This was written over the course of several weeks...
Sigh....I’m getting pretty tired of the doctors and appointments already and I haven’t even started treatments. I had another video conference today with my current RE. The goal was two fold. First to convince her to write me a letter of recommendation to my PCM for an excision laparoscopy and also a recommendation to get a referral to Dr. B. I also wanted her to consult with Dr. B on my behalf. The appt started out rough. I was trying to be as gentle as possible about wanting someone else to perform the surgery and I was finally able to convince her to put in my medical record that I needed that surgery as well as a referral for additional immune testing. She also finally agreed (with a HUGE plea from me) to just speak with Dr. B on the phone. She said she reserved the right to not work with him if she disagreed with his protocol. I get that....but I need her help to pull this off.
I got a copy of my records and immediately brought them to base to try and convince the team working on my case to approve the referral. Even if I manage to get the referral, the out of pockets costs are extremely high. My RE did recommend a pelvic pain specialist who she works with at her hospital who does the excisional surgery. He does in fact take Tricare, but it’s a 6 month wait just to get a consult (and I’d have to convince Tricare I need to go there in the first place)....this is not getting any easier.
I am officially a patient of Dr. B. I’ve filled out a detailed diet questionnaire for him and am waiting further instructions of how to proceed. I’ll be looking into switching to tricare select and comparing benefits for all of this.
I’ve also looked into having a consult with The Endometriosis Care clinic in Atlanta. We would have to pay out of pocket there too as they only accept out of network insurance. The wait for a consult appt is into the middle of Sept as of right now. The approx cost for the surgery is between $20-30k, excluding hospital fees.
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I have received a one time "second opinion" consult referral to Dr. B! I honestly don't even know what that means or what is covered. I called Tricare today and the rep I talked to said everything should be covered 100%. I don't believe that for a second. I submitted a claim to Tricare in the amount of $2400 and if they reimburse me ANYTHING I'll be shocked. I am now unsure how to proceed. I think I have to go back to my PCM and beg for another referral (and this one took 2 months to finally receive.)
I have a consult appt with the clinic in Atlanta for the endo surgery Sept 18 and was given an additional recommendation to a doctor in NY that IS in network but getting a referral to them could take months. And frankly, I'd rather not fly anywhere for surgery as I have never done well with anesthesia (I've been put under 10+ times and each time is rough for recovery).
Right now it's "Do we pay all out of pocket and try to get a partial reimbursement from Tricare after I submit a claim based on the Points of Service option?" or "Do I fight for a referral to Atlanta or one of two doctors out of NY-one in network or to the one out?" The only way to have this surgery paid for by Tricare is by me going to the doc in Birmingham or the doc in NY that is in network WITH a referral from my PCM.
My local RE agreed to help me with the lab work Dr. B is requiring. Everything has been submitted by my RE and now I'm waiting to get a call from ReproSource out of MA to finalize the details and get a collection kit.
A concern is that as soon as all of this is finalized and I start treatments, we will be moving again and I will have to start over....I don't even want to think about that right now.
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You guys!!! I just learned that my PCM is submitting for more referrals to Dr. B! That request should take between 3-5 days for approval. Also! Get this! My PCM is submitting approval for a referral to The Endo Care Center in Atlanta! That is HUGE! If it gets approved, our out of pocket costs are drastically reduced for that surgery and I would only have to travel 2 hours from home for it! Thank you, Jesus! Prayer IS the work!
Now if I could just get ReproSouce to call me back....I've left several messages and NO ONE IS calling me back to set up testing! ARG! Once I can get my blood drawn (3 separate times mind you), and DH does his testing, it's another 6 weeks for the results so the sooner the better for all of this!
I hope you all understand that I'm not wanting this surgery for purely having a chance at conceiving another baby. I'm in some pretty serious pain during ovulation and during AF...it's to the point of not being able to function normally during those times. I can't even pee during AF without death gripping the wall in the bathroom from the pain that takes over. I know that I have endo on my bladder/ureter and colon making my period and ovulation VERY difficult. I get searing pain in my cervix, bowels, and across my abdomen when I go to sit, stand or MOVE on my period. THAT IS NOT NORMAL. While I can control some symptoms with diet, I want that surgery to feel good again and hopefully by adhering to the "endo diet" after surgery I can keep it away longer this time.
Thank you all for praying for us!
Tuesday, July 24, 2018
Tuesday, July 3, 2018
Some History:
Hi friends, for some of you out there that are semi-new to reading/following my blog I thought I'd give a little history of how our infertility journey came to be. It's not pretty and honestly, fairly graphic. Actually, this is going to contain some possible triggers for people and I want you all to be forewarned before you continue reading this.
Writing through all of this has been therapeutic for me as we reflect on the 12 year anniversary of my first miscarriage.
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Miscarriages aren't something that is normally talked about. But I'm going to today.
It was about 6 weeks after DH and I got married that I realized I had missed my period. I wasn't super in tune to my cycles back then but I could usually remember when I had first started and usually when I had ovulated. I was sure I was several days late, if not by a whole week. I grabbed an HPT during a grocery run, took the test as soon as I got home. Yep, I was pregnant! We called my parents like an hour after we found out as we couldn't contain our excitement and I think they were as surprised as we were, but happy too.
I was advised by a nurse that the base clinic wouldn't want to see me until I was 10-12 weeks along and told me to wait until after we had moved to Idaho before pursuing an appointment. We moved to Idaho the middle of June 2006 and while I didn't have crazy morning sickness, I did have pregnancy symptoms.
I was almost 11 weeks along when I noticed I was spotting brown blood several times a day. After two days of that and starting to panic, DH and I headed to the ER on base. A doctor checked my cervix, and said it was high and tight. She tried to find a heartbeat of the baby using an external doppler and declared that it must be too early for it to be detected. She didn't think I had anything to worry about and didn't even think I needed an u/s. She sent us on our way. Not two days later, DH and I were in Boise for the weekend at a movie. I started cramping something fierce and bleeding. A lot. I was miserable and begged DH to drive me back home. By the time we got back, I was full on hemorrhaging and in serious pain. It was hours before the bleeding and the passing of very large clots was under control enough for us to get back in the car and get to the ER. DH was making me drink as much water and Gatorade as I could tolerate as I had lost a significant amount of blood. Once in the ER, there was nothing they could do for us other than document that yes, I had had a miscarriage and again sent me home this time armed with Motrin and something to make my uterus cramp down further. I was dilated to 7cm and had the contractions to go with it. July 3, 2006 was a very long, painful night.
I continued to bleed for another two weeks and knew something still wasn't right. I got in to see an OB on base and during the pelvic exam she got very quiet and asked for assistance from another doctor. I was doing my best not to panic at that point. Our baby and the placenta were stuck in my birth canal. As both doctors were working on me, there was a sigh of relief as they were able to pull them out but then that triggered a gush of blood that had been building up behind the blockage. It looked like a murder scene around me. I was then admitted to the hospital for the amount of blood that I had lost and got my first ever IV (and 6 tries to find a vein along with it as I was fairly dehydrated-eventually they called for help and a chief from the ER was able to get it in). I was given a shot in my arm to help stop the bleeding and was told that I would have to have surgery if I didn't stop bleeding soon-like I somehow had control over that.
The bleeding did finally stop and I was able to go home. The emotional damage from that miscarriage is long lasting and something we both will never forget. Our baby and the placenta were sent off for testing. The pathology report showed no chromosomal abnormalities and no clotting factors.
It took us another 18 months before I was able to conceive again. This time I knew what could happen and I was freaked out that it was going to happen again. And, it did. DH was TDY when I noticed I was spotting brown blood again. I was nine weeks along. My friend met me in Boise (where I had jut gotten off work) at the hospital. I got in right away and was given an u/s. Two gestational sacs were noted, but no heartbeats. I was crushed.
I was scheduled for a D&C for soon after that as I absolutely did not want to go through a natural miscarriage like the one I had prior. DH wasn't able to get back home from where ever he was to be with me so thank the Lord, my bestie was able and helped get me through my first ever surgery.
Once again everything came back normal from pathology. Both DH and I did massive amounts of blood work for a recurrent miscarriage panel. And again, all normal. I was then sent to my first RE and started infertility treatments under the diagnosis of "unexplained infertility and recurrent pregnancy loss".
We tried three IUI's, a couple with Clomid or Fermara and all with injections. On a 4th IUI attempt, I over stimulated and it was turned into IVF (transferred 3 embryos that resulted in a negative pt test). After we moved to KS, I went on to have a FET and another miscarriage. We decided to try 3 rounds of "timed intercourse" with injections-once again all negative. Once in AZ, a new RE was shocked to learn no one thought to check me for endometriosis. I then had excision surgery that removed stage III endometriosis and did IVF a month later where I conceived our little Skittle. Just over a year after she was born, I had an endometrial biopsy (which had to be done three times as the doc couldn't get a good enough sample), a uterine septum repair surgery and three more FETs to try and have a sibling for her. All negative. I had laser surgery again in 2013 for endo, IVF twice more and had an early miscarriage from a natural conception in 2014. My last FET was cancelled due to cellular death of the embryo.
It's been a long road. It's been over four years stopping infertility treatments but yet, here we are about to try again.
If you read all that, I thank you. It felt good to finally write down our story. I've seen Gods hand throughout all of this. He's protected us and shown us what a miracle and blessing children are. He placed people in my life exactly when I needed them. Our little Skittle is a miracle baby. She survived when all our others have not and I am overwhelmingly thankful for her life. I believe God is still merciful and good no matter our outcomes. He is good whether He decides to give us more children or if He doesn't.
We thank you all for the outpouring of love and support you've shown us through our continued journey.
Writing through all of this has been therapeutic for me as we reflect on the 12 year anniversary of my first miscarriage.
*********************************
Miscarriages aren't something that is normally talked about. But I'm going to today.
It was about 6 weeks after DH and I got married that I realized I had missed my period. I wasn't super in tune to my cycles back then but I could usually remember when I had first started and usually when I had ovulated. I was sure I was several days late, if not by a whole week. I grabbed an HPT during a grocery run, took the test as soon as I got home. Yep, I was pregnant! We called my parents like an hour after we found out as we couldn't contain our excitement and I think they were as surprised as we were, but happy too.
I was advised by a nurse that the base clinic wouldn't want to see me until I was 10-12 weeks along and told me to wait until after we had moved to Idaho before pursuing an appointment. We moved to Idaho the middle of June 2006 and while I didn't have crazy morning sickness, I did have pregnancy symptoms.
I was almost 11 weeks along when I noticed I was spotting brown blood several times a day. After two days of that and starting to panic, DH and I headed to the ER on base. A doctor checked my cervix, and said it was high and tight. She tried to find a heartbeat of the baby using an external doppler and declared that it must be too early for it to be detected. She didn't think I had anything to worry about and didn't even think I needed an u/s. She sent us on our way. Not two days later, DH and I were in Boise for the weekend at a movie. I started cramping something fierce and bleeding. A lot. I was miserable and begged DH to drive me back home. By the time we got back, I was full on hemorrhaging and in serious pain. It was hours before the bleeding and the passing of very large clots was under control enough for us to get back in the car and get to the ER. DH was making me drink as much water and Gatorade as I could tolerate as I had lost a significant amount of blood. Once in the ER, there was nothing they could do for us other than document that yes, I had had a miscarriage and again sent me home this time armed with Motrin and something to make my uterus cramp down further. I was dilated to 7cm and had the contractions to go with it. July 3, 2006 was a very long, painful night.
I continued to bleed for another two weeks and knew something still wasn't right. I got in to see an OB on base and during the pelvic exam she got very quiet and asked for assistance from another doctor. I was doing my best not to panic at that point. Our baby and the placenta were stuck in my birth canal. As both doctors were working on me, there was a sigh of relief as they were able to pull them out but then that triggered a gush of blood that had been building up behind the blockage. It looked like a murder scene around me. I was then admitted to the hospital for the amount of blood that I had lost and got my first ever IV (and 6 tries to find a vein along with it as I was fairly dehydrated-eventually they called for help and a chief from the ER was able to get it in). I was given a shot in my arm to help stop the bleeding and was told that I would have to have surgery if I didn't stop bleeding soon-like I somehow had control over that.
The bleeding did finally stop and I was able to go home. The emotional damage from that miscarriage is long lasting and something we both will never forget. Our baby and the placenta were sent off for testing. The pathology report showed no chromosomal abnormalities and no clotting factors.
It took us another 18 months before I was able to conceive again. This time I knew what could happen and I was freaked out that it was going to happen again. And, it did. DH was TDY when I noticed I was spotting brown blood again. I was nine weeks along. My friend met me in Boise (where I had jut gotten off work) at the hospital. I got in right away and was given an u/s. Two gestational sacs were noted, but no heartbeats. I was crushed.
I was scheduled for a D&C for soon after that as I absolutely did not want to go through a natural miscarriage like the one I had prior. DH wasn't able to get back home from where ever he was to be with me so thank the Lord, my bestie was able and helped get me through my first ever surgery.
Once again everything came back normal from pathology. Both DH and I did massive amounts of blood work for a recurrent miscarriage panel. And again, all normal. I was then sent to my first RE and started infertility treatments under the diagnosis of "unexplained infertility and recurrent pregnancy loss".
We tried three IUI's, a couple with Clomid or Fermara and all with injections. On a 4th IUI attempt, I over stimulated and it was turned into IVF (transferred 3 embryos that resulted in a negative pt test). After we moved to KS, I went on to have a FET and another miscarriage. We decided to try 3 rounds of "timed intercourse" with injections-once again all negative. Once in AZ, a new RE was shocked to learn no one thought to check me for endometriosis. I then had excision surgery that removed stage III endometriosis and did IVF a month later where I conceived our little Skittle. Just over a year after she was born, I had an endometrial biopsy (which had to be done three times as the doc couldn't get a good enough sample), a uterine septum repair surgery and three more FETs to try and have a sibling for her. All negative. I had laser surgery again in 2013 for endo, IVF twice more and had an early miscarriage from a natural conception in 2014. My last FET was cancelled due to cellular death of the embryo.
It's been a long road. It's been over four years stopping infertility treatments but yet, here we are about to try again.
If you read all that, I thank you. It felt good to finally write down our story. I've seen Gods hand throughout all of this. He's protected us and shown us what a miracle and blessing children are. He placed people in my life exactly when I needed them. Our little Skittle is a miracle baby. She survived when all our others have not and I am overwhelmingly thankful for her life. I believe God is still merciful and good no matter our outcomes. He is good whether He decides to give us more children or if He doesn't.
We thank you all for the outpouring of love and support you've shown us through our continued journey.
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