I had to sign an authorization form so that the REI Clinic on post would release my records to the civilian clinic for our IVF consult next week. When I called the IVF coordinator on post, she sounded genuinely shocked that we were looking into other options, which totally blows my mind. For those who have been reading my blog for the last several months, you are familiar with the endless cycle of problems I have had with the clinic. For my new readers, I will do my best to explain:
Last summer, after 20 months of TTC, I finally got my referral to the infertility clinic but they had no availability until September. At my first appointment the 2LT looked confused when I handed him my 19 months worth of charts and looked at me like I had three heads. I was given the dx of unexplained infertility and they refused to do further blood work on me since I'm "young." There was no availability for my HSG until the end of October and when I expressed my frustration to one of the nurses she asked, "What is your rush?" Seriously? My followup after my HSG wasn't until 6 December due to lack of availability. The technicians who did my HSG told me that everything appeared to be normal and I never received a phone call telling me otherwise, but when I went to my followup, an idiot resident told me that I had an unknown mass in my uterus--something she'd never seen before. Because of my "abnormal" HSG I had to have a hysteroscopy and had to wait until January due to lack of availability. At this point we went to the Tricare office to seek a referral off post--we were sick of the waiting game and constantly being told that they couldn't see us. We were denied. In January, I had my hysteroscopy and there was absolutely nothing abnormal in my uterus and we were FINALLY given the all clear to start Clomid.The doctor said the goal would be to produce multiple follicles so that we would have an increased chance of conceiving.
On CD 1 in February, I called the clinic so that I could get my first prescription of Clomid. I was so excited to finally get some treatment started! I called the clinic several times but no one answered and I became increasingly concerned that I wouldn't get my Rx before the three day weekend (For those unfamiliar with Clomid, you have to start it on a specific day in your cycle.) After no one returned my calls, Mike called patient advocacy and explained that this wasn't the first time we've had issues with the clinic--the IF clinic called me back right away and was highly annoyed that we had called PA. We did Clomid Cycle #1 and I only produced one follicle. I requested more blood work and was once again told that I was "young" and didn't need it. When I questioned their Clomid dosage and only producing one follicle, I was assured that it was "quality over quantity." Clomid cycle #2 produced one follicle on my left hand side--that was in March and I have not produced any follicles on that side since. After four failed Clomid Cycles and two IUIs, we were "allowed" to move on to Femara. I saw a different doctor at this point and questioned (again) why I never had any other lab work done--he was more than happy to order CD3 labs for me as well as thyroid check as well as add us to the waiting list for IVF in July of 2012. My thyroid came back normal but my AMH came back at .87, suggesting DOR, but I was still brushed off when voicing my concerns. In July, I was going to start my first Femara cycle and when I went to the lab to do my urinalysis, there was no record of it in the system--the nurses never put in the order. My prescription wasn't in the pharmacy either so I had to make the 40 minute trek to post two days in a row because of their "forgetfulness." When I tried to schedule my monitoring ultrasound, they told me there weren't any appointments available and to just do OPKs to detect my surge. I insisted that I be monitored (I knew better thanks to all my boards!) and begged them to double book me--I would have rather waited than not be seen at all. Seriously, what kind of IF clinic prescribes fertility meds and doesn't do proper monitoring?! When I went in for my follicle scan, they had no record of my appointment. When we went back to the room the nurse had the entirely wrong information for me. ::head desk::
Femara cycle #1 + IUI #3 turned up a BFN and at this point the doctor finally sat us down and talked to our diagnose of unexplained infertility. He still gave my AMH and LH levels no credence but did give present us the opportunity to do a diagnostic laparoscopy. At this point I sought another referral to see a civilian clinic, to get a second opinion before proceeding with a surgery and more expensive treatments. Once again, I was denied. I was told to expect a call from Patient Advocacy but I never heard anything from them. We did decide to proceed with the laparoscopy in search of answers and we did get them--but not without complications. I received the diagnosis of Stage I Endometriosis and found out that my left fallopian tube is partially blocked due to left ovary adhesions, which is likely the cause that I never produce any follicles on my left side. The complication was the piece of plastic that the effing resident left behind in my vagina during surgery. Are you still wondering why we want to look into other options?
This month was our second round of Femara and now that most of the endo had been removed, we were given an increased chance of conception. We decided to try IUI one more time, post endo removal. When I called to schedule my monitoring appointment, I was once again told that they had no availability but this time I was able to say, "My left fallopian tube is partially blocked so we really want to make sure that I have follicles on my right side before paying for IUI." I went to my appointment and they had no record of it ever being scheduled. Sound familiar? I did end up having two follicles on my right side and we decided to go for IUI #4. It was a BFN. We are now at the point where we know that IUI is most likely not going to work for us and that we need to consider IVF. Yes, we're on the list on post (We've been moved up to the May cycle)and although the IVF would be done at a somewhat discounted rate, I would be just one woman in a large group of women cycling all at the same time.
As if all this wasn't enough, yesterday I was waiting on a fax with the paperwork I needed to sign to release my records. It never came. No one answered when I called the office so I couldn't get the fax number I needed. I ended up sending a fax to the OB/GYN department and had to request that they deliver the fax to the nurse in the REI Clinic. When I finally spoke with the REI nurse, she asked me if I'd like to be moved up to the May cycle and sounded annoyed and sincerely astonished that we would be looking into care elsewhere. I wanted to say to her, "Are you seriously surprised?"
There are plenty of women who have absolutely loved and raved about their experience with the REI Clinic. It's been my observation that the majority of these women were able to get pregnant within a few cycles of Clomid and I have yet to personally meet anyone who has made it "this far" with the clinic. Throughout my entire journey with the REI Clinic on post, I have felt like a part on an assembly line and have never received individualized care. We have had problem after problem and do not feel like we can fully trust the clinic or the doctors. I do not want to be part of a large group during an IVF cycle. I want focus and dedication and I don't want to have to fight to be seen. I want to be able to talk to someone the first time I call and not have to wait all day for someone to call me back. Am I expecting too much? Are my standards too high? I have been told repeatedly that I need to go in and talk to Patient Advocacy about all of this but I honestly feel like it wouldn't do any good. At this point, we are desperate to find a doctor that is truly invested in helping us become parents, to make our dreams come true, and I do not think that we are going to find that at an Army hospital.
Hello from ICLW!
ReplyDeleteWhat a frustrating experience! As if this crap isn't frustrating enough. I have been very grateful to deal with mostly compassionate people, but some of the nurses and admin staff I came across were infuriating. I think because they see this stuff every day that they get lazy and complacent? I don't know...
I don't think your standards are too high. I hope that you find someone you're comfortable with!
himplusme.blogspot.com
What a nightmare! I'm so sorry that you've had so much trouble!
ReplyDeleteI don't know where in the area you actually live but I've heard great things about Overlake Reproductive Clinic in Bellevue {and I've heard not such great things about Seattle Reproductive}. When we did our IUI's we went to Northwest Reproductive in Kirkland, but I never saw the same doctor. Every single time I was there it was a new face and that's what I've heard about Seattle Reproductive too.
In any case, hoping you can get the paperwork you need and that you can find a kind, compassionate clinic to help you on this next road in your journey!
Oh my goodness. What an experience! I have a friend who is also stationed at Lewis and sees the doctors on-post for recurring miscarriages. She has had similar experiences in terms of lack of care/compassion/proactivity. I hope that this new clinic is a million times better than your on-post option. While it did take awhile to start seeing my RE on post here, I've had nothing but wonderful things to say about him and his staff - minus the multiple BFNs. They're actually reducing their IVF patient load each cycle to only 4 women, which makes me feel a lot better about going through with it in the spring. I hope you get all of your paperwork soon so you can move onto other options!
ReplyDeleteok so wow. I am EMBARRASSED for the military for taking care of you like that. I am a fellow military spouse (AF) and have dealt with my share of issues, but seriously that is obnoxious that they treated you like that. I would schedule a meeting with the med group commander and try explaining your problems with the clinic with him. I am so sorry that you are dealing with the stress of IF and not getting the care you need either. Would Tricare still cover things if you went standard and found your own doctor?
ReplyDeleteI'm visiting from ICLW and am sorry to hear about this :( (#69)
Thanks everyone. I'm really looking forward to Tuesday. I have heard nothing but great things about this doctor in Olympia so I hope it is a great fit and that we can start our IVF journey sooner rather than later!
ReplyDeleteMy god what a story! You don't have too high expectations at all. Hope it feels much better with meeting this new doctor. Best of luck!
ReplyDeleteLOL!! I could have written your post word for word, especially on the Clomid part. That clinic really does suck. I only ever produced one follicle, even on 150mg of Clomid. My friend fought tooth and nail to get Clomid and injectibles for her IUI's, something they always denied me because of my PCOS. After a couple IUI's she got pregnant (and she is unexplained as well). I finally gave up on them and started IVF at Womack. Never again will I go back to that clinic. I also find it really sad that we have to educate Tricare on what they cover and don't cover.
ReplyDeleteICLW #43
Christa, I didn't know you ever used the REI Clinic on Fort_Lewis? I started a FB group for women who use the clinic on post and the general consensus has been disappointment. None of the girls I've met are anywhere close to where I am on their journeys through IF but they are still having to fight for every monitoring appointment. One girl didn't know she should insist on monitoring and over responded to 50mg of Clomid. Ended up in the ER multiple times in one week due to ruptured cysts and blood in her ovaries. They just have way too many patients to keep up with. It is sad.
ReplyDeleteThere was an article published about the clinic earlier this year and of course the interviewed the 30something who got pregnant on her first cycle of Clomid and had nothing but great things to say about the clinic!
I dont think your expectations are too high AT ALL. And it makes me soo mad they won't just refer you off post!! Id say just go standard, but honestly we both know that can be pretty pricey=/ So sorry your going through all of this hun!
ReplyDeleteThis sounds disgustingly similar to my experiences with my OB/GYN office. :-p Happy ICLW and good luck with a civilian clinic!
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