Estrace Day 4: Excessively Long Psychotic Email Thread
When preparing for this cycle, rather than purchase my meds from one of the traditional IVF drug companies, I instead looked to fellow IF friends as well as women who were selling theirs online.
It's always interesting to "meet" these women in the digital space, haggle over the cost of a gonal-f pen, and maybe chat a bit over our respective journeys down the infertility path.
So in attempting to purchase my meds, I ran into a gal who we'll call "j". (Little "j" to differentiate her from "J", big J, who is my DP). "j" responded to my ad on FGS where I posted that I was looking for menopur and Gonal-F.
"j" has done one IVF at Kaiser and in email, asks me repeatedly for advise as to whato do with her next IVF. She ignores much of what I tell her and at the end I'm near to pulling out the last strands of my hair.
The madness unfurls...
j: Hi! I was wondering where did you cycle at since I am moving on to a new clinic.
me: I've cycled at Clinic "A" (2 IVF/1 FET), Clinic "B" (1 IVF), and now we're at Clinic "C" for IVF. What is your story with IF?
[she ignores my question]
j: What do you think of Clinic "B" since I looked into their website. I honesty think that I am going to check out Clinic "X" and Clinic "Y" in [town where she lives]. I can't afford alot but plan on doing risk plan. Did you do that?
me: Clinic "B" is good. Very friendly office, but it wasn't for us in the end. No, we didn't do a shared risk plan. I'm 42.
j: Thank you. May I ask why it did not work. I am 34 and still no luck. What is FET? I had my first at Kaiser and it failed. I told me there success rate was like 60% but I had my first failed. Well, I am looking for a clinic since it is time to move on. Do you think clinics are better than hospitals? I can tell that Kaiser is so professional and I really liked them but I need shared risk plan due to my fsh 8.7.
[note: "What is FET?" This is my first clue that she's really new to this.]
me: FET = Frozen Embryo Transfer. I don't know if Kaiser reports it's success rates to the CDC but I have a hard time thinking that they'd be high as they are so hesitant to do any "outside of the box" thinking. [On why it didn't work] That is the sixty four dollar question. :-) Really if we knew exactly what it was we'd be able to fix it. All we know is that after 17 embryos they're not implanting...so "implantation failure"....which can be chemical, functional, bacterial or any combination thereof. I have no idea, really. A research hospital, yes. But Kaiser doesn't do research and they don't do anything "cutting edge". 60% would be astronomical success rates. I'm not sure I"d believe that. Maybe it's true for those under 25 or under 30?
j: All I know is I went there because I had coverage and now I regret my failed IVF. So how are you doing? Did you get all the meds you needed? Yes, that is what happened to me. I have two 8 cell transfered but no success. I am checking into Clinic "X" and "Y". Dr. "Y" himself is taking over the [local] office.
[note: 2 embryos? Statistically speaking...it's no wonder it didn't work].
me: How much do they charge members for IVF? I'm doing ok. Yes, I've got all of my meds. I start my orals tomorrow, and then the injections a week later. That's when I start to get a bit nervous. I"m also starting a new job next week....what timing, eh?
j: Kaiser charges $8,800. I hope all is well. Having a new job can be stressful and leaving to all these appt. is so stressful.
[Try doing this four times?]
me: $8800!!!! OMG, I would have thought they'd give their members a break. What does that include? Exclude? (ie, assisted hatching? PGD? ICSI?) Did they give you any sort of deal on the medications? My office charges like $8200 and $500 for ICSI or AH. I figure everything is stressful, but in a way, starting a new job will be exciting...I hope it just doesn't translate to stress by my body though.
j: None. Medications were not covered. How much is Clinic "B" and the other places that you recommend me to see? What are the cost of consultations?
[Hmm, she's mistaking my list of where I've been as a "recommendation"?]
me: Yikes. Then Kaiser was no bargain at all. Clinic "A", "B", and "C" are all about $8200 for IVF. I think initial consults are all free if you do them over the phone. Clinic "C" has a 1/2 hour free phone consult...I don't recall how the others worked but I know we didn't pay.
j: Can you send me the website for Clinic "A". You must have spent plenty on these IVF. I am very nervous about seeing another clinic. I hate to see my money go do down the drain!!
[note: Hasn't this girl heard of a search engine before? Sheesh!]
me: [links to clinics included] Yes, we've spent a fortune on IVF and are writing another $8600 check today for this cycle. It's a gamble, a numbers game, and eventually you win the "baby lottery". But you, yourself, need to do a LOT of homework before you do another cycle. Check out my Reproductive Immunologist's site before you do another IVF. You could have common immune issues that are keeping you from getting pregnant and, trust me: Clinic A" does NOT test for ALL immune issues like many women will tell you. He totally ignores [identifying tests removed]. So Dr. RI is the man...or Dr. CC in Illinois. If your only insurance is Kaiser, then you won't be able to get any of Dr. RI's stuff covered. Consults are $550 last time I checked.
j: Thank you so much. Can you talk this weekend. Since my future IVF appt. are July 19.
me: Sure, I can talk. [number provided] What number are you calling from? (I screen my calls). So your next cycle starts on July 19th? Or just a baseline U/S to get ready to cycle?
j: I will all on eitehr Saturday or Sunday from [her phone number]. I have my new consulations appt. with [urls for Clinic "X" and Clinic "Y"]. Can you check out the website and tell me what you think?
[I'm thinking: "Huh? Do you want me to comment on the HTML? The U/I? Or do you think I do research on an IVF clinic for someone I've never met before just for the hell of it?]
me: Talk to you then. I don't know a thing about Clinic "X". All I can suggest is to look at the CDC website for their statistics...and ask for current stats. Url for "Clinic X" is "Dr. X". They're quite respected. I'd go with these folks over the unknown others any day of the week.
[note: I didn't look at the sites for her. I'm starting to get irate, in fact].
j: I viewed all the sites and which is the best and why are you not pregnant from each clinic? I have a 8.7 Fsh that I believe is keeping me from getting pregnant. I don't know if I will get more stressed driving over there if I am in [her hometown]. I could be stuck in traffic and so on. Would you do that if you were me?
[Why am I not pregnant from EACH CLINIC? Grrrrrr.....]
me: You can do a phone consult with Dr. RI and be treated locally. I drive 55+ miles each way to see my RE, have flown to Mexico twice for immune treatments, and once to NYC to consult with Dr. Hungarian. You have to figure out how badly you want to get pregnant. Each of us has a "stopping point" where we just toss in the towel. I"m very tenacious and I'm not giving up that easily. 8.7 isn't that bad. There's likely another issue at play.
j: I had moderate endo. last year and had the lap done in Sept. The dr. said it was all removed. I have no idea.
[Of course you would have no idea unless you had a magic means of looking at your insides].
me: It can come back. Dr. Hungarian thinks endo is infectious in origin. You can download a digital copy of his book for free on his website.
j: I don't know but I hear so many woman who have it still get pregnant. And what sucks is I am 34 years old and never knew of it until trying. I would have tried years ago. I have no symptoms of endo. and no pain at all whatsoever. That is the reason why I had no idea.
[Try being 42 and not pregnant].
me: Everyone's body is different. Why do some people, who've never smoked a day in their life get TB or lung cancer, while there are little old ladies that light up into their 90's who don't get it? There are stages of endometriosis, 4 I think....and maybe yours is more advanced? Or your body has a harder time with it. We're all unique. I had pain and heavy bleeding with massive clots all my life. I complained to ALL of my doctors and they all said it was normal, that I wasn't bleeding enough (huh?), until this last doctor. When the pathologist saw my fallopian tube slides, she said she didn't think she'd ever seen endo as bad as mine in her entire career. And my doctors said I didn't have a problem? God, how I'd love to sue their asses. It's truly malpractice, what they did to me. You need to be your own advocate. Champion your own cause, as no one is going to do it for you. If you trust your doctors 100%, you may find yourself very disappointed. Sorry to sound so negative, but you really need to take charge of your treatment. Tell your doctors what you want. And if they say no? Move on. There are hundreds of REs out there. I'm on my 3rd. I think I'm finally happy, but I always have a "honeymoon period" with my doctors where I think they walk on water...that is, until I find out otherwise. ;-)
j: I know what you mean. I really like my dr. at Kaiser and thought it would take but it did not. I have moderate endo. with no pain whatsoever. My dr. said he got all of it when he did the surgery. Well, my co worker has severe fibriods and is doing IUI and still no luck. What do you think?
me: Everyone thinks they'll get pregnant on their first IVF. That they're "different". I did and I've seen many many others go thru the pain of realizing that it's not in your control. It's not like college where if you study hard, do everything right, you'll get an "A". It's not like that all. That's what's hard to accept. The first failure is the hardest. After awhile it doesn't hurt as bad. Really. I think I'll die of shock when I finally get pregnant though. Fibroids can definitely impede implantation of the uterus if they're inside the uterus itself. And if they're so big that they warp the shape of the uterus, that's bad too. If I were your friend, I'd get them taken out ASAP. Why waste money on IUIs, and lose valuable time, if her uterus isn't in tip top shape?
j: You seem like such a expert on all of this. All I know is she has painful periods and accidents at work. I feel very bad for her. I have none of those symptoms with endo. I think it may be all gone for now but it may grow back. Sometimes, I do not knwo what is worst. I am doing another IUI next month.
me: Why are you doing IUI's? What diagnosis do you and your husband/partner have so far? Did you do a HSG? Dr. Hungarian doesn't like IUIs. The cervix acts as a protective environment to the uterine environment. He thinks that if sperm are infected, that they just swim up into the uterus with the bacteria.
j: That is what my Dr. recommended after my failed IVF.
me: Usually you do an HSG before moving onto IVF. Why are you doing IUIs? What is your Dx?
j: I had one done and it was clear. They found nothing but I was wondering what the hell if I was still tryign and it was still not getting preg.
me: What have you been tested for? What are your results? I can give you my SWAG (scientific wild ass guess) but I need data.
j: I have been tested for everything I think. My hystscopy was clear too. I mispelled the word.
[I'm thinking: "EVERYTHING? Oh REEEEEEEEEEEEEEEEALLLLLYYY???????"]
me: Oh trust me. If you haven't seen my reproductive immunologist, you have not been tested for everything. In fact, I'm willing to bet they missed about 75% of the possible tests if you've only relied on Kaiser thus far.
j: I did see Dr. Vu, he is a RE.
me: RI and RE are different doctors entirely! RI = Reproductive Immunologist RE = Reproductive Endocrinologist (these are the docs that do IVF)
j: I know he is a RE!!! I did IVF with him. Look him up his name is Dr. Kenneth VU.
[me: banging head on wall]
me: I don't think you're following. If Vu is an RE, and not an RI, then he likely didn't do many "immunological" tests on you...therefore, you still have a lot of unknowns about your infertility.
j: So what do you think I should do then? I mean I have looked over so many websites and it makes me crazy. There is so much I can do and also my sister who just had twins had a Re Kaiser too had 3 IVF states it all worth it. She has almost the problem as me and she said to just relax and try not to stress. I have alot of stress due to my job. Trust me, I believe stress did it to me the first IVF. Do you produce many follicles?
me: Without knowing your specific case, I really couldn't say. I do think it's a mistake to spend more money of IVF without the benefit of additional testing. Elimination of stress isn't a cure for infertility. Yes, 12 to 15. Good luck with your next cycle, L.
And that ladies is where I checked out of this conversation. I wanted to shoot myself towards the end, but I didn't give up. I realized that this younger woman needed some help and I could likely help her figure out part of her IF problem, maybe just one or two parts of it...but for the love of the Goddess, she just about drove me insane. I feel a bit guilty as she's one of "us". A fellow IF'er. But holy fuck, that thread just about slayed me.
Anyone else ever have a conversation like this?
It's always interesting to "meet" these women in the digital space, haggle over the cost of a gonal-f pen, and maybe chat a bit over our respective journeys down the infertility path.
So in attempting to purchase my meds, I ran into a gal who we'll call "j". (Little "j" to differentiate her from "J", big J, who is my DP). "j" responded to my ad on FGS where I posted that I was looking for menopur and Gonal-F.
"j" has done one IVF at Kaiser and in email, asks me repeatedly for advise as to whato do with her next IVF. She ignores much of what I tell her and at the end I'm near to pulling out the last strands of my hair.
The madness unfurls...
j: Hi! I was wondering where did you cycle at since I am moving on to a new clinic.
me: I've cycled at Clinic "A" (2 IVF/1 FET), Clinic "B" (1 IVF), and now we're at Clinic "C" for IVF. What is your story with IF?
[she ignores my question]
j: What do you think of Clinic "B" since I looked into their website. I honesty think that I am going to check out Clinic "X" and Clinic "Y" in [town where she lives]. I can't afford alot but plan on doing risk plan. Did you do that?
me: Clinic "B" is good. Very friendly office, but it wasn't for us in the end. No, we didn't do a shared risk plan. I'm 42.
j: Thank you. May I ask why it did not work. I am 34 and still no luck. What is FET? I had my first at Kaiser and it failed. I told me there success rate was like 60% but I had my first failed. Well, I am looking for a clinic since it is time to move on. Do you think clinics are better than hospitals? I can tell that Kaiser is so professional and I really liked them but I need shared risk plan due to my fsh 8.7.
[note: "What is FET?" This is my first clue that she's really new to this.]
me: FET = Frozen Embryo Transfer. I don't know if Kaiser reports it's success rates to the CDC but I have a hard time thinking that they'd be high as they are so hesitant to do any "outside of the box" thinking. [On why it didn't work] That is the sixty four dollar question. :-) Really if we knew exactly what it was we'd be able to fix it. All we know is that after 17 embryos they're not implanting...so "implantation failure"....which can be chemical, functional, bacterial or any combination thereof. I have no idea, really. A research hospital, yes. But Kaiser doesn't do research and they don't do anything "cutting edge". 60% would be astronomical success rates. I'm not sure I"d believe that. Maybe it's true for those under 25 or under 30?
j: All I know is I went there because I had coverage and now I regret my failed IVF. So how are you doing? Did you get all the meds you needed? Yes, that is what happened to me. I have two 8 cell transfered but no success. I am checking into Clinic "X" and "Y". Dr. "Y" himself is taking over the [local] office.
[note: 2 embryos? Statistically speaking...it's no wonder it didn't work].
me: How much do they charge members for IVF? I'm doing ok. Yes, I've got all of my meds. I start my orals tomorrow, and then the injections a week later. That's when I start to get a bit nervous. I"m also starting a new job next week....what timing, eh?
j: Kaiser charges $8,800. I hope all is well. Having a new job can be stressful and leaving to all these appt. is so stressful.
[Try doing this four times?]
me: $8800!!!! OMG, I would have thought they'd give their members a break. What does that include? Exclude? (ie, assisted hatching? PGD? ICSI?) Did they give you any sort of deal on the medications? My office charges like $8200 and $500 for ICSI or AH. I figure everything is stressful, but in a way, starting a new job will be exciting...I hope it just doesn't translate to stress by my body though.
j: None. Medications were not covered. How much is Clinic "B" and the other places that you recommend me to see? What are the cost of consultations?
[Hmm, she's mistaking my list of where I've been as a "recommendation"?]
me: Yikes. Then Kaiser was no bargain at all. Clinic "A", "B", and "C" are all about $8200 for IVF. I think initial consults are all free if you do them over the phone. Clinic "C" has a 1/2 hour free phone consult...I don't recall how the others worked but I know we didn't pay.
j: Can you send me the website for Clinic "A". You must have spent plenty on these IVF. I am very nervous about seeing another clinic. I hate to see my money go do down the drain!!
[note: Hasn't this girl heard of a search engine before? Sheesh!]
me: [links to clinics included] Yes, we've spent a fortune on IVF and are writing another $8600 check today for this cycle. It's a gamble, a numbers game, and eventually you win the "baby lottery". But you, yourself, need to do a LOT of homework before you do another cycle. Check out my Reproductive Immunologist's site before you do another IVF. You could have common immune issues that are keeping you from getting pregnant and, trust me: Clinic A" does NOT test for ALL immune issues like many women will tell you. He totally ignores [identifying tests removed]. So Dr. RI is the man...or Dr. CC in Illinois. If your only insurance is Kaiser, then you won't be able to get any of Dr. RI's stuff covered. Consults are $550 last time I checked.
j: Thank you so much. Can you talk this weekend. Since my future IVF appt. are July 19.
me: Sure, I can talk. [number provided] What number are you calling from? (I screen my calls). So your next cycle starts on July 19th? Or just a baseline U/S to get ready to cycle?
j: I will all on eitehr Saturday or Sunday from [her phone number]. I have my new consulations appt. with [urls for Clinic "X" and Clinic "Y"]. Can you check out the website and tell me what you think?
[I'm thinking: "Huh? Do you want me to comment on the HTML? The U/I? Or do you think I do research on an IVF clinic for someone I've never met before just for the hell of it?]
me: Talk to you then. I don't know a thing about Clinic "X". All I can suggest is to look at the CDC website for their statistics...and ask for current stats. Url for "Clinic X" is "Dr. X". They're quite respected. I'd go with these folks over the unknown others any day of the week.
[note: I didn't look at the sites for her. I'm starting to get irate, in fact].
j: I viewed all the sites and which is the best and why are you not pregnant from each clinic? I have a 8.7 Fsh that I believe is keeping me from getting pregnant. I don't know if I will get more stressed driving over there if I am in [her hometown]. I could be stuck in traffic and so on. Would you do that if you were me?
[Why am I not pregnant from EACH CLINIC? Grrrrrr.....]
me: You can do a phone consult with Dr. RI and be treated locally. I drive 55+ miles each way to see my RE, have flown to Mexico twice for immune treatments, and once to NYC to consult with Dr. Hungarian. You have to figure out how badly you want to get pregnant. Each of us has a "stopping point" where we just toss in the towel. I"m very tenacious and I'm not giving up that easily. 8.7 isn't that bad. There's likely another issue at play.
j: I had moderate endo. last year and had the lap done in Sept. The dr. said it was all removed. I have no idea.
[Of course you would have no idea unless you had a magic means of looking at your insides].
me: It can come back. Dr. Hungarian thinks endo is infectious in origin. You can download a digital copy of his book for free on his website.
j: I don't know but I hear so many woman who have it still get pregnant. And what sucks is I am 34 years old and never knew of it until trying. I would have tried years ago. I have no symptoms of endo. and no pain at all whatsoever. That is the reason why I had no idea.
[Try being 42 and not pregnant].
me: Everyone's body is different. Why do some people, who've never smoked a day in their life get TB or lung cancer, while there are little old ladies that light up into their 90's who don't get it? There are stages of endometriosis, 4 I think....and maybe yours is more advanced? Or your body has a harder time with it. We're all unique. I had pain and heavy bleeding with massive clots all my life. I complained to ALL of my doctors and they all said it was normal, that I wasn't bleeding enough (huh?), until this last doctor. When the pathologist saw my fallopian tube slides, she said she didn't think she'd ever seen endo as bad as mine in her entire career. And my doctors said I didn't have a problem? God, how I'd love to sue their asses. It's truly malpractice, what they did to me. You need to be your own advocate. Champion your own cause, as no one is going to do it for you. If you trust your doctors 100%, you may find yourself very disappointed. Sorry to sound so negative, but you really need to take charge of your treatment. Tell your doctors what you want. And if they say no? Move on. There are hundreds of REs out there. I'm on my 3rd. I think I'm finally happy, but I always have a "honeymoon period" with my doctors where I think they walk on water...that is, until I find out otherwise. ;-)
j: I know what you mean. I really like my dr. at Kaiser and thought it would take but it did not. I have moderate endo. with no pain whatsoever. My dr. said he got all of it when he did the surgery. Well, my co worker has severe fibriods and is doing IUI and still no luck. What do you think?
me: Everyone thinks they'll get pregnant on their first IVF. That they're "different". I did and I've seen many many others go thru the pain of realizing that it's not in your control. It's not like college where if you study hard, do everything right, you'll get an "A". It's not like that all. That's what's hard to accept. The first failure is the hardest. After awhile it doesn't hurt as bad. Really. I think I'll die of shock when I finally get pregnant though. Fibroids can definitely impede implantation of the uterus if they're inside the uterus itself. And if they're so big that they warp the shape of the uterus, that's bad too. If I were your friend, I'd get them taken out ASAP. Why waste money on IUIs, and lose valuable time, if her uterus isn't in tip top shape?
j: You seem like such a expert on all of this. All I know is she has painful periods and accidents at work. I feel very bad for her. I have none of those symptoms with endo. I think it may be all gone for now but it may grow back. Sometimes, I do not knwo what is worst. I am doing another IUI next month.
me: Why are you doing IUI's? What diagnosis do you and your husband/partner have so far? Did you do a HSG? Dr. Hungarian doesn't like IUIs. The cervix acts as a protective environment to the uterine environment. He thinks that if sperm are infected, that they just swim up into the uterus with the bacteria.
j: That is what my Dr. recommended after my failed IVF.
me: Usually you do an HSG before moving onto IVF. Why are you doing IUIs? What is your Dx?
j: I had one done and it was clear. They found nothing but I was wondering what the hell if I was still tryign and it was still not getting preg.
me: What have you been tested for? What are your results? I can give you my SWAG (scientific wild ass guess) but I need data.
j: I have been tested for everything I think. My hystscopy was clear too. I mispelled the word.
[I'm thinking: "EVERYTHING? Oh REEEEEEEEEEEEEEEEALLLLLYYY???????"]
me: Oh trust me. If you haven't seen my reproductive immunologist, you have not been tested for everything. In fact, I'm willing to bet they missed about 75% of the possible tests if you've only relied on Kaiser thus far.
j: I did see Dr. Vu, he is a RE.
me: RI and RE are different doctors entirely! RI = Reproductive Immunologist RE = Reproductive Endocrinologist (these are the docs that do IVF)
j: I know he is a RE!!! I did IVF with him. Look him up his name is Dr. Kenneth VU.
[me: banging head on wall]
me: I don't think you're following. If Vu is an RE, and not an RI, then he likely didn't do many "immunological" tests on you...therefore, you still have a lot of unknowns about your infertility.
j: So what do you think I should do then? I mean I have looked over so many websites and it makes me crazy. There is so much I can do and also my sister who just had twins had a Re Kaiser too had 3 IVF states it all worth it. She has almost the problem as me and she said to just relax and try not to stress. I have alot of stress due to my job. Trust me, I believe stress did it to me the first IVF. Do you produce many follicles?
me: Without knowing your specific case, I really couldn't say. I do think it's a mistake to spend more money of IVF without the benefit of additional testing. Elimination of stress isn't a cure for infertility. Yes, 12 to 15. Good luck with your next cycle, L.
And that ladies is where I checked out of this conversation. I wanted to shoot myself towards the end, but I didn't give up. I realized that this younger woman needed some help and I could likely help her figure out part of her IF problem, maybe just one or two parts of it...but for the love of the Goddess, she just about drove me insane. I feel a bit guilty as she's one of "us". A fellow IF'er. But holy fuck, that thread just about slayed me.
Anyone else ever have a conversation like this?
Labels: IVF3 Take 3, The Hell that IVF Is
posted by linda at 7:26 PM
Comments on "Estrace Day 4: Excessively Long Psychotic Email Thread"
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Fertile Soul said ... (2:07 PM) :
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Knock Me Up said ... (8:00 PM) :
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Anonymous said ... (9:35 PM) :
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Mony said ... (1:05 AM) :
post a commentHey, what's your email address? I'd like to email you about menopur.
OMG! I nearly had to stab myself in the eye with a sharp pencil. It was like seeing a train wreck. You are a better woman than I am.
There are just some people out there like that. Not everyone thinks to educate themselves about a health issue, unfortunately. That said, it might not even help to try and educate her about immunology. She's not there. I mean, you know my stance on immunology treatments, but even if you want to take a side either way, you need to be in the zone and at least educated on the basics of infertility. All she cares about is the end result.
Painful.
Painful. Well Done anyway.