AF question and litttle update~ (everything mentioned and TMI)

AF question and litttle update~ (everything mentioned and TMI)

Teresa
Teresa

April 18th, 2012, 12:36 pm #1

I hope everyone is well, I am trying to catch up on where everyone is at and what's happening.

On Saturday, I wound up in the hospital. Hemhorrage. I got AF on Monday April 9. Lasted 3 days. Day 4 and 5 were very light. Day 6, I felt a gush and it was like Niagara Falls with a clot the size of a grapefruit, followed by smaller clots and profuse bleeding. I was pale and weak. I called the last RE I followed up with about my fibroid and he said to get into bed and if it continues to go to the ER. 3 hours later, there we were in the ER. They gave me an IV and took blood. The IV made me feel a little better, but I wish I could post pictures of what they did to my arms. I have on both arms, 4 blown out veins and bruising the size of baseballs in 3 spots. The blood work showed no PG and no anemia, so thats good. But noone could tell me what caused this or why. It "could" be the fibroid. It "could" be the endometriosis. FRUSTRATING! They also did nothing to stop it, so I had to come home and rest.

Sunday went for an u/s at the RE's office. They saw the fibroid, its still 2.3. Said it "could" be. I am having the sono saline for the third time next cycle, under anesthesia.

Tuesday, went for bloodwork and another sono, the RE wanted to see where I am at in my cycle.
(I was scheduled to do the water sono saline this week BUT their lab was closed and they couldnt do any procedures at all there. So, have to wait for next cycle (only because I'm having this under anesthesia, as I will not subject myself to that pain again)

The dr was wondering if with my bleeding that they might be able to do the sono saline on Monday but it looks like by Monday I will have ovulated. Yesterday he saw a follicle 16.9 but blood showed no ovulation just yet. Going back tomorrow for blood and u/s.

I know I said I was going to leave this fibroid alone but it seems that it may be causing me to bleed for too many days and now it's a quality of life issue. So, I'm thinking that I will be having the surgery after all. Who knows, maybe I will get super lucky after it and conceive naturally since this RE seems 100% sure that it's distorting my uterus and affecting implantation. (I think he may be right after all I have not gotten PG now for 6 cycles and getting PG was never the issue for me, staying PG was)

The only thing I'm concerned about is having out via lap or via myomectomy (c section cut) the RE yesterday told me that new studies show that having it out laparoscopically isnt more dangerous than having it out with the big incision. (Of course, If you look this up, it says that if you want to have children its better to have an intramural fibroid taken out with the c-section cut since they can get in there and really see better than they can laparoscopically)

I can accept it has to come out Im just worried I will be forced to make a decision about being cut c-section or doing laparoscopic. Obviosuly I dont want to have to recover all summer from a c section cut. But I think because I took some "time off" from this all, I'm now in a better frame of mind to accept whatever the surgeons think I need to do.

That's all! I hope everyone is doing well and I look forward to seeing your updates! XOXO
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Erin
Erin

April 18th, 2012, 1:30 pm #2

That sounds awful and scary Teresa. So sorry you're now inexplicably bleeding on top of everything else. On the open procedure vs lap: my 2 cents as someone whose gone through a lot of open procedures and a couple laps is, if there is any way you can get to a great laparoscopic surgeon, I would highly suggest doing it that way. The pain and the potential adhesions that an open procedure can cause in my mind makes lap much more desirable. Obviously, what you want most is for your uterus to come out with the least damage possible, but if you go to a really good lap GYN surgeon, I have to think those risks would be minimized. I have an EXCELLENT surgeon in Boston who only does lap gyn surgeries- I have no idea if you have insurance that would cover you here, but if you do, I would be happy to give you his info.

In any case, so sorry you're going through this and hoping better times are right around the corner!
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Mrs. McIrish
Mrs. McIrish

April 18th, 2012, 2:48 pm #3

I hope everyone is well, I am trying to catch up on where everyone is at and what's happening.

On Saturday, I wound up in the hospital. Hemhorrage. I got AF on Monday April 9. Lasted 3 days. Day 4 and 5 were very light. Day 6, I felt a gush and it was like Niagara Falls with a clot the size of a grapefruit, followed by smaller clots and profuse bleeding. I was pale and weak. I called the last RE I followed up with about my fibroid and he said to get into bed and if it continues to go to the ER. 3 hours later, there we were in the ER. They gave me an IV and took blood. The IV made me feel a little better, but I wish I could post pictures of what they did to my arms. I have on both arms, 4 blown out veins and bruising the size of baseballs in 3 spots. The blood work showed no PG and no anemia, so thats good. But noone could tell me what caused this or why. It "could" be the fibroid. It "could" be the endometriosis. FRUSTRATING! They also did nothing to stop it, so I had to come home and rest.

Sunday went for an u/s at the RE's office. They saw the fibroid, its still 2.3. Said it "could" be. I am having the sono saline for the third time next cycle, under anesthesia.

Tuesday, went for bloodwork and another sono, the RE wanted to see where I am at in my cycle.
(I was scheduled to do the water sono saline this week BUT their lab was closed and they couldnt do any procedures at all there. So, have to wait for next cycle (only because I'm having this under anesthesia, as I will not subject myself to that pain again)

The dr was wondering if with my bleeding that they might be able to do the sono saline on Monday but it looks like by Monday I will have ovulated. Yesterday he saw a follicle 16.9 but blood showed no ovulation just yet. Going back tomorrow for blood and u/s.

I know I said I was going to leave this fibroid alone but it seems that it may be causing me to bleed for too many days and now it's a quality of life issue. So, I'm thinking that I will be having the surgery after all. Who knows, maybe I will get super lucky after it and conceive naturally since this RE seems 100% sure that it's distorting my uterus and affecting implantation. (I think he may be right after all I have not gotten PG now for 6 cycles and getting PG was never the issue for me, staying PG was)

The only thing I'm concerned about is having out via lap or via myomectomy (c section cut) the RE yesterday told me that new studies show that having it out laparoscopically isnt more dangerous than having it out with the big incision. (Of course, If you look this up, it says that if you want to have children its better to have an intramural fibroid taken out with the c-section cut since they can get in there and really see better than they can laparoscopically)

I can accept it has to come out Im just worried I will be forced to make a decision about being cut c-section or doing laparoscopic. Obviosuly I dont want to have to recover all summer from a c section cut. But I think because I took some "time off" from this all, I'm now in a better frame of mind to accept whatever the surgeons think I need to do.

That's all! I hope everyone is doing well and I look forward to seeing your updates! XOXO
First off, I am happy to see your update even though it isn't a "good" update. Just good to hear from you as I think of you often! I can't help wtih the question about the c-sect or lap surgery. I hope you can get through it without further trauma. The bleeding sounds miserable.

I don't really have much of an update and haven't been posting much. I had a hysteroscopy about 9 days ago and my polyps were removed. The pathology was fine. I was looking at cycling next cycle (today is Cd8) but it looks like I'd hit the time when C.ooper is closed for ER/ET. So, I am just hanging around!
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Teresa
Teresa

April 18th, 2012, 3:01 pm #4

I am so happy to hear from you, you too have been on my mind.

I'm very glad that hysteroscopy is behind you now and that it went well. I'm hoping and praying that this is what you needed to go on to have your successful cycle. Good riddance polyps!!!!

It stinks that Cooper is closed, but maybe it's a good thing, your body gets a chance to further recoup from the hystero and you will be good to go in June with the warmer weather and a good rest.

Are you still looking for work?

Please update when you can, I always think of you.



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Teresa
Teresa

April 18th, 2012, 3:09 pm #5

That sounds awful and scary Teresa. So sorry you're now inexplicably bleeding on top of everything else. On the open procedure vs lap: my 2 cents as someone whose gone through a lot of open procedures and a couple laps is, if there is any way you can get to a great laparoscopic surgeon, I would highly suggest doing it that way. The pain and the potential adhesions that an open procedure can cause in my mind makes lap much more desirable. Obviously, what you want most is for your uterus to come out with the least damage possible, but if you go to a really good lap GYN surgeon, I have to think those risks would be minimized. I have an EXCELLENT surgeon in Boston who only does lap gyn surgeries- I have no idea if you have insurance that would cover you here, but if you do, I would be happy to give you his info.

In any case, so sorry you're going through this and hoping better times are right around the corner!
Hi Erin!!

Erin, Thank you for that offer to send me the info on the lap surgeon. If you don't mind, I would really appreciate it if you could do that for me- my email is Rollinstone1813@aol.com I'm not sure if our insurance would cover me with him since I'm in NY and not sure how that works....I have Empire Blue Cross Blue Shield. I dont know why I have a hard time finding a surgeon here that only does laps but most of them are located in NYC and take no insurance at all. Grr!

I want to feel I'm in the best hands and
I am with you, if it can be removed without having to cut me open and by someone who really knows what they're doing, I would feel much better about things.

How are you doing? Any updates? I think of you often also and am hoping for good news very soon!!

Love T








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Laura
Laura

April 18th, 2012, 3:17 pm #6

I hope everyone is well, I am trying to catch up on where everyone is at and what's happening.

On Saturday, I wound up in the hospital. Hemhorrage. I got AF on Monday April 9. Lasted 3 days. Day 4 and 5 were very light. Day 6, I felt a gush and it was like Niagara Falls with a clot the size of a grapefruit, followed by smaller clots and profuse bleeding. I was pale and weak. I called the last RE I followed up with about my fibroid and he said to get into bed and if it continues to go to the ER. 3 hours later, there we were in the ER. They gave me an IV and took blood. The IV made me feel a little better, but I wish I could post pictures of what they did to my arms. I have on both arms, 4 blown out veins and bruising the size of baseballs in 3 spots. The blood work showed no PG and no anemia, so thats good. But noone could tell me what caused this or why. It "could" be the fibroid. It "could" be the endometriosis. FRUSTRATING! They also did nothing to stop it, so I had to come home and rest.

Sunday went for an u/s at the RE's office. They saw the fibroid, its still 2.3. Said it "could" be. I am having the sono saline for the third time next cycle, under anesthesia.

Tuesday, went for bloodwork and another sono, the RE wanted to see where I am at in my cycle.
(I was scheduled to do the water sono saline this week BUT their lab was closed and they couldnt do any procedures at all there. So, have to wait for next cycle (only because I'm having this under anesthesia, as I will not subject myself to that pain again)

The dr was wondering if with my bleeding that they might be able to do the sono saline on Monday but it looks like by Monday I will have ovulated. Yesterday he saw a follicle 16.9 but blood showed no ovulation just yet. Going back tomorrow for blood and u/s.

I know I said I was going to leave this fibroid alone but it seems that it may be causing me to bleed for too many days and now it's a quality of life issue. So, I'm thinking that I will be having the surgery after all. Who knows, maybe I will get super lucky after it and conceive naturally since this RE seems 100% sure that it's distorting my uterus and affecting implantation. (I think he may be right after all I have not gotten PG now for 6 cycles and getting PG was never the issue for me, staying PG was)

The only thing I'm concerned about is having out via lap or via myomectomy (c section cut) the RE yesterday told me that new studies show that having it out laparoscopically isnt more dangerous than having it out with the big incision. (Of course, If you look this up, it says that if you want to have children its better to have an intramural fibroid taken out with the c-section cut since they can get in there and really see better than they can laparoscopically)

I can accept it has to come out Im just worried I will be forced to make a decision about being cut c-section or doing laparoscopic. Obviosuly I dont want to have to recover all summer from a c section cut. But I think because I took some "time off" from this all, I'm now in a better frame of mind to accept whatever the surgeons think I need to do.

That's all! I hope everyone is doing well and I look forward to seeing your updates! XOXO
I'm so sorry you are dealing with something so scary, and I wish I had better advice. I guess the silver lining is that now your decision has been made for you, you know? You don't have to worry about if you should take it out or not any more. I think you are making the right decision to have it out now that it's affecting your quality of life.

I tend to be more old-fashioned when it comes to medicine, and I think I would prefer having an incision, because if something went wrong and I started bleeding a lot I think it would be easier to fix if I were already open. But that's just me. As far as recovery time, friends who had C-sections spent 4 days in the hospital but then were fine, so I don't think you'd be looking at months and months of recovery. You'd probably be able to start TTC the cycle after your first AF after the procedure (the same that OBs say about m/c).

Best wishes, T. Keep us updated ok?
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Teresa
Teresa

April 18th, 2012, 3:49 pm #7

Hi Laura,

Laparoscopic surgery is much less invasive and less recovery time. It is much easier to recover from a laparoscopy than from a huge incision in the abdomen. And not for nothing but I have no kids and really am NOT happy about having to have a c-section scar on my stomach wtih no baby to show for it. It's just a slap in my face. To me. Some may feel differently....so- not sure if that makes sense, but to me- it just does.

Its a contraversial decision even to the best doctors. To do it laparoscopically or to do it abdominally. Some say that by doing it abdominally, the surgeon can better suture the uterine wall. However, there is a greater risk of infection and scar tissue this way. Some studies show its better to do abdominally if you want to preserve your fertility and newer studies show it makes no difference. It is a VERY tough call and a huge burden for me to bear knowing at the end of the day, I will have to be the one to make the call. That is what is most draining, in all of this. The choices to be made.

Whether I get laparoscopic OR abdominal myomectomy- I cannot try to have a baby for at least 3 months. It sucks, but I've made my peace with it and I refuse to cry anymore over this. It is what it is. I'm 40 in 4 months. And the reality is, I may never be a mother and I am at the point where I have accepted that. Is it what I wanted, no. But life is to be lived without depression and crying and obsessing and being miserable. I just want to live my life not crying every day and I have been doing much better at that by taking some time off from all of this. So, bring on the surgery- I want to do it and I want to heal and I want to feel well! XOXO





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mel
mel

April 18th, 2012, 9:03 pm #8

I hope everyone is well, I am trying to catch up on where everyone is at and what's happening.

On Saturday, I wound up in the hospital. Hemhorrage. I got AF on Monday April 9. Lasted 3 days. Day 4 and 5 were very light. Day 6, I felt a gush and it was like Niagara Falls with a clot the size of a grapefruit, followed by smaller clots and profuse bleeding. I was pale and weak. I called the last RE I followed up with about my fibroid and he said to get into bed and if it continues to go to the ER. 3 hours later, there we were in the ER. They gave me an IV and took blood. The IV made me feel a little better, but I wish I could post pictures of what they did to my arms. I have on both arms, 4 blown out veins and bruising the size of baseballs in 3 spots. The blood work showed no PG and no anemia, so thats good. But noone could tell me what caused this or why. It "could" be the fibroid. It "could" be the endometriosis. FRUSTRATING! They also did nothing to stop it, so I had to come home and rest.

Sunday went for an u/s at the RE's office. They saw the fibroid, its still 2.3. Said it "could" be. I am having the sono saline for the third time next cycle, under anesthesia.

Tuesday, went for bloodwork and another sono, the RE wanted to see where I am at in my cycle.
(I was scheduled to do the water sono saline this week BUT their lab was closed and they couldnt do any procedures at all there. So, have to wait for next cycle (only because I'm having this under anesthesia, as I will not subject myself to that pain again)

The dr was wondering if with my bleeding that they might be able to do the sono saline on Monday but it looks like by Monday I will have ovulated. Yesterday he saw a follicle 16.9 but blood showed no ovulation just yet. Going back tomorrow for blood and u/s.

I know I said I was going to leave this fibroid alone but it seems that it may be causing me to bleed for too many days and now it's a quality of life issue. So, I'm thinking that I will be having the surgery after all. Who knows, maybe I will get super lucky after it and conceive naturally since this RE seems 100% sure that it's distorting my uterus and affecting implantation. (I think he may be right after all I have not gotten PG now for 6 cycles and getting PG was never the issue for me, staying PG was)

The only thing I'm concerned about is having out via lap or via myomectomy (c section cut) the RE yesterday told me that new studies show that having it out laparoscopically isnt more dangerous than having it out with the big incision. (Of course, If you look this up, it says that if you want to have children its better to have an intramural fibroid taken out with the c-section cut since they can get in there and really see better than they can laparoscopically)

I can accept it has to come out Im just worried I will be forced to make a decision about being cut c-section or doing laparoscopic. Obviosuly I dont want to have to recover all summer from a c section cut. But I think because I took some "time off" from this all, I'm now in a better frame of mind to accept whatever the surgeons think I need to do.

That's all! I hope everyone is doing well and I look forward to seeing your updates! XOXO
How scary! I am so glad that you are okay. What an ordeal! I'm sorry that you are still having to deal with this, but I am glad that you are moving forward to do what is best for your health. These decisions are never easy, but I'm sure you will make the decision that is best for you. Wishing you the best of luck!
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Erin
Erin

April 18th, 2012, 9:24 pm #9

Hi Erin!!

Erin, Thank you for that offer to send me the info on the lap surgeon. If you don't mind, I would really appreciate it if you could do that for me- my email is Rollinstone1813@aol.com I'm not sure if our insurance would cover me with him since I'm in NY and not sure how that works....I have Empire Blue Cross Blue Shield. I dont know why I have a hard time finding a surgeon here that only does laps but most of them are located in NYC and take no insurance at all. Grr!

I want to feel I'm in the best hands and
I am with you, if it can be removed without having to cut me open and by someone who really knows what they're doing, I would feel much better about things.

How are you doing? Any updates? I think of you often also and am hoping for good news very soon!!

Love T







Hope it helps!
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teresa
teresa

April 18th, 2012, 10:12 pm #10

I am going to check my email now...thank you SO MUCH for sending me the info.
I am going to reply to you and I have a question for you about some blood work I had done- if you don't mind, would you take a look? I was told my blood work was normal but I just looked at the paper and I see there are 3 things that say concern and noone mentioned them to me.
Thank you again!
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