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Cheating on your specialist
Why it's OK to get another opinion


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#1 prue~c

Posted 27 January 2011 - 04:05 PM

I was talking to a freind a few weeks ago, who had recently had her fourth unsuccessful cycle of IVF.

According to her clinic, she and her parter had no discernable reason for their inability conceive - the dreaded "unexplained" infertility which affects around 20% of infertile couples - and, said her doctors, it was just a matter of keeping going and transferring embryos until they got the right one.

I asked her about all the testing they had, and assumed it would be similar to what my partner and I had been through. But I was shocked when she said that apart from some tests to check ovulation, a laparoscopy, (with a bit of endometriosis that had been rectified), and a standard semen analysis on her partner, their clinic hadn't ordered anything further. No tests for auto immune issues, no natural killer cell testing, nothing to check the DNA of her partner's sperm, no karyotyping. And not only that, for all IVF cycles, the clinic had followed the same protocol, with the only adjustments being the amount of follicle stimulating hormone administered to maximise egg collection. Frozen embryo transfers (FET), of which she had only had a couple, followed a basic unmedicated protocol. All of this over a period of three years with not even a hint of a positive pregnancy test.

I suggested getting a second opinion - she is in her late 30s and time is of the essence, but she confessed she felt so guilty even entertaining the thought of visiting another specialist. I know how she felt, because I have been there. I call it "cheating" because - not that I have ever cheated on a boyfriend - the secretive behaviour, the phone calls, the cancelling of appointments, all of this clandestine behaviour sneaking around someone who knows your most private parts - well it's kind of like seeing another man.

I have cheated twice, but I don't regret it at all.

The first time, we had been seeing each other for almost two years. Convinced I was the one with the problem, and buoyed by several good results from (what we later discovered were very basic) semen tests, I persevered with specialist #1 until he actually suggested I go see someone else. Back then, in the newbie days, I knew nothing at all about assisted conception. I happily popped Clomid pills for several months in the belief that it would get me pregnant - despite all tests indicating I ovulated normally and had no need for it.

I break out in goose bumps now when I think of the possible multiple birth bullets we dodged on that one. I had no monitoring or testing at all during those four cycles. Clomid, in case you didn't know, is one of those fertility "wonder drugs" that end up as cover stories on weekly women's magazines. "Our miracle quins" or "I'm pregnant with twins - For the third time!!!" but those mistakes happen when no ultrasounds are performed to see how many egg follicles are being produced. I could have been pumping out six or seven per cycle. It's almost a relief that my partner's sperm is so warped it couldn't penetrate the eggs.

It was during a cycle of Intra Uterine Insemination (IUI, or artificial insemination for the old school readers) with my next specialist that I bumped into the ex. A brief hello was followed by me telling him in what I like to think was very subtle language, that he had made several bad decisions regarding my treatment, and that specialist #2 discovered a few more problems which could have saved us a lot of time and money had the very basic tests been carried out sooner. I like to think he learned something from the experience.

I saw specialist #2 for a good 18 months, three IUIs, three IVFs and four FETs before getting the magic third opinion, but by that time, I had become much more educated on assisted reproductive technologies. Thanks to the magic of Dr Google and the combined learnings, wisdom and experience of the women on Essential Baby, I knew exactly what questions to ask, what testing to insist on, and when to suggest to my doctor that it was time to try something new.

#2, thank the gods, started out with a pro active approach, ordering a barrage of tests on both me and my partner. He started treatment conservatively, with IUI to get things moving, but when I suggested we move on to IVF, he was more than happy. For FETs he was willing to take my suggestions on board, and when I suggested we switch IVF protocols - try some different drugs and the length of the cycle - he was very accommodating.

But there were a few niggling things a doctor friend had discovered on my test results that he didn't seem to think were important, so I sought out another opinion. First, I made a booking to see another specialist when I knew #2 would be away. This doctor agreed that some of my test results were "interesting" and suggested an additional drug regime to counteract my homozygous MTHFR (just click, ok!). Then after continually pestering #2 for natural killer cell testing, it was time to make a booking with #3.

I knew something more was wrong, and it made me feel like a dirty strumpet to go behind #2's back, but #3 confirmed my suspicions. I did have a high percentage of natural killer cells. He concurred with everything else #2 had done, but gave me a new drug regime to counteract the NK cells, et voila, four weeks later, the magic second pink line appeared on my home pregnancy test.

I urge everyone who is going through AC who isn't satisfied with their care, who "has a feeling" or who has come up against conservative doctors unwilling to try anything new, to PLEASE consider getting a second or third opinion if it's possible. Doctors aren't infallible - they dont know everything, and sometimes, they are set in their ways. I also urge you to read as much as you can about your condition. People may sneer at Dr Google but there are some very good resources online, and always other people whose experiences you can learn from. You never know, it might work.

Edited by prue~c, 27 January 2011 - 04:06 PM.


#2 ohwow

Posted 27 January 2011 - 07:15 PM

I totally agree Prue. Compared to yourself and alot of other women in the AC boards, my AC journey was quite short. But i feel it was short because i pushed my way through different doctors and clinics till i found someone I was happy with and trusted that would help me to get pg. I found someone who listened to my concerns and didnt brush off my questions about what i had read on DR Google.

I never saw it as me cheating on the DR, I actually thought i was the one being cheated when i realised how different things can be from one clinic to the next. Everything from service to price!

#3 lucia11

Posted 28 January 2011 - 11:59 AM

Is it cheating if you're seeing 1 IVF, 1 Herbalist, 1 Naturopath, 2 Accupunturists, 1 chinese medicine, 2 massage therapists, and still looking for any solution.

we're doing our 2nd IVF next week. willing to try anything new. we're already adding lipiodol and then laughter therapy and accupunture on the implant day..

here's a list of tests...anyone notice anything we've missed?

Ok, when I look now I think I might be going a little nuts with this but I really must or I'll go crazy..you understand don't you.

TEST
AMH
Vit D
Free T4
Free T3
TSH
FSH
CRP
R
T3
TG
TPO
Homocysteine
Oestradiol
Progesterone
LH
Prolactin
Ruebella

serum ferritin assay
estradiol
HIV 1+2
Tpallidum
RPR
Hep B
Syphilis

Hep C
chromozone

Edited by lucia11, 28 January 2011 - 12:01 PM.


#4 prue~c

Posted 28 January 2011 - 07:46 PM

Lucia I had a few on the side as well - acupuncturist, massage therapist, osteopath, naturopath.

Have you thought of requesting the auto immune panel? It's been years since I had it, but it included thrombophilia, lupus anticoagulant, MTHFR, and a bunch of other things.

I just harp on about that particular issue because I had bad results for several of the tests.

I don't think you are crazy. I have had all of those tests - a lot of them are first stage investigations so you definitely should be having them!

NK is a separate test on its own.



#5 Guest_ladybaba_*

Posted 29 January 2011 - 02:45 AM

.

Edited by ladybaba, 08 February 2011 - 08:31 AM.


#6 leafgirl

Posted 30 January 2011 - 07:36 AM

Ladybaba,
I had the same feeling. Three years and 10 egg pick up cycles and nothing (not to mention how many dollars!) FS insisted that any change in protocol would make no difference whatsoever and kept encouraging us to keep trying the same old thing (with ever increasing amounts of stim drugs to get more and more eggs.) We also had been diagnosed with unexplained infertility, though she did send us for all those detailed tests which Prue talked about, which all came back clear. When I finally managed to get myself to another clinic - lo and behold - BFP first time. This was with a different protocol and heaps less drugs. Sadly, that pregnancy ended in miscarriage, I had another two unsuccessful cycles and then from the fourth cycle am now 20 weeks pregnant - at age 42 almost 43. So I really the believe the difference between clinics and protocols can be immense. Also my new FS was honest and said - look - if this doesn't work for you in the next couple of goes, it probably isn't going to.

I always had that feeling that I needed a different protocol and a more "natural" approach of a protocol that involved less drugs, that was what ended up working for me. I didn't have many eggs, but I believe the egg quality was better.

I really think it would be worthwhile for you to investigate your options and research the different protocols available. Do what feels right for you and I wish you the best of luck.

#7 Guest_ladybaba_*

Posted 30 January 2011 - 04:05 PM

.

Edited by ladybaba, 08 February 2011 - 08:32 AM.


#8 libbylu

Posted 01 February 2011 - 01:43 PM

After a few blood tests, a single sperm analysis, and 3 poorly monitored Clomid cycles (partly due to me being on holidays but also due to difficulty getting an appointment) my highly recommended private FS pronounced that 1. My luteal phase was very short and Clomid hadn't helped much 2. My partner had a high percentage of abnormal sperm morphology and was pretty much infertile (she couldn't explain why he had managed to get me pregnant twice before with no difficulty at all when my cycles were more regular) Therefore we should proceed directly to ICSI IVF, please make an appointment with her clinic nurses thank you very much, we'll send you a schedule of payments.
We were sure there had to be some other options before IVF and went away disillusioned.

Given the journey seemed like it was going to be more complicated and expensive than we had initially suspected, we booked in as public patient's at RWH.  There they ordered a second sperm analysis that revealed a somewhat better result for my partner and explained that his sperm would always have been like that and it wasn't a major issue since they had done their job in the past.  They did thorough and careful examinations of my hormones throughout my cycle to try to understand what is going wrong.  They suggested a simple solution of Luteal Phase support using Pregnyl injections and although I can't confirm it yet, after one cycle of treatment I am pretty sure I am pregnant. (+ve HPT this morning!).

It was a pain to have to wait two months for an initial appointment, but then so gratifying to have our issues investigated thoroughly without the IVF bandaid being touted as the only sensible solution.
Cheating on our FS cost us a little bit of time but saved us from the expense and invasiveness of IVF.

#9 LittleRB

Posted 02 February 2011 - 12:17 PM

Yes I agree - cheat on your specialist if you feel the need!

My 1st FS kept telling me I was too young and had "plenty of time" to think about conceiving so wouldn't actually allow me to take any injections, clomid e.t.c, would only put me on the pill to regulate my PCOS and then tell me to go off it and TTC.

Got fed up after 4 years of "just trying" and went to see someone else.After ovarian drilling, clomid cycles and IVF - fell pg with DS after a year with FS #2.

Liked him as soon as I met him. I know this sounds weird too but if you don't have a good feeling or don't feel comfortable with your FS - I don't think things are going to work as well as they could. Women generally have those niggling doubts for a reason!

#10 hilary3

Posted 09 February 2011 - 04:16 PM

Hmm, I think this is the final lightning bolt I need to find a new FS. I have seen mine once for about 10 minutes, when I was diagnosed and prescribed Clomid. I have done 2 Clomid rounds completely unmonitored (apart from bloods to check that I did ovulate). The girls in my PCOS buddy group keep reeling off tests and monitoring they've had that I certainly haven't. So after this round I think it's back to the doc's to get another referral. (assuming I'm not pregnant with quads in the meantime!)

#11 ~Panda~

Posted 10 February 2011 - 08:47 AM

Oh gosh, I am constantly having an affair behind my FS's back!

TBH, I am the one that has to be at home alone when DH is on nightshift, over thinking things, crying about my "meant to be here now" babies. I am the one that sees so many pregnant bellies and hears so many pregnancy announcements. I am the one that has to feel like a failure. Like my body has let me down constantly.

I moved on from my FS and guess what? I found out I also have Natural Killer cells. My other FS didn't think I needed that test as he doubted I had them. My old FS was lovely enough, but the clinic was private and super expensive (I have heard the most expensive in Sydney). It was actually a public clinic that ordered these tests.

I think as someone enduring IVF and the heartache of waiting for years to have a baby, only to have recurrent m/c, you need to do what is right for you (within reason). I know we are not trained like the FS, but it is our body going through the it and if we feel something is not working or we need a change, I think we should be able to voice this and get other opinions without feeling guilty.

I too, see a naturopath, acupunturist, kineseologist (sp?) etc!

Good luck to everyone!

#12 T2Mum

Posted 18 February 2011 - 01:44 PM

This is quite possibly the most important blog post you will ever write. I cannot agree more - get 2nd opinions, 3rd opinions and even 4th opinions if you have to.

I was intially diagnosed with "mild" endometriosis and told by three different IVF specialists that having surgery to remove it would not make any difference to whether or not I got pregnant. Six stimulated cycles, many miscarriages and BFNs later I finally saw a non-IVF doctor expert in endo. Turns out my endo was not so mild but was stage IV and had invaded nearly every reproductive organ in my body and my bowel. I had a five hour laparoscopy and then later a bowel resection to try and get as rid of as much of the endo as possible. Next cycle of IVF, voila! The embryo results were markedly improved and I got a lasting BFP (plus frozens). In addition, I now feel so much healthier - less tired, less bowel problems. I had become so used to living with endometriosis I didn't realise how sick I was.

I find it very scary to think what would have happened if I hadn't sought a fourth opinion. The only reason I decided to go down that path was because I saw someone else on a forum with a similar history to mine that had finally undergone endo excision surgery and had success after multiple IVF cycle failures.

Edited by T2Mum, 18 February 2011 - 01:47 PM.


#13 jb076

Posted 01 March 2011 - 02:32 PM

I completely believe in "cheating" on your ferility specialist, especially if you feel like you're not being heard or aren't getting the answers you deserve. We experienced 7yrs of TTC at the hands of 2 FS's before we found our saviour. After all the 'assistance' we paid for over the years - we fell pregnant naturally with our miracle baby (after our last IVF cycle in October).

First FS was just lovely and talked the talk - followed her blindly for years. 2nd FS was a supposed PCOS specialist but didn't do any other testing other than the general insulin resistance testing etc.  Our current FS did more testing and finally recommended ovarian drilling to combat my high male androgen levels (which affects egg quality).  Imagine my horror & dismay when he said that ovarian drilling is generally done before you even start an IVF cycle!

It's with the help of our current FS (3rd one) and my accupuncturist (2nd one) that we have fallen pregnant.

I've also learnt too (the hard way) to do your research and ask the questions. You're never going to learn till you ask.

Good luck everyone on your TTC journey.

J

#14 lucia11

Posted 03 March 2011 - 03:09 PM

Sadly we just found out that our IVF hasn't worked again.  5 eggs, 1 embryo implanted.
I'm gutted, and want success so badly.  My husband doesn't want to go again.  

I'm still going to run the extra blood tests that you recommended.  

I'm new to Brisbane, how do you find out who's good and whose not?  

I hope all goes well for you Prue, get some rest and try to keep those wee ones in there as long as you can   Prayers are with you.  




QUOTE (lucia11 @ 28/01/2011, 11:59 AM) <{POST_SNAPBACK}>
Is it cheating if you're seeing 1 IVF, 1 Herbalist, 1 Naturopath, 2 Accupunturists, 1 chinese medicine, 2 massage therapists, and still looking for any solution.

we're doing our 2nd IVF next week. willing to try anything new. we're already adding lipiodol and then laughter therapy and accupunture on the implant day..

here's a list of tests...anyone notice anything we've missed?

Ok, when I look now I think I might be going a little nuts with this but I really must or I'll go crazy..you understand don't you.

TEST
AMH
Vit D
Free T4
Free T3
TSH
FSH
CRP
R
T3
TG
TPO
Homocysteine
Oestradiol
Progesterone
LH
Prolactin
Ruebella

serum ferritin assay
estradiol
HIV 1+2
Tpallidum
RPR
Hep B
Syphilis

Hep C
chromozone





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