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how is your chronic pelvic pain treated how is your chronic pelvic pain treated

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Unread 03-31-2005, 10:32 PM
how is your chronic pelvic pain treated

Hi girls,
I'm just over six months out, and I'm still having a lot of pain. I won't go into all the details of what we're doing to figure it out and fix it, but let's just say I see medical professionals way more than I see my husband.

Maybe it's just been a bad couple of weeks, but I'm starting to think that I will wind up being stamped with the "chronic pelvic pain" diagnosis and sent home with a hot water bottle. At this point, it hurts so bad, I don't care if they diagnose me with a hangnail if they would just treat the pain while they look. The six months postop with pain, as well as the two years prior to my hyster/Burch with pelvic pain, has just about left me with undetermined source of pain I'm starting to think. What else could it be?

I know this isn't an uncommon problem. So, how is it treated? I'm just trying to gather experiences to try and get a feeling of if there is hope for feeling better if they don't ever find that specific cause of my pain. I'm in physical therapy, I've had a cystoscopy and pelvic CT, I'm being considered by pain management clinic (though they don't take cases they don't think they can help),I've seen my GYN on at least a monthly basis since my hyster, I'm taking Elavil and ibuprofen/Aleve on a regular basis, and my dear urologist prescribed some pain medication for me to buy me some time, but when those are gone, I'm not sure what to do. I have a rectocele, but that isn't really causing me any pain. It could be adhesions, says the physical therapist. It could be a problem with the stitch that is holding up my ligament for the bladder suspension, which may need to be taken down. They're not sure. What they ARE sure about is that they don't want to operate again until I'm well past the six months postop, just to make sure it isn't just delayed healing.

If it is delayed healing, I can deal with waiting IF they would take care of my pain while I do that. I'm willing to be patient (although I know I haven't been going through this NEARLY as long as most of you, so we'll see what I say when I'm in YOUR position, huh? when I will just want an answer!!!) as long as I can be somewhat comfortable. I'm aiming for a 3-4/10 instead of a 6-8/10 that I have now.

I guess what I'm asking is for all of you who either a) haven't found a sure diagnosis yet, or b) have a diagnosis of CPP... how are you being treated for your symptoms? Is there hope of being somewhat comfortable until they find a diagnosis and fix it? What if there ISN'T a diagnosis. Is there a long-term livable treatment for chronic pelvic pain without any sort of pathological source?

Also, has anyone in this situation had to increase (or start) antidepressants? I'm finding that my antidepressants aren't working nearly as well, and it has been pretty stable for the past several years.

Sorry to ramble on. I'm up late and in too much pain to get to sleep. I have pain medicine, but I really don't want to take it...I'm honestly so scared to run out of them before I have a plan to deal with my pain that I don't want to take them, even when in extreme pain, as I am now. Thank heavens for laptop computers and reclining chairs!

Thank you for listening. I really hope someone can help.

Good night all.
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Unread 04-01-2005, 05:50 AM
how is your chronic pelvic pain treated

Happy -

First of all - I'm sending you a big all the way out west!

I'm sorry you are so miserable!!! The downside is that so many of us have been in your shoes. Guess that's the reason we are here. And as you hear back from these wonderful women, you will see that they are inspiring and full of encouragement. At this point in your recovery, I know that will mean a lot to you.

Adhesions and Chronic Pelvic Pain. My monsters. The life I lead! The positive thing is that I no longer lead a miserable life! I started Pain Management in January and it has been a God send! So in answer to your question - YES it can be controlled! (The Pain) And there are many sisters on here that see Pain Management doctors that have CPP and different Pathologies (Endo, etc) and it works for them. I have also seen some threads from sisters that have had success from nontraditional methods such as yoga and accupuncture. My PM doc also suggested things such as Magnets to me. I was really concerned going in to the PM about being on narcotics for the rest of my I had already spent the better part of the past 5 years in a haze....but she assured me that there were many options out there, and we would try them until we found one that worked. I'm happy to report that 99% of the time my pain is non-existant. (And I do not take narcotics.) Going into PM my average daily pain levels were at about a 6-7/10.

Thing to remember - you are still healing from your surgery. But you are right to want to be pain free. You need to stay on top of your pain - don't be afraid to take your medicine. If you need more, you need to call your doctor and tell them that you do. BEFORE you run out. You commented that you don't think your anti-depressants are working anymore, my thought on that would be this - When you are in this much pain, you are bound to go into a deeper state of depression. (First thing the PM doc did was evaluate me to see if I needed antidepressant.) And when you feel like you are all alone in the world fighting this "thing" aka PAIN, it wears you down. So, you should probably talk to your doctor about it. I'm sure it isn't uncommon to have to change the dosage or try a different kind to see if that helps.

I don't know if I've answered anything for you! But know that you are not alone! We are all in this together! Anytime that you would like to talk, feel free to PM me.

Take care!

Unread 04-01-2005, 09:08 AM
how is your chronic pelvic pain treated


I am getting the impression from your post that you are not being offered any prescription pain medicine. Is that correct? If so, I would hightail it into the doctor that I had the best relationship with, tell him/her how uncomfortable I am and that I want pain relief.

We all have a right to effective pain management! I can't imagine that the PM would write you off before seeing you! If so, there are more PMs out there and you just might have to travel to find one, but it will be worth it.

Keep us posted!!!

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Unread 04-01-2005, 10:33 AM
how is your chronic pelvic pain treated

Thank you, sisters.

It is such a relief to not feel alone any more. No, I haven't been offered anything prescription for pain, other than Elavil, which I'm taking. I also take 800 mg ibuprofen every four hours, and two Aleve twice a day. I was hurting so bad early last week that I called my GYN doctor to see what he had found out about the pain management doctor. I was told that he'd gone out of town for 10 days and that they couldn't help me until he got back. They told me to go to the ER if I really couldn't take it anymore, which I hate to do. I'm in the middle of a workup for this already, and going to the ER for pain management seems strange, although I've done it before and would do it again. So I called my urologist, who isn't actively treating me right now, but had consulted on my pelvic pain recently. She called in some Norco and wished me well. She was so nice. I was shocked.

My GYN doctor has referred me to PM on my request. I respectfully mentioned to his nurse that I'm in life-altering pain and that if my GYN wasn't comfortable managing this kind of pain, could they please refer me to someone who could. The PM rejected my case at first, saying that he'd never done a steroid shot to the pubic symphysis before, and the literature is not really supportive of doing so. I was miffed about this, because yes I am in physical therapy for my pubic bone, and yes, I have pain there, but I don't think that is a significant part of my pelvic pain. My GYN hadn't even suggested treating any other source of pain other than the pubic bone. So the PM doctor is only getting that information, not the fact that I've been dealing with pelvic pain for the last 2.5 years.

After my angel of a urologist called in the pain medicine for me, I have actually been feeling pretty good when I take the medicine. I've been a little more "even", says my husband. I'm not as snappy with the kids. I've gotten more done around the house, though it isn't as clean as I'd like it to be. I've been able to sit at my desk at work for more than two hours. I'm not pain-free by any means, but it is at a tolerable and livable level now.

I don't have the "Brain fog" that people associate with narcotics. It doesn't make me tired, dizzy, happy, sad, etc. I just feel "normal" when I'm on them, like I can do some of the things that I used to do. I've been off and on them for a while now, with the preop pain, as well as the postop pain, so that may be why I don't have any side effects with them. I don't care if I'm on them forever at this point. I used to be so against them long term, and I still am if you don't absolutely need them, but they way it has helped me get some of my life back and it doesn't make me feel funny, I would take them despite the stigma that comes with it.

At this point, I'm at a cross roads between what my GYN will do, what my PM will do or IF he will do anything, and nearing the end of my prescription that my urologist gave me. I'm sad every time I take a pill because I know I'm one dose closer to being miserable again.

I have to ask you guys....if I do wind up managing this on my own, what kind of nonpharmaceutical treatments have worked for you? Or at least nonprescription? I'm trying to relax my body, do my physical therapy exercises religiously, and take the Elavil and antiinflammatories. Any other ideas? I'm very afraid that I'm going to be left on my own to manage this pain because they can't find a cause for it.

I'm just not sure how much fight I have left in me, ya know?

Thanks so much for your encouragement and ideas.
Unread 04-01-2005, 11:03 AM
how is your chronic pelvic pain treated

Oh, Please don't get me wrong!!! I don't have anything against the use of narcotics! I just always feel like I'm in a when I take them...and then I become use to them, so have to up the dose, etc etc. Lived that life for 5 years! Was a very non-productive life for me! And I was really hoping to avoid it if at all possible.

I agree 100% with Michelle. If this PM does not see you - without even talking to you - FIND ANOTHER ONE!!!! CPP is treatable! My PM told me "There is No CURE for CPP or Adhesions - but Pain can be treated - and that will greatly improve your quality of life." She was right.

You need to be very vocal. Tell them you need help. You are entitled to live without pain!!!

Look up another sister - her name is "uterless?" (I think that's how she spells it) - she has a lot of information on Pain management and alternative methods.

Please keep in touch with us!!!

Unread 04-01-2005, 12:01 PM
how is your chronic pelvic pain treated


From what I read in your posts, your gyn does not sound ready willing or able to help you with pain management. Could be a communication breakdown ... perhaps your gyn has not listened to your concerns and does not "get" how in pain you are and the effect on your life. Or, perhaps your gyn has no experience with CPP and really doesn't know what to do. In any case, my opinion (only my opinion) is that perhaps you need a new gyn on the case.

I don't think much of a PM that has not seen you and is already refusing your case. I would think you at least would have been interviewed and examined before that decision was reached. That would be a red flag to me. Docs (whatever their speciality) should do their own history and physical and not rely on hearsay from another doc. I think that's a reasonable expectation.

Do keep us posted. My heart goes out to you. You are in my that you receive compassionate and effective care!

Unread 04-05-2005, 10:23 PM
how is your chronic pelvic pain treated

Hi Girls,
Sorry it has taken me so long to get back to all of you. I really do appreciate your support and advice.

Now for the update...
I decided last Friday (April 1) that I'd had enough of waiting to hear back from the GYN office about the pain management referral I'd requested. The GYN doc got back from spring break on Tuesday and I had a promise that their office would get back to me just as soon as he was in the office again. Well, I waited three days and then decided to call them myself. The pain medicine that my urologist gave me was going to run out over that weekend, so I called and left a message for the nurse to call me back.

Well, the GYN himself called me back. I told him what was going on, and he said that he didn't think that I needed to go to PM just yet. He didn't think that he'd done all he could try on me yet. So I said that I needed pain control until that time. I was blunt and out there with it. I kind of lost it on the phone and told him that I really wanted him and his office to know that I am in constant, debilitating pain, and that I was not "seeking drugs", and that it had only been over the last two weeks that I had started to feel human with the pain meds that the urologist gave me. He told me that he didn't think I was a drug seeker; so then in my firey mood right then, I asked him if he would tell me if he did think that. He said he absolutely would and that my pain med use hadn't become inappropriate.

So he prescribed some Norco for me to last me another week until I could get in to see him. If I'm not doing significantly better
(continuing with physical therapy during this time to see if that helps) by then (which will be this Friday) that we were going to make plans to go in and cut that stitch from my bladder suspension. Our original plan was to wait until the end of May to even look at it again.

The plan has it's faults, however. He reduced the dosage of Norco from 10/325, which was working really well (and that was the dosage from the urologist) to 7.5/325. I have really noticed that it doesn't work as well. You wouldn't think that that small of a dosage adjustment would be noticable, but it has been. It doesn't last the six hours that the 10's did, so I'm taking four a day rather than three...which is the exact same total daily dose as I was on with the 10's. It doesn't make sense to reduce the pain med dose, as I think a tolerance develops. Anyway, another thing to bring up with him on Friday.

I'm just praying that I can keep it together during my visit. I just get so emotional when I'm talking about the pain. I'm just so scared that this is another chapter of having my pain treated one week, and not the next, and not knowing if I will be able to control my pain next week, etc.

What do you all think? Are any of you in PM AND having ongoing GYN care? Maybe it was a little premature in seeking a PM referral, but I need to have my pain controlled while we see what's going on in there. Is that unreasonable to ask?

Thanks ladies for your help and encouragement. Sorry it has taken me so long to get back here. My kids have taken turns with the stomach flu...grrrr.
Unread 04-06-2005, 06:26 AM
how is your chronic pelvic pain treated

Hey, I told you that if the dose he was giving you wasn't working well, you need to call and let him know before your appt on Friday. No sense in your feeling worse until then.
We have talked about this---I don't think you were being unreasonable when asking for PM through all this. YOu needed pain control and it didnt' look like at the time he was going to give it to you. I know what you mean about being emotional. I cry all the time talking about my pain ,etc...I don't feel bad about it anymore. It's funny how you get over things quickly going through all this stuff. Go ahead and call the office today and tell him that the dose isn't working well for you at all and could he call in an increase for you and then reevaluate on Friday.
Unread 04-06-2005, 02:04 PM
how is your chronic pelvic pain treated

I'm with Marian on this one. I cry about the pain too. I feel like they think I'm making it all up just to get more drugs. When all I want is to not hurt! I went through this for you guys all know!!!! It really throws you into a rut. The pain begins to rule your life. And you don't want that to happen. You need to take charge. It is great that you were able to talk directly to your doctor!!! And I am SOOOOO proud of you that you asked him all those questions!!!! It had to be empowering!!! Now don't loose that momentum! You can not be afraid of asking your doctor for what you need! He will tell you if he disagrees!!! But you have to be your #1 advocate in your medical care. He has no idea how you are feeling. He doesn't know how you are feeling on a day by day basis. So you HAVE to tell him! You are doing great. are doing this for your kids - for your family - but most of all - you are doing this for yourself!!!

We are here for you - anytime!!!

Unread 04-06-2005, 03:01 PM
how is your chronic pelvic pain treated


I am SOOOOOO proud of you for having this frank discussion with your doc. Tears are going to happen and serve to emphasize how badly you are feeling. Don't give that too much worry.

Please do think about calling your doc about the need to up your dose.

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