please help

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

Hi Di, and welcome to Healing Well,

I'm sorry that you're going through this at your age - I've just turned 27 and it's horrendous.

I agree to some extent with Tina - I'm on oxycontin for my pain (Complex Regional Pain Syndrome), and although my doctors have some reservations because of tolerance and my age, it comes down to quality of life. If I don't take opiates as part of my medication regime, my pain levels become so high that I can't function. Their primary concern is that I have adequate pain relief. Therefore the risk that I'll need them down the track for something else is one that I need to take. There are ways to manage tolerance after all - 'opiate holidays', drug rotation and so on.

I do understand too what you mean about trialling new medications and other treatments, getting your hopes up, only to have them come crashing down again. It hurts badly, physically and emotionally.

That said, vulvodynia I believe tends to be a nerve related pain? Certain anti-convulsants and anti-depressants are used to target nerve pain, and are often more effective at doing so than opiate medications. If you can bring yourself round to trying the med that the doctor is suggesting, it may be that it will let you spare the oxycontin a little.

Is ketamine an option? I've had several infusions for my CRPS (I'm also in Australia) - and during one of my infusions I had a nurse who had vulvodynia, who'd had ketamine herself for it. It had helped her immensely.

Best wishes,

Laura

I have to agree with the other posters. I am on fentanyl and was also concerned that my pain would not be controlled either under anesthesia or after. I have had numerous surgeries and pain conditions and have had complete pain control with I.V. meds. Both morphine and Dilaudid. And during surgery they used fentanyl with no problems. SO if they are working now and you have quality of life I say stay on the meds. I am always surprised when docs have asked me if I wasn't afraid of addiction or if I needed meds later. I have no quality of life when I have pain that bad so no I am not concerned about those issues because first off I have no certainty I will be around later and while I am here, I would like to have some quality of life to enjoy. I sufered for so many years I too thought suicide would be a blessing. No one should live in that kind of pain. We have the tools to help and they should be used.

Now as far as other modalities, I am open to anything that can help. If accupuncture would work then I would do it. I went through the shots, but they didn't help and thank goodness my doc said he would not make me go through them again since they did not work.

Hang in there and stand your ground!

Di I think your pain doctor is partially correct, being on pain meds like that, can complicate things when trying to treat you for acute pain, like surgery, or in the ER, but they have a varity of things they can use and try to get acute pain under control, and if the doctor is up to speed on dealing with pain, it should be no problem. They just have to realize that it takes more and maybe a different type of pain med, or a combination of meds to do the trick! I know when I had my disk fusions they had a dickens of a time getting my pain undercontrol, part of it was because, my tolerance to the pain meds, but most of it was because they were not familiar on how to deal with someone who was also being treated for chronic pain! In the end, it took some time, and I suffered quite a bit, and they did have to experiement allot, till they found the right combination to get the pain to a reasonable lever!

You know, I have been on oxycontin for years, and it is a great for controlling pain without the side affect of feeling medicated and drugged, not like allot of the other pain meds I have been put on! I have had two major fusions while on it and gall bladder and shoulder surgery, and yes they did have some difficulity controlling my pain, but most of it was because of the doctors not being familiar with how to deal with patients that were being treated for chronic pain, not because of the meds I'm on!

Good Luck to You!

White Beard

Hi everyone!

Thank you so much for your kind and detailed replies, they really made my day! Sorry I haven`t seen them until now. Well since I last posted I went back to my GP to see what he thought of the pain specialist`s suggestions and he was great and sort of made a joke about it and said the specialist is overly worried about morphine. Then I said I was very concerned about my quality of life if I had to change to Lyrica and he said pain clinics love trialling Lyrica and he said he doubted it would work. I mentioned I would be open to switching painkillers, it doesn`t have to be oxycontin I take, but I want to take opiates as they are working and don`t want to go down the road of anti-convulsants again as they didn`t work last time. He said he doesn`t have a problem with morphine so I can just keep coming to him. I`ve seen him again and said I don`t want to do the treatment unless he thinks it`s absolutely necessary and he said he agrees with my opinion and said it`s my choice if I do it or not. So I`m relieved there is a doctor who really cares and takes me seriously and now I don`t have to worry.

Fireflyhillary, it`s interesting to hear from other people with vulvadynia as I don`t know if I really have it, the pain I have is in the same area as vulvadynia but I don`t have any pain with contact or sex etc and I don`t have a burning or itching pain. I think that I have chronic pain that happens to be in the same place as vulvadynia and there seems to be no knowledge on it has been labelled as vulvadynia. I do have a family history of chronic pain though. I guess I would describe it like the sensation of a tootache, a really dull intense ache, but also it changes and sometimes I have spasms. I went to a vulvar disorders clinic and saw two doctors who were both amazed that I had no pain with contact. I don`t know enough about it though.

Boxerlover, I feel exactly the same, there is no knowing if we will be around in 30 or 40 years to trial if the pain meds do or don`t work if we need them for emergency care. Quality of life now is more important than something that may or may not happen.

Whitebeard, I know what you mean! I don`t feel anywhere near as drugged up on oxycontin as I did on valium or other things. 

I hope your pain is not too bad today. Hang in there! Di :)