Really need support and feedback - doctor is ignoring my pain

Hello everyone. I am new to this site, and I look forward to participating in this forum. I hope this message finds each of you in as little pain as possible.

Ever since this afternoon, I have been extremely upset, often crying from severe pain. The doctor is totally ignoring me and refusing to treat me. Actually, I had another doctor until 2 months ago, when he suddenly left. The previous doctor read my past medical records and letters from my former surgeons, who are considered experts in the field. He worked with me, which I was thankful for because my pain is completely taking over my life. I am at the very end of my rope now, and I often thank of just giving up because it is just no longer possible to carry on with this level of pain. And to have a doctor ignore my pain makes it a hundred times worse.

After my previous doctor left, I was required to meet this new female doctor. She breezed into the room, immediately attacked me because I have had to take Lortab for my pain occasionally, and then quickly left the room. She spent less than 45 seconds with me, and she did not read any letters or records from my previous doctors. She made me feel like a drug addict and a low life, despite the fact that I have a diagnosed condition that has required eight surgeries so far.

I have a very severe form of endometriosis, adenomyosis, and adhesion disorder. My adhesions are so bad that they have wrapped my intestines into a very distorted shape. Also my endometriosis has grown through the wall of the bowel, which causes even more severe diarrhea and pain. I have gone to the ends of the earth and back to treat my endometriosis, but as I am growing older, the pain and GI problems are only growing much more worse. In fact, I lost my job last year because I was getting too sick at work from my endometriosis. At the time, the doctor I had was out of town, and I was out of the medications that keep my GI problems at bay.

This new doctor has been extremely judgmental toward me, and unfortunately, I tried to transfer to another doctor but was not allowed to transfer. Because she is located at a community health center, and because I have no insurance, I cannot afford to go to another doctor. I am at a loss at what to do. But I cannot continue on like this. She is treating me like I am not a person deserving of treatment.

It is not a possibility to go to the ER. Unfortunately, I had to go the ER several months ago before I started seeing the good doctor at this community health center. I have a very large cyst on an ovary that was causing enormous pain, and during the second visit, I was quickly labeled a drug seeker even though I was there because I was in severe pain.

Does anyone have any ideas on what I can do to get this doctor to work with me until I can figure out another doctor to go to? She has clearly stated that she will not prescribe me any pain medication, which hurts greatly because I have NEVER abused them. She also has stated she will not prescribe my diarrhea medicine. It really feels like she is out to get me. I have dealt with a lot of doctors in my life, but she is by far the worst I have ever encountered.

I cannot continue on like this. I am just too miserable. She has made me feel like I do not matter at all. I know that doctors are now reluctant to prescribe pain meds, but I do not need a large quantity. Earlier today, I wrote her two letters, attempting to explain my situation. I have a feeling, however, that she simply threw it aside without reading it. I have never had a doctor treat me with such low respect.

Until I can find another doctor, I need and deserve to be treated. But what do I do? If anyone has ever been in a similar situation, I'd appreciate your feedback on what you did to get treatment. Or if anyone has any wisdom, I'd appreciate any feedback. I am in so much pain now that I feel l feel like stabbing my pelvic region with a knife. Don't worry, I won't actually do it. But, truthfully, it wouldn't hurt any less than I hurt now.

I apologize that my mood is so low. I am just at a very low spot right now, and I hurt like crazy. I feel like I do not matter at times because the doctor won't treat me and the ER won't treat me. When you realize that you don't matter enough to receive medical care, it is a hard emotion to deal with.

Thanks for any feedback, support, or encouraging words. I hate being sick and hurting. Why don't these doctors realize that we just don't want to hurt so bad? We are not addicts just because we hurt!!

I wonder if there is a board I can turn this doctor into if she continues to not treat me. I don't know what to do. I just want to not hurt so bad, and I want to be treated with respect.

Thank you so much, everyone, and I wish you the absolute best.

Jody

Welcome Jody to the CP forum at HW. I'm so sorry for the pain and trouble your having that brought you here and more so because I spent 30 years in the same healthcare field that seems to turn their backs on people suffering these days. There was a time that ER protocol was treat the supposed pain rather than possibly allowing anyone to suffer, unfortunately they have veered from doing so and are more concerned about giving a med to someone who just may not be telling the truth. I never understand this thinking since giving an addict a good dose of morphine will inevitably bring them back soon, give a CPer one to break the cycle of pain you may never see them again!!

I wish we had some magical answers for you, a quick fix but with things being as they are we as CPers have few. It's compounded by the lack of health insurance and relying on a community clinic where all the junkies will go as well. Most of those type places have a policy of No narcotics and now that hydrocodones been classed higher at a CII med its going to be even more difficult to find a community clinic to prescribe.

I don't know where you live but your best hope is to get established at a University or teaching hospital clinic and even this may not be a quick fix. Dr's want time to go over records these days and possibly perform testing of their own. A Dr or clinic who specializes in diseases of women, gyn, those who understand endo and Aden and the complications and pain that can arise from it are going to be much more empathetic to your pain. Old school Dr's are of the belief that these don't cause any great pain but are more uncomfortable. That's what they have learned and women Dr's who have never had more then mild monthly cramping will compare the two.


Coming to HW is a great treatment of sorts in itself as having others understand your pain is therapeutic.

As Q said we have several ladies with your very issues and they will add their experience and advice and hopefully some things that can help you.

Ooooooooooooooh boy. First of all, welcome, and second of all, one of our members has a very similar story/issue (in fact, as I was reading your post, I went back and checked the date to see if it was possibly an old post of hers!)

Is the doctor you are talking about a pain management doc or just a general practitioner? I don't see that stated in your post.

I think it is clear that you need to find a new doc - but it sounds like you'll have a lot of challenges in doing so. Find a pain management doctor. They are specially trained to monitor and prescribe narcotics and other pain meds.

I do think that many times doctors will not prescribe narcotics beyond lortab, norco, vicodin, because they just don't know enough about them and would not be able to help a patient if s/he (the patient) had a bad reaction or something.

I would never recommend that you do anything sketchy, but having been exactly where you are (debilitating "adeno"-like symptoms) I was pretty desperate before I found my pain management doc. I could NOT function and if it were possible I would have spent every moment curled in a fetal position on the floor.

Does your state offer medical or legal marijuana? It works wonders. If I lost all my other pain meds I could sustain on that for quite some time, although the expense of it precludes me from completely replacing my other meds.

about your insurance - have you signed up for a plan through the ACA (obamacare)? It isn't terrific but it's better than nothing ...

HUGE gentle hug for you. We've all been where you're at at some point or another. Please keep visiting this forum, you'll get tons of support.

Guys she has no insurance and is being treated by a Community health clinic and I don't imagine they're more than GPS likely working on a volunteer basis or Not the best Dr in town. We need to try to base our advice and help on knowing those things, makes a big difference.

Hello, my HW friends. Thank you so much for your words of support, encouragement, and support. This situation has left me extremely despondent, and it helps to know that there are people out there that understand. It saddens me though that others have had to go through a similar experience as me.

The female doctor that has been refusing my medication is a major pain. I have never in my life met such a judgmental doctor that is so unwilling to help in any way possible. Also she is very degrading. I have tried to talk to her and written her letters, as well as giving her the letters that my doctors from the National Institutes of Health wrote about my medical condition and how it needs to be treated. (I was in a clinical trial for endometriosis at the NIH for several years, and I can honestly say that I have never encountered such knowledgeable and compassionate doctors before.) However, this doctor has completely ignored me and does not care that I am in severe pain and also experiencing massive diarrhea as a result of endometriosis in my bowel.

This doctor is just a regular family practice doctor. I wonder at times where on earth she went to medical school because she has absolutely no knowledge on many issues. (She is not American.) I agree with you, Quincy, that it was a very violent switch-off to assign me to her after I saw the understanding doctor for a few months before he left. Also, I agree that she is the doctor from he**!! To answer your question, I have been receiving Norco prescriptions for about 20 years, and I only take them for about one week stretches of time each month (when my period begins.) I got massively upset this morning when I realized that my period is scheduled to start today. There is NO way that I can deal with the severe pain that it causes now. (There is an iPhone app that tracks your cycles and lets you know when your period is supposed to begin.)

This doctor also refused to prescribe my Lomotil, which is a very necessary medicine. My endometriosis has invaded my bowel, causing constant severe diarrhea. Imodium is useless in me. I have never dealt with such a difficult and uncaring doctor before. I would love to turn her in to the state board for failing to provide an acceptable standard of care.

This doctor wanted to refer me to pain management, but I cannot afford to see one. Finally, a clinic at a hospital said they'd see me, or at least that is what they told the girl making the referral. But, the girl was very mean and judgmental to me, stating "They will not prescribe you any narcotics at all and instead will prescribe alternate methods of pain control." I explained to her that I take several different medications that are not narcotics to control my pain (like Neurontin), in addition to using a TENS unit. The more I talked to the girl that makes referrals, the more nasty she became. I was absolutely BLOWN away when she remarked, "Don't you realize that the DEA has made Tramadol and Lortab so controlled that patients cannot receive the medications anymore." At first, I didn't know how to reply to that stupid remark, and I finally told her that the DEA would have completely pulled the drugs off the market if they didn't want doctors to prescribe them.

When I later called the pain clinic though, the receptionist and office manager said that they refused to see me. Three years ago I saw them one time, but they were really expensive. My gynecologist at the time offered to take over prescribing the medications, so I clearly told the pain clinic that I was leaving their care to be treated by my gynecologist. I even wrote them a letter stating that fact. But, now, they are claiming that I "broke their contract," even though I told them I was going to another doctor to get the pain medications and I never got double prescriptions for the month I saw them. It makes me so mad.

Last night, I got no sleep from the severe pain and the diarrhea. This morning, I called the Administrator of the health center, and she was just as rude as the doctor. Much like the girl that makes referrals, she was making up various rules. She defended the doctor, and she started spouting off that doctors can no longer prescribe pain medications due to new rules. I hung up with her and then immediately called the DEA. The DEA agent told me that patients do NOT need to see pain management doctors to get prescriptions for pain medications. I then called the Administrator back, and I was extremely insulted when she told me, "I cannot believe you actually called the DEA agent to ask him for a prescription for Lortab." What?!! How ignorant can she be!! In response to her hurtful comment, I said, "Good god, I did not ask him for a prescription. I was just attempting to find out whether your claim that doctors can't prescribe Lortab are true." This administrator BLEW up at me, telling me that I am not worth anything for cussing. I was baffled, thinking back to what I said. I didn't cuss. I asked her to define what she meant, and she said, "You used the Lord's name in vain, and there is no greater sin." Good grief. I worked in a hospital for five years, and patients and nurses (along with the regular public) use the expression "Good God" all of the time as an expression. We don't use it to put the Lord's name down. As you can tell, this discussion with this administrator was going downhill fast.

Finally, I requested another doctor because I told her my diarrhea is severe, as well as my pain. She then transferred me to the front desk, and the receptionist told me I could come in at 3 (in an hour) to see a Nurse Practitioner. Gosh, I hope that she takes the time to listen to me. I really need to get another job, but I can't without severe pain and diarrhea. And I am so scared that this NP will be as bad as the doctor.

And, I have tried to see someone at the closest University hospital, but their pain management team only works with people that have cancer. I can no longer take this pain, and even though I do not want a hysterectomy, I am being forced into having one. The regular GYNs do not want to touch me because my endometriosis is so advanced, so an oncology surgeon at the university hospital will be performing the surgery. She will have to do a large vertical incision because the endometriosis has invaded my ureters.

This country has gone WAY too far in attempting to control the problem of people abusing pain meds. Why don't they realize that people in pain do not abuse them and need them? I used to work with mental health patients one-on-one, and I was often told by them that they are addicts and get their drugs from the street. Maybe they got one prescription from a doctor, but they then turned to the street for their pills for their fix. People with chronic pain DO NOT turn to the street, so why are we being punished?

This may sound totally crazy, but remember that crazy thoughts go through our head when our pain is severe. My pelvis hurts SO bad, and at times, I want to do my own hysterectomy. I used to be in veterinary school and had to leave at the beginning of my senior year after my father died suddenly. Thus, I learned how to do surgeries, and I performed many spays on the shelter dogs. A hysterectomy is actually very easy, and when my pain gets so bad, I think about doing one on myself. Good grief, my surgical instruments are even still in my desk! Don't worry, I would never do it. But it's crazy that I think about it. It's just showing how much I hurt.

And BackToLife, I live in a state that doesn't have medical marijuana, but I fully believe it should be legalized. I live in a state that is very backwards, to say the least.

I do not have much money at all, and I have to pay $25 to see this Nurse Practitioner. I had to take some of my Mom's silver to the pawn shop to get the money to pay her. I just pray to God that she will listen to me and work with me until I can find another doctor.

For the life of me, I will never understand why doctors and administrators have to be so RUDE to people that are suffering from severe pain. When I am able to move on to another doctor, I want to file some type of complaint against them, but I'm not sure yet where to file it.

Thank you again a million fold for your support. If my period begins and I have no pain medicine, the pain will be too great to live with, and that scares me. I wish that I could still see my NIH doctor, but I am not in her clinical trial anymore. So I am stuck with this health center. Ugh.

Best to each and every one of you.
Jody

Hi Jody,
Best of luck with the NP. I've found them to be incredibly compassionate and more on the patients side than most Drs. Of corse I am under cancer care which, as you have found out, is a different ballgame. Why, I really can't say for sure. It's been one of my biggest beefs as my wife is a CP and her care can get so mismanaged. You are right about it maki ing a difference which State you live in. NM is very patient oriented as most of the staff, administers on down are Hispanic so they have friends or family members that are in the same mess as their patients, and there is no bias against us Anglos either.
Good God, what was that lady thinking, blowing up at you for a statement of praise. If you had said OMG would she have been just as rude? Probably, huh? I'm sending lucky thoughts your way.
Also, as I was afraid of, many Drs. And pharmacies are using this new law as a scare tactic. They are just as susceptible to the medias sensationalistic coverage of this change in status as anyone else. Hydrocodone has become, in their eyes at least, as bad as heroin so anybody Rxed for it must be an addict. So many people have no idea of the difference between addiction and dependence, the psychological and genetic components of addiction are so different from the physiological fact of dependence. Once again, best of luck and the least of pain . . . Q

Just a quick update -
Again thank you to everyone for your support!!

The NP refused to help me either, claiming they can only prescribe pain meds for broken bones. She also refused to give me the diarrhea medicine. Much like the others, she made me feel like an addict.

I don't know what I'm going to do. The pain has become too severe to deal with it anymore.

I'm at the very end of my rope & feel like giving up.

Hey, So Tired - not sure if you did this on purpose but the initials of your UN spell "STOP" lol. I vote for that!

Like Dixie, I'm sorry to say it but a hysto may be your best option. I had one (kept both ovaries) and it was not bad. I don't know how you would work that with no insurance :(

Is there anything you can do to get insurance? Do you work? Sign up for a plan through the ACA? Medicaid?

Perhaps there is some way you could obtain some medical marijuana. If you could, I think you would experience relief. And even temporary relief can be a godsend in our condition, right? Huge hugs to you :( I was there, I know how horrible it is and how easy it is for doctors (especially male doctors) to dismiss us.

I'm not trying to turn this in to a debate but it is unbelievable to me that drugs which are responsible for more than 15,000 deaths per year are legal (no matter how hard to obtain), yet a drug (an HERB) with NO KNOWN LETHAL DOSE is 'illegal'. I wish you could get some. I know many people who have moved to different states just so they could legally obtain their pain relief.

Can you find any work from home opportunities? Direct sales (like Scentsy, or some other product like that)? A friend of mine does some work beta testing websites and makes $12-15 an hour. The training is kind of intense but if you're at all technically inclined you can definitely do it.

Good luck!

Post Edited (Backtolife) : 10/18/2014 7:25:15 AM (GMT-6)

Question - is your congress person up for reelection? One of our members reached out with success to his representative. You may want to try that? I'd address the issue of not having health care, and wouldn't talk about specific meds.

Hi Jody,

So sorry to hear what you are going thru. Seems like more and more lately, patients have to deal with not only being sick and in pain, but then it's like we have to "prove" to the doctors that our pain is real. It has become our job to almost do a presentation or put together our case for them, and then they will just sit back and decide whether they feel like helping us that day or not. Seems like years ago, you would go to the doctor and they wanted to help you, they would really work hard to do whatever they could to make you feel better. Of course, there are still some docs out there like that, but pretty rare in pain management!

Unfortunately, it sounds like your best option for long term pain relief is surgery. I know it's not what you want to hear, but seems like even if you had pain meds, the surgery would still be your best bet, simply because the endo continues to just sort of invade everything and cause other problems. Certainly wish I had a better suggestion for you.

I'm meeting with my urogynecologist on Monday to figure out the details for having my uterus removed at the same time I have a colostomy and also have the rectum removed, then a bladder sling at a later date. Lucky for me, I do not have horrible pain, unlike what you are going thru. But I understand chronic pain too, I have had chronic back pain for 16 years, following spinal cord surgeries, and just recently was dx with disc problems in my neck, and still going thru the process to dx my sudden-onset of joint pains. Not trying to put the focus on me, just wanting you to know you are not alone. We may not all have the same situations, but we understand chronic pain and all the huge frustrations and other problems that come with it.

I feel bad for dwelling on the negative so much...so, is there anything you can think of other than meds that might help even just to take the edge off the pain? Even for a little while? Maybe try some relaxation and listen to music, or watch a funny movie, or just put on comfy clothes and curl up on the couch or something. Anything that makes you feel even a little bit better, go for it. I know things must be really tough right now, if there's anything we can do to help, just name it.

The people of this forum are a great bunch. Caring, compassionate, and really smart. I hope you are able to get some relief soon. We'll do our best to help you, and we're always here to listen and offer support.


Gentle hugs,

Sunny.

Backtolife, I don't know what a Congressman could do. The politicians can't make a dr treat a patient or treat them a certain way. Although I guess they might have an influence on the dr telling the patient in a nice way that they won't give them anything for pain. Chronic pain is not viewed or treated by the drs that treat patients with no insurance, little or poor insurance or medicaid the same way it is treated by drs who see patients who have good insurance or can afford to pay them. Since not receiving treatment for chronic pain doesn't cause death or have harmful side effects, it is not viewed as essential.

There are no Federal or State Laws that state a community health center can't prescribe pain meds. As long as a individual dr has a DEA &CDS number they can write for them. The next time you talk to the administrator ask her for a reference number for that law. If she knows enough to quote it to a patient, she should also know where to locate the law. If this is a Federal Qualified Community Health Center, it would have to be a Federal Law. If it is not federal, the law would have to be State Law. The DEA agent you talked to knows how everyone blames the DEA for things that they simpley choose not to do as an individual drs.

about contacting politicians. The politicians are told the same thing the general public is " if someone needs pain meds, their dr can prescribe them." There may be a person here and there that contacts a politicians office and complains about not being able to get pain meds. But, if the majority of Americans who suffer from chronic pain were not able to get their pain meds, the politicians offices would be flooded with phone calls and emails., and they aren't. And when you're dealing with low income patients, because the rates of abuse and diversion is so high, so we're told and because there is additionl government oversight, the new rule in 98% of these facilities/drs office is "do not treat chronic pain with any pain meds." I might also add that these patients also don't have access to other forms of pain management like others do.

SoTiredofPain, unless you can afford to pay a dr out of pocket, I don't believe you're going to be able to receive any treatment for your chronic pain. But, I hope I'm wrong. Even if you just get a pcp and don't plan on asking for anything for pain, when they look you up in the PMP and see that you have been taking pain meds for chronic pain, they won't want to treat you for your other issues. The only other possibility I can think of is if you have pain management dr, a pcp's can see that your pain meds are prescribed by a pain dr and they may accept you as a patient then. It is not unusual for pain drs to not accept patients who don't have insurance. They aren't cheap. The only time some of these pain drs will accept a patient without insurance is if their pcp refers them. Occassionally a pcp will call a pain dr and discuss the patient and the pain dr.

My heart goes out to you. I am so sorry for what you're going though. I wish I could think of something that would help.

woulda gyn do the lupron shots? I'm so sorry. many times I have left drs, ERs, and such in tears, and screaming in the parking lot. It totally amazes me how cruel some "medical professionals" can be. I don't know what happened to DO NO HARM. without insurance you will have trouble getting controlled substances. I don't understand not being willing to write the diarrhea med though...
I go to a clinic owned by the hospital, and my PM is leaving this month bc he is so tired of the rules and regulations not only my the state and feds, but the hospitals own policies. He said he felt as if he couldn't be a good dr anymore.

I would pursue fiding a GYN that will care for you, maybe a payment plan or siliding scale. Maybe thngss I'm sure you've tried before, like Birth Controll, Lupron, or things to stop your period until you can have your surgery or find other options. IF nothing else, the clinic may give you Birth Control to stop your periods you would think?

God bless and good luck.