Thalia's fertility journey

What's worse: possibility or none?

I've got to just write something or this blog is going to die a slow death, at least for the next three months while nothing is happening fertility-wise. So I'm just going to write and see what happens.

I'm carrying in my briefcase a packet of The Pill. This is odd. The last time I took the pill I was 25. I was originally prescribed it for painful periods, which HAHAHAH, of course were almost certainly due to endo. But I guess it was a good treatment option, even if they didn't know what they were treating. I thought this morning that I'd be about to pop the first pill today but it seems not. For the first time in about six months I'm expecting a period where there is no hope that I am pregnant and it's strangely liberating. I'm not nervously checking every time I wipe, I just know that sometime in the next few days I will start to bleed. Although heaven knows I bled enough after the lap that perhaps there's nothing left. Oh well, I will worry about that if no bleeding has started by Thursday.

This has left me pondering what's worse: Male Factor or tubal infertility where there is no hope every month, and you just have to get through the lack of hope until your next medical intervention, or something like endo or PCOS or unexplained infertility where there's always that little hope every month. By the way, I'm aware that my wonderings on this are pretty specious, but as usual, it's my blog and I'll be specious if I want to be.

I think I would rather have some hope every month than none. Yes, it is strangely liberating to have no hope, but it has also sent me into something of a tailspin of thinking this will never happen for us. Equally, given H's sexual issues, it means that we just haven't had sex as no matter how  much I hint and cuddle and kiss, he just isn't really ready to take the risk that his parts will let him down, so he just doesn't want to try. When we had a chance, together we would find a way each month to get him started. So a period of three months with no nookie stretches ahead of me, much as I imagine the steppe stretches into the distance to a Siberian exile (although I know there aren't any of these any more, I imagine that the Steppe did stretch flatly in all directions when there were exiles, and that indeed it still stretches, if somewhat less hopelessly, to those who live there now). Of course, if I take Zoladex and if it has the effect you might expect, I guess my libido might tank, too, so perhaps then I won't mind if there is no nookie for three months. But it's not exactly an exciting idea.

The no hope option means less worry every month, less up and down, certainly. It means my exercise regime can become less fraught, less open to finding excuses as to why I can't do what I used to do in the gym. But I miss the hope, the two weeks of feeling that little tiny bit more optimistic. Yes, the crashes were always bad, but they were at least preceded by two weeks of greater energy, an ability to look forward with hope, a general optimism about life, that's not so easy to come by when every day is much like the other. And if I go into menopause, then that's exactly what it will be like. No estrogen, no ovulation, I just won't have a cycle. That's a sobering thought.

How then should I balance liberation against the loss of hope? I don't really have a choice. This treatment seems to be our best chance to get pregnant in the end, so it's not a loss of hope, it's more of a suspension. A limbo. I've been making plans to get my ass back to the gym, starting with tomorrow morning from my hotel, continuing Thursday morning before work in the office. Perhaps that's what I can do with the blog - I can share my planned exercise cycle and you can all help me stick to it, rather than sharing details of a menstrual cycle and having your advice shed light on what's going on. So perhaps I'm not living without hope, I'm just walking, slowly, along a seemingly endless plain, but in the distance there is a mountain with forests and flowers, and gradually, very very gradually, I will find it getting larger and closer, and I'll start to be able to pick out the streams as they run down the hillside, and the individual trees, and then, sometime in late May, I'll be right there and ready to start climbing.

"So, how do you feel about entering menopause for three months, Thalia my dear?"

Just back from the consult with Dr Candour. Boy was London traffic shitty today. We were nearly late for the appointment, partly due to the traffic, and partly because I had an eyebrow emergency on the way out. That's what happens when you don't pay attention for a week or so. Instant monobrow, lots of random sprouting under the usually quite elegant line that an expert created for me a couple of years ago. It was heading back towards the virgin territory that came to a screeching halt a week before my 30th birthday when a makeup artist at a MAC counter at King of Prussia said: "You know, your eyebrows could be a great shape if you just plucked them a little." I'd honestly never thought of it before. Off to the beauty salon it was the following day, and I've never looked back. So to speak.

Anyway, I was forced to stop for some emergency plucking, which put us behind by a few minutes. But we shouldn't have worried, Dr Candour was doing his usual thing of spending as much time with each couple as they need him to spend, regardless of the fact that everyone has a 30 minute appointment. So we had plenty of time to wait. And wait. H isn't very good at waiting.

When we eventually got in there, we had a good debate about the pros and cons of the long term agonist shut down of my ovaries (the three month depot-lupron protocol that Lynnette has spoken about) versus going on birth control for three months. He is not a fan of the shorter shut downs, as he feels it won't give my ovaries a chance to recover, and won't sufficiently shut down the endometriosis. It turns out that this week he has conducted the third laparoscopy on a patient that he feels he should have been much more aggressive with, and he's been quite affected by that. This led him to be leaning towards the agonist shut-down as he feels it is the most likely to deliver a blow to the endo. He has tried birth control protocols before with mixed subsequent IVF success rates.

The pros of the agonist long term suppression is that it will definitively shut the endometriosis down, and that is associated with better implantation rates in the IVF cycle immediately following. Dr Candour doesn't believe that it will kick start the beta-integrin presence (as suggested by Dr Lessey) as he doesn't believe in that research, so that doesn't swing him one way or another. The con of the agonist suppression is that it might over suppress me such that we get no eggs when we eventually do a cycle. But he feels that since we got such great eggs and embryos, although too few, last time,  on a pretty low dose of drug, that we could do ok on that by using higher doses and an antagonist protocol. He is sure that the problem last time was implantation since the embryos were so good, so that's the part of the protocol he wants to address. He feels the bcps will shut down the endo, although not as completely, and he wants to do a full-on job.

He is clearly uncomfortable telling us one way or another, since he is someone who believes very strongly in evidence-based medicine, and there really isn't compelling evidence on the right decision here. I am tempted by the agonist suppression, but am very afraid of getting no eggs on a subsequent cycle. We agreed that he would have a conversation with the UK's expert on the drug that they would use for the suppression - someone who believes that all endo should be treated medically rather than surgically since he's had such good results with this drug. This guy has just taken a role at the med school to which my clinic is attached, and Dr Candour says BigAgonist guy owes Dr Candour a favour as Dr Candour has just arranged for him to join the skiing holiday he's organising for next week. 14 gyneacologists in the Alps, what a prospect.

Since my period will probably arrive in the next 10 days, I left with a prescription for the pill just in case Dr Candour can't get an opinion for me from BigAgonist guy before then. I may end up taking a few days of the pill, then going on this agonist drug (Zoladex) only later that week. Dr Candour is clearly very concerned to ensure that my hormones, and hence my endo, get no chance to kick in.

There you have it. Almost certainly I will be entering menopause for three months. Whopee. I think I want to do it because I think it gives us the best chance of successful implantation during an IVF cycle. But whether we'll have any embryos to implant? Hah, we'll just have to wait and see.

Thalia: 2, Endometriosis: 67 million

Thank you all so much for checking in on me. I've been OK but today is the first day I've felt able to sit up for more than a minute or so at a time, and I just can't bring myself to type in a post from my blackberry.

The operation went fine, as operations go. Thanks to all your advice, I did have a chat with the anaesthetist in advance, and it worked to the extent that she allowed me to drink water up until I went down for the op, so I wasn't too dehydrated to start off with. This was a particularly good thing since despite showing up promptly at 0730, I didn't go down to theatre until just after 11 so I would have been really struggling if I hadn't been allowed to drink for all that time. When I woke up from the operation I felt I was recovering more quickly than last time, too, but after a long afternoon, first drifting in and out of sleep while people constantly came in to check my blood pressure and to encourage me to eat something, then a long session with Dr Candour (see below), then finally thinking we could go home at 4pm but having to hang around until 6pm because the pharmacy was slow dispensing my antibiotics, then getting home, then lying on the sofa for 2 hours, then eating some soup, I was exhausted and nauseous so I'm not sure that I really felt any beter than last time. My mouth still felt horrible and dry and everything tasted bad. I did manage to eat some cucumber - fruit tasted too strong but the cucumber was nice and cool and mild.

I ended up going to bed at 2030, and falling asleep listening to one of the Buffy podcasts I'd carefully downloaded on Sunday night to keep me entertained. I woke up at about 0420 and listened to another podcast, then managed to sleep again til about 0800. Yesterday I was feeling pretty delicate but by the evening felt well enough to eat one of H's valentine's chocolates, as well as some grilled fish and artichokes for our valentine's dinner. Not one of our most thought-through valentine's ever, but still, you do what you can. Today I feel quite a bit better, but sitting up is still not a great position.

So that's the mechanics, what about the answers? Well, before I get there I thought I could entertain you with a little insurance drama. I had called through to my insurance company on Friday to check that all the paperwork was in order for the operation, and to check up on the rest of my claim. On the latter front, I found that they had basically been ignoring any receipt that wasn't either a formal receipt from the drug company or from the hospital. They hadn't asked me what they were for, no, they'd just simply ignored them. So all my Puregon refills, and the HSG receipt and the receipt for embryo freezing they had just breezed right over. The agent I spoke to assured me that he would make sure that this was seen to immediately. And he told me that they had faxed approval for the operation through to the hospital. I asked if they'd received acknowledgement, and he said no, so I asked him to fax me what they'd sent the hospital, just in case. I was glad I did, as there was a form that I was supposed to sign as part of the package. Then the real dramw occurred on Monday morning when the business services lady came round to see me in my hospital room when I was already in my gown for the operation. She was very puzzled by what had been approved. They had approved the operation for Feb 13 2005. read that sentence carefully, please. So I called their 24 hour number, and the agent promised to send another confirmation with the correct date immediately. Phew, drama over.

So, the operation. I was under for an hour and a half, which was longer than anticipated. The reason was that the endo was back with a vengeance. Dr Candour came round and spent about half an hour with us mid-afternoon to show us everything. Some lovely pictures that you are spared since he didn't give me copies. The left ovary was starting to adhere to the wall of the abdomen again (9 months ago it was completely stuck), and both ovaries had substantial endometriomas, as expected. On the right, the endometrioma had swelled the ovary by another 60% of its volume, on the left by about 40%. In addition, the right ovary had a lot of growth round the outside of the ovary. At the last lap the right ovary was relatively unaffected. Finally on the bad news front, one of the fibroids on the outside of my uterus has grown substantially and is very close to the urethra. They haven't done anything about it, but think it is worth keeping an eye on. (not sure how they do that. Will have to ask).

On the good news front, my fallopian tubes miraculously seem to be endo-resistant and are clean and clear and free floating, and the inside of my uterus is pristine and fibroid free, with no sign of any damage where they removed that fibroid last time. Also, what's left of my ovaries looks good. They are quite big and with a lot of healthy tissue so Dr Candour feels that I am not running out of eggs any time soon.

Dr Candour is not entirely sure what to do next, except that it has to be IVF as soon as we can, and it needs to involve suppression to make sure that implantation results are as good as we can get (affected by the recent article). He is leaning towards three months (THREE MONTHS!!!) on birth control pills, followed immediately by an antagonist -i.e., short - protocol. The three months are to give the pills the chance to completely knock out any endo on my ovaries that wasn't removed by the laser, and to make sure that while I'm resting there is no regrowth. He is clear that my endo is very aggressive and he wants to both knock it on the head, and give my cycle the best chance of succeeding. The alternative is to do bcps just for one month, then go straight to IVF, or even just start the protocol next month. However, both those options involve stimulating my ovaries pretty soon, and since he likened them to a deflated crisp packet right now, that might not be a good thing morphologically or in terms of stimulating the endo to grow again.

Given that the last lap was on 19 May 2005, and by October I already had two endometriomas, it seems clear that the stimulation of my normal cycle, exacerbated by the failed IUI in July, served very well to kick the endo into gear. We now need to give my ovaries a chance to recover, plus keep the endo in check. On Monday when that three month wait was suggested I, of course, burst into tears, but now I write this I'm thinking that maybe this is the best chance for us to get pregnant, and of course that's the chance I really want to take. We'll take the decision when we go back see Dr Candour and have the stitches out on Friday. Until then I'm heading back to Buffy and the sofa. Tomorrow I have calls to do with each of my teams to catch up, but I'll do them from home in my yoga pants. Although I am feeling a lot better today than yesterday, I'm really starting to hurt now that I've been sitting at the computer for an hour, so I'm going to give myself every chance to rest.

It's a war in there

Thought I'd continue on the Dar theme. Another week without a blog entry, what has got into me? Work, mostly, but also how much time it takes to check up on everyone. Pretty much every time I find a new infertility blog I feel a need to add them to my check in list, and thus my list has got pretty long. And I want to check in on everyone at least once a week, and more often than that if they're in a cycle. And that takes a lot of time. Not sure if I should cut down so that I can post more often or if I'm happy with this wide circle of connections and happy to let the entries suffer a little in the short term. Because you can bet that during a cycle I'll be posting away with the best of them. I guess we'll all just have to wait and see what happens. If you see me posting a little less on your blog for a while, please forgive me, I am really really busy at work. And I don't have much new to say about infertility, just the same old same old.

Tomorrow is my laparoscopy. I am not looking forward to it, mostly because of how the general anaesthetic makes me feel, particularly how it dries out my throat for days afterwards. I hate it. But part of me is looking foward to this. Yaay, an intervention, something that might get us closer to our goal. Yaay! But I'm also very very frustrated with all the waiting. I was reading Prop's blog today and she's going to stim during her lap and do an IUI a few days after. That seems really really fast - too fast? - but I'm going to have to wait SIX WEEKS and then potentially a further six weeks before we get to retrieval. That's a long time in the life of a 39 year old infertile, people. I'll bring it up with Dr Candour tomorrow again, but I know what he'll say: "Thalia, the extra month is required for you to recover so you have the best chance of conceiving. Do you really want to jeopardise that?" And I'll look meek and say "Of course not," only I'll be seething internally.

I've had a pretty productive day. In addition to reading all of your blogs, I read a lot of newspapers, watched half of American Idol and all today's episodes of Gilmore Girls, then I put away all our books. We've lived in this house for over two years (hard to believe) but have until now had no bookshelves. Now we do, and now they are almost full. I didn't unpack some of H's book boxes as they are full of things called "Perfect your golf swing," and "The beauty of Trout," and I decided that if he wanted to own things like that he could make his own decisions about where they went. Plus I found a stack of old copies of "Bike" magazine that even I, the ultimate pack rat, would not have kept, but thought I'd better leave them to him to throw out. Where was H you ask? He was off walking with his boy-friends. He does this every few months. They go and live in a tent for a few days and climb mountains in the rain, eat lots of sausages and drink lots of beer. It's tremendous manly fun and I won't hear any fun being poked at it, you hear? He arrived back very smelly and slightly bearded and I was very pleased to see him.

Particularly because I had found, while unpacking, his diary from the year we met. I couldn't resist a peak. And I found something really adorable. I found our first date, and our second, then I found the following weekend. Which was a weekend that I couldn't see him as I had friends in town - the friends with whom we just stayed in DC - and it was a little early to introduce him to them. But still, I had an entry in his diary that weekend, he had recorded what I was doing with them. So on the Saturday it read: Hampstead and London Eye, and on Sunday, Hampton Court. The same was true a few weeks later when I was away on business, he'd recorded the trip. How cute is that? It made me fall in love with him all over again. He reallly is a very nice man.

And now I'm going to go and spend some time with my very nice man before it's too late and I'm too anxious about tomorrow. Wish me luck.

What, you think I'm angry, does that mean you think I'm angry?

Why do most of you use blogger, hmm? It means that on a night when my husband wants to watch a nasty violent film and I don't, and blogger is down, there is nothing to distract me. You all suck. Or rather, blogger sucks. Bad blogger. I'm so glad I learnt from the experience of my last blog, and went straight to typepad for this one. Not that typepad is a good performer, you understand, it just sucks less than blogger. Mostly.

Well that was interesting. Not. I am not inspired right now, as you can tell. Except to write moany posts about how my period started on Thursday, which put paid to my fantasy of having a baby in 2006. My period snuck up on me, too, which was not kind. I went from idly thinking how great it was to be on 12dpo with no cramps and when could I buy a pregnancy test, to mild cramps, and on to lots of blood , all in the space of about 30 minutes. I was just lucky, I guess, that it didn't start 24 hours earlier and make me COMPLETELY paranoid about staying in New York hotel rooms, as previously they seem to have been a real jinx for me. 8 days to the operation and counting. I am not looking forward to it.

I'm pretty grumpy. I'm flying to St Louis Missouri tomorrow, because a colleague has twisted my arm. I'm flying there, which will take about 14 hours travel time, for a 2 hour meeting, and then I am flying back, which will take about 13 hours because of the tail winds. I'm not kidding. I should have said no and that failure is making me grumpy.

I'm also grumpy because I was really enjoying myself up until about 5 minutes ago, reading all those of you who don't frequent blogger, and singing along to Dar Williams, in this instance, one of my very favourite Dar songs, "What do you hear in these sounds" (if you haven't listened to it, and you've ever had therapy or known anyone in therapy, you must go and listen to it, or at least read the lyrics. Honestly. She so get it, and she's so funny about it). When I suddenly hear from deep in the bowels of the house, the dulcet tones of my husband, shouting "SHUT THE DOOR". And let me tell you, in this instance the capital letters are entirely justified. So I shut the song down and, surprisingly, burst into tears. At which he came upstairs to see what the matter was, and I pointed out that he'd been a bit extreme in his reaction. Then he felt guilty and stomped off in a huff. Not one of our finest moments maritally speaking.

I'm also, of course, terminally grumpy because of this thing about not being pregnant. I hate hate hate hate it. I just feel so broken and so bloody useless. It hurts, a lot, that H knocked up some other woman before he met me. She had an abortion so he doesn't have a child, and he doesn't, at all, wish that that child still existed, but oh how it hurts to know that he could have a child without me. I know he doesn't want a child with anyone else but it still really really hurts.

I am also grumpy because I now have carpal tunnel syndrome in both my wrists, as well as a really painful lower back. I need to see a physio but I'm too crap to get off my ass to do so. These things combine with my infertility to really convince me that I'm broken. My body just isn't working. I'm also, partly because of the back pain, not exercising so I'm getting gradually fatter since I'm also incapable of stopping myself from eating, and eating. All those flights don't help as there's damn all else to do when in mid-Atlantic when I'm desperately trying to motivate myself to look at my team's latest effort, and it also eats into my morning exercise slots as I'm so damn tired. Not that I would have taken that as an excuse two years ago, so we'll just have to accept for now that I'm just plain lazy.

(did anyone else read Antonia Forest as a child? She has this great scene in End of Term where the girls are creating a list of why they've been put into a remedial class, and the choices are: Backward, Delicate, or Just Plain Stupid. And the heroine, Nicola, of course picks Just Plain Stupid. Love that book).

I'm also grumpy because I had a dream this morning about how they were doing our next embryo transfer, and our embryos looked a bit shitty, and the nurse transferred the embryo to me before the set up was ready, so I took it into my mouth to protect it, and then realised that it was a bad idea, so I put my mouth on the edge of the petri dish and gently placed it back in, then saw it dissolve into nothingness as I did so. I'm not going to try and analyse it, but it made me feel shitty.

And finally, in a situation that makes me embarrassed about being grumpy about my own crap, a little girl whose website I found a couple of years ago when researching a cancer called Neuroblastoma for a friend whose child had recently been diagnosed with it, has just taken a turn for the worst. She is clearly an incredibly smart kid, with very lovely parents. Even if they are a bit too focused on the praying for my taste, they are clearly passionate and thoughtful people, and inveterate Google MDs who have researched and campaigned for their daughter's treatment from the beginning. I hate to talk about how great this kid seems to be as I'm reminded of the recent House episode where he pointed out that inevitably any kid with cancer is described as so terribly brave and kind, and surely some of them must be little shits, but apparently this child isn't. I don't recommend this site if you're feeling at all sensitive as she is clearly having a very tough time, but if you felt like extending some groovy infertile love to a family in a very different but very painful situation, I'm sure they'd appreciate it.

Having made a long list of the shittiness that I'm feeling, I'll stop now. Do feel free to ignore this post, I'm sure I'll feel better in the morning.