jennfer
08-15-2003, 09:08 PM
OK, everyone. I need some big time advice. I have endometriosis. I went to the MD today and he gave me some options. I have NO IDEA what to do, so I thought I'd come to you all for advice. Who better to go to than someone who may have been there? My husband is not helping either, he just tells me to do what I feel is right because its my body.
Here are my options:
1. go on a low dose BC pill continuously (skip last week and have no periods). I was doing this for a couple months on a higher dose pill and got very nauseaus and had tender breasts. I was miserable! But I got pregnant on the lower dose pills before. So, I'm not too sure about this.
2. Have a laporoscopy done and have the doctor cauterize the endo. He would want me to get pregnant after doing this. Obviously, I'm not too thrilled about the idea of surgery. I am only 25 and surgeryed out!
3. Depo Lupron for 6 months. This is NOT an option for me right now because of everything I've heard on these boards. I talked to my doc about the things I've read from you all, and he swears that none of his patients report any of the side effects I mentioned to him. After all, they ARE only on it for 6 months. Will it really do much less damage in a less amount of time?
4. Get pregnant now. This is not all that bad of an option. However, it is the worst timing ever! We were thinking about planning this next winter to get pregnant, but not right now. We are in the middle of building a house (moving in 3 weeks), I am starting classes in about 2 weeks, and I don't want to be worrying about anything else at that time. Besides, I don't want the stress of all this to effect my pregnancy. Also, my baby is only 18 months old and I kinda want more space between them. THEN, my sister is pregnant (due March 3). We were pregnant at the same time twice before and it would be nice to let each of us have our "own" time. I also have been getting questions from family like, "Aren't you going to have a baby now that your sister is?" That makes me so MAD!!! And I know that if I got pregnant now, that people would be thinking it was because she is! I know I shouldn't care what people think, and I really don't, but it would be great to show them that I'm serious about not wanting to get pregnant just because my sister is.
Anyway, I am sorry for writing such a long post, but I felt like I needed to give you all the details so you could help me with my decision. I guess I should tell you that when I was on the continuous BC, my pain was COMPLETELY gone. But the nausea was unbearable so I had to go off it. Now my pain is back with a vengeance!! I really need to figure out what to do SOON!
Thank you all for your feedback.
Here are my options:
1. go on a low dose BC pill continuously (skip last week and have no periods). I was doing this for a couple months on a higher dose pill and got very nauseaus and had tender breasts. I was miserable! But I got pregnant on the lower dose pills before. So, I'm not too sure about this.
2. Have a laporoscopy done and have the doctor cauterize the endo. He would want me to get pregnant after doing this. Obviously, I'm not too thrilled about the idea of surgery. I am only 25 and surgeryed out!
3. Depo Lupron for 6 months. This is NOT an option for me right now because of everything I've heard on these boards. I talked to my doc about the things I've read from you all, and he swears that none of his patients report any of the side effects I mentioned to him. After all, they ARE only on it for 6 months. Will it really do much less damage in a less amount of time?
4. Get pregnant now. This is not all that bad of an option. However, it is the worst timing ever! We were thinking about planning this next winter to get pregnant, but not right now. We are in the middle of building a house (moving in 3 weeks), I am starting classes in about 2 weeks, and I don't want to be worrying about anything else at that time. Besides, I don't want the stress of all this to effect my pregnancy. Also, my baby is only 18 months old and I kinda want more space between them. THEN, my sister is pregnant (due March 3). We were pregnant at the same time twice before and it would be nice to let each of us have our "own" time. I also have been getting questions from family like, "Aren't you going to have a baby now that your sister is?" That makes me so MAD!!! And I know that if I got pregnant now, that people would be thinking it was because she is! I know I shouldn't care what people think, and I really don't, but it would be great to show them that I'm serious about not wanting to get pregnant just because my sister is.
Anyway, I am sorry for writing such a long post, but I felt like I needed to give you all the details so you could help me with my decision. I guess I should tell you that when I was on the continuous BC, my pain was COMPLETELY gone. But the nausea was unbearable so I had to go off it. Now my pain is back with a vengeance!! I really need to figure out what to do SOON!
Thank you all for your feedback.
Sponsor
jennfer
08-17-2003, 11:36 PM
Bump? Anyone???
I really need some advce! Thanks!!
I really need some advce! Thanks!!
strand3d
08-17-2003, 11:55 PM
I'd suggest trying to continually go on a very low dose of birth control. Low dose pills are NOT any less effective in preventing pregnant than higher dose pill. So if you did get pregnant on a lower dose pill, it was either because you weren't taking the pill correctly, or you might have just been that very low low faliure rate. What low dose pill were you on when you got pregnant? You might want to consider not trying that pill again. I'm on Mircette which is very low dose, and i just love it. Its so easy to skip my periods on as well.
endosister
08-21-2003, 07:24 AM
Jennfer...
I'm so sorry you're going through this too. I hope I can help a little bit, it sounds like the doctors are giving you much of the same information that I was given, and some of it is extremely confusing and some of it is downright dangerous, so... here goes.
First of all, if you haven't had the laparoscopy, then you haven't been diagnosed. Endometriosis can only be confirmed through visual examination during a surgery, although it can be strongly suspected from symptoms. Personally, I would even consider anything but the birth control as an option until you have a definitive diagnosis.
Continuous BCPs are a good option, although it may take you a while to get on the right one for your body, and it sounds like you've had some difficulty with them. I hear from others that Mircette is helpful, I personally take Brevicon and it is working fairly well for me.
The other thing that I use that is EXTREMELY helpful for me, is flaxseed oil. I found this completely by accident when I took it originally to try to help a rash on my hands. My grandmother had used it for something similar to the rash and got good results. I had so much pain prior to this even with the BCPs, that my doctor and I were thinking I would have to have another surgery... but I happened upon taking it and 48 hours after I had started taking it, 80% of the pain went away and I had more energy. I was skeptical that that was what was happening, so the next week I left it off, and 12 hours after I left off a dose I was in serious pain again. I know this sounds weird, but since the oil is so healthy anyway, (has the highest concentration of omega-3s, 6s, and 9s in any plant food), it can't hurt to try. It's about $13 a bottle at your local health food store, try to get the high-lignan cold-pressed stuff and keep it in the refrigerator. I take about 2 tsp. a day, and it's been working for a year for me, so go figure.
Back to the surgery option... if other things don't start working well, then you need to get a definitive diagnosis to make sure what you've got going on really is endo. (They can tell by lesions and adhesions that the endo has caused) I had the lap 2 years ago, they confirmed the endo and removed as much as possible through excision and cauterization. (however, the cells are so small and scattered around for most people that you'll need other therapy after the excision to try to keep it from coming back).
Please do NOT do the Lupron. Certain HMOs really back this and try to get all their endo patients taking the shots, probably for money reasons instead of your health. It is extremely dangerous and I've talked to many women who have WORSE symptoms than they ever did with the endo, from the Lupron itself. It stays in your body forever, even after you stop taking it, and it is so toxic that the FDA won't approve more than 6 months of use in your entire lifetime, specifically for that reason. It is a STRONG chemotherapy drug for prostate cancer and has not been researched enough for endo use anyway. Please research on the web about it, there are many sites that will give you more info.
Also, if you'd like to email me privately about any of this, you're welcome to. I hope some of it helps.
treblesprite@yahoo.com
I'm so sorry you're going through this too. I hope I can help a little bit, it sounds like the doctors are giving you much of the same information that I was given, and some of it is extremely confusing and some of it is downright dangerous, so... here goes.
First of all, if you haven't had the laparoscopy, then you haven't been diagnosed. Endometriosis can only be confirmed through visual examination during a surgery, although it can be strongly suspected from symptoms. Personally, I would even consider anything but the birth control as an option until you have a definitive diagnosis.
Continuous BCPs are a good option, although it may take you a while to get on the right one for your body, and it sounds like you've had some difficulty with them. I hear from others that Mircette is helpful, I personally take Brevicon and it is working fairly well for me.
The other thing that I use that is EXTREMELY helpful for me, is flaxseed oil. I found this completely by accident when I took it originally to try to help a rash on my hands. My grandmother had used it for something similar to the rash and got good results. I had so much pain prior to this even with the BCPs, that my doctor and I were thinking I would have to have another surgery... but I happened upon taking it and 48 hours after I had started taking it, 80% of the pain went away and I had more energy. I was skeptical that that was what was happening, so the next week I left it off, and 12 hours after I left off a dose I was in serious pain again. I know this sounds weird, but since the oil is so healthy anyway, (has the highest concentration of omega-3s, 6s, and 9s in any plant food), it can't hurt to try. It's about $13 a bottle at your local health food store, try to get the high-lignan cold-pressed stuff and keep it in the refrigerator. I take about 2 tsp. a day, and it's been working for a year for me, so go figure.
Back to the surgery option... if other things don't start working well, then you need to get a definitive diagnosis to make sure what you've got going on really is endo. (They can tell by lesions and adhesions that the endo has caused) I had the lap 2 years ago, they confirmed the endo and removed as much as possible through excision and cauterization. (however, the cells are so small and scattered around for most people that you'll need other therapy after the excision to try to keep it from coming back).
Please do NOT do the Lupron. Certain HMOs really back this and try to get all their endo patients taking the shots, probably for money reasons instead of your health. It is extremely dangerous and I've talked to many women who have WORSE symptoms than they ever did with the endo, from the Lupron itself. It stays in your body forever, even after you stop taking it, and it is so toxic that the FDA won't approve more than 6 months of use in your entire lifetime, specifically for that reason. It is a STRONG chemotherapy drug for prostate cancer and has not been researched enough for endo use anyway. Please research on the web about it, there are many sites that will give you more info.
Also, if you'd like to email me privately about any of this, you're welcome to. I hope some of it helps.
treblesprite@yahoo.com
jennfer
08-22-2003, 12:37 AM
Thank you both so much for your replies.
Endosister,
It is so nice to hear from someone who's been there. I go back to the doc tomorrow and still have NO IDEA what I'm going to do! I did have a laparoscopy (sp?) 3 years ago when they removed my right ovary because of a cystic tumor. That's when I was diagnosed with endo. I think right now I'm kinda leaning toward the BC pills because it's the least drastic. Because I DO eventually want more kids, I am really scared of ANYTHING new. Especially Lupron. I also have heard so many bad things about it, and it is not like the pill where if it doesn't work you can stop it. Once it's in your body, its there until it works itself out of your system. Know what I mean? I just really don't want to be feeling like crap and not be able to do anything about it.
As for the surgery, what's the point unless I can be promised that the pain will go away. I guess I have a lot of questions for the doctor still. I'll keep you updated. Thank you again for your feedback and maybe I'll take you up on your email offer.
~Jen~
Endosister,
It is so nice to hear from someone who's been there. I go back to the doc tomorrow and still have NO IDEA what I'm going to do! I did have a laparoscopy (sp?) 3 years ago when they removed my right ovary because of a cystic tumor. That's when I was diagnosed with endo. I think right now I'm kinda leaning toward the BC pills because it's the least drastic. Because I DO eventually want more kids, I am really scared of ANYTHING new. Especially Lupron. I also have heard so many bad things about it, and it is not like the pill where if it doesn't work you can stop it. Once it's in your body, its there until it works itself out of your system. Know what I mean? I just really don't want to be feeling like crap and not be able to do anything about it.
As for the surgery, what's the point unless I can be promised that the pain will go away. I guess I have a lot of questions for the doctor still. I'll keep you updated. Thank you again for your feedback and maybe I'll take you up on your email offer.
~Jen~
Vlasik
08-22-2003, 01:13 PM
Hi,
Since you already had a Laparoscopy and know that you have endo, I would consider taking the BCP continously. I have endo too, and I am currently doing this with a low dose pill. This is working well for me, I have not been having pain.
I personaly don't think that Lupron is a good choice for you. I have been to many doctors who wanted me to try this, and thank god i always said no. A fwe months ago I finally met a good doctor that was willing to help me without trying to push me to be on Lupron. She actually told me that Lupron is not a good coice for endo at all. Plus, you can only be on it for 6 months and it's likely that the pain will come back after you stop taking it. Most doctors will tell you that their patients have tried it and had great success and very minimal side effects. I have talked to many people who took it and/or are taking it and I have yet to hear all good things about it.
It's up to you, but I would try the pills first. Even if you decide to take the Lupron later on, it is better to try the less drastic options first.
Hope it all goes well. If you have more questions, feel free to ask.
Since you already had a Laparoscopy and know that you have endo, I would consider taking the BCP continously. I have endo too, and I am currently doing this with a low dose pill. This is working well for me, I have not been having pain.
I personaly don't think that Lupron is a good choice for you. I have been to many doctors who wanted me to try this, and thank god i always said no. A fwe months ago I finally met a good doctor that was willing to help me without trying to push me to be on Lupron. She actually told me that Lupron is not a good coice for endo at all. Plus, you can only be on it for 6 months and it's likely that the pain will come back after you stop taking it. Most doctors will tell you that their patients have tried it and had great success and very minimal side effects. I have talked to many people who took it and/or are taking it and I have yet to hear all good things about it.
It's up to you, but I would try the pills first. Even if you decide to take the Lupron later on, it is better to try the less drastic options first.
Hope it all goes well. If you have more questions, feel free to ask.
jennfer
08-22-2003, 09:14 PM
Hi everyone. Thank you again for your replies!
I went to the doctor this morning and we decided on the BC pills. Hopefully these won't make me sick. I am happy with the decision though. (So far!) Thank you again so much!!
~Jen~
I went to the doctor this morning and we decided on the BC pills. Hopefully these won't make me sick. I am happy with the decision though. (So far!) Thank you again so much!!
~Jen~