Looking for Help

[Lernica]

Jami,

If possible can you stand while using your computer? I am standing at the moment. When at home I put the laptop on a high surface, about chest height. At work I have an "adjustable height desk" which moves up and down with the push of a button. The desk is up most of the time. I rarely sit.

I took a six month leave of absence to get a handle on my pain. Once I did I was able to go back to work again, although only 2 hours a day. You can do it too!

I am glad to hear you are taking your pain meds again. Do not be afraid of them! You've been through enough surgeries to know that you can wean yourself off them when the right time comes. Also, please try some ice between your legs. It really really helps when the pain is bad. Even if the pain is in your abdomen, icing the crotch helps. Sometimes I use both heat and ice at the same time; ice between the legs and a heating pad on my tummy or lower back.

Constipation is not good for PN, as straining puts pressure on the nerve. If the meds make you constipated, please use a stool softener to keep the stools soft (applesauce consistency). Do not strain!

We are here for you, and many of us have been through the pain that you are in right now before getting it settled down.

Warm regards,

Lernica

[Jami]

I live in Depoe Bay. I am on a wating list for OSHU for their Urogynocology Department. The doctor I go to see on Wednesday in Springfield is a Urogynocologist. Since I had a hysterectomy so long ago, initially never looked that route. What do you use to control pain? I am looking for anyone with suggestions on pain control. There is a PT I have been referred to in Portland. Is PT useful in pain control? On the pain scale I am a serious 8-9 without the oxy. Gabapentin works to stave off serious meltdown but perhaps I am not taking enough for serious control. Thanks for advice. I so appreciate it. Jami

[Jami]

Lernica,
Thank you for your advice. You made me aware that bathroom activity is tough on more than just me becuse, you are right, it adds to the problem. I will try the ice and heat thing together. I tried some ice last night but I was so completely out of my head nothing was working and I was so ready to do self surgery...my doctor in Depoe Bay thinks this pain is in my head so is once again cutting me off from the narcotics. I have never used drugs recreationally in my life. The oxy does not alter me in any way, for example the way alcohol may make you feel. It just allows me escape from the pain, suicidal thoughts, pain altering my judgement in downright crazy ways. I am standing to write. Again thanks to you for helping me. Jami

[calluna]

Oh dear, you really really need a different doctor. He thinks the pain is imaginary? - and that you are after narcotics for some other reason? - that is positively insulting. What outrageous rubbish, it makes me furious to hear things like that. He should be ashamed of himself for leaving you in such pain. Actually I think more to the point - you need some different meds. Opiates do help a bit, but there are other things that help more.

Right, lets put this in order.

What to use for pain - first, ice. Really, it should be the first thing that you reach for. Lots of us have icepacks on nearly all the time. (Numb = good)

Next, meds for pain relief - antidepressant. Not for depression at this dosage. Amitriptyline is first on the list. Usual maximum dose for pain relief is 50mg. Usual starting dose is 10mg or 20mg at night, increasing to 50mg at night. Can be very effective indeed.

Next - add in an anticonvulsant. Gabapentin is first on the list. You can go up to 3600mg a day. If that doesn't do the job, then next on the list is to take down the gabapentin, and then try pregabalin (Lyrica). Usual maximum dose is 300mg a day.

In addition to all this, opiates, or tramadol which has more effect on neuropathic pain. Max dose for tramadol is 400mg daily. (You may like the slow release better than the ordinary stuff, I do, it keeps things more level.)

And ice. Do not underestimate this, it can really help.

In addition to meds, there are a couple of things not to do - Don't let yourself get constipated, it will make things worse. And by the way, many of us find bowel movements to be major pain triggers, until things are brought under control. And don't sit. Really, really, really don't sit. Not at all. It will make things worse.

I think you are absolutely right, you are not on a high enough dose of gabapentin. Most people with PN would need 2400mg, and many need as much as 3600mg. You might also ask about adding in amitriptyline or nortriptyline 50mg at night, don't jump in at that dose though. And if he doesn't want you to take oxycodone, ask about slow release tramadol - actually, he may be more inclined to prescribe that, it is pretty hard to abuse a slow release med as you don't get any 'hit'.

Please keep posting, we are all here for you, and we know what PN pain feels like.

[TinyDancer]

Calluna,

What kind of surgery will you have to free the nerve. It's always so interesting to hear what people in other countries are doing for PN.

Kate

[donstore]

Any doctor who would let a patient suffer needlessly is beyond contempt.

[JODDY]

I agree.

[calluna]

Calluna,

What kind of surgery will you have to free the nerve. It's always so interesting to hear what people in other countries are doing for PN.

Kate

Kate, I haven't seen the surgeon yet - three more weeks to wait. I will probably have a laparoscopy, and he will see if he can deal with what is impinging on the nerve - it might be mesh, it might be a misplaced stitch - or it might be scarring from a retractor being held in the wrong place for a little too long - the list goes on.

[Lernica]

Jami,

It occurred to me that your excruciating vagina pain might be related to a lack of estrogen, given your hysterectomy. When you see your uro/gyno tomorrow, ask him/her whether your vulva is showing signs of atrophy (i.e. dry, itchy, sore, pale in colour). If so, a couple of weeks of a vaginal estrogen suppository (e.g. Vagifem -- a prescription drug) will make a huge difference. This is my recent experience. After using a suppository every day for two weeks, you use it only a couple of times a week thereafter to maintain healthy vaginal tissue.

[Gusselsprouts]

Hi Jami,

I sent this as a PM last night but I'm not absolutely sure you received it so I decided to just post it as I don't think it contains anything too controversial. Sometimes members say they have a problem with sending or receiving PMs, so just in case...

I like all the others that have written to you so far on the board, would like to offer you my support and words of encouragement. I am so sorry for all that you have been through not only with the loss of your husband but now with your own medical problems and the excruciating pain that you are experiencing. So many of us, as you can see, can relate to the pain that you are describing.

Would it be possible for you to find another primary care provider ASAP? Your D.O.,is in my opinion, is incompetent (besides being a jerk and being cruel) and could be brought before the Board of Medicine in your state for not providing you with care that meets the standard of care for treating pain. Pain is now considered the fifth vital sign and it is imperative that it be assessed and treated appropriately.

I don't know how small the town you live in is, but perhaps you could find another doctor, or perhaps a nurse practitioner, in a town close by? Perhaps you might want to try and find a woman physician or NP?

I do think all of Calluna's ideas for medications are excellent. You are already on gabapentin and can gradually increase the dose of that, but that medication as well as the other ones that Calluna suggested can take a bit of time to kick in. You could try Tramadol instead of oxycodone, but from what you have told us about your doctor it sounds unlikely that he will even prescribe that for you.

I do think that there can be a role for narcotics long-term in certain cases of PN or PNE. I am on a Fentanyl patch at a fairly high dose. This is a long acting narcotic and is working well for me. I had surgery in mid-May and now do not have to take any medication for breakthrough pain. I did recently try to start lowering the dose of the patch, but it was too soon and so I am going to stay on my current dose for a few more months to allow for more healing. I am also on Lyrica and Cymbalta. I do not feel "addicted" to the fentanyl because in no way does it make me feel euphoric or "high". I am physically "dependent" on it. That is why I had some unpleasant withdrawal symptoms when the dose was lowered recently. The dose was increased to what I had been on previously, not because of the withdrawal symptoms (I got through those) but because of the increase in pain.

You are going to need a prescription for oxycodone, because it sounds like you are going to soon run out, and it is the only thing that gives you any real pain relief at this point and helps to keep you from sinking into this terrible pit of intolerable pain, despondency, and suicidal ideation. You are going to need SOMEONE to prescribe that for you. Perhaps the uro-gynecologist who you will be seeing this week will give you a small prescription for it, though specialists usually don't like to get involved in prescribing narcotics and will either leave it up to PCPs or pain clinics.

Do you have any pain clinics that aren't too far from the town you live in? Perhaps you won't even need a referral, and if you explain the situation, you might get in to see someone fairly quickly.

I guess I am just urging you to try you hardest to find someone to prescribe the narcotic pain medication that you so obviously need right now. It frightens me that you think about suicide, but I can understand that the pain can be so bad it can seem like an option. Please, please--don't take that route. There is always help. Call a friend and go to the ER. They can give you IV pain medication if it gets that bad. Call an ambulance if you need to. Call a suicide prevention hot line. But just remember that once your pain is under control, and it will be, these thoughts, won't cross your mind anymore.

Please find another doctor who will help you. And once you are feeling much better, please file a formal complaint to the Board of Medicine in Oregon regarding your physician.

By the way, do you have a friend who can drive you to your appointment with the uro-gynecologist on Wednesday so that you don't have to sit for the long drive?

My heart goes out to you, it truly does. Will be checking back here to see how you are doing.

Lois
Gusselsprouts