FANNYLOU
10-05-2006, 05:16 PM
Hello everyone!
In my previous threads I have told my complete life story so I will try to keep this one simple. I had a liver resection to remove a football size FNH last July and currently have 4 more tumors around 2 cm each. I had horrible pains with all three of my pregnacies but no one ever found out why. I believe the large tumor continued to grow with each baby. After the my third baby the pain didn't go away and it still took 3 years to find out what the problem was. I did take BC pills in the past but haven't for over 5 years and with the new tumors I don't think the BC pill is what was entirely responsible for the tumors.
I have to have a hysterectomy Nov. 29th to remove my uterus due to adenomyosis and fibroids. I have also had lots of problems with ovarian cysts in the past and can have my ovaries taken out too if I want but I am scared of what the hormone replacement therapy will do to my tumors if I do. I will be 34 in Dec. and I've not felt well in years. This all is really begining to get to me. Does anyone know if hormones that they give you after a complete hysterectomy effect the tumors like they think the BC pill do. I know that they immediatley asked if I was taken bc pill when they found the tumor but nothing more was really said. I have emailed my liver surgeon to ask his opinion but I haven't heard back. And my GYN doesn't really know that much about FNH and my Primary doesn't know anything about FNH so who do I turn to. I don't want to keep my ovaries, b/c I think they may be part of my problem. I think all of my hormones are out of wack and have caused all of these problems. Not to mention I had two miscarriages due to lack of progesterone hormone that I had to take with the other three pregnacies.
To sum things up......I just want to know if it is better to leave the ovaries and deal with the cyst or take them out and take the hormones. I can't go back and put the ovaries back in and I don't want to turn into a man!!!!!!
Can you understand what I am saying?
Thanks
Fannylou
In my previous threads I have told my complete life story so I will try to keep this one simple. I had a liver resection to remove a football size FNH last July and currently have 4 more tumors around 2 cm each. I had horrible pains with all three of my pregnacies but no one ever found out why. I believe the large tumor continued to grow with each baby. After the my third baby the pain didn't go away and it still took 3 years to find out what the problem was. I did take BC pills in the past but haven't for over 5 years and with the new tumors I don't think the BC pill is what was entirely responsible for the tumors.
I have to have a hysterectomy Nov. 29th to remove my uterus due to adenomyosis and fibroids. I have also had lots of problems with ovarian cysts in the past and can have my ovaries taken out too if I want but I am scared of what the hormone replacement therapy will do to my tumors if I do. I will be 34 in Dec. and I've not felt well in years. This all is really begining to get to me. Does anyone know if hormones that they give you after a complete hysterectomy effect the tumors like they think the BC pill do. I know that they immediatley asked if I was taken bc pill when they found the tumor but nothing more was really said. I have emailed my liver surgeon to ask his opinion but I haven't heard back. And my GYN doesn't really know that much about FNH and my Primary doesn't know anything about FNH so who do I turn to. I don't want to keep my ovaries, b/c I think they may be part of my problem. I think all of my hormones are out of wack and have caused all of these problems. Not to mention I had two miscarriages due to lack of progesterone hormone that I had to take with the other three pregnacies.
To sum things up......I just want to know if it is better to leave the ovaries and deal with the cyst or take them out and take the hormones. I can't go back and put the ovaries back in and I don't want to turn into a man!!!!!!
Can you understand what I am saying?
Thanks
Fannylou
Sponsor
ladyj2
10-07-2006, 12:41 PM
Hi Fanny Lou,
Well, it looks like you are going into uncharted territories.....none of us know!!!! We all read and learn from your first post and experiences with FNH. By the way, I found all of the previous posts extremely helpful when I was going through my diagnosis.
All I remember reading was that BC did not contribute to the growth of FNH but did contribute to HA.
I think if you can leave just one ovary in you won't throw yourself into menopause or have to start taking hormones. I would assume that if you try that and it doesn't work they can always take out the other ovary later laproscopically..... much easier on you.
I'm sorry I don't have an answer for you about hormones and FNH. Let us know what your Dr.s say.
Well, it looks like you are going into uncharted territories.....none of us know!!!! We all read and learn from your first post and experiences with FNH. By the way, I found all of the previous posts extremely helpful when I was going through my diagnosis.
All I remember reading was that BC did not contribute to the growth of FNH but did contribute to HA.
I think if you can leave just one ovary in you won't throw yourself into menopause or have to start taking hormones. I would assume that if you try that and it doesn't work they can always take out the other ovary later laproscopically..... much easier on you.
I'm sorry I don't have an answer for you about hormones and FNH. Let us know what your Dr.s say.
FANNYLOU
10-09-2006, 02:55 PM
Thanks Ladyj2:
I appreciate the feedback. The more I think about the whole thing the more confused I get. I have had 4 new appearances of tumors and have not taken any BC or hormones in 5 years. They continue to grow. So that make me wonder if my ovaries are producing the wrong hormones? You know maybe to much estrogen. If that is the case maybe the hormone replacement isn't a bad idea and get rid of the ovaries and the cysts. But I can't get my GYN to agree to test my estrogen levels and tell me if the are too high or normal. He said that they must be normal if I am still having a cycle. The liver surgeon hasn't gotten back with me after two weeks. I called his assistant today and she said that she mentioned it to him again last week and hasn't decided what his recomendation is! I don't think anyone can answer my question. The painful cycles have been mostly from my uterus being enlarged with adenomyosis and the fibroids. I have dealt with cysts on my ovaries for years and deal with that pain as it comes, but I don't want them to turn into ovarian cancer either. I guess I will just need to really weigh out my options. The GYN did say that he would not prescrible HRT unless my liver surgeon would okay it. So that will through me into menopause at 34 very fast. I don't know that I am mentally ready for all of those things this soon. I just pray that the answer will come before I have to have my surgery. Things just aren't so clear anymore.
God Bless All of you and may you continue to heal. Ladyj2, how are you doing now? Did you have your surgery and is everything okay now?
Thanks,
Fannylou
I appreciate the feedback. The more I think about the whole thing the more confused I get. I have had 4 new appearances of tumors and have not taken any BC or hormones in 5 years. They continue to grow. So that make me wonder if my ovaries are producing the wrong hormones? You know maybe to much estrogen. If that is the case maybe the hormone replacement isn't a bad idea and get rid of the ovaries and the cysts. But I can't get my GYN to agree to test my estrogen levels and tell me if the are too high or normal. He said that they must be normal if I am still having a cycle. The liver surgeon hasn't gotten back with me after two weeks. I called his assistant today and she said that she mentioned it to him again last week and hasn't decided what his recomendation is! I don't think anyone can answer my question. The painful cycles have been mostly from my uterus being enlarged with adenomyosis and the fibroids. I have dealt with cysts on my ovaries for years and deal with that pain as it comes, but I don't want them to turn into ovarian cancer either. I guess I will just need to really weigh out my options. The GYN did say that he would not prescrible HRT unless my liver surgeon would okay it. So that will through me into menopause at 34 very fast. I don't know that I am mentally ready for all of those things this soon. I just pray that the answer will come before I have to have my surgery. Things just aren't so clear anymore.
God Bless All of you and may you continue to heal. Ladyj2, how are you doing now? Did you have your surgery and is everything okay now?
Thanks,
Fannylou
gudewan
10-09-2006, 04:09 PM
Dunno anything about your condition but I thought I might just give you some perspective.
Sounds like your ovaries are going to have to come out sometime anyways. My sister is on hormones WITH her ovaries in place - but they will probably never get to "excrete" any hormones cuase she wont ever be able to go off the meds. If you had your ovaries removed, the hormones you would take would atleast be in normal, steady, controlled amounts. You can stop or change them whenever. You can't stop your ovaries from excreting crazy hormone amounts without meds anyways.
Sounds like your ovaries are going to have to come out sometime anyways. My sister is on hormones WITH her ovaries in place - but they will probably never get to "excrete" any hormones cuase she wont ever be able to go off the meds. If you had your ovaries removed, the hormones you would take would atleast be in normal, steady, controlled amounts. You can stop or change them whenever. You can't stop your ovaries from excreting crazy hormone amounts without meds anyways.
FANNYLOU
10-10-2006, 09:43 AM
Gudewan,
That is exactly what I was thinking. I would rather my hormones be regulated than all out of whack. But I don't know that synthetic hormones are better or worse. Are they the same as what human produce? My GYN said that the ovaries would eventually have to come out and that would mean another sugery and that is not what I want. I am still waiting on an recomendation from the liver dr.. This is so nerve racking! Thanks for all the support.
Fannylou
That is exactly what I was thinking. I would rather my hormones be regulated than all out of whack. But I don't know that synthetic hormones are better or worse. Are they the same as what human produce? My GYN said that the ovaries would eventually have to come out and that would mean another sugery and that is not what I want. I am still waiting on an recomendation from the liver dr.. This is so nerve racking! Thanks for all the support.
Fannylou
corricatt
10-22-2006, 09:16 AM
Fannylou, Is the liver doctor you mention a Hepologist or a surgeon?? Have you considered consulting with both an endocrinologist and a gastroenterologist?
When my tumor was found, I was first sent to a gastro.. he was great, but referred me to another Dr (who I thought was a liver specialist) but was an oncological surgeon. So naturally he's gonna go for the surgery right? make a little money.......... I really wish I'd been sent to an actual LIVER specialist because I might not have had to go through what I did. It was a hemangioma not cancer!
Anyway, I just think that the more informed you are the better you'll be able to figure it out and decided what is best for you. Who knows better about hormones than an endocrinologist, right?? And maybe a gastro would know about HRT with the other FNH on your liver? I'm curious...
Keep me posted
When my tumor was found, I was first sent to a gastro.. he was great, but referred me to another Dr (who I thought was a liver specialist) but was an oncological surgeon. So naturally he's gonna go for the surgery right? make a little money.......... I really wish I'd been sent to an actual LIVER specialist because I might not have had to go through what I did. It was a hemangioma not cancer!
Anyway, I just think that the more informed you are the better you'll be able to figure it out and decided what is best for you. Who knows better about hormones than an endocrinologist, right?? And maybe a gastro would know about HRT with the other FNH on your liver? I'm curious...
Keep me posted