Hi everyone I am hoping someone could give me some advice please. I have been diagnosed with vulvodynia, I`ve had it since 2006. I have tried many medications and other things to help and finally I`m on a treatment of oxycontin and oxynorm which is helping a lot. I still get the pain when the medication wears off and sometimes I have days where the pain can`t completely go away but it is miles better than it was on other medications. I`m doing well now, I`m able to go back to work and I`m not taking lots of sick leave like I was before and I`m just getting on with my life. I don`t have any bad side effects from the medication and I haven`t had to increase the dose for 18 months and I`m hoping I won`t need to. This medication also doesn`t make me feel high or out of it like many things like diazepam etc did. Anyway my problem is that my doctor wanted me to go to a pain clinic and I have and they told me that it`s not possible for me to keep taking this medication every day and it should be used just when needed. They said that because I am young (I`m 28), I shouldn`t take it every day as if I have a bad accident in the future morphine won`t work because I will be tolerant to it. I was really worried when they told me so I didn`t have time to think it over and didn`t know what to say, but now I think about it I`m sure since I`m on a low dose if I had an accident in the future they would be able to give me a higher dose of medication that would work. I think the doctor would just prefer me to take something else and is saying that to scare/convince me (I`m sure that what she said is true to a degree). I`m taking tablets, not having an IV, so I don`t think that in my case it would be that serious, considering it`s a low dose. I don`t know enough about it as I`m not a doctor so I`m hoping someone could tell me please. They want me to try another medication, an anti-convulsant, I think. I am very reluctant to change because 1) the medication I have is working and I am used to its effects and not having any bad effects, 2) with most medications I have bad side effects and I don`t feel like I can go through that again, 3) I can`t go through the trial and error again as I`m in a lot of pain and I can`t put myself or my body through it - when I tried all my other medications the waiting for a medication to take the pain away was absolute agony. Honestly I go through enough with the pain I`m in, I can honestly say at the moment I`m willing to take the risk of taking this medication and if I have an accident in the future it`s too bad, the pain I have is so bad that I just don`t care, I don`t want to live my life in pain every day and I feel like I can`t. I really would be on edge and in a bad way if I had to go through that again. I felt suicidal when I was going through trialling all the medication before because the pain was so intense and I`m sure I would feel the same again if it happens again. At the moment I`m not depressed and feeling positive but I know it`s because the pain is under control. I don`t think it`s fair that a doctor can treat me like a guinea pig and say we have to try this for the sake of it. I don`t want to try anything new, I have accepted that I will have this pain for a long time and there is no cure, so I don`t need a doctor trying to put false hope on me, it`s not healthy for me and I`m dealing as best I can. Surely at the end of the day I should get to choose how the pain is managed. It`s not the doctor who has to deal with it every second of the day.
Before I went on this medication the doctors had me trying lots of different drugs and none of them were effective enough so I had to smoke marijuana every day. In Australia I found a really caring doctor who said he`d prefer me to take painkillers as they are less dangerous than marijuana as long as you take them for pain and not for a high. My counsellor also said the same thing. I know if they change my medication I`ll have to go back to pot every day too because I won`t be able to handle the pain but I really don`t want to do that, my brain was fried when I did that. The doctor also wants me to try and have some procedure which is done with needles, they said it may help. I agreed to it but I think I may refuse it as I don`t think it will work and I don`t want to be in any more pain or discomfort than I am now. They said that it does not come without risk as well. I think I have the right to refuse it but I hope this isn`t going to influence their decision about my medication as well. Medications I`ve tried before are diazepam, carbamazepine, xylocaine, endep, buprenorphine, panadeine forte and tramadol.
I don`t know if any of this is making sense but if anyone has had similar experiences please let me know or if you have any tips in dealing with doctors I would be very appreciative. I am scared so any ideas or suggestions would help. Thanks so much and all the best in dealing with your own illness. Di