t anything irregular to be seen at all. Phew. My doc said it might be something fibroid-y, which she wouldn’t necessarily see on the u/s. She’s not a breast specialist so she gave me a referral, to make sure, but I’m feeling very relieved. (Do I have to tell you that I hardly slept last night?) Hoping, of course, that the specialist — whom I’ll only see in mid-April — won’t find anything worrisome either.

I also told her about my theory of inversions, endometriosis and exercise, and she seemed a bit skeptical, but said that perhaps, a combination of factors could cause this (and I know many women that practice the same sports I do, and feel fine), and that she would ask other patients about their exercise if they came in with similar complaints.

Phew (again).

Inversions

Regular readers will be familiar with my burning buttocks pain. Pain shooting through my spine and burning in my buttocks, during menstruation but lately stretching throughout the entire follicular phase. Which I assumed to be caused by endometriosis, given my history, though an MRI could not find anything. Pain that had me seriously wonder how I was going to lead a normal life with, how I would be able to work, especially standing up.

I’m still slightly afraid of saying anything, for fear of jinxing my luck, but it seems I have found a solution. And I’m not talking about prescription-strength painkillers. This could become a long post, but bear with me.

Over the holidays I re-discovered a book about yoga, which I had bought years ago, with the intention of starting, but then I met H and everything changed ;-) and when we moved here I left it back as I wasn’t actually doing any yoga. But a few months ago I bought “Fully Fertile” and began yoga practice they suggest, and so I looked up some poses. Now, whereas Fully Fertile just recommends not to do inversions during menstruation, this other book, in true spirit of my fellow countrymen, provides a more detailed discussion of the issue, finishing with the statement that endometriosis was a clear counter-indication for practicing inversions during menstruation.

Point taken, I thought. Probably because of retrograde menstruation, a theory of how menstrual flow back into the peritoneal cavity could cause endo. I had heard about it when I was first diagnosed, and basically dismissed it because it could not explain all cases of endo. (For example, the first documented case of a woman with endo happened to occur in a patient without an uterus. No retrograde flow here, clearly.) Anyway, I had stuck with the Fully Fertile instructions, so I thought this was not an issue.

Half an hour later, it hit me. While I had avoided inversions, I had been practicing Ai.ki.do, and all those rolling movements could well have the same effect. If you’re wondering why I practiced despite all this pain — exercise actually helped relieve the pain. My first bout of endo, which was finally diagnosed one day before I had major surgery to remove it, started about 9 months after I began practicing Ai.ki.do. Then I rarely practiced for a long time (for other reasons), was on a progesterone-only pill, and pain-free. But last spring I took it up again — somewhat reluctantly, because, you know, I could get pregnant the following month and then I’d have to stop (I wish). And, over the summer, my lovely burning buttocks pain surfaced.

I had dreaded getting my period during the holidays, in anticipation of yet more pain. But, due to travels and sickness, I had not done any Ai.ki.do. And I was in so much less pain, it was unbelievable. This time around (today is CD3), it is even better. Not quite pain-free yet, but if you had promised me this a few months ago, I would not have believed it. And all that because of less exercise? Even if this does not get me pregnant, I’ll take it, any day.

Maybe I got it all wrong. It could be the EPO finally working, or pure coincidence. But this connection is too strong for me to ignore. Oddly enough, I could not find much on the topic online. I’ve read this article about yoga, which supports that you should not practice inversions during menstruation, but claims that retrograde menstruation, and therefore endometriosis, are not an issue. Frankly, I don’t buy it. My body tells me otherwise. And I think this is the key point here. I have to learn to listen to my body. As a scientist, I would love to have well-designed, controlled, double-blind studies for whatever medical or reproductive problem I worry about. Apart from the fact that these simply often do not exist, they can only tell us what works in the majority of patients (ok, actually in a small set that hopefully is representative…). But, identical twins aside, we are all slightly different. We suffer from different side effects, don’t respond in the same way to drugs, hell, some are drunk after one cocktail and others still standing after 3. With badly understood problems it seems to be even worse, whether that be endo or “bad eggs” or what else doctors may have thrown at you, shrugging, not really knowing what to do either.

(It seems like there should be conclusions here, but that feels premature. We’ll see over the coming months if my pain stays away. I’m hopeful. And that is a wonderful feeling.)

clarified (somewhat)

At our follow-up appointment, my doc had found out that the “unclear” parts of the MRI were so because of all the scar tissue / adhesions I have from my previous surgery. Which means that they cannot see much in this area. The overall conclusion remains, no big bloody masses or anything to be seen, which is good. Whether there are small amounts of endometriosis or not they cannot really say, as far as I understand. Nor where my pain comes from — my doctor thinks it could be from the adhesions, but what I find weird is that it mainly occurs during my period, and to a lesser extent until ovulation — to me this screams estrogen-dependent. Anyone with adhesions, or other “weird pain”, has had this experience?

She had also finally received the SA results from last year — oddly enough, on that report morphology wasn’t even mentioned (where I’m from, you don’t actually get any records unless you, or better another doctor, specifically asks for them). So now I don’t know whether they tested for it at all, and hence whether the new results are worse or just “another factor we didn’t know about”. Not that this would help, I guess… H, although very skeptical about anything that is not traditional western medicine, has agreed to start trying a supplement for male fertility. Let’s see if that brings us anywhere. It cannot hurt, I suppose.

The best news of the consultation was that the doctor thinks we could be successful with IUI. Of course it is hard to predict anything as nobody knows how my endo (if it is there at all) affects my chances of getting pregnant, but based on his numbers she would suggest us to try 4 rounds of that, and then think about IVF. One of the insurance plans at my next job would cover 50% of IUIs, including the drugs, which would be a start. No IVF coverage, though… sigh. I’m not entirely sure how it would be with my insurance here, and unfortunately the only clinic that works with it was not very impressive (they wrote the wrong diagnosis on the SA, and needed 4 attempts to put the correct name on the invoice).

I think in part I’m still grieving the idea of conceiving naturally, so perhaps it is not the worst thing in the world if we have to wait a bit, until we have moved and settled in our new location. Still, it hurts me that some friends will probably be preparing for the arrival of #2 by the time we even have a chance of conceiving #1 (and we all know that this does not mean we’ll actually have a baby 9 months later). I got though most of this month fairly well, given my IF-unhappiness and the anniversary of my mom’s death in late November, but last Friday I just lost it, and all I could do was cry on the way home. A BFN on Saturday morning didn’t make it any better, but HP7 was at least distracting, and afterwards we went for drinks with friends. In a place that used to be super-nice with great food, but now has new owners and is… less nice. But more expensive. Sigh. This will get better, right?

radio silence

Thanks for checking in — it’s lovely that you guys (ok, girls) care about me so much! Sorry for vanishing without a word — my computer decided that it was a good time to break down, even though I did not take it anywhere near the big magnets. Thus, no updates. Also, I’ve been busy like crazy, and we’ll have a bunch of guests next weekend (which I’m very much looking forward to, but also slightly stressed about), so that I don’t know how much time I’ll have for blogging until after that.

So, the executive summary of the news:

  • I was tested for gluten-sensitivity related antibodies, as this is often found in endometriosis patients. Negative. Any idea how much this means, in the sense that my symptoms could still improve if I cut out wheat?
  • The MRI is unclear. Lovely. Well, I guess it could be worse and have shown huge problems, so I’m trying to look at the bright side… My doc wants to talk to the MRI specialist again to make sure they look at the right places, so there might be an update lateron.
  • The SA was worse, unfortunately. 5% morphology (usual threshold 12-15%), plus motility problems. As far as I remember, last time they only told us about motility problems, so that would be another blow.

I’m not sure how we’ll move on from here. Since my endo surgery years ago we had always assumed I’d be the one with the problems, but now it seems to be both of us (ok, technically we don’t even know if my endo is interfering with my fertility, but it’s quite possible, and the pain is enough of a problem as far as I’m concerned). I’ll schedule an appointment with my doctor and my husband, so that the three of us can sit down together and try to sort this out.
Somehow I had hoped that the SA would bring us good news. H was disappointed as well, though he’s trying not to show it much, and he’s so stressed with work-related things (which cannot be good for his swimmers, but we’re going in circles on that one) that the denial phase works well.

radio noise

All in all, we had a good weekend. With two dinners with friends — and drinks, because, on CD1 and CD2, why not? My strange CD-1 pain was almost absent, but CD1 was rather bad, with burning pain inside my buttocks for a couple of hours. Weird, my dear body, isn’t it? Today I went for the MRI, and last week H did another SA, so we should be getting some results this week. I hope that they’ll be good or, at least, not too bad.

evening primrose oil – advice?

The title says it all, I think. Have you used it? Specific recommendations on dosage, when to take it — according to this article only in the follicular phase, as it may induce cramping — or any other helpful advice? (Brands likely won’t help much unless you live in Old Europe.)
I’ve read that it can help both with endometriosis (fatty acids making cell membranes smoother, relieving adhesions etc.), and with getting pregnant — and, if you believe the pages that sell it, it’s amazing for all aspects of health anyway. I asked my doctor about it and she said that it won’t hurt, and that fatty acids are important (and some missing from the local diet, apparently) so I’ll try. If I get better (or pregnant!), great. Regarding my odd pain we’ll do an MRI during my next period and see what that shows. Of course the problem is that it may show nothing and there could still be endo… but she wasn’t very keen on jumping to a lap right away, and I do understand the “the less invasive the better” point of view, particularly when we’re not sure what we’re dealing with. She also did an u/s and I had already ovulated, and my lining was transforming in the way it should. I think that our timing was not bad this month, but honestly, after all the other months with ok-to-good timing, I don’t have a lot of hope that I’ll get pregnant this time. H should repeat his SA soonish, and then perhaps we’ll know a bit more, namely, if we should really worry about his side as well or if the last one was a fluke / badly timed.