I'm trying to figure out how to make sure that this last IVF cycle we're doing is our best cycle. There are so many options out there about alternative therapies, new therapies & new age therapies. I feel paralyzed, unable to rationally make a decision for fear that it is not the "right" decision and therefore will not give me the baby that we so desperately want.
One of the things I've been trying to decide whether to add Saizen to my protocol this time. Although he has recommended this for other patients, Dr. Sch did not recommend it for me but is willing to add it to my protocol if we want (yeah - thanks for expressing your $30,000 opinion!). There is no rhyme or reason why it is recommended to some patients and why it is not to others (I asked my nurse to find out what criteria he uses to include it in someone's protocol and that is what she told me after discussing it with him). He keeps saying that drugs like Saizen have not yet been proven on a scientific basis to positively impact IVF outcomes and that it may or may not help...he doesn't know. So, the decision rests with me and now I get to play doctor and decide whether I will have regrets or not if we do/do not add it to our protocol. If it can help, great but the fear that I have is that it may not help but hurt our outcome. That fear isn't based on anything - just my irrational thinking rolling around in my head. How many times have I gotten to the end of something without achieving the expected response to have someone tell me "well, it wasn't supposed to happen like that - you're definitely the exception". I don't want to be a Saizen exception with our last try.
My DH is tired of grasping at straws and has voted in favour of not including it. Me? I'm still on the fence. I have no hard, scientific evidence to base any decision on so I'm just reading anecdotal evidence from others who have been put on Saizen. People have been reporting that egg quality has been improved which results in a greater number of higher quality embryos but again, this is based on anecdotal evidence of just a small few.
Another thing I've stumbled across late yesterday night was a fertility retreat called "The Fertile Soul Retreat" run by the author of The Infertility Cure, Dr. Randine Lewis. I was stunned when I went to their website and lo and behold, wasn't there a quote there by MY OWN DOCTOR...
"I have treated patients for years who have also utilized Randine's alternative medicine approach to infertility in parallel with our IVF or other fertility technologies. It continues to amaze me how many of these women are successful at achieving a pregnancy despite having very difficult problems. Many have test results that suggest their prognosis is nil, yet with Randine's help they keep beating the odds and realizing their dream of having a baby. I would encourage any patient who is pursuing pregnancy to take a comprehensive approach to their care. The Fertile Soul's advice and treatment is an important part of such a plan."
~Dr. William Schoolcraft, Colorado Center for Reproductive Medicine~
Should I go? I can squeeze their next session in (Feb 9th to Feb 12th) before my next IVF but it's $3000 for the 5 day session but at this point, money is really tight. Besides, who's to say that this is going to work for me? I've already taken a mind/body fertility program and even though the success rate of graduates going on to get pregnant and have babies was boasted to be a whopping 85%, I still ended up on the wrong side of that percentage. Do you know how much it sucks being one of two people out of a group of 11 that did NOT have a baby?
The seductive part of Dr. Randine's approach is that she believes that for most, IF is caused by imbalances of the body and that by putting your body back into balance, it can naturally conceive. For people like me who have been "diagnosed" with unexplained, do you know how appealing that sounds to me? And it's done through diet, exercise and herbal supplements, not drug therapy. It's more natural, holistic and addresses not the symptom (infertility) but the root cause.
I don't know what to do...even if I did end up going, is it something that can have an impact on the cycle we're planning on doing next month? Or would it be beneficial since the important part would be in preparation for ET, which is at least 3 months out? You see, I've done Chinese herbs before and acupuncture and I did NOT notice any difference. Granted, it all depends on the practitioner that you have and how good they are in diagnosing and treating the problem. So far, I've seen two Chinese herbalists/acupuncturists. The first one had terrible communication - she didn't tell me what was going on or my diagnosis, wrote all of her notes in Chinese, stuck a needle so far into my back that I freaked out and could still feel that point days later and she really gave me a phobia about acupuncture. The second herbalist/acupuncturist I saw I really liked and she was warm and friendly...but I don't think she knew what she was doing regarding IF and I didn't notice any change in anything during treatment.
I'm not convinced that going to this $3000 retreat is the answer. However, I did notice on the Fertile Soul website that there is a TCM doctor here in my city that trained with Dr. Lewis and is affiliated with her program...maybe I'll go in to see her. Fees for an initial consultation with her of $120 is a heck of a lot cheaper than $3000.
I always wonder though (and I am really bad at making decisions) how you don't think about the path not taken. For example, we chose not to pursue our immune diagnosis, partly because it is extremely controversial and we couldn't afford to do the treatment for it in addition to IVF. How do you not wonder at the end of it all if you made the right choice when the one you chose still did not get you to baby? When do you know when enough is enough?
People often tell you that you are ready to move on when the alternative no longer looks so scary. I feel that way about adoption - it no longer is so scary and I am at least willing to entertain the idea whereas before, I would completely plug my ears while singing "la la la la la" so I would hear nothing about it. How do you stop yourself from wondering what would have happened had you chosen differently?
Sorry about all the rambling...I guess I have to be a grown up and make a decision about what we're going to do. My DH is against the Saizen so it makes it hard for me to go against the opinions of both him and my doctor. As for the retreat, that's also a no go from a purely financial point of view. I think I will, however, make an appointment to see that local TCM doctor and maybe that will be my stepping stone to an entirely new path.
For Good
13 years ago
9 comments:
Hey There, I wanted to let you know that I was torn over doing Randine's retreat as well, but on top of out-of-pocket IVFs we just couldn't swing it. However, I did a 3-series phone consult program with them, which is pricey but much cheaper than the actual retreat. You fill in a pretty comprehensive form with your history, and they give you a diagnosis and treatment plan of herbs, acupuncture, supplements, diet and other things. I followed this plan for many months. The herbs are quite expensive, as is the acu, and my diet was very restrictive (no wheat, sugar or dairy). I don't really know if it helped my fertility, although at age 40/41 I had 20 and 21 eggs retrieved. I have one cgh normal embryo vitrified from one cycle and am waiting for the results from the second cycle. I might have done worse without the program. And I did feel much much better generally while following their advice. Regarding Saizen, I don't know much about it, but sympathise with your having to make the decision yourself; I felt like that about certain decisions in my cycles where the doctor didn't make a clear choice. Good luck with your decision!
You can always ramble away--no need for apologies! I totally feel for you making this decision. I just emailed Dr. M about Saizen...not that we're cycling again but just in case. She said it was for poor responders and didn't mention boo about quality. But yet I've seen the other ladies you're talking about--who saw improved quality. I am super tempted myself...that is IF we cycled again. You know I know how hard it is to decide what to do--leaving no stone unturned. I read The Infertility Cure and was interested in the workshops too, but I had no idea they were that expensive.
Well, now who's rambling??
I like the idea of seeing the new TCM practitioner!
There is another blogger who is about to use it in a cycle. Sue at A few good eggs. Did you see her blog?
Isn't it just shit that there is always something to make us hope again and another thing to say, "Have I really tried it all? Have I really done my best?" Ugh. I wonder if this doesn't work out for me, will I be able to say, "I've tried it all."
I can so relate to this post! I too am hanging onto every thread written about Saizen, hoping to find something to sway me one way or the other. I want to know does it help good responders who have crappy eggs?? Mamasoon said it well.
I did a year of acup/tcm and then did 8 sessions of electro-acup for borderline uterine blood flow issues. I have never noticed a difference on any of it. It's so frustrating to know what helps and what doesn't.
Good luck on your decision, I really hope we have more answers by time we need to decide.
I completely get wanting to try it all...and you are so stressed about the saizen because Dr. S is kind of leaving it up to you. My old RE used to do that and I'd stay up nights wondering if I was doing the right thing (he did this with IVIG therapy to me...and I did the stupid therapy even though I have no immune issues!...oh yea, BFN). Dr. G just put me on Saizen...he initially said I can try DHEA but that had really bad side effects for me. However, I do get a good number of eggs (19 last time on relatively low doses) and they make good embryos/blasts (I have 2 frozen still at 4BB), so I think they put me on Saizen b/c it is the only thing they can come up with for why I am not getting pregnant or miscarrying so much. So it seems they are using it for quality not quantity in my case. I've had other women who took it say it didn't help at all with quantity but their embryos were much better. Not sure.
About the retreat stuff. I don't do the infertility cure thing b/c it relies mostly on the anovulatory infertile and I always ovulate (like clockwork). However, DH has serious MF (I mean BAD) and during a month-long yoga teacher training I was assisting with - healthy foods, yoga 6 hours a day, meditation, and no real access to outside world, I got pregnant ON MY OWN. So, I'd say don't do the expensive retreat (I am going broke) but do something along those lines. Look for a retreat center not far from where you live...But, thats just my silly advice:-) GOOD LUCK!!! with whatever you decide - now my "comment" has turned into a "post" on your blog:-)
I am sorry you have so many decisions to deal with right now. I just read through your history and tried to put myself in your shoes and I think if you can afford the saizen treatment - go for it!! I would def. say the retreat is not worth the $. I had a friend from my last mind/body group attend the retreat in Ashville and this was a year ago...and she is not pg. I think if you have read the book and practice some elements like relaxation training, yoga, healthy lifestyle, you will get the same results. I wish you the best with your decisions. Now I am curious if I should ask my RE about Saizen. Here I thought I knew it all...but you CCRM girls are way ahead of the rest of us! MA RE's will not do IVIG therapy, they won't test for NK cells and they think if you have thyroid antibodies there is still nothing that can be done. Thank you for commenting on my blog. I am so new at this but so far it is helping.
It is really hard to know when enough is enough, isn't it? All you can do is make the best decision possible with the information you have available to you at the time that you make the decision. It is really easy to second guess every step of the way, but know that you and Dr Schoolcraft are doing everythin you can to create a life. Kudos to you for researching all of your options! I feel like it is a never ending world of information and stuff to lay awake at night thinking about.
Kris
I, too, have asked Dr. Schoolcraft about Saizen. He told me that he wouldn't have me take it because it's for getting more eggs (last cycle, I had 34 retrieved). He said it's for women who are on max stims who make 4 or 5 eggs get maybe 1 or 2 more eggs. I was so desperate and asked him if I could take it anyway, but he said no.
As far as the retreat, I haven't gone to any personally. But I've often wondered what-if. But then again, how would that help my DH's translocation?
Now look who's rambling. :) I wish you the best in whatever you decide to do. Sending you a cyber hug.
The Domar Center in Boston has done some studies (or at least has reported them) and what it shows is that people who are in some kind of support group get the same benefits as people in the mind-body programs (which the Fertile Soul retreat appears to be). Thus, I would say check out Resolve in your area, see if the have a support group you can get into and that will help you according to the studies in the same way. Good luck.
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