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.

Comments

[Suz]

Fantastic news on the tubes and the ute; I'm glad that the end is minding its manners in this regard, at least. Take care of yourself and enjoy Buffy!

[Larisa]

Glad it seems the surgery went as well as could be expected - particularly that your tubes and uterus seem ok. Those endometriomas sound nasty, and I hope Dr Candour's plan lets those poor ovaries heal. Rest up and enjoy your Buffy.

[Kristi]

It sounds like you have a doctor who truly wants to give you the best chance for success. I know 3 months seems like forever, but you have to keep your eye on the future, and what waiting these 3 months may bring you. And I have every belief that it will.

[fertilityfauxpas]

Thalia, thank you for filling us in on the surgery. I've been worried but hopeful that everything was okay. Sounds like it all went well and that your doctor really seems to have a good schedule set up for you. Enjoy a couple more pieces of that Valentine's chocolate and get to feeling better soon.

[Cricket]

The power of blogging! I'm glad your recovery has been easier. Your endo kicks ass. I'm glad you're getting the aggressive and attentive treatment.

[ninaB]

hello,
glad the lap went smoothly but sorry that the endo is as invasive as it is. i'm 1 week post surgery now & almost fully recovered. get lots of rest.

[lindy]

Your poor insides, Thalia! It definitely sounds like the lap was a good thing. And Candor is certainly offering you options catered to your situation, which is always good. It sounds like you're leaning toward the long wait. I know it'll be hard, but it sounds like Candor thinks it's best. We'll be here (and Buffy too!) to keep you company in the mean time.

[Jenn]

Glad you are recovering well. Long waits are awful, but it does sound like that is for the best.

[amanda]

I'm glad a plan is in the works. Best of luck with your recovery.

[Leggy]

Ugh- the whole damn thing is such an ordeal isn't it? I know its frustrating to have all these forced delays (says the girl who's had no less than 8 months in between in each IVF cycle), but it sounds like suppression and time to give ovaries time to recover is probably the best course. Good luck thinking it through.

[DD]

I can just imagine your response when he said 3 months bcp as I would have done the same. It's never easy to be hit with news that means you have to wait, but I know it will all be worth it!

[Lola]

Boy, I sure like that there good news part! I'm sorry you'll have to wait, though. Well, it'll just give us all time to cross our fingers and toes really, really tight.

[Cali]

goodness!
So bumming about the wait.
BUT- so glad that there is an aggresive plan in action. & glad that you are now on the other end of the lap. Rest, rest, rest!

[PBfish]

Hi there,
Thanks for visiting me over at PBfish.
Gosh, it sounds like you have been through quite an ordeal, and I am so sorry for that. I wish you much luck in your upcoming IVF!

[Sarah]

Glad that you have this behind you and that all went well. Take it easy and don't puch yourself.

[Beagle]

Wow . . . you've been through the wringer. Glad you came through it all with your goodness intact. The three months part is a bummer. Does that put you on the May IVF list? "If" I end up needing a round #2, I'll be right there beside you.

[LEB]

God what a fucking evil disease endometriosis is!

I think the plan sounds good (but what do I know) - I love your Dr Candour, he sounds like a real gem.

[Wavery]

Three monyhs is along time but you're right, you have to do the thing for your long term prospects. With as bad as the endo was I'm sure your poor ovaries will appreciate the healing time.

But ohhh, I can't wait until you get to go.

[wessel]

My goodness! Well, glad to hear that your ovaries are eggful though. :-) I know it's hard to wait. I have to wait three months too, so we'll wait together. :-)

Hope you feel better soon. Rest and TAKE YOUR PAIN MEDS!

[Molly]

Well -- it's done. Whatever you decide to do these next few months, take a few days to lounge around and enjoy the delightful world of multimedia technology. Great news on the tubes and uterus, though. Hoping that the news continues to improve.

[Flicka]

So glad to hear that you are feeling a little closer to normal. Anesthesia makes me loopy, too.

Three months seems like forever but it also seems like it will be a great thing for taking out your endo. I'm really rooting for you with this protocol; maybe this will be the answer. In the mean time, enjoy those podcasts!

[Summer]

Whoa, sounds like your endometriosis was having way too much fun on your insides. I'm glad they at least left your tubes alone this time.

Three months sounds like forever, but like you said it will probably give you the best chance of getting pregnant. I'm also glad to hear that you don't have to worry about how many eggs you have left. Sounds like you are working towards more good news so just continue to take good care of yourself! Buffy sounds like a great way to get through your recovery.

[Ornery]

So glad to hear that you're recovering nicely, and that your reproductive parts are mostly in fine working order. I completely understand the tears when you first heard about the three months of BCPs but, like everyone else, I think that it is the protocol with the highest chance of success. Rest up and continue enjoying your Buffy podcasts!

[Lynnette]

If you are going to do three months of BCP's, why not do the three injections of Lupron (Lucrin or Gynecrin)? It knocks out the endo AND can potentially restore the beta-3 integrins. I don't understand why he's not willing to give this consideration. Here is another link:

http://www.unc.edu/news/archives/jun00/endo063000.htm

You can get more info by googling "lessey beta-3 integrins." Bruce Lessey is the RE who found the link. Did you see the update on my blog after you asked about articles to have in hand? I'm sorry if this sounds like assvice, but I just can't stand to see someone else go through what I've gone through, when there are answers out there, and new research all the time. And hey, we can be cycle buddies...BTW, I'll have a 13 hour layover in London on May 21st and a 7 hour on June 8th. Care to meet for a decaf? My email is on my blog.

[Lynnette]

I guess if you're using your eggs, though, that might deter him. Ask him about doing Letrozole (Femara) instead on days 5 - 9 of your cycle. There have been studies showing that this can also help restore the integrins, and I don't know why you couldn't take it with your last BCP period oryour pre-suppression period (probably better, since it has a clomid-type follicle stimulation effect as well). OK. Off my soapbox!

[Manuela]

So glad to hear that all went well and that you are home resting... the endo sounds HORRID... but thank goodness the tubes and ute are looking good.

Much affection.

[Spanglish]

Well I'll be sitting around waiting with you... I hope the time rolls along quickly for you.

Waiting isn't any fun. Sorry :(

[persephone]

Gah. It sounds like it was a very good thing you did this.

And 3 months sounds awful... but the only thing that sounds WORSE is losing a perfectly good embryo because your insides aren't completely ready for it.

Heal good, Thalia. We'll wait with you.

[Sparkle]

Sorry to hear what you've been going thru. It's great that you have clear tubes and uterus - most important.
Take it easy, the three months will fly.

[Ann]

The 3 months must have sounded awful when he first suggested it. Given the reasoning, it does seem like the best strategy.

Take care!

[Lori]

I'm so sorry you've got a longer wait ahead than you expected. Waiting is so frustrating. It does sound like it's for the best.
I hope you are recovering well and taking care of yourself.

[Elizabeth]

Oh Thalia, I'm sorry to hear about the wait. It does sound like you have a very good doctor, however, and I know that is probably a bit of a comfort. And Buffy truly is the best medicine when I am feeling down, so I hope it works for you!

[Mary Scarlet]

Endometriosis makes me very angry. I'm sorry that you had to go through this and that yours is aggressive, but great news about your uterus, ovaries and tubes. Your doctor sounds great, and hope the plan to really sideline the endo works. Glad to hear it's behind you.

[Jennie]

Am so v v glad the lap went well and they did all they can to help with the next round. 3 months seems like such a long time to wait but it does pass. Superb news about your tubes and ute, I'm so jealous :o)

[millie]

So glad to hear all went fairly well. Thank goodness they let you drink water. I hate feeling all dehydrated.

Sorry about the three month wait. I know how frustrating that can be. Enjoy the Buffy and take good care of yourself and pamper. And the yoga pants.

[cass]

Mmm, yoga pants and Buffy. Definitely a good way to ease back into things. So sorry about the three month wait, though the rationale seems sound. And glad to hear the protocol seems uniquely tailored to your needs, even if it IS a long wait.

Thinking of you.

[Vanessa]

I'm glad you're feeling better.

While it's frustrating to have a wait, in some ways perhaps it's a bit reassuring to know where the protocol is going to lead. I don't know if you have the same itchy trigger finger feeling, but as long as I have a direction then I generally feel a little calmer, a little less "I have no direction and that's a bit too high school for me".

Good luck, from one IF going IVF in England to another.

-V

PS-where do you get the Buffy podcasts (sorry to dial the seriousness down a notch)?

[Nicola]

I hope you are okay. Feeling totally desperate and down myself - 38, ttc 7 years, dh had cancer 2004, both had Dr Toth's antiobiotic treatment in NY last month. Not sure what to do now. I have hormonal migraines every month but no Dr will see a connection - I'm hetero MTHFR... Sorry, didn't mean this to be me, me, me... I hope you are feeling okay. I'm never sure if this helps - I've got 2 friends, 39 & 40 who had severe endo. both now pregnant IVF. Take care

[Lisa]

Sorry to hear about the delay. I about died when they told me I had to wait 3 months after my lap to try anything again. I hope the time passes quickly. I just tried to stay as busy as possible.

[Kimmer]

Thaila,
Hope the recovery is speedy and you start feeling better. Sounds like you are in good hand with Dr. Candour. I agree, sometimes your body needs a little break and a chance for a healthy recovery. Enjoy the down time, even though it's hard to wait sometimes. Thinking of you.

[Alexa]

I detest endometriosis--any protocol designed to keep it from rising phoenix-like from the ashes of the lap sounds like a good one to me. I am glad your tubes managed to keep themselves clear of the scourge, and I am thinking of you and wishing you a speedy and painkiller-filled recovery. Much love.

[Fertile Soul]

I'm glad you're recovering well. And may i say, YAY for free floating fallopians and YAY for ready and waiting womb!

Sorry about the 3 month delay. Waiting is so harrrrrrrrrrrrrd! Goodness. But, by what you've said, it sounds like a really good idea. Ohh, but the worst is when people tell you, well, you've waiting this long, you can wait a little longer ... arggggggggggggggggh! I hate that.

Anyway, i'll keep you company. Consider this time as all the time you'll get to do things like sleep in and sleep late until baby comes and takes it all away ;)

[stephanie]

glad to hear that the LAP went well, albeit long. and that your tubes are nice and floaty.

waiting 3 months does suck though. hopefully it will fly....

[Megan]

I know 3 months is a really long time, but it sounds like it might be the best thing for your poor endo beseiged ovaries.
I'm glad that lap went so well and that you are feeling mostly ok.

[statia]

I'm glad that you pulled through ok. I know that yucky feeling of everything tasting bad and dry like sawdust. Hopefully that's gone now. That's the worst.

I know three months seems like forever, but it'll go by so fast. I know it won't seem like that for you, but I'm hoping it does.

[Jenny]

sounds like your ovaries might need 3 months of rest. At least it's a short cycle, that's one plus.
Glad to hear the everybody went o.k. and that your tubes are looking good.
Enjoy buffy and get some rest!

[zhl]

I'm glad that you're through the surgery. Sorry it showed more endo. Hope the next three months pass quickly.

[zarqa]

Glad to hear this update from you. And I have to thank you for being so descriptive of the surgery and the protocol you've planned. It's all very instructive for someone like me, who also has endo to thank for the last year(s) of disappointments. I can't convince my RE to do another surgery. But I will definitely ask her opinion on the long suppression protocol. Although it would probably kill me to have to wait. I hope the three months goes by fast for you!

[Prop Your Hips Up]

Thalia,
Glad to hear the good news on the tubes and the uterus. I hate that your endometriosis is so aggressive - evil crap. I am here supporting you every step of the way. And what is up with insurance companies? I had a smiliar debacle on the morning of my surgery with mine. Makes me crazy.