Hello, Introduction and seeking your expertise (very long)

Hello, Introduction and seeking your expertise (very long)

Teresa
Teresa

March 14th, 2012, 6:28 pm #1

Hello, my name is Teresa. I post frequently on the white board. Someone there suggested I visit here to ask for your help regarding a fibroid I found out I had recently. They told me many of you have had fibroid problems, too.

I am 39 + 7 months old and have never had a baby. I have had 4 miscarriages total, one from another relationship when I was 27 and 3 from 2009-2011. All miscarriages happened just under 7 weeks. Saw the heartbeat on 2. I had testing done and everything is normal for the most part- I have endometriosis, diagnosed by a lap in 2009, and elevated FSH. I have not yet done any IVF or IUI or even taken any fertility drugs, except endometrin suppositories. I just saw an RE for the first time in December 2011. I was married in 2009 and I guess you could say I was naieve and never thought I would be having so much trouble.

I went to an RE consult on 1/30 (Dr C heck in NJ) during this visit, the nurse did a vag u/s and told me I had a fibroid. I was shocked to say the least because I had an HSG and a vag u/s in December and nothing was noted about this. I went to a radiology center for 3 more vaginal u/s and all the techs saw the fibroid on the u/s. I then had a sono saline hysterogram done in NJ and the dr who did it told me this fibroid was compressing the lining and distorting my uterine cavity. She said it needed to come our right away. Desperate to have it removed asap, I called my OBGYN who had done my lap in 2009 and 2 D+C's. I trust her and I knew I wanted her to do the surgery. The dr (b rasile, in NJ) told her I needed a hysteroscopic myomectomy. She sent over the findings to my dr in NY and surgery was scheduled for March 1st.

When the day came and I woke up from the surgery (which BTW was done cycle day 16), my Dr was floored. She told me there was nothing there!!! She went in with the hysteroscope and said my uterus was clean, not distorted at all and to be sure, she did another sono saline hysterogram on me (thank goodness it was done under anesthesia because the first one I had was THE worst pain I have EVER had, EVER, I thought I was going to vomit and pass out on the table) The saline sono came back fine. My dr was completely baffled. Of course I was a wreck because how could this be? How could 5 people have seen a fibroid and NOW it's GONE? She told me not to worry and to go get pregnant. REALLY?

Well, that wasn't good enough for me- I needed to know what the story was here. So I took it upon myself to get her to order an MRI for me. I had the MRI done on Monday. The report came back as this:
The uterus is anteverted and anteflexed. It measures 7.9 x 3.7 x 5.4 cm. The cervix is normal. The endometrial stripe measures 5 mm (day 2 of AF). There is a 2.3 x 1.7 x 1.4 cm INTRAMURAL FIBROID in the uterine fundus.

The left ovary measures 2.3 x 1.3 x 1.7 cm and contains small cysts and follicles. The right ovary measures 2.9 x 2.3 x 2.4 cm and contains small cysts and follicles, as well as a 1.7 cm corpus luteum cycst.

There is scant free pelvic fluid.
The bladder is unremarkable.
No bowel related abnormality is seen.
Impression: 2.3 cm fundal intramural fibroid.

The dr who did my surgery said she did NOT see this on the hysteroscope and the SIS did not show any compression of the uterus at all. She stands firm on that. She said I don't need to take this out at all and that if it DID grow, it would grow out (away from the uterus) I asked her if I were your daughter what would you tell me and she said that she would assure her it doesnt need to come out. She thinks Dr B in NJ made a mistake and she said she will never go by another Drs report again. She told DH and I to go and get pregnant.

I am very, very conflicted about what to do. I have an appointment with an RE on Friday who does fibroid surgery and will see what he thinks. I am also going back to the first dr in NJ who did the first saline sono on me and said the hystero showed this fibroid compressing my ute. She also told me my uterus was 4 inches and the fibroid was 2 and the fibroid was taking up most of my uterus. But that's not the case according to the hysteroscopy, the saline sono #2 and an MRI. I am not sure if I should have this fibroid taken out or not.

My husband and I don't have much money. We can only afford to do one round of IVF. Our insurance doesnt cover much. I would hate to have an unecessary surgery again since I've already dont so many procedures, d+cs, lap, hystero, etc. I fear scar tissue, I fear complications and with me fast approaching 40 in under 5 monhts, I feel very under the gun. But- if the fibroid is going to harm a fetus/baby or even prevent me from getting PG again, then I would want to do the right thing and have it removed.

I think the world of the opinions of the ladies on these boards and I am hoping you can maybe give me some thoughts as to what you think about this. Thank you for taking the time to read it, and for any advice you have! with gratitude, Teresa from the white board.


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thesameboat
thesameboat

March 14th, 2012, 6:43 pm #2

I don't know how helpful my post will be since I don't know much about fibroids, but I have one. Mine was discovered during a routine laporascopy when I failed to get pregnant. My RE never felt it was a problem.

It did grow rather large during my pregnancy, but the only problem it caused was that it grew under the baby and therefore I had to have a C-section. They often grow larger during pregnancy as they are often estrogen-fed.

However, I reacted physically (literally) to your doc's suggestion that you 'go home and get pregnant' because it is NOT normal to have as many miscarriages as you have had. Have they done testing for immune issues?
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minniet
minniet

March 14th, 2012, 6:55 pm #3

Hello, my name is Teresa. I post frequently on the white board. Someone there suggested I visit here to ask for your help regarding a fibroid I found out I had recently. They told me many of you have had fibroid problems, too.

I am 39 + 7 months old and have never had a baby. I have had 4 miscarriages total, one from another relationship when I was 27 and 3 from 2009-2011. All miscarriages happened just under 7 weeks. Saw the heartbeat on 2. I had testing done and everything is normal for the most part- I have endometriosis, diagnosed by a lap in 2009, and elevated FSH. I have not yet done any IVF or IUI or even taken any fertility drugs, except endometrin suppositories. I just saw an RE for the first time in December 2011. I was married in 2009 and I guess you could say I was naieve and never thought I would be having so much trouble.

I went to an RE consult on 1/30 (Dr C heck in NJ) during this visit, the nurse did a vag u/s and told me I had a fibroid. I was shocked to say the least because I had an HSG and a vag u/s in December and nothing was noted about this. I went to a radiology center for 3 more vaginal u/s and all the techs saw the fibroid on the u/s. I then had a sono saline hysterogram done in NJ and the dr who did it told me this fibroid was compressing the lining and distorting my uterine cavity. She said it needed to come our right away. Desperate to have it removed asap, I called my OBGYN who had done my lap in 2009 and 2 D+C's. I trust her and I knew I wanted her to do the surgery. The dr (b rasile, in NJ) told her I needed a hysteroscopic myomectomy. She sent over the findings to my dr in NY and surgery was scheduled for March 1st.

When the day came and I woke up from the surgery (which BTW was done cycle day 16), my Dr was floored. She told me there was nothing there!!! She went in with the hysteroscope and said my uterus was clean, not distorted at all and to be sure, she did another sono saline hysterogram on me (thank goodness it was done under anesthesia because the first one I had was THE worst pain I have EVER had, EVER, I thought I was going to vomit and pass out on the table) The saline sono came back fine. My dr was completely baffled. Of course I was a wreck because how could this be? How could 5 people have seen a fibroid and NOW it's GONE? She told me not to worry and to go get pregnant. REALLY?

Well, that wasn't good enough for me- I needed to know what the story was here. So I took it upon myself to get her to order an MRI for me. I had the MRI done on Monday. The report came back as this:
The uterus is anteverted and anteflexed. It measures 7.9 x 3.7 x 5.4 cm. The cervix is normal. The endometrial stripe measures 5 mm (day 2 of AF). There is a 2.3 x 1.7 x 1.4 cm INTRAMURAL FIBROID in the uterine fundus.

The left ovary measures 2.3 x 1.3 x 1.7 cm and contains small cysts and follicles. The right ovary measures 2.9 x 2.3 x 2.4 cm and contains small cysts and follicles, as well as a 1.7 cm corpus luteum cycst.

There is scant free pelvic fluid.
The bladder is unremarkable.
No bowel related abnormality is seen.
Impression: 2.3 cm fundal intramural fibroid.

The dr who did my surgery said she did NOT see this on the hysteroscope and the SIS did not show any compression of the uterus at all. She stands firm on that. She said I don't need to take this out at all and that if it DID grow, it would grow out (away from the uterus) I asked her if I were your daughter what would you tell me and she said that she would assure her it doesnt need to come out. She thinks Dr B in NJ made a mistake and she said she will never go by another Drs report again. She told DH and I to go and get pregnant.

I am very, very conflicted about what to do. I have an appointment with an RE on Friday who does fibroid surgery and will see what he thinks. I am also going back to the first dr in NJ who did the first saline sono on me and said the hystero showed this fibroid compressing my ute. She also told me my uterus was 4 inches and the fibroid was 2 and the fibroid was taking up most of my uterus. But that's not the case according to the hysteroscopy, the saline sono #2 and an MRI. I am not sure if I should have this fibroid taken out or not.

My husband and I don't have much money. We can only afford to do one round of IVF. Our insurance doesnt cover much. I would hate to have an unecessary surgery again since I've already dont so many procedures, d+cs, lap, hystero, etc. I fear scar tissue, I fear complications and with me fast approaching 40 in under 5 monhts, I feel very under the gun. But- if the fibroid is going to harm a fetus/baby or even prevent me from getting PG again, then I would want to do the right thing and have it removed.

I think the world of the opinions of the ladies on these boards and I am hoping you can maybe give me some thoughts as to what you think about this. Thank you for taking the time to read it, and for any advice you have! with gratitude, Teresa from the white board.

For your uterus and disappearing fibroid, I would arrange to have a hysteroscopy by Dr. March in Los Angeles. He is an expert and can truly tell you what is going on with your uterus, and if there is something wrong, and he can fix it, he will fix it. There have been past discussions on this board and I know of a lady here who just had him do this (she flew in from Texas).

I agree with pp, though, you should also have an RI (Reproductive Immunologist) review, you may have a clotting disorder or other.

I have had a similar experience to you -- many pregnancies with my OE, but because I had high fsh, REs poo poo'ed the early miscarriages. It was not til I went to DE and it failed with perfect embies that I sought out more in depth diagnosis and found an RI who we are doing a new cycle with, Dr. Acacio in Orange County.

There are options on both coasts, though no one has shared another doctor similar to March in Los Angeles. They do work with a lot of out of town patients, so that should not deter you. Mainly, you will have the cost of the flight and hotel in addition to the procedure (which is not terrible).
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teresa
teresa

March 14th, 2012, 7:36 pm #4

I don't know how helpful my post will be since I don't know much about fibroids, but I have one. Mine was discovered during a routine laporascopy when I failed to get pregnant. My RE never felt it was a problem.

It did grow rather large during my pregnancy, but the only problem it caused was that it grew under the baby and therefore I had to have a C-section. They often grow larger during pregnancy as they are often estrogen-fed.

However, I reacted physically (literally) to your doc's suggestion that you 'go home and get pregnant' because it is NOT normal to have as many miscarriages as you have had. Have they done testing for immune issues?
I have had all testing done. All came back normal. Well, my highest FSH was 11.9 and has decreased every test thereafter the 11.9 FSH last month was down to 8.
She is an OB GYN who did the hysteroscopy. I am seeing an RE this Friday for a 2nd opinion.
This fibroid was first seen on 1/30. I had an HSG on 12/23 and no fibroid was seen on it.
But the dr who did the first SIS was ADAMANT itcome out because she said it was distorting my cavity. Yet there was no proof of this in the hysteroscopy/ 2nd SIS
I am losing my mind with this!!
The dr who did the surgery 2 weeks ago also mentioned to me that if it did grow during PG, it would grow away from the uterus but how would she know that?



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teresa
teresa

March 14th, 2012, 7:40 pm #5

For your uterus and disappearing fibroid, I would arrange to have a hysteroscopy by Dr. March in Los Angeles. He is an expert and can truly tell you what is going on with your uterus, and if there is something wrong, and he can fix it, he will fix it. There have been past discussions on this board and I know of a lady here who just had him do this (she flew in from Texas).

I agree with pp, though, you should also have an RI (Reproductive Immunologist) review, you may have a clotting disorder or other.

I have had a similar experience to you -- many pregnancies with my OE, but because I had high fsh, REs poo poo'ed the early miscarriages. It was not til I went to DE and it failed with perfect embies that I sought out more in depth diagnosis and found an RI who we are doing a new cycle with, Dr. Acacio in Orange County.

There are options on both coasts, though no one has shared another doctor similar to March in Los Angeles. They do work with a lot of out of town patients, so that should not deter you. Mainly, you will have the cost of the flight and hotel in addition to the procedure (which is not terrible).
we cannot afford to fly to los angeles. absolutely not an option.
i HAD a hysteroscopy on march 1st.

.




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Anonymous
Anonymous

March 14th, 2012, 7:44 pm #6

Hello, my name is Teresa. I post frequently on the white board. Someone there suggested I visit here to ask for your help regarding a fibroid I found out I had recently. They told me many of you have had fibroid problems, too.

I am 39 + 7 months old and have never had a baby. I have had 4 miscarriages total, one from another relationship when I was 27 and 3 from 2009-2011. All miscarriages happened just under 7 weeks. Saw the heartbeat on 2. I had testing done and everything is normal for the most part- I have endometriosis, diagnosed by a lap in 2009, and elevated FSH. I have not yet done any IVF or IUI or even taken any fertility drugs, except endometrin suppositories. I just saw an RE for the first time in December 2011. I was married in 2009 and I guess you could say I was naieve and never thought I would be having so much trouble.

I went to an RE consult on 1/30 (Dr C heck in NJ) during this visit, the nurse did a vag u/s and told me I had a fibroid. I was shocked to say the least because I had an HSG and a vag u/s in December and nothing was noted about this. I went to a radiology center for 3 more vaginal u/s and all the techs saw the fibroid on the u/s. I then had a sono saline hysterogram done in NJ and the dr who did it told me this fibroid was compressing the lining and distorting my uterine cavity. She said it needed to come our right away. Desperate to have it removed asap, I called my OBGYN who had done my lap in 2009 and 2 D+C's. I trust her and I knew I wanted her to do the surgery. The dr (b rasile, in NJ) told her I needed a hysteroscopic myomectomy. She sent over the findings to my dr in NY and surgery was scheduled for March 1st.

When the day came and I woke up from the surgery (which BTW was done cycle day 16), my Dr was floored. She told me there was nothing there!!! She went in with the hysteroscope and said my uterus was clean, not distorted at all and to be sure, she did another sono saline hysterogram on me (thank goodness it was done under anesthesia because the first one I had was THE worst pain I have EVER had, EVER, I thought I was going to vomit and pass out on the table) The saline sono came back fine. My dr was completely baffled. Of course I was a wreck because how could this be? How could 5 people have seen a fibroid and NOW it's GONE? She told me not to worry and to go get pregnant. REALLY?

Well, that wasn't good enough for me- I needed to know what the story was here. So I took it upon myself to get her to order an MRI for me. I had the MRI done on Monday. The report came back as this:
The uterus is anteverted and anteflexed. It measures 7.9 x 3.7 x 5.4 cm. The cervix is normal. The endometrial stripe measures 5 mm (day 2 of AF). There is a 2.3 x 1.7 x 1.4 cm INTRAMURAL FIBROID in the uterine fundus.

The left ovary measures 2.3 x 1.3 x 1.7 cm and contains small cysts and follicles. The right ovary measures 2.9 x 2.3 x 2.4 cm and contains small cysts and follicles, as well as a 1.7 cm corpus luteum cycst.

There is scant free pelvic fluid.
The bladder is unremarkable.
No bowel related abnormality is seen.
Impression: 2.3 cm fundal intramural fibroid.

The dr who did my surgery said she did NOT see this on the hysteroscope and the SIS did not show any compression of the uterus at all. She stands firm on that. She said I don't need to take this out at all and that if it DID grow, it would grow out (away from the uterus) I asked her if I were your daughter what would you tell me and she said that she would assure her it doesnt need to come out. She thinks Dr B in NJ made a mistake and she said she will never go by another Drs report again. She told DH and I to go and get pregnant.

I am very, very conflicted about what to do. I have an appointment with an RE on Friday who does fibroid surgery and will see what he thinks. I am also going back to the first dr in NJ who did the first saline sono on me and said the hystero showed this fibroid compressing my ute. She also told me my uterus was 4 inches and the fibroid was 2 and the fibroid was taking up most of my uterus. But that's not the case according to the hysteroscopy, the saline sono #2 and an MRI. I am not sure if I should have this fibroid taken out or not.

My husband and I don't have much money. We can only afford to do one round of IVF. Our insurance doesnt cover much. I would hate to have an unecessary surgery again since I've already dont so many procedures, d+cs, lap, hystero, etc. I fear scar tissue, I fear complications and with me fast approaching 40 in under 5 monhts, I feel very under the gun. But- if the fibroid is going to harm a fetus/baby or even prevent me from getting PG again, then I would want to do the right thing and have it removed.

I think the world of the opinions of the ladies on these boards and I am hoping you can maybe give me some thoughts as to what you think about this. Thank you for taking the time to read it, and for any advice you have! with gratitude, Teresa from the white board.

If you send off for other opinions they are going to want to review the images, not just the report. Do you know if the MRI showed the fibroid was distorting the cavity?

The saline ultrasound that showed the fibroid distorting the cavity should have images of it too, for a 3rd party to review, in addition to the report.
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teresa
teresa

March 14th, 2012, 7:57 pm #7

The MRI place gave me the CD with all the images. I looked at them but I cant tell whats what at all.
No mention was in the report. I am hoping the RE will look at the images on Friday? (Can they read the images?)
The first SIS all I have is some sono pictures. SHe did it in her office in NJ, they arent very "modern" there. I also have the hystero report from March 1.






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Joined: June 17th, 2008, 6:29 pm

March 14th, 2012, 8:03 pm #8

Hello, my name is Teresa. I post frequently on the white board. Someone there suggested I visit here to ask for your help regarding a fibroid I found out I had recently. They told me many of you have had fibroid problems, too.

I am 39 + 7 months old and have never had a baby. I have had 4 miscarriages total, one from another relationship when I was 27 and 3 from 2009-2011. All miscarriages happened just under 7 weeks. Saw the heartbeat on 2. I had testing done and everything is normal for the most part- I have endometriosis, diagnosed by a lap in 2009, and elevated FSH. I have not yet done any IVF or IUI or even taken any fertility drugs, except endometrin suppositories. I just saw an RE for the first time in December 2011. I was married in 2009 and I guess you could say I was naieve and never thought I would be having so much trouble.

I went to an RE consult on 1/30 (Dr C heck in NJ) during this visit, the nurse did a vag u/s and told me I had a fibroid. I was shocked to say the least because I had an HSG and a vag u/s in December and nothing was noted about this. I went to a radiology center for 3 more vaginal u/s and all the techs saw the fibroid on the u/s. I then had a sono saline hysterogram done in NJ and the dr who did it told me this fibroid was compressing the lining and distorting my uterine cavity. She said it needed to come our right away. Desperate to have it removed asap, I called my OBGYN who had done my lap in 2009 and 2 D+C's. I trust her and I knew I wanted her to do the surgery. The dr (b rasile, in NJ) told her I needed a hysteroscopic myomectomy. She sent over the findings to my dr in NY and surgery was scheduled for March 1st.

When the day came and I woke up from the surgery (which BTW was done cycle day 16), my Dr was floored. She told me there was nothing there!!! She went in with the hysteroscope and said my uterus was clean, not distorted at all and to be sure, she did another sono saline hysterogram on me (thank goodness it was done under anesthesia because the first one I had was THE worst pain I have EVER had, EVER, I thought I was going to vomit and pass out on the table) The saline sono came back fine. My dr was completely baffled. Of course I was a wreck because how could this be? How could 5 people have seen a fibroid and NOW it's GONE? She told me not to worry and to go get pregnant. REALLY?

Well, that wasn't good enough for me- I needed to know what the story was here. So I took it upon myself to get her to order an MRI for me. I had the MRI done on Monday. The report came back as this:
The uterus is anteverted and anteflexed. It measures 7.9 x 3.7 x 5.4 cm. The cervix is normal. The endometrial stripe measures 5 mm (day 2 of AF). There is a 2.3 x 1.7 x 1.4 cm INTRAMURAL FIBROID in the uterine fundus.

The left ovary measures 2.3 x 1.3 x 1.7 cm and contains small cysts and follicles. The right ovary measures 2.9 x 2.3 x 2.4 cm and contains small cysts and follicles, as well as a 1.7 cm corpus luteum cycst.

There is scant free pelvic fluid.
The bladder is unremarkable.
No bowel related abnormality is seen.
Impression: 2.3 cm fundal intramural fibroid.

The dr who did my surgery said she did NOT see this on the hysteroscope and the SIS did not show any compression of the uterus at all. She stands firm on that. She said I don't need to take this out at all and that if it DID grow, it would grow out (away from the uterus) I asked her if I were your daughter what would you tell me and she said that she would assure her it doesnt need to come out. She thinks Dr B in NJ made a mistake and she said she will never go by another Drs report again. She told DH and I to go and get pregnant.

I am very, very conflicted about what to do. I have an appointment with an RE on Friday who does fibroid surgery and will see what he thinks. I am also going back to the first dr in NJ who did the first saline sono on me and said the hystero showed this fibroid compressing my ute. She also told me my uterus was 4 inches and the fibroid was 2 and the fibroid was taking up most of my uterus. But that's not the case according to the hysteroscopy, the saline sono #2 and an MRI. I am not sure if I should have this fibroid taken out or not.

My husband and I don't have much money. We can only afford to do one round of IVF. Our insurance doesnt cover much. I would hate to have an unecessary surgery again since I've already dont so many procedures, d+cs, lap, hystero, etc. I fear scar tissue, I fear complications and with me fast approaching 40 in under 5 monhts, I feel very under the gun. But- if the fibroid is going to harm a fetus/baby or even prevent me from getting PG again, then I would want to do the right thing and have it removed.

I think the world of the opinions of the ladies on these boards and I am hoping you can maybe give me some thoughts as to what you think about this. Thank you for taking the time to read it, and for any advice you have! with gratitude, Teresa from the white board.

Sorry you are being given so much conflicting information! It's difficult to sort through.

I had several fibroids that had to be removed. The small ones were removed by hysteroscopy, and later a much larger one that was impinging on my uterine cavity was removed by abdominal myomectomy.

I went to an RE who has a uterine fibroid surgical specialty. You could try that route to get to the bottom of this. His name is Dr. Alan Berkeley at NYU in NYC.
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teresa
teresa

March 14th, 2012, 8:10 pm #9

for giving me this doctors name. I will call and set up an appointment, as I have been looking for a dr specializing in fibroid surgery and the ones I have reached out to, don't accept our insurance (empire blue cross) I really appreciate the recommendation! i was shocked how difficult it is to find someone, even in the big apple ;0)

Since I just had a hysteroscopy and she didnt see anything, I am concerned due to the location of it, I will have to have this fibroid removed with the csection cut. I am hoping it can be done laparoscopically? Really afraid to have to go through that major surgery. Do you (or anyone else) have any thoughts on how an intramural fibroid is removed?







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dana
dana

March 14th, 2012, 8:41 pm #10

I had a subserosal fibroid removed by Dr. Charles Ascher-Walsh at Mt. Sinai. He actually did it with the Da Vinci robot and my recovery was very quick. He is a top name in the field and my experience with him was excellent. He actually tried to discourage me from having the surgery until after I had my children, but in my case the symptoms were too troublesome.

Best of luck to you!
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