Hi Tina! I hope you are still reading this board - I haven't seen you on in quite some time. The last time you were on you were trying to make a decision about staying with your pain management doc who seemed to get her kicks from making your life as miserable as possible or going back to your gyn doc if she was willing to take over your pain management care. What did you finally decide to do? Maybe you haven't decided. Either way, I sure would like to know how you are Tina - if you have a few minutes can you please drop a post and let us know that you are ok? All the best - KathyMac
Hi KathyMac! Sorry I've been a little out of the loop. Well, the last I posted I was tryign to get in contact with my gyno to talk to her about the PM doctor and also about my increasing pain that was being ignored. Well guess what, she pretty much blew me off. Call your PM doctor. What???? Apparently they just didn't get it, my pain was increasing which you would think they would want to know WHY at least, but I guess now. And then they told me if I felt worse over the weekend to go to the ER, which ended up happening. Got admitted and foudn myself a new gyno. My best friend's doctor actually. He came into the ER to see me and said immediately that I clearly needed to have surgery done since I had not had evne a diagnostic in over 6 years! No one seemed to be abel to figure out why no one was doing anythign when I was calling them weekly and telling them that my pain was increasing.
Well he got me in for surgery Friday (I've been with my other doctor for TWO years and she told me repeatedly that surgery wasn't necessary at this time that they could just treat my pain) and sure enough, exactly where I told them I was having the increasing pain there was inflamed endometrial growths. They removed them. I got to do it as an out-patient. My PM doc went out of town without telling me so she wasn't even around to fill my script THIS week when it was going to be due so my new gyno made my primary fill it for the interum (which he filled for 7 days worth and she is goig to be gone for TEN days, ARGH!!!)....but I have already dropped 10mg a day. I feel my surgeyr pain, from the three incisisions in my abdomen, but my previous pain, the cramping....well, I have not had one single cramp since I went in before surgery on Friday. Hopefully it lasts.
There was a lot more complications in there, the situation was really, a HUGE mess. I was in the hosptial until last Wed and then got to go home for two days pre-surgery. At which time my primary told me that I needed to DOUBLE my methadeon up to surgery so manage the increase in the pain. I asked him my PM had said this was okay and was told, yes, they are in agreement, we are just getting you thru surgery so go ahead, you will be able to get your new script early, etc....etc.... Well the next day when my PM got in I called them and found out they knew NOTHING about it and needless to say they were really peeved at my primary for telling me to double my meds, but then said, literally "since he is comfortale doubling your dose he can take care of your after surgery meds because as of 3pm we are out of town". Basically leaving it to ME to tell him this. So I called my primary, told his nurse all of this and then he REFUSED to do it! Said I had to get it from my PM doctor who at that point was GONE already for their vacation. So it was a little iffy going in for my surgery Fridya morning because I didn't know if I was going to have the methadone after so I was terrified of not only being in extreme pain after surgery, but then of going into withdrawel as well because my two doctors that are able to prescribe methadone can't communicate with eachother. So we told my gyno all this and I guess while I was under he called my primary wiht my Mom in the room and really laid into the guy. Basically told him that since my PM was irritated with him for doubling my meds without asking them they said he had to prescribe wihile they were gone. He was the ONLY one they permitted to do it with my contract so he HAD to do it. I guess he must have put up a little bit of an argument because my Mom said the next thing she knew my gyno was yelling at my primary saying that he would NOT have his patient in withdrawel because my primary and PM doctor were fighting, that my pain had already been IGNORED for months when a simple surgery was all I needed and that if he didn't have a script waiting for me at the clinic that he would need to start thinking about if he valued his medical license. I guess it was pretty nasty.
My Mom said my surgeon/gyno was SO angry. He just couldn't believe that my original gyno had let my condition go like it had when a 45 minute long surgery had a 90% chance of easing my pain level considerablly, but instead she just kept referring me to the PM clinic for more and stronger pain meds. And then THEY got mad at me so when I tried tellign them something was wrong and that my pain was worsening they literally just ignored me. The two docs just kept telling me to call eachother, all the while nothing was getting done and the growths I had were getting inflamed and infected causig the pain to get worse, and worse, and worse.... He just couldn't believe that I had THREE doctors working on my case and they all just dropped the ball completely. He said some of the growths were old too and could have been removed two years ago when I originally asked for a laproscopic surgery the first time (this is when I got with this gyno at first) and I might never have had to go into the pain managment clinic in the first place.
SO........ Hopefully this surgery has bought me some time with less pain. I already feel a lot better. I know it won't be 100% because of scar tissue that I have, etc.... but I should NOT need to be on methadone or anything anywehre near as strong anymore. Hoepfully NO narcotics at all!!!! So now when my PM doctor gets back next Monday I have to talk to her about helpign me get OFF the methadone now. You would think she would jump at the chance since it means that she can get "rid" of me then but I have this uneasy feeling that she is going to be problematic about it. And like I said, my stupid primary didn't even give me enough to last me at my regular dose until she even got BACK from vacation. Which doens't seem right....but I have been taking less then prescribed and seem to be okay. I'm just afraid of w/d at this point. I want OFF the methadone as soon as possible but I don't want to go thru any nasty withdrawel, I've missed enough work as it is. So I don't know how fast you can go off methadone? I know the w/d is supposed to be terrible so I would imagine it is best to go slow. I'm just worried these doctors are going to give me a hard time even now that I am trying to STOP taking the methadone!!! My primary seems to think that it's okay to just stop taking 40mg a day, but from my understanding that would be a very bad thing to do??? I've only taken 30mg for the past three days and feel okay. Can I drop lower than that right now without getting sick? Any advice would be much appreciated.
Well, sorry this is SOOOO long!!! So much has happened in the week or so that I hadn't posted it just blows my mind. I feel so much better too that I feel I must be dreaming.... It's like I went IN to surgery with a pain level of a 12, got cut into in three different places, had my internal organs operated on and came out with a pain level of about a 5 only! Just seems backwards!!! But I'm not complaining, that's for sure. I just hope it lasts. It's gotten better each day. I'm terribly sore in my abdomen but ice and Aleve seem to be taking care of that. At this point my biggest concern is getting off the methadone wihtout withdrawel. Or at least without HORRIBLE withdrawel. I need to be able to work and function while doing it....
I'm so glad to hear your feeling better, although, I'm sorry to hear about all the trouble with your primary & PM docs.
It's ridiculous how both docs treated you, I'm just glad your new gyn went to bat for you with your docs and finally, a doctor cared enough to do the surgery and help get rid of your pain.
It's wonderful that you can think about stopping the methadone. If your PM doc gives you a hard time about slowly decreasing the meds to prevent withdrawal, you should file a complaint with the medical board. I would hope she would be relieved that you are in less pain and want to discontinue the methadone. Your wanting to stop the meds should prove to her that you really were in pain and any concerns she may have had about you when your meds were stolen should be totally gone just by your request to get off the meds.
Keep us posted & I hope you continue to have pain relief.
Tina I'm so relieved to hear from you!! Sounds like you've been through the ringer since you last posted. It also sounds like they've made a diagnosis of endometriosis and were able to remove or cauterize (sp?) some of the endometrial tissue that shouldn't have been there. It's those places that swell and bleed each time you get your period and in between your periods that cause so much pain. They end up stuck in all the wrong places and continue to thrive and grow as long as you have estrogen to fuel them. You probably also have a belly full of adhesions too. UGH - it's all coming back to me now. You know I'm now tapering off my methadone while upping the topomax. Today I've started my 50-40-50 cycle for 1 week. I go to 40-40-40 next week, then 40-30-40, etc., until I hit 30-30-30 a day. Then I go back to my pain management doc for further instructions. I want to get to the lowest possible amount of methadone that will take care of my pain. I know that's still lots more than your daily dose and I wouldn't know how to advise you on a taper. If your pain management doc doesn't help you get off the methadone, I would have to agree with SammiJoe about lodging a complaint against her with the medical board. Well, please stay in touch and let us know how things are going for you. It would be a very happy event if you never had to visit this board again.....but we would also miss hearing from you Tina!! KathyMac
Well I know that the first tiem they went in and lasered out endo growths etc....they found a lot more than they did this time. So the depo etc...I've been on has been helping prevent some growth. And I know that the fewer srugeries they do, the better for fertility, etc.... But every doctor I've talked to now, with the exception of my gyno (the one I've been dealing with for the past two years), my primary, and the PM, cannot seem to understand that with my increasing pain over the past YEAR but especially the past few months WHY in the world they didn't want to go in and see what was going on. It's like they just didn't believe me. Evne though I had diagnosed endo and had had previous cauterizations and surgeries, etc....to prove it. They just thought I was making it up or something. Either that or they just plain old didn't care. And I really don't think that is what it was. I think they just plain old thought I was lying and wanted more meds. So no one listened to me. Out of all three of them. I had to go out and find a different doctor and he saw right away that there was something wrong with his first EXAM of me (that's another thing, my other doc's NEVER examined me, they never SAW me.... only would tlak to me on the phone no matter what I said). And like I said, sure enough the exact spot where I said the pain was increasing is where they found the problem areas. I wasn't lying. Now they know. But It still ticks me off that I suffered like this. It's my previous gyno that really gets me. How could she just blow me off like that knowing my history of how bad the growths were back in 2000? That's SIX years. You'd think she would have had an inkling of an idea that maybe she should take a look around since I was calling her on a monthly basis complaining of increasing pain over the past two years. She just didn't want to deal with it. I know a lot of doc's don't like dealing with endo. But stilll...... And then the PM, I guess she just didn't believe me. Otherwise you would thnk that she would have been a little more insistent that my GYNO figure out why my pain was worse. But they all just ignored me. And my new gyno said that this could EASILY have been diagnosed and done ANY time within the past two years.
You would think that with Pain Managment contracts etc....that she should HAVE to help me get off it. Considering that I did not violate my contract or anything like that. That I had surgery, my pain has decreased and it is no longer necessary for me to be so heavily medicated so I want to go off. As you said Sammiejoe, that SHOULD show her that I have been on the up and up the entire time. All I wanted was for the pain to be gone. Either by medication or surgery or whatever.... Well, now it is. And hoepfully stays that way. So you would think that they would HAVE to help me go off it. It would be really unethical to just stop prescribing and let me go into w/d. Why would they do that? I think I have proved myself to them plenty at this point? I can't imagine any CARING doctor would let a patient go thru that w/d for no reason like that. But honestly, this has been such a mess for me I just don't know. I mean I had to have a doctor make threats against another just so that I could have meds AFTER SURGERY. My PM knew I was due for a refill this week and when I called on Thursday just left me on my own to TELL another doc that they HAD to prescribe methadone for me and then went out of town leaving me in the lurch. I mean, what if my primary had NOT done it? I would have ended up in the hosptial again after surgery because it would have been the only place I could stay on my methadone because my PM was out of town!!! It's like they all made me feel like I was doing something wrong. And all I was ever trying to do was to get someone to LISTEN to me. Well, now someone has and things are better. But now I jsut don't want to be in some horrible nightmare trying to go off the methadone. That's all I want at this point. Is to go off of it without being sick trying to do it! They MuST have some sort of policy in the PM clinic on how to do that you would think..... But will they do that for ME? You would think that now my PM would know she was wrong about me.....but some people are just always unwilling to change an opinion about someone no matter what happens to show them they were wrong. And my primary doens't want to do it either. Like I said, he thinks I can just jump off at 40 and be fine but from what I understand that is NOT true.