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Post by redwood on Jan 4, 2012 19:28:56 GMT -5
ugh, this is frustrating. I got my MRI results and it doesn't show anything where I have my pain (although this was shown on the ultrasound). It does show a large cyst near the left ovary that wasn't on the US a few months before. So now they want to do an ultrasound on that again. I have no symptoms from that area and I doubt that would be an endometrioma as it just formed recently, apparently. AND it's not where my problem is. Probably a waste of time and is a functional cyst. So where does this leave me? I have no idea. I saw a gastoenterologist today and he has no recommendations other than to have the US as recommended and to follow up with my GP. In the meantime, I have had pain for a over a week now, worse than ever before in the area which shows nothing on the MRI. The NP increased my dose to 60mg, but I'm not sure that is going to cut it either, which means that I may have another month where I have more pain. It just doesn't seem like enough to me. But my NP always wants to increase things slowly. I just think it's so much less than what the troches were giving me, even though that is what the pharmacist says.
Oh, and I have another focal nodular hyperplasia on my liver, which is a benign tumor. I had 3 of them before my liver surgery removed 50% of my liver. They say these come from birth control pills, which I have not used since 2002, except for a brief 6 month period on a mini pill in 2007. So I have no idea why I have another one of these unless the bio-identical progesterone can cause them too. Which sucks, if it does.
I'm just worried this thing may grow on my colon. It's in an area where it could, although the US seemed to show it was more on the abdominal wall.
So now I'm having an US where I don't have any symptoms. I just feel so annoyed.
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Post by Karen on Jan 4, 2012 21:19:26 GMT -5
Man, I'm sorry you don't have more info at the moment. I hope the tests reveal something, or at least rule some more things out. Keep us posted?
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Post by redwood on Jan 5, 2012 0:33:36 GMT -5
Sorry I was just kind of ranting away there. I'm just frustrated that there is not any further info on the "thing" that is growing in my right side and the Dr. wants me to pursue the mysterious cyst that I am sure is not even there any more. I guess my only choice at the moment is to continue with the progesterone and hope I can get the right amount of cream and that it will work to reduce the pain again. I did some research and see that the usual amount of cream suggested for endo is about 40-70mg, so I guess my dose isn't as low as I thought. I'm just surprised that the troches would be so different as they are not truly oral as they are supposed to go through the mucus membrane, just like the cream goes into your skin. A small amount will end up in the digestive tract, but I would expect most would go through the skin in your mouth.
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Post by redwood on Jan 12, 2012 0:48:39 GMT -5
I had the US tonight and of course the cyst on my left ovary is gone (just like I thought). On the first US I had back in Sept., there was a cyst on my right ovary. No cysts this time. They are just functional cysts and I feel like this second US was a waste of everyone's time, esp. since I don't have any pelvic pain symptoms at all. I did mention to the technician where my problem lies and she immediately was able to find this structure on the US. She said it's very superficial, so it does not lie deep. So it's just below the muscles of the abdominal wall. The next step is to go back to my GP and see what she says since the MRI saw nothing of the little monster growing in my side. That and just wait and see if my progesterone cream will work for me in the next cycle.
Oh and one thing I didn't mention was that the MRI said that there was free fluid in the right flank area (where I have my pain) (which they considered inconclusive). I wonder if that was the "little monster" shedding its skin (bleeding) or whatever the heck endo lesions do every month. The MRI was done on day 4 of my period, so maybe that is why there was nothing showing and just "fluid." hmmmm interesting...
But as we all know a lot of imaging does NOT show endo, MRIs US, etc. But I have had an US show this thing 4 times now, BUT it was NEVER during my period. Only the MRI was during my period.
Anyone else having luck with their progesterone cream? I sure hope mine works this month.
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Post by redwood on Jan 23, 2012 15:22:42 GMT -5
Argh, this sucks. I've been in pain now for 6 days, starting on day 22 of my cycle. This has never happened before. At most, the pain will start a day before my period, but usually it's the day it starts and then it goes away and then comes back at the end (like day 4 or 5). Well, it's been minor most of the year, but now it's worse that I stopped the troche form of progesterone and switched to cream (although even with the troches, it had been increasing a little end of the year). Last month it was more pain, more days, but not BEFORE my period. I'm wondering now what is going to happen when I actually get my period, which should be tomorrow or the following day - do I have pain for another week then?! I have had to take tylenol for this, and it doesn't always take it all away, but decreases it usually. I really hate to have to take that stuff all the time, but I don't know what else to do. so the cream experiment did NOT work for me at all. So I will go back to the troches I have (still have a month's supply left) or try oral capsules, if my NP feels that might be better for me. I'm not sure if the cream is just not absorbing well, or if the 60mg is just not the same level of stuff that I was getting from my troches 200mg. That is what the pharmacist said, but this is just awful. Much worse than it was before I started taking anything for it back in Aug. 2010. So frustrating. Anyone else having luck with progesterone cream?
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Post by Karen on Jan 23, 2012 19:07:12 GMT -5
Uh, oh - so sorry to hear you're not seeing the benefits! That really sucks. I'm glad you have the option to go back to the troches or perhaps the oral form. I hope you're back to feeling better the next cycle, and I hope this one isn't too bad!
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Post by redwood on Jan 24, 2012 0:25:13 GMT -5
I did figure out something that helps the pain. Belly dancing! I went to class tonight and didn't have pain there. Although, it comes back later. Guess I have to belly dance all day! LOL
I will give the troches a shot again and see if they make my mouth feel weird again. If they do, then I'll ask about getting a prescription for the oral form.
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Post by redwood on Jan 31, 2012 19:47:58 GMT -5
I just found out that the oral progesterone capsule equivalent to my troches is actually 400mg. My NP said I should try and switch to the oral since I had issues with the troches and the cream didn't work well for me. The pharmacist thought that was kind of high, so he suggested to try 250mg or 300mg at first. Which for me, makes me feel like I'll probably be in pain for a few months before we figure out how much I need. ugh, but what else can we do? But I guess it's not that far off the 600mg that brussie had posted about. I heard that 200mg of oral was the equivalent of 20mg of cream. So that means that my 60mg of cream would actually be 600mg of oral capsules. I feel like I need to find an endo specialist to see. Although I wonder if they'll be pro bio-identical. I am seeing my GP on friday, so I will ask to see if she can refer me.
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Post by Karen on Jan 31, 2012 20:13:50 GMT -5
Man, that just seems way off. I've never heard the oral vs. cream doses being THAT far off. Have you had your progesterone level tested recently?
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Post by redwood on Jan 31, 2012 22:29:59 GMT -5
I had them tested when I was still on troches just two and half months ago, but it was really low (blood test). I'm supposed to do a blood pin prick test to see my levels again (supposed to be better), but she wants to wait until I'm stable on a specific dose and a specific medium before testing again. Doing it when I keep changing from troches to cream to oral won't make any sense. I'm waiting to see what she says after the pharmacist's info (I relayed it to her). Taking 400mg sounds really high. Probably starting at 250mg would be better. I know though, the troches should be lower than the oral dose as the idea is that it goes through the mucus membranes and partially through the digestive system. I don't know, maybe I should have stuck with the cream for another month. She didn't suggest that. It will be interesting to see if I have less pain now going back to the troches for this one month.
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Post by redwood on Feb 12, 2012 14:01:23 GMT -5
well, everything is messed up for me now. after swichting back to the troches this past month, my period was the worst ever. I have a feeling that I shouldn't have taken my usual 5 day break as I think my period time started much earlier (with the pain, rather than with the light bleeding) than I though, so that I took a break at the wrong time. Oh, I don't really know, of course. Just guessing. But I had agonizing pain this time and thought of going to the ER and my period is as heavy as it ever was when I was taking nothing. So hopefully on tuesday I'll start the Visanne and it will improve my symptoms. I tried to get it filled on friday, but it was not available and they have to order it.
So I guess, at this point, no one is taking bio-identicals anymore on this forum (or at least not posting about it). Maybe someone new will pop up to try it. It worked for me for quite a while, but the switching to cream scenario seemed to mess everything up.
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Post by Karen on Feb 12, 2012 22:05:43 GMT -5
I wish the cream hadn't thrown everything for a loop! I'm still convinced the cream dose was way too low. But, regardless, I'm glad it bought you some relief overall! In general, would you recommend bio-identicals to others? I know I would, and I'm very tempted to start up again.
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Post by redwood on Feb 12, 2012 23:16:47 GMT -5
yes, definitely I would still recommend it for people to try as it did relieve a lot of my pain and I maintained that for quite a while. I feel I might have been better off if I had stayed with my original dr. that I went to, but I couldn't because I moved to another country. I just couldn't find another MD like him in vancouver. I still believe I would have been better off doing the progesterone every day. If the Visanne doesn't work for me, then I will try oral bio-identical progesterone. Most people go to bio-identicals because the progestins didn't work for them. But the fact is, I never tried a progestin yet. I did take micornor back in 2007, but that was for preventative rather than treating current symptoms. Also, Visanne is a different form of a progestin.....so I'll just give it a shot. I just hope that it'll lessen my pain within two months as I have a trip to Europe coming up in March/April and don't want to ruin it with endo pain. I should have my period right in the middle of the trip.
Well, I hope that this info here will help others who want to try bio-identicals. I'll keep an eye on it if anyone else posts here. Yeah, let us know if you start up again!
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Post by alivenkicking on Mar 7, 2012 17:59:20 GMT -5
i've been taking bio-identical troches in a range of doses for 2+ years. i started taking them daily to suppress a period, but all it did was suppress the bleeding. i know according to some theories that is very important, but i still had all the other awful symptoms.
we added a 20% progesterone cream almost a year ago, because it was thought the troches could have been contributing to my nausea. no noticeable difference with either one, but then again, i never had a very heavy flow. and come to find out, the three different psychotropics i've been taking for 9+ years have been shown to lower hormone levels in the body, so i'm thinking the progesterone didn't have much of chance to begin with. when i got my levels tested about a year into taking plenty high dosage of bio-identicals, my estrogen was in the normal range but my progesterone was way low.
i would still encourage others to try it over synthetic BC, and maybe i can give it another try after the head-meds are out of my system, but my good faith effort didn't seem to get me very far...
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Post by DeAnna on Mar 13, 2012 23:13:20 GMT -5
I thought that I would bring this chat thread back to life. I had excision surgery about a year ago and my pain is gone. I am currrently (and have been) on continuous BCP's for 8 years and I really want to switch to bioidenticals. Karen mentioned earlier that she had her DHEA and cortisol levels checked and I am getting ready to do the same. After my surgery I continued to have bloating (asp after eating).... I thought that it was due to bowel adhesions that had reformed or that the surgeon had not gotten all of the endo. Nope. Along with the help of an ND, I finally have it figured out. Other symptoms that I developed after surgery: constipation and weight gain to the tune of about 30 lbs over just a few months. Turns out I am hypothyroid, which can lead to low levels of stomach acid...... thus poor digestion/bloating. Betaine HCL seems to help that but now we are going to check my adrenal function and then go from there. A conventional doc would have never gotten me to this point. I am a little hesitant with some aspects of naturopathic medicine. There is a lot of literature out there thats supports both sides of the fence, coneventional AND standard approaches to medical care. But at least now, I undertsand whats going on with my body and thats half the battle
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