Guest guest Posted October 10, 2002 Report Share Posted October 10, 2002 Hi Missy, I did take birth control pills, but this was before I knew about NF2 or any damage they could cause. The way I understand it, they could cause your tumors to grow. You really need to find out more about this before you start taking them, maybe do some research or something?? Wish I could be of more help... Donna I have an important question for the Crew. Now, I am going to be talking on subjects that are a delicate matter, but we are all adults here. So I don't want to see anybody's mind in the gutter. The other day, I had an appt. with my gynecologist. We were discussing the lack of periods that I have during the year (We've gone over that in a different post.) She asked me whether I had wanted to have children or not and I told her I have decided not to, so she suggested birth control. The only thing is, all the hormones in birth control pills, patches, whatever.......have may have effects on the growth rate of our tumors. Therefor, I am in a pickle. Has anyone been on birth control and not had any negative effects? I would appreciate any input whatsoever. Thanks. -Missy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2002 Report Share Posted October 10, 2002 Hi Missy, I did take birth control pills, but this was before I knew about NF2 or any damage they could cause. The way I understand it, they could cause your tumors to grow. You really need to find out more about this before you start taking them, maybe do some research or something?? Wish I could be of more help... Donna I have an important question for the Crew. Now, I am going to be talking on subjects that are a delicate matter, but we are all adults here. So I don't want to see anybody's mind in the gutter. The other day, I had an appt. with my gynecologist. We were discussing the lack of periods that I have during the year (We've gone over that in a different post.) She asked me whether I had wanted to have children or not and I told her I have decided not to, so she suggested birth control. The only thing is, all the hormones in birth control pills, patches, whatever.......have may have effects on the growth rate of our tumors. Therefor, I am in a pickle. Has anyone been on birth control and not had any negative effects? I would appreciate any input whatsoever. Thanks. -Missy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2002 Report Share Posted October 10, 2002 I was on the birth control pill for 5 years. I can't say that my tumors grew faster while I was on the pill. But, I did not know I had tumors until just a little over a year ago. I had thought at one time that maybe the tumors started to grow once I started the pill but when I think back to my high school years I walked funny then too. And I did not start taking the pill until one year after high school. I honestly believe I have had my tumors long before I started taking the pill. I have drop foot and I think the drop foot started back in High School and just kept getting worse as the years past. The past MRIs that I have had Thankfully have shown only a few mm growth in one tumor. I will not be able to have another MRI until after the baby is born so who knows what that one will tell me. birth control I have an important question for the Crew. Now, I am going to be talking on subjects that are a delicate matter, but we are all adults here. So I don't want to see anybody's mind in the gutter. The other day, I had an appt. with my gynecologist. We were discussing the lack of periods that I have during the year (We've gone over that in a different post.) She asked me whether I had wanted to have children or not and I told her I have decided not to, so she suggested birth control. The only thing is, all the hormones in birth control pills, patches, whatever.......have may have effects on the growth rate of our tumors. Therefor, I am in a pickle. Has anyone been on birth control and not had any negative effects? I would appreciate any input whatsoever. Thanks. -Missy Let us act on what we have since we have not what we wish. -Cardinal Newman ________________________________________________________________ GET INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for less! Join Juno today! For your FREE software, visit: http://dl.www.juno.com/get/web/. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2002 Report Share Posted October 10, 2002 I was on it for a few years, 886-88 maybe or there about, thats when my AN's appeared but Im pretty sure they would have anyway. Birth control is a dilemma for us, I personally would not take them now due to the possible risk. If you'd like some non hormonal birth control advice I can send you some private as Im sure it would creep the guys out here:-) our little girl is all grown up huh? > I was on the birth control pill for 5 years. I can't say that my tumors > grew faster while I was on the pill. But, I did not know I had tumors until > just a little over a year ago. I had thought at one time that maybe the > tumors started to grow once I started the pill but when I think back to my > high school years I walked funny then too. And I did not start taking the > pill until one year after high school. I honestly believe I have had my > tumors long before I started taking the pill. I have drop foot and I think > the drop foot started back in High School and just kept getting worse as the > years past. The past MRIs that I have had Thankfully have shown only a few > mm growth in one tumor. I will not be able to have another MRI until after > the baby is born so who knows what that one will tell me. > > birth control > > > I have an important question for the Crew. Now, I am going to be > talking on subjects that are a delicate matter, but we are all adults > here. So I don't want to see anybody's mind in the gutter. > The other day, I had an appt. with my gynecologist. We were > discussing the lack of periods that I have during the year (We've gone > over that in a different post.) She asked me whether I had wanted to > have children or not and I told her I have decided not to, so she > suggested birth control. The only thing is, all the hormones in birth > control pills, patches, whatever.......have may have effects on the > growth rate of our tumors. Therefor, I am in a pickle. Has anyone been > on birth control and not had any negative effects? > I would appreciate any input whatsoever. Thanks. > > -Missy > Let us act on what we have since we have not what we wish. -Cardinal > Newman > ________________________________________________________________ GET > INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for > less! Join Juno today! For your FREE software, visit: > http://dl.www.juno.com/get/web/. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2002 Report Share Posted October 10, 2002 I was on it for a few years, 886-88 maybe or there about, thats when my AN's appeared but Im pretty sure they would have anyway. Birth control is a dilemma for us, I personally would not take them now due to the possible risk. If you'd like some non hormonal birth control advice I can send you some private as Im sure it would creep the guys out here:-) our little girl is all grown up huh? > I was on the birth control pill for 5 years. I can't say that my tumors > grew faster while I was on the pill. But, I did not know I had tumors until > just a little over a year ago. I had thought at one time that maybe the > tumors started to grow once I started the pill but when I think back to my > high school years I walked funny then too. And I did not start taking the > pill until one year after high school. I honestly believe I have had my > tumors long before I started taking the pill. I have drop foot and I think > the drop foot started back in High School and just kept getting worse as the > years past. The past MRIs that I have had Thankfully have shown only a few > mm growth in one tumor. I will not be able to have another MRI until after > the baby is born so who knows what that one will tell me. > > birth control > > > I have an important question for the Crew. Now, I am going to be > talking on subjects that are a delicate matter, but we are all adults > here. So I don't want to see anybody's mind in the gutter. > The other day, I had an appt. with my gynecologist. We were > discussing the lack of periods that I have during the year (We've gone > over that in a different post.) She asked me whether I had wanted to > have children or not and I told her I have decided not to, so she > suggested birth control. The only thing is, all the hormones in birth > control pills, patches, whatever.......have may have effects on the > growth rate of our tumors. Therefor, I am in a pickle. Has anyone been > on birth control and not had any negative effects? > I would appreciate any input whatsoever. Thanks. > > -Missy > Let us act on what we have since we have not what we wish. -Cardinal > Newman > ________________________________________________________________ GET > INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for > less! Join Juno today! For your FREE software, visit: > http://dl.www.juno.com/get/web/. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2002 Report Share Posted October 10, 2002 I was on it for a few years, 886-88 maybe or there about, thats when my AN's appeared but Im pretty sure they would have anyway. Birth control is a dilemma for us, I personally would not take them now due to the possible risk. If you'd like some non hormonal birth control advice I can send you some private as Im sure it would creep the guys out here:-) our little girl is all grown up huh? > I was on the birth control pill for 5 years. I can't say that my tumors > grew faster while I was on the pill. But, I did not know I had tumors until > just a little over a year ago. I had thought at one time that maybe the > tumors started to grow once I started the pill but when I think back to my > high school years I walked funny then too. And I did not start taking the > pill until one year after high school. I honestly believe I have had my > tumors long before I started taking the pill. I have drop foot and I think > the drop foot started back in High School and just kept getting worse as the > years past. The past MRIs that I have had Thankfully have shown only a few > mm growth in one tumor. I will not be able to have another MRI until after > the baby is born so who knows what that one will tell me. > > birth control > > > I have an important question for the Crew. Now, I am going to be > talking on subjects that are a delicate matter, but we are all adults > here. So I don't want to see anybody's mind in the gutter. > The other day, I had an appt. with my gynecologist. We were > discussing the lack of periods that I have during the year (We've gone > over that in a different post.) She asked me whether I had wanted to > have children or not and I told her I have decided not to, so she > suggested birth control. The only thing is, all the hormones in birth > control pills, patches, whatever.......have may have effects on the > growth rate of our tumors. Therefor, I am in a pickle. Has anyone been > on birth control and not had any negative effects? > I would appreciate any input whatsoever. Thanks. > > -Missy > Let us act on what we have since we have not what we wish. -Cardinal > Newman > ________________________________________________________________ GET > INTERNET ACCESS FROM JUNO! Juno offers FREE or PREMIUM Internet access for > less! Join Juno today! For your FREE software, visit: > http://dl.www.juno.com/get/web/. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2002 Report Share Posted October 10, 2002 Marsha...I would think the hormones possibly " could " cause some growth, but who really knows and I am sure it is individual. If you are SURE you want no children have you thought about a tubal ligation? In, out day surgery. Hugs, Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2002 Report Share Posted October 10, 2002 Marsha...I would think the hormones possibly " could " cause some growth, but who really knows and I am sure it is individual. If you are SURE you want no children have you thought about a tubal ligation? In, out day surgery. Hugs, Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2002 Report Share Posted October 10, 2002 Marsha...I would think the hormones possibly " could " cause some growth, but who really knows and I am sure it is individual. If you are SURE you want no children have you thought about a tubal ligation? In, out day surgery. Hugs, Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2002 Report Share Posted October 10, 2002 Carol, have you had a tubal ligation? What's involved? It sounds barbaric, day surgery or not... but maybe that's just a misplaced impression on my part. Hugs, CarolW wrote: > If you are SURE you want > no children have you thought about a tubal ligation? In, out day surgery. > Hugs, Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2002 Report Share Posted October 10, 2002 Carol, have you had a tubal ligation? What's involved? It sounds barbaric, day surgery or not... but maybe that's just a misplaced impression on my part. Hugs, CarolW wrote: > If you are SURE you want > no children have you thought about a tubal ligation? In, out day surgery. > Hugs, Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2002 Report Share Posted October 10, 2002 Carol, have you had a tubal ligation? What's involved? It sounds barbaric, day surgery or not... but maybe that's just a misplaced impression on my part. Hugs, CarolW wrote: > If you are SURE you want > no children have you thought about a tubal ligation? In, out day surgery. > Hugs, Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2002 Report Share Posted October 10, 2002 Dear Missy, I can really relate to your question, and what a tough question it can be. Personally, I have decided not to have children. I have also decided not to take any form of birth control. I have never taken the pill or anything. I have used other forms of birth control (if you get my drift). Also, I have personally decided to have a tubal ligation. Again, these are MY choices only and NOT recommendations to anyone. -Jodi Berlin P.S. I absolutely love children and was blessed to fall in love with a man who already had a child. My husband supports my decisions. And we continue to celebrate the joy of his beautiful son. P.S.S. We also have a cocker spaniel who is our baby too > I have an important question for the Crew. Now, I am going to be > talking on subjects that are a delicate matter, but we are all adults > here. So I don't want to see anybody's mind in the gutter. > The other day, I had an appt. with my gynecologist. We were > discussing the lack of periods that I have during the year (We've gone > over that in a different post.) She asked me whether I had wanted to > have children or not and I told her I have decided not to, so she > suggested birth control. The only thing is, all the hormones in birth > control pills, patches, whatever.......have may have effects on the > growth rate of our tumors. Therefor, I am in a pickle. Has anyone been > on birth control and not had any negative effects? > I would appreciate any input whatsoever. Thanks. > > -Missy > Let us act on what we have since we have not what we wish. -Cardinal > Newman > > ________________________________________________________________ > GET INTERNET ACCESS FROM JUNO! > Juno offers FREE or PREMIUM Internet access for less! > Join Juno today! For your FREE software, visit: > http://dl.www.juno.com/get/web/. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2002 Report Share Posted October 10, 2002 Dear Missy, I can really relate to your question, and what a tough question it can be. Personally, I have decided not to have children. I have also decided not to take any form of birth control. I have never taken the pill or anything. I have used other forms of birth control (if you get my drift). Also, I have personally decided to have a tubal ligation. Again, these are MY choices only and NOT recommendations to anyone. -Jodi Berlin P.S. I absolutely love children and was blessed to fall in love with a man who already had a child. My husband supports my decisions. And we continue to celebrate the joy of his beautiful son. P.S.S. We also have a cocker spaniel who is our baby too > I have an important question for the Crew. Now, I am going to be > talking on subjects that are a delicate matter, but we are all adults > here. So I don't want to see anybody's mind in the gutter. > The other day, I had an appt. with my gynecologist. We were > discussing the lack of periods that I have during the year (We've gone > over that in a different post.) She asked me whether I had wanted to > have children or not and I told her I have decided not to, so she > suggested birth control. The only thing is, all the hormones in birth > control pills, patches, whatever.......have may have effects on the > growth rate of our tumors. Therefor, I am in a pickle. Has anyone been > on birth control and not had any negative effects? > I would appreciate any input whatsoever. Thanks. > > -Missy > Let us act on what we have since we have not what we wish. -Cardinal > Newman > > ________________________________________________________________ > GET INTERNET ACCESS FROM JUNO! > Juno offers FREE or PREMIUM Internet access for less! > Join Juno today! For your FREE software, visit: > http://dl.www.juno.com/get/web/. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2002 Report Share Posted October 10, 2002 you werent asking me and i havent had one but my sister did, its easy day surgery, granted more involved than a VASECTOMY. I have been thinking about missy, I really really dont think birth control pills are a good idea at all if you have nf2. there are other methods, a tad less reliable but still... and if you are considering them to simply regulate your period then i definetely wouldnt do it. just me and you wont find a dr who cud answer this, very tough decision. In NF2_Crew@y..., " L. Przybysz " <.L.Przybysz.3@n...> wrote: > Carol, have you had a tubal ligation? What's involved? It sounds barbaric, > day surgery or not... but maybe that's just a misplaced impression on my part. > Hugs, > > CarolW wrote: > > > If you are SURE you want > > no children have you thought about a tubal ligation? In, out day surgery. > > Hugs, Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2002 Report Share Posted October 10, 2002 you werent asking me and i havent had one but my sister did, its easy day surgery, granted more involved than a VASECTOMY. I have been thinking about missy, I really really dont think birth control pills are a good idea at all if you have nf2. there are other methods, a tad less reliable but still... and if you are considering them to simply regulate your period then i definetely wouldnt do it. just me and you wont find a dr who cud answer this, very tough decision. In NF2_Crew@y..., " L. Przybysz " <.L.Przybysz.3@n...> wrote: > Carol, have you had a tubal ligation? What's involved? It sounds barbaric, > day surgery or not... but maybe that's just a misplaced impression on my part. > Hugs, > > CarolW wrote: > > > If you are SURE you want > > no children have you thought about a tubal ligation? In, out day surgery. > > Hugs, Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2002 Report Share Posted October 10, 2002 you werent asking me and i havent had one but my sister did, its easy day surgery, granted more involved than a VASECTOMY. I have been thinking about missy, I really really dont think birth control pills are a good idea at all if you have nf2. there are other methods, a tad less reliable but still... and if you are considering them to simply regulate your period then i definetely wouldnt do it. just me and you wont find a dr who cud answer this, very tough decision. In NF2_Crew@y..., " L. Przybysz " <.L.Przybysz.3@n...> wrote: > Carol, have you had a tubal ligation? What's involved? It sounds barbaric, > day surgery or not... but maybe that's just a misplaced impression on my part. > Hugs, > > CarolW wrote: > > > If you are SURE you want > > no children have you thought about a tubal ligation? In, out day surgery. > > Hugs, Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2002 Report Share Posted October 10, 2002 Thats SOOOOO easy for you women to say :-) Just because our (mens) ACCESSORIES are externally mounted doesnt mean its anymore FUN. OKOK its not as bad as what the women go through but it was just too good to let slip. ( onto the floor : o) M using his KIDS puter ----- Original Message ----- granted more involved than a VASECTOMY. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2002 Report Share Posted October 10, 2002 Thats SOOOOO easy for you women to say :-) Just because our (mens) ACCESSORIES are externally mounted doesnt mean its anymore FUN. OKOK its not as bad as what the women go through but it was just too good to let slip. ( onto the floor : o) M using his KIDS puter ----- Original Message ----- granted more involved than a VASECTOMY. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2002 Report Share Posted October 10, 2002 Thats SOOOOO easy for you women to say :-) Just because our (mens) ACCESSORIES are externally mounted doesnt mean its anymore FUN. OKOK its not as bad as what the women go through but it was just too good to let slip. ( onto the floor : o) M using his KIDS puter ----- Original Message ----- granted more involved than a VASECTOMY. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2007 Report Share Posted April 9, 2007 A gastroenterologist I used to see took me off oral contraceptives in 1997, but two prior GIs said nothing about it. Recently I started again with my current gastroenterologist's approval. He is sure that a low estrogen pill (Loestrin, Microgestin) would be safe for me, but my PSC is slow moving. He ordered labs every 2-3 weeks for the first 3 months and said that the Alk Phos would probably go up but that it wouldn't actually lead to progression, just an elevation of the lab tests. The first AP was stable at 136 (down from 180 since I started taking cod liver oil a year ago), and the second dropped- to 107- NORMAL! I haven't had numbers this good since I was first diagnosed. The third just was done, no results yet. Only trouble is if you miss one by as little as 6 hours, you will have a period until the next placebo row starts, which kind of defeats the iron-conserving theory. I hadn't planned on asking him, assuming that the old GI was right in stopping them. There was an Aussie who was doing a fellowship with Dr Pleskow, and this bloke noticed I was always anemic, in spite of taking iron. I have heavy, frequent periods. He said " Have you ever thought about having a hysterectomy? " After I pulled my lower jaw off the floor, I said I thought that was like killing a fly with an atomic bomb. So then he said, would you consider taking the pill? Hmm, painless alternative with nookie benefits? Or major surgery? You can see what I chose. So far so good. Martha (MA) 43, UC 1979, PSC 1992, asymptomatic > > > > > I have a question about birth control... > > > > Does anyone with PSC take birth control, and what kind? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2007 Report Share Posted April 9, 2007 A gastroenterologist I used to see took me off oral contraceptives in 1997, but two prior GIs said nothing about it. Recently I started again with my current gastroenterologist's approval. He is sure that a low estrogen pill (Loestrin, Microgestin) would be safe for me, but my PSC is slow moving. He ordered labs every 2-3 weeks for the first 3 months and said that the Alk Phos would probably go up but that it wouldn't actually lead to progression, just an elevation of the lab tests. The first AP was stable at 136 (down from 180 since I started taking cod liver oil a year ago), and the second dropped- to 107- NORMAL! I haven't had numbers this good since I was first diagnosed. The third just was done, no results yet. Only trouble is if you miss one by as little as 6 hours, you will have a period until the next placebo row starts, which kind of defeats the iron-conserving theory. I hadn't planned on asking him, assuming that the old GI was right in stopping them. There was an Aussie who was doing a fellowship with Dr Pleskow, and this bloke noticed I was always anemic, in spite of taking iron. I have heavy, frequent periods. He said " Have you ever thought about having a hysterectomy? " After I pulled my lower jaw off the floor, I said I thought that was like killing a fly with an atomic bomb. So then he said, would you consider taking the pill? Hmm, painless alternative with nookie benefits? Or major surgery? You can see what I chose. So far so good. Martha (MA) 43, UC 1979, PSC 1992, asymptomatic > > > > > I have a question about birth control... > > > > Does anyone with PSC take birth control, and what kind? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2007 Report Share Posted April 9, 2007 A gastroenterologist I used to see took me off oral contraceptives in 1997, but two prior GIs said nothing about it. Recently I started again with my current gastroenterologist's approval. He is sure that a low estrogen pill (Loestrin, Microgestin) would be safe for me, but my PSC is slow moving. He ordered labs every 2-3 weeks for the first 3 months and said that the Alk Phos would probably go up but that it wouldn't actually lead to progression, just an elevation of the lab tests. The first AP was stable at 136 (down from 180 since I started taking cod liver oil a year ago), and the second dropped- to 107- NORMAL! I haven't had numbers this good since I was first diagnosed. The third just was done, no results yet. Only trouble is if you miss one by as little as 6 hours, you will have a period until the next placebo row starts, which kind of defeats the iron-conserving theory. I hadn't planned on asking him, assuming that the old GI was right in stopping them. There was an Aussie who was doing a fellowship with Dr Pleskow, and this bloke noticed I was always anemic, in spite of taking iron. I have heavy, frequent periods. He said " Have you ever thought about having a hysterectomy? " After I pulled my lower jaw off the floor, I said I thought that was like killing a fly with an atomic bomb. So then he said, would you consider taking the pill? Hmm, painless alternative with nookie benefits? Or major surgery? You can see what I chose. So far so good. Martha (MA) 43, UC 1979, PSC 1992, asymptomatic > > > > > I have a question about birth control... > > > > Does anyone with PSC take birth control, and what kind? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2007 Report Share Posted April 9, 2007 gertzh49 wrote: > > I have a question about birth control... > > Does anyone with PSC take birth control, and what kind? Gee whiz!! I thought PSC was pretty effective all by itself as birth control! ;-D Not trying to make light of this (or, wait a minute ... maybe I am! LOL!!), but as Ivor put it awhile back -- " Going to the toilet many times a day with possible bleeding and fatigue which follows is not known to be an aphrodisiac. " Regards, Carolyn B. in SC Quote Link to comment Share on other sites More sharing options...
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