Open main menu ☰
HealingWell
Search Close Search
Health Conditions
Allergies Alzheimer's Disease Anxiety & Panic Disorders Arthritis Breast Cancer Chronic Illness Crohn's Disease Depression Diabetes
Fibromyalgia GERD & Acid Reflux Irritable Bowel Syndrome Lupus Lyme Disease Migraine Headache Multiple Sclerosis Prostate Cancer Ulcerative Colitis

View Conditions A to Z »
Support Forums
Anxiety & Panic Disorders Bipolar Disorder Breast Cancer Chronic Pain Crohn's Disease Depression Diabetes Fibromyalgia GERD & Acid Reflux
Hepatitis Irritable Bowel Syndrome Lupus Lyme Disease Multiple Sclerosis Ostomies Prostate Cancer Rheumatoid Arthritis Ulcerative Colitis

View Forums A to Z »
Log In
Join Us
Close main menu ×
  • Home
  • Health Conditions
    • All Conditions
    • Allergies
    • Alzheimer's Disease
    • Anxiety & Panic Disorders
    • Arthritis
    • Breast Cancer
    • Chronic Illness
    • Crohn's Disease
    • Depression
    • Diabetes
    • Fibromyalgia
    • GERD & Acid Reflux
    • Irritable Bowel Syndrome
    • Lupus
    • Lyme Disease
    • Migraine Headache
    • Multiple Sclerosis
    • Prostate Cancer
    • Ulcerative Colitis
  • Support Forums
    • All Forums
    • Anxiety & Panic Disorders
    • Bipolar Disorder
    • Breast Cancer
    • Chronic Pain
    • Crohn's Disease
    • Depression
    • Diabetes
    • Fibromyalgia
    • GERD & Acid Reflux
    • Hepatitis
    • Irritable Bowel Syndrome
    • Lupus
    • Lyme Disease
    • Multiple Sclerosis
    • Ostomies
    • Prostate Cancer
    • Rheumatoid Arthritis
    • Ulcerative Colitis
  • Log In
  • Join Us
Join Us
☰
Forum Home| Forum Rules| Moderators| Active Topics| Help| Log In

please help

Support Forums
>
Chronic Pain
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
profile picture
di43
Regular Member
Joined : Jan 2012
Posts : 108
Posted 1/4/2012 5:36 AM (GMT -6)

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

profile picture
Blessedx8
Veteran Member
Joined : Aug 2008
Posts : 3193
Posted 1/4/2012 6:03 AM (GMT -6)
Di43,

I am sorry to hear of your struggles, but glad you found your way here... welcome.

I am 38 and was put on opiods for pain in my late 20's. I've been on unheard amounts of oral meds, although I am currently on a really low dose... All that said, I've had "emergency" care... and the IV meds DO work. Not morphine, as I DO have a tolerance to that; but there are other things they can use such as dilaudid or fentanyl.

Just wanted to share my experience. To me, it just sounds like your doctor is balking at wanting to continue you on pain meds. I do understand completely why you don't want to change meds, etc... because what you are doing seems to be working.

...Tina
profile picture
CRPSpatient
Veteran Member
Joined : Mar 2011
Posts : 1278
Posted 1/4/2012 6:23 AM (GMT -6)
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
profile picture
di43
Regular Member
Joined : Jan 2012
Posts : 108
Posted 1/4/2012 8:02 AM (GMT -6)
Hi Tina and Laura

Thank you so much for your compassionate and detailed responses, I really appreciate you taking the time to reply. The information you have given me is very useful.

Yes, Tina, I thought exactly the same that the doctor was just baulking at keeping me on the meds. I honestly didn`t think i would get that from this doctor, a pain specialist, the one sort of doctor who is supposed to understand! I thought going to a pain specialist again would be helpful. It was a pain specialist who put me on first buprenorphine patches, which helped more than anything else, and then oxycontin. Not being a doctor I didn`t know if they were right. I`m so glad to know that I can say now I ve spoken to other people who have had emergency care and have still been able to use the same meds.

Laura thank you for your suggestions too. I find that the oxycontin works amazingly well. It`s only rarely now where I have bad cases of pain and it doesn`t work. I had to go off the buprenorphine because the breakthrough pain was really bad. I`ve tried anti-depressants and anti-convulsants and they haven`t helped at all. Anti-depressants always give me side-effects and I don`t like the way I feel when I take them. I used to take them before I had pain for depression and I think I felt worse, just like I had no personality and I still felt depressed but it was sort of numbed, but not in a good way. I`ve been to several gynaecologists and a vulvar disorder clinic and it seems I don`t have a run of the mill case. Usually vulvodynia is classified by pain during sex or with contact etc but I don`t have that at all, I just have a pain that happens to be in the same area and it`s more like the sensation of a toothache, sometimes spasms, which is there constantly. It`s classified as vulvodynia but I think that`s more because of the area of where the pain is located. At the vulvar clinic the doctor was really surprised that when she did the examination I didn`t feel any pain because she was touching me. I don`t know lots about it, so that`s what I have observed anyway.

Anyway thanks heaps again. I feel a bit more hopeful that I can become more informed here and will be able to deal with the doctor.

Love Di :)

profile picture
Boxerlover
Regular Member
Joined : Dec 2006
Posts : 275
Posted 1/4/2012 8:03 PM (GMT -6)
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!

profile picture
Screaming Eagle
Veteran Member
Joined : Sep 2009
Posts : 5005
Posted 1/5/2012 8:00 AM (GMT -6)

       Good morning Di!

           I guess I missed your post yesterday, and wanted to pop in and Welcome you here as well! wink

     I don't have much to add, since you have alrteady gotten some great advice!

         Enjoy the forum!

   SE wink

profile picture
White Beard
Forum Moderator
Joined : Feb 2009
Posts : 3740
Posted 1/5/2012 11:22 AM (GMT -6)
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
profile picture
fireflyhillary
Regular Member
Joined : Jan 2012
Posts : 148
Posted 1/10/2012 9:28 PM (GMT -6)
I have to say that I've never heard of taking opiate's for vulvodynia- I was diagnosed with it in 2003 right after I was diagnosed with Interstitial Cystitis. I was prescribed Paxil and Hydroxyzine (anti-histamine/anxiety medication) for both conditions and it helped a little with the vulvodynia. I have tried every cream there is for the vulvodynia and none of them helped- the one thing that finally made the difference for me was wearing only cotton underwear and using Summer's Eve for sensitive skin. I know those two things seem like they wouldn't make much of a difference, but they have made my vulvodynia almost nonexistent.
As far as the pain doctor being concerned about your medications- that's how most of them are when you first see them. When I saw my pain doctor the first time he had my records and knew that I had always been prescribed Percocet, by the way, was not seeing him for vulvodynia, it is for back issues...anyway, he would not prescribe the Percocet and gave me Lortab, which never helps me and makes me nauseous. When I went back for my second appointment I told him that the Lortab does not help, but that the Percocet does & he said he has to start his patients with a lower dose pain medication as to not get in trouble with the DEA. I'm not sure if your Doctor is being cautious or is just not listening to you, but either way, you definitely need to have a long talk with him the next time you see him.
I hope you get the help you deserve!
profile picture
di43
Regular Member
Joined : Jan 2012
Posts : 108
Posted 2/6/2012 12:56 PM (GMT -6)
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 :)

✚ New Topic ✚ Reply

More On Chronic Illness

Seizure-Free : From Epilepsy To Brain Surgery, I Survived And You Can, Too!

Seizure-Free : From Epilepsy To Brain Surgery, I Survived And You Can, Too!

Get Moving With Chronic Illness

Get Moving With Chronic Illness


HealingWell

About Us  |   Advertise  |   Subscribe  |   Privacy & Disclaimer
Connect With Us
YouTube Facebook Twitter Instagram Pinterest LinkedIn
© 1997-2021 HealingWell.com LLC All Rights Reserved. Our website is for informational purposes only. HealingWell.com LLC does not provide medical advice, diagnosis, or treatment.