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nraboni
Uggh...
Member since 10/09 6905 total posts
Name:
Nicole
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Endo, Lap Surgery and Immune Issues
I am very overwhelmed and have a million things going on in my head and I am also Stimming so the hormones are out of whack.
I am under Dr. B's care and we are doing Stims for an IVF cycle that will be frozen to treat Immune Issues and possible Endometriosis.
I have very elevated Natural Killer T cells and the inflamatory cytokines are also causing the fluid surrounding the cells to be elevated. He also said something about phospholipid antibodies.
All of the above could be linked to Endo along with some of the things he has seen with my sonos and my right ovary.
He is course of treatment is to finish Stims and do the ER sometime next week. Then start treating the immune issues with lovenox, prednisone and intralipids. Meanwhile, he wants to me have Lap Surgery for the possible Endo. Once all of that is done then I will have the transfer.
I just have no idea what a lot of this means and the timing of everything. I feel like I wasted an entire year by just going to Dr. Kofinas for monitoring and then when that didn't work I went to RSoNY and had two failed IUIs. There was never any mention about Endo or these immune issues. If I had gone to Dr. B sooner than this could have all been resolved.
Any information or like stories are very much appreciated.
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Posted 10/9/13 3:13 PM  |
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kiki1103
LIF Infant
Member since 7/10 313 total posts
Name:
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Re: Endo, Lap Surgery and Immune Issues
Just saw this now, sorry! We have very similar cases. I did a laparoscopy 2 weeks ago after Dr B suspected endo and I wound up with stage II borderline III endometrioisis and a cyst (non endometrioma) on my right ovary that was removed. Dr B said I had to wait 2 cycles after the lap to start the IVF process to heal. He will probably recommend the same to you. Did he recommend Dr Pillitteri for the lap?
Dr B told me the majority of his patients with endo also have elevated cytokines/NK. Some research suggests that endometriosis is an Autoimmune disease where the immune system attacks the body's own tissue which results in inflammation.
I did a bit of research and the reason they do FET for patients like us is that the medications for IVF can cause inflammatory cytokines to become even more elevated so they will do a freeze all cycle and treat the inflammation before transfering.
I think we are in good hands now. I did see another RE for a second opinion who said I most likely did not have endo.. well turns out I did! Now I am confident in my decision to stay with Dr B.
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| Posted 10/11/13 10:08 AM |
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nraboni
Uggh...
Member since 10/09 6905 total posts
Name:
Nicole
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Re: Endo, Lap Surgery and Immune Issues
Posted by kiki1103
Just saw this now, sorry! We have very similar cases. I did a laparoscopy 2 weeks ago after Dr B suspected endo and I wound up with stage II borderline III endometrioisis and a cyst (non endometrioma) on my right ovary that was removed. Dr B said I had to wait 2 cycles after the lap to start the IVF process to heal. He will probably recommend the same to you. Did he recommend Dr Pillitteri for the lap?
Dr B told me the majority of his patients with endo also have elevated cytokines/NK. Some research suggests that endometriosis is an Autoimmune disease where the immune system attacks the body's own tissue which results in inflammation.
I did a bit of research and the reason they do FET for patients like us is that the medications for IVF can cause inflammatory cytokines to become even more elevated so they will do a freeze all cycle and treat the inflammation before transfering.
I think we are in good hands now. I did see another RE for a second opinion who said I most likely did not have endo.. well turns out I did! Now I am confident in my decision to stay with Dr B.
Thanks Kristen!! We do have very similar cases.
Did you have any symptoms that would point to Endo? Or was it just a suspicion of Dr. B's? Also, when they did the lap, they removed what they found within the same surgery, right? Because I read about doing the lap to see if there was anything there and then doing another surgery to remove it and I thought that was crazy.
He did reccomend Dr. Pillitteri who is actually the OB that delivered my DD. I put a call in to him on Wednesday so I could schedule the Lap for November and of course he has not called me back yet.
Have you gone through your ER and are now just waiting to do the transfer?
How are you being treated for the elevated NKT Cells?
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| Posted 10/11/13 10:18 AM |
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kiki1103
LIF Infant
Member since 7/10 313 total posts
Name:
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Re: Endo, Lap Surgery and Immune Issues
Posted by nraboni
Posted by kiki1103
Just saw this now, sorry! We have very similar cases. I did a laparoscopy 2 weeks ago after Dr B suspected endo and I wound up with stage II borderline III endometrioisis and a cyst (non endometrioma) on my right ovary that was removed. Dr B said I had to wait 2 cycles after the lap to start the IVF process to heal. He will probably recommend the same to you. Did he recommend Dr Pillitteri for the lap?
Dr B told me the majority of his patients with endo also have elevated cytokines/NK. Some research suggests that endometriosis is an Autoimmune disease where the immune system attacks the body's own tissue which results in inflammation.
I did a bit of research and the reason they do FET for patients like us is that the medications for IVF can cause inflammatory cytokines to become even more elevated so they will do a freeze all cycle and treat the inflammation before transfering.
I think we are in good hands now. I did see another RE for a second opinion who said I most likely did not have endo.. well turns out I did! Now I am confident in my decision to stay with Dr B.
Thanks Kristen!! We do have very similar cases.
Did you have any symptoms that would point to Endo? Or was it just a suspicion of Dr. B's? Also, when they did the lap, they removed what they found within the same surgery, right? Because I read about doing the lap to see if there was anything there and then doing another surgery to remove it and I thought that was crazy.
He did reccomend Dr. Pillitteri who is actually the OB that delivered my DD. I put a call in to him on Wednesday so I could schedule the Lap for November and of course he has not called me back yet.
Have you gone through your ER and are now just waiting to do the transfer?
How are you being treated for the elevated NKT Cells?
Dr B did a sonogram that showed I had reverse blood flow and a lot of resistance all over. It was one of those heat imaging dopler sonograms. He said when he sees those symptoms over 90% of patients he sends for lap have endo. I also had other symptoms like heavy bleeding and cramping during my periods. I must say, I have my first AF since the surgery, and my cramps are SO much better.
Dr P will definitely remove anything he finds at the same time (you definitely don't want to do it twice!) and he will do an HSG and D&C at the same time.
I don't have elevated NK cells, only cytokines and I am trying to find out what the treatment plan will be.
My guess for you is he will wait 2 cycles after your surgery to allow you the time to heal. Hopefully you hear from Dr P soon! I know he does surgery on Wednesday and Friday and is only in his office on Monday and Thursday. He will probably want you to come in for a consult and will then schedule the surgery after that.
Let me know if you have any questions!
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| Posted 10/11/13 3:18 PM |
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Melis2700
LIF Adolescent
Member since 10/09 508 total posts
Name:
Melissa
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Re: Endo, Lap Surgery and Immune Issues
I also have endo. Mine is stage 4. My first re ignored it so I went to see a surgeon dr Tamir seckin. I had surgery in march where he removed one cyst and drained the other. My bowel is attached to my uterus and I have endo in my diaphragm so will need another surgery for that down the line as he did not remove that yet. I just did a ivf cycle. Not only did I get double the eggs than the cycle before I had surgery but this cycle ended in a bfp and I truly believe it is a result of having most of endo removed. Mine was not a frozen trf though. Good luck to you ladies!
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| Posted 10/11/13 3:50 PM |
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KMCGK
Gotta have faith
Member since 7/09 2176 total posts
Name:
Keep the Faith
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Re: Endo, Lap Surgery and Immune Issues
After a couple of failed IVF cycles, cysts, and some symptoms of endo like painful periods (labor pain!) and heavy bleeding, Dr.B and Dr. Pill suspected endo. I previously had 3 D&Cs, two from losses and one Dr. Pill corrected from my first RE so I was perfectly fine with Dr. Pill going in again. Although the endo was mild, I had scarring and adhesions all over my abdomen and one of my ovaries. I also had surgery as an infant which could've created a decent amount of scar tissue.
I believe I took a couple months off and did a fresh cycle.
ETA: I also had a TON of other immune, thrombo factors.
Message edited 10/13/2013 8:24:47 AM.
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| Posted 10/13/13 8:23 AM |
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Lillies
Grateful for my babies!
Member since 2/12 4571 total posts
Name:
<3
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Re: Endo, Lap Surgery and Immune Issues
This thread has so much great info.
THANK YOU LADIES!
I am scheduling with Dr. B and taking a break from my other RE. Do any of you ladies have out of network ins or was it all in network?
I have GHI which is out of network so I am worried how much this will cost us. I just got married so funds are a bit tight!
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| Posted 10/25/13 10:30 PM |
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