First of all -- thank you so much to all of you. I can't tell you how much it means to me to know I'm not alone and to feel your support. I'm holding on at the moment. I'm still waiting to get a referral from my RE's office. They finally called back Tuesday afternoon only to ask me why I called in the morning (when I'd left a specific message with the receptionist). The nurse (a new one I'd never met) said that the person they used to refer to has moved, so she's going to get back to me. And then...a resounding silence. Nothing the rest of Tuesday. Nothing Wednesday. Still nothing today. You would think that they would realize that when someone has reached out for help emotionally it probably took a lot of effort and they may actually need some help. You know, sometime in the near future? I'll call again shortly. Maybe if I actually burst into tears while I'm on the phone that will help. Probably not.
Honestly, I think this may be the last straw with my RE's office. I really don't think they take me or my case seriously. There's the whole "see you in six months" phone message from the nurse. The back-and-forth decisions my RE has made -- "if you do IVF, you don't need a lap, a hysterscopy will do"...three months later "if you don't get the lap, I'm not willing to do IVF." Then "your FSH level of 12 is a concern but no big deal (after I forced her to test it), you should just try on your own after the hysteroscopy"...three months and three IUIs later after I asked if the six Femara-IUIs she keeps insisting on were really necessary before moving on and that I was worried about what my higher FSH level mean "I'm concerned about that, too, that's why I want to be aggressive." Really? Telling me that you go with the slowest steps and try everything six times is aggressive? Then, after one more cycle and the natural BFP and the m/c "yeah, I'm sure everything is fine, just try on your own."
The office was great during the m/c. But they really have done nothing to allay my fears that there is something wrong that caused it and not just bad luck. I know it is most likely nothing big. I'm 35, these things are more likely to happen. But, I'd really like to at least be offered the chance to look into it. It would be one thing if it was easy for me to get pregnant or if I was younger. But, I'm picturing trying for another 20 months and having a similar loss and then being told "oh, yeah, all you needed was baby aspirin but, oops, now you're 37 and your FSH is through the roof -- oops, sorry!" I feel like they haven't really been paying attention. Is it too much to ask that you look at my file before you talk to me on the phone?
Oh, and I don't think I've mentioned this but I haven't actually spoken to or seen my RE since April 2nd after AF showed up after my fourth IUI. And, the only reason I spoke to her then is because I kept calling in a panicked state about the timing for my next cycle and the nurses finally let me through. And, I think that may have been the sixth time I'd ever spoken to or seen her in 10 months or so or treatments -- including the two IUIs she performed. I never saw her or spoke to her when I found out I was pregnant at the end of April. Apparently my nurses were talking to her because they relayed that she was "concerned" about my second beta and wanted a third. I heard through the nurses that everything was fine with the u/s at 7 weeks (although I'm sure, now, she'd say that she was "concerned" since that's what she does after the fact). I never saw her or heard from her during or after the m/c. She was away so I dealt with a different RE (who was wonderful through all of it). And, afterward, I just got relayed info from the nurses that she wanted to check my beta levels until they were negative and didn't want to test anything else. And then, of course, see you in 6 months.
And, I do understand that doctors are busy and I'm one of hundreds of patients and that's what the nurses are for. But, I would also like to think that she cared a little more about what was happening with me and would at least reach out and say "I'm sorry you lost your baby" or something.
So, yeah, this lack of concern about my mental health really doesn't surprise me. But, hey, it's getting me back to anger instead of depression which, oddly, feels better.
Meanwhile, I took Alex's recommendation and have found a few options of people on my insurance website who have IF listed as one of their specialties (thanks, Alex!). So, I will start calling them soon if I don't hear back from my RE's office.
(Sorry for the atrocious grammar and loads o' parentheses in this post. My brain is a little on the scattered side today.)
ETA: I just got off the phone with the receptionist. "Oh, yeah, I talked to the doctor and she said she didn't know anyone, I guess I didn't know we were supposed to call you back. Let me look up a phone number for an adult psychologist in town -- here's the number for the one I just found on-line. I don't know anything about them." REALLY? Do you people seriously have NO IDEA of the mental strain that comes along with IF? REALLY? This can't be the first time anyone has ever asked you this question. Wow. You people suck.
wow...they do suck. maybe its time for another RE... nothing worse than feeling like a number in these clinics. Also, can't believe they don't have a referral for a therapist. if they can't understand the emotional toll IF takes on us, then they are in the wrong damn business! sheesh... i'm pissed off on your behalf about that answer!
ReplyDeleteThey royally S-U-C-K! Sorry. I agree with you that sometimes anger feels better than sadness, grief or depression. It feels more me and prompts action usually. Anyway, you are NOT crazy and they do not sound on top of things. I would consider switching if you can.
ReplyDeleteThat's so ridiculous that she offered you the number of some random person. You should have said, I'm quite capable of googling too, but I thought you might have someone you'd actually recommend.
UGH! I'm angry for you...they really should deal more sensativly with people *GRR* I'm happy you looked up some people that list IF as a specialty, at least you have somewhere to start.
ReplyDeleteIt's amazing to me how much we all have to own our care. When I was doing IVF I had them do medications and treatments that are out of their norm because I found solid info on line and presented research to them. My doc was good about listening and changing but I almost garentee my first cycle would have been a dud without all of it.
Might it be an option to change to the other RE that you liked so much in the same office? Sometimes just a small change like that can make a difference...
Run. Away. Now
ReplyDeleteAnd don't look back! F
On your behalf, I've composed a letter to your REs office:
ReplyDeleteDear ________:
Thank you so much for your assistance in doing nothing to find me emotional help. I reached out to you after a very difficult and painful loss (which you knew about), and you did nothing but sit on your ass and not bother to call me back. What, did you think I had forgotten that I was upset? No. I didn't. Infertile people don't forget about being upset! So, thanks to this final straw, I'll be taking my need for services, both emotional and physical, elsewhere: to a clinic who values me as a person, not just another uterus that hands over checks.
I sincerely hope you rethink the way you treat current and future patients. This field requires both respect and sympathy, and you've given me neither.
Sincerely,
Rebecca
Personally, I'd address it "Dear Fucksticks." But I don't particularly enjoy taking the high road. :)
Hey Rebecca,
ReplyDelete1st, you definitely need a new RE. Some of them actually do care and its worth searching for them. Second, have you tried looking on the resolve website for a local psychologist who specializes in IF? Another blog I read just did this and found someone. Hope you find some relief soon and you should be proud of yourself for asking for help!!
Oh my gosh, I am so sorry you are having such a horrible experience. Definitely look into switching REs.
ReplyDeleteI agree that a IF-specializing therapist would a great idea. Hopefully you can find someone good and a new RE!
If you need help finding an IF-Specializing therapist, the RESOLVE site is a good place to look. I am personally loving Katie's letter above. I think you should absolutely 100% move on from this clinic. I also think you should send them a letter about the psychologist thing. That is bad bad bad. They have sworn an oath to do no harm, and that could actually do harm- say you were suicidal? And if they don't consider your mental state, it's not worth it.
ReplyDeleteMy first clinic had therapists on staff. And my second clinic gave me a list of local counselors who specialized in infertility.
And all of my doctors have reached out to me when I had a loss- and mine were not as far along as yours. That's just horrible.
I think it might be time to break up with your RE.
ReplyDeleteI hope you find the right person to talk to!
Oh my goodness...I am so sorry. I would recommend looking for an RE. I guarantee you your current RE will call you as soon as he has to sign off the request for your records and tell you some story about how he cares, but in my book, their behavior is egregious. I also find it really appalling that they don't know of any resources??? My clinic had support groups, inhouse counselors, acupuncture, etc for stress and mental health. HUGS--I hope you can find someone soon.
ReplyDeleteYou definitely need a new RE. I'm so angry for you. I can't believe this office would treat you like that.
ReplyDeleteI hope you're able to find a good therapist soon, as well as a better, more sensitive RE practice. (((hugs)))
Sweetie...time for a new RE. Seriously. There are ones out there who do care for all aspects. Mine actually emailed me when they were worried about my mental health. I agree with trying to contact Resolve and see if they have any suggestions. But it is definitely time for a 2nd opinion. 6 attempts at each level? Hell, no! Make the call sweetie...
ReplyDeleteI work as a hit woman on the side, I'd be happy to "take care" of your problem for you. Just say the word - I can be anywhere in the midwest in my learjet in 20 minutes.
ReplyDeleteUGH! I don't blame you for wanting to switch. SOOOO not ok!
ReplyDeleteTwo things -- you so need to switch. This is not ok at ALL and I am really sorry that they are being so unhelpful and insensitive. At this point, I'd call and speak to whomever the office manager/ patient care coordinator is and raise holy hell about your RE not contacting you since APRIL and about this mental health bs they have served you, because that is just not acceptable.
ReplyDeleteSecond -- try the Resolve website for finding therapists in your area. Even if there isn't one close, you can perhaps call the closest and ask for recommendations.
I'm so sorry that your RE and her office suck so much right now. You deserve better, and I hope you get that soon.
Ok seriously? I'm so annoyed at your RE's office and your RE and his/her nurse. WTF? Seriously??????
ReplyDeleteHOW in the HELL does a RE not know of a mental health professional to refer patients to in their time of need? IF most definitely causes mental anguish and it cannot be the first time someone has asked or reached out for help. I can totally support your decision to switch RE;s./
Big hugs girl. This sucks and you should not have to sort this out on your own.
xoxo.
Good grief. I am stunned at their coldness and lack of professionalism. Wow.
ReplyDeleteI think it is time you found a new doctor.
I quite like the letter Katie wrote in your stead. I think you should seriously consider mailing it to them. The fuckers deserve to know that they are behaving like assholes.
you know what i've learnt in all of this? look after YOU. YOU know YOUR body better than anyone. if i'd sat back and not done anything, there might have been serious consequences for my health. doctors are nice and all, but at the end of the day, they're human and don't care about you like you do yourself.
ReplyDeleteit might be time to find a new RE.
Wow, I feel so very frustrated for you. You are so right in everything you said. It's NOT right for your RE to be so all over the place with your treatment plan. Its NOT right for you to go so long without a consult with her. It's SO NOT right that they are so ambivalent about your wellbeing when you are clearly reaching out for help. You can't be the only patient at this clinic feeling these things. I mean I know us IF woman are a little high maintenance but seriously, thats what happens when you can't trust your body to do what is supposed to come naturally. I think you owe it to yourself to shop around for a new RE. You deserve to be respected by your clinic and you need to trust them to do whats right for you. It just feels like given how they've treated you previously it would be hard to trust them in the future. And without trust it becomes so much more stressful. You so deserve better. Good luck.
ReplyDeleteRebecca, I'm so sorry. It is unconscionable that your RE is not taking your reaching out for help with utter seriousness. I would break up with them so fast and then send a letter detailing how irresponsible and unkind their response has been.
ReplyDeleteAs far as help goes, there is a center affiliated with my clinic called the Domar Center. Ali Domar, who runs it, is nationally reknown for her IF programs. I know that coming to Boston is unrealistic, but I think it would worth it to call them and ask for a referral near you. http://www.domarcenter.com/services/programs/
While I'm not saying my RE was great either (I didn't see her from the time I did my first consult until I got pg...) at least their office is aware of the mental health aspects of infertility. I have the number and website of a counselor who specializes in IF here on my side of the state. I know we're several hours apart but send me an email if you want the contact info.
ReplyDeleteMuch love to you!
Ugh, C- for them! I hope you have other good options in your area.
ReplyDeleteMy clinic has been great. I only saw my RE in person twice in the year I went there, but he called me after my m/c. And ALL of the nurses were fantastic: smart, sensitive, informative. You have every right to expect better service than you're getting.
They sound as 'concerned' and as 'involved' just like my former RE's office. As long as my phone calls resulted in some profit, I got fast answers, but when I "only" needed their professional help and referrals, they were not.
ReplyDeleteI was wondering, if this is the clinic you were planning on moving ong on? or is this the one you did the IUI's?
Seriously, this is upsetting, unprofessional and totally disappointing. You DESERVE better!
I was thinking another avenue to find a specialist: back, when I found mine, I needed help to process my late loss. That referral I got from a used-to-be-caring OB. Then he mentioned this lady was also doing counseling for their ART plans. Worked out great for later. The OB department seemed to take this seriously, there are so amny women out there suffering of post-partum problems. I felt they cared. Just what I needed.
Major (((HUGS))) to you and much, much love, Twinnie!
Oh. My goodness. What a lot of bullshit. Forget this RE, and her little dog, too! I'm so sorry you're not being given the respect and serious-taking you deserve. You mentioned the RE who was wonderful during your m/c (and thank heavens you had him/her at such a difficult time!); is that one a possibility. I'm completely blown away by "uhhh, I dunno, here's something I Googled." You, my dear, are a precious, individual creature of whom great care must be taken. Nothing less will do. If your RE's office is making you feel any other way, they need to go. Far easier said than done, discarding what's familiar, but let us know how we can help. Hang in there; this will all get better. Hugs and love.
ReplyDelete