On top of having Endometriosis and IBS, it was recently suggested (strongly suggested, I might add) by my new GYN that I have Interstitial Cystitis. I told her about the pelvic pain that I have, and she told me that it was probably caused by IC. She didn't mention that it could be caused by my endo or by my IBS, and she also didn't ask if I have any symptoms of IC (which I don't, other than pain). So, now I've got another condition tacked on, and still noone is treating me for pain!
I would think drs would be more willing to treat me for pain given that I have three problems which cause pain in the same area, and compounded together cause me a lot of pain! Instead, I keep getting this feeling like I'm being dismissed.
My new dr. didn't even mention anything about pain treatment - the whole reason I went to see her - and when I asked her about it she didn't really say anything. She just told me to change my diet to help the IC. But its called PAINFUL bladder syndrome for a reason!
I'm also worried that when I do discuss pain meds with a dr (and perhaps this is why I get so nervous bring it up), she is going to think I'm just after drugs. I've got a horrible tolerance to most OTC pain meds, and after trying Naproxen, Ultram, and Tyl 3, I've learned that I need something stronger. Its hard to go in to a new dr and ask for a strong pain med, but I don't want to start with something I know won't work.
I'm so discouraged right now, and I don't know what to do. Its making me really depressed. Do I see a new dr, or push this one on the issue? Or do I just ask for a referral to a pain management dr? I'm so lost...
I completely understand the feeling that no one wants to help you. I am 23 now, and was diagnosed with a herniated disk 3 years ago. I can't begin to tell you how many doctors told me that I couldn't be in as much pain as I said. One even told me that I didn't need strong pain medicine, and that if he prescribed it for me I would sell it on campus (I lived in a dorm at the time)!!! I was outraged! First, I would as your doc for help. The GYN may prescribe something or reccomend some other treatment. Explain that the medicine you are taking now does not help your pain - ask if there is something else you can take (or do). My current pain management doc who finally put me on a long acting med and a short acting pain med, was much more receptive to increasing my dosage when I started taking yoga class, and receiving massage therapy, and going to see a pain psychologist. If this doc is uncomfortable treating you with stronger meds (my primary care will not prescribe narcotics - she feels that I should have a specialist treat whatever part that hurts) at which point you should ask for a referral to a pain mgmt doc. Try not to keep your original doc out of the loop, as this usually make them feel like you are doc shopping (you should be able to try different docs out until you find one for you - but that's another story).
Most of all - don't give up. It took me 3 years to find a pain mgmt doc and actually to get treated with adequate medication. Pain deserves to be treated and you should not feel wrong for asking for help. Good Luck!
Well, my regular GYN told me that she wouldn't treat me for pain anymore (I was on Ultram, and then back to Tyl 3s) until I saw a regular dr. I met with one, and he just referred me to another GYN after diagnosing me with IBS (which I already knew I had) and agreeing that I can tell a difference between the pain from IBS and from my endo. He prescribed me some medicine for my IBS, but I don't have horrible problems with it, maybe once a week my tummy will act up and I'll have some cramping.
I went and saw a new GYN and like I mentioned before, she didn't bring up treatment options other than staying on birth control. And the whole reason I went in there was for pain!!!!! How crazy is that? She was so quick with me, like she was rushing to get me out of there, even though I was a new patient. That is what makes me hesitant to ask. I guess I'll just suck it up and ask. After seeing other posts on this board, I wonder if I shouldn't get a copy of my records to see if my old dr wrote anything that might discourage my new dr? Never once did my old dr have any problems with me, and for the most part I was only on Tyl 3s. She just thought my pain wasn't caused by the endo, and to see if there was another reason. Basically, it seemed to me like she was telling me I was wrong to be in pain!!! And I tried telling her its the same type of pain I've had all along. I know my body!
I don't feel like I need a PM dr, just because I'm not in pain every day of the week anymore. Just a couple of days. I just want a regular presciption for something a little stronger than Tyl 3 (because I've learned thats what helps), which I can take when needed, but not daily. I haven't had any experience with PM drs, so I don't know if they just treat patients in more severe pain?
Thanks for the response. I guess I'm on the wrong board, since noone else really seems to think this is a legit pain management issue. I just wonder if I'm crazy for hurting as bad as I do when I do, since my drs don't think I should be in pain at all. That is whats discouraging.
I don't think you're crazy at all; I think you have legitimate issues that should be addressed.
I think I've read posts on here with girls that have Endo that have had a hard time getting their Dr.'s to understand, and it took them awhile to find a Dr. who was willing to listen.
I've heard the people who can't get anything prescribed, then I've heard the people who have been prescribed OxyContin for their endo.
The Pain Management Clinic I was going to go to this Friday treated "acute" pain, too. I don't know if their definition of acute means just after surgeries or what, but they listed acute pain on their site. I mean, they are pain management doctors; pain is what they treat. I'm sure they'd look into something for you.
I just got my GI paperwork, and actually I was surprised to see that he didn't write anything I thought he would. On the contrary, he only wrote what I told him I felt, what I thought, and what his opinions were. He would ask if I had depression, I would say.. Nope, no depression, just get down when I feel bad all the time... But I don't have that heavy feeling, or feeling like I'm under a dark cloud like I know people experience who are depressed.. (although I did have that feeling this past week when all things went haywire). And he didn't write, "I think he's depressed". He wrote EXACTLY what I told him. I was surprised; I figured he'd write things like "depressed" "anxious" "stressed". OBVIOUSLY people are going to feel those things when they're in pain, anyways.
I guess what I'm getting at is it took me 15 Dr.'s until I found one willing to work with me for pain management (who just happened to be a pain management doctor-who happened to release me-who then happened to take me back-crazy, eh). Would you consider seeing a pain management doctor? At the very least you could go in there and discuss your problems with them, and they'd surely tell you if they'd be of any help.
I would think at the very least they would listen. Who knows, they may have something up their sleeves the other Dr.'s haven't though of.
Dont feel alone in regard to feeling dismissed..Its happened to me several times. I would suggest you going back to your first obgyn who was treating your endo pain and ask for a referral to pain management doctor.
Also, I would find a good Urologist who is familiar with Interstitial Cystitis. There is a great deal of information on the net regarding I.C. I was referred to pain management by my Urologist who diagnosed me with I.C. However, it took a year of trying different pain treatments prior to getting referred and I asked my Urologist for the referral.
I am surprised your Obgyn suggested you had I.C. instead of referring you to a Urologist for a proper diagnosis...I know what it feels like to be passed from one specialtist to another. Once you do get to a pain doctor, you will feel so understood and validated regarding your chronic pain. Pain doctors seem to be the only dr's. who truly understand chronic debilitating pain and have no problem with treating it.
But, before you can be treated for your chronic pain, you must first get a referral from one of your doctors. Also, I cant picture a new doctor referring you right away to pain management. Sadly, it does/can take time prior to being referred.
Hey Jules - I have endo too....I DO have pain every day, but my gyno doesn't like prescribing narcotic pain meds at all. So she has referred me to a PM doctor and I am SOOOO happy that she did. The treatment of my pain has been improved dramatically and I no longer have to feel worried about asking for pain meds, etc...
I have IBS, IC and endometriosis too. I have severe pain everyday. My doctors have tried a lot of things. Amitryptyline, Elmiron, Lupron, dicyclomine, ect. Nothing has worked so she has put me on a very low pain med Ultram. I tell her that it doesnt work and I am still in pain but do not ask her to change it . Like you I worry about looking bad to them trying to get pain meds and hesitate doing it for that reason. But I can not function on a day to day basis and am at my wits end and dont know what to do. Im thinking about changing my doctor too, I just hope I get one who understands. Please let me know how things work for you.
IC A.K.A. Endo's evil Twin. This is usually a syndrome accompanied by Endo. I was diagnosed with IC when I was 17 way before I ever knew I had Endo. I also had a refluxive kidney. Let me explain what this is, its similar to having Gastro reflux. My kidney would contract to release urine into my bladder I would uriniate but it would back up into the kidney and the urine would sit in the kidney causing pain, infection, and other complications. I had surgery when I was 17 after a surgery that was suppose to be about an hour long turned out to be 4 hours total because my ureter could not be found within the bladder which led my doctor to create me a new canal in my bladder for my ureter to sit in because I didn't have one on my right side. I have been given Emirol (don't quote me on the spelling) and several other medications to stop the constant problem. What IC does is this it causes painful hemorage pockets in the bladder that sometimes burst, its a chronic inflammation of the bladder and will eventually lead to a shrunken bladder when you are older. It causes frequency and urgency, bladder spasams, frequent UTI's and bladder infections. I would recommend trying to lower the PH level of your urine, no soda, citric acid, or other things that can aggrivate the bladder. Some type of medication to control the bladder spasams, hang in there back when I had this problem in 96 it was not a commonly known disease my doctor found out from a doctor in Europe because he orginally thought it was in my head. Also hydrodilation of the bladder can help as well you will have to be put under for this procedure because they say its worse than child birth when the bladder is stretched to its max. Keep us posted on how you are doing and what the doctor is going to do for you. Hang in there and keep your head held high do not be afraid to tell your doctors what you feel and need.
I have found the the best thing for my IBS and you can look it up as well if you like. Iberogast by medical futures. I know it's not a pain med and I'm not your Dr. but this has done wonders for me. I like to try and take a more natural route when i have the opportunity. I'm not sure how or why it works but researched it before and figured it was worth a try. I'm glad I did and my IBS has been sig. reduced.
Last edited by moderator2; 04-23-2011 at 07:06 PM.
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For cystitis drink gallons of Cranberry Juice it helps and water to flush it through. Ask for Co Drydamol codiene based pain relief can make you a bit constipated but if you take with Fybogel Merbervine with anti spasmodic agent it helps. Colpermin mint oil caps good to take before eating controls the acid which irritates IBS and seems to line your stomach before food. Also Probiotics are good to balance gut bacteria they come in yoghurts in the form of Bifidus Acidophlous