An update on appointments

I had pain management appointment yesterday It was the most horrid appointment i have ever been to. The doctor that I had was cold. He never did an exam or anything. He basically told me that was no further options for my treatment of pain because I had done pt and all other things he would recommend. I wrote him a letter that I will share here However I am editing out his full name and he will be refereed to as DR H

Dear heather,

I need to keep you up to speed on my pain management appointment he said he was sending a note however I doubt it will have full details of what happened. I know how most doctors notes are vague and they say what the doctors or doctor want you to know. I went to my appointment with hope that there were more options for me. I gave a very in depth description of everything that I have tried and all of my treatments thus far.

Dr. H came in and introduced himself and told me he did not understand why I was sent to the pain Center. I explained to him that I had been advised by my OBGYN that trigger point Injections could be beneficial and he told me that he did not do injections and the doctors that did the injections reviewed my chart and did not feel that they would be beneficial. I politely asked how they could decide this without trying anything. I told him that only I could tell if it were going to help and only if it were tried. He basically told me that there was no way that they were being done. I said ok well what is the next step what are my options? He told me he had nothing to offer me. Dr h than proceeded to tell me that they only treated spinal and joint issues which I know is not true because my OBGYN has told me she has sent patients there to DR O for the injections.

Dr. H said that the injections were not used or may not be approved for use in my situation. I know that this is not the case because I have been told by the urologist that I have pelvic floor dysfunction and trigger point injections are often used for that. I came out and told him directly I did not understand why the doctors who do the injections did not see me to explain why I was not a candidate. He then began basically telling me that my OB needs to treat my pelvic pain and Urology needs to treat my urinary pain. I told him that the only other option that the Ob feels that I have is hysterectomy which I do not want because of osteoporosis and the fact that I am a fall risk because of my cerebral palsy. He then asked me why she would have to take my ovary to fix some of the issue. I told him that the ovary produces the female hormone um oh I know that was his response. Mine was um Endometriosis feeds off of estrogen so in order to maybe stop it the ovary needs to be taken. His response Oh you’re talking about the endometriosis. I then told him that Uro had pretty much exhausted all options as well and he said to me that people are most often referred to him after exhausting all options. My response was is that not how it is supposed to be. He said well we can only treat pain two ways and that is medication and Cognitive behavioral therapy.

I told him I had been taught how to do the CBT for my pain and depression through my counselors. He explained to me that it was not the same. I asked him to tell me about the CBT he uses and he told me they had a course or something there that incorporated exercise with the CBT however he didn’t feel that it was an option because of my Cerebral palsy and he did not feel that I could actively participate because of my limitations and the fact that it is in group setting not one to one.

I am lost right now. I feel like I have no options. I am so confused how three of the providers on my medical team can say that these injections would be beneficial and then I am denied the opportunity to try them. I have been in tears since leaving today and I am writing this because I cannot talk about it without crying. I was so hopeful at the possibility of less pain and i honestly feel like this doctor’s goal was literally to put me to the point of having no hope at all. Dr H was very cold. He never even did any form of exam. He never touched me and I do not see how it can be considered a valid evaluation and exam to see what he can offer if he never even checks anything. He only read through my records and told me that I don’t have cystitis because my bladder biopsies were normal.

i told him that I had been told about botox and he told me that the urologist did the injections into the bladder. I have been told by Jon that they do not instill or inject anything into any muscles or into the bladder through a catheter. That is pretty much all I can remember. He told me that there was no need for me to return for my second follow up that was scheduled for November 13th 2013.

I am very confused. I am losing hope. What more options do I have I feel like this was a huge let down and it was one of the last steps to relief. I don’t know what to even try next or ask to try; DR H told me that I was a self referral. Is this because I asked you about the treatment? i had it recommended to me from My OB and she told me to ask you and have you look into it to see if you felt it would be beneficial since you need to do the referral process.

I also want to say thank you for being an active and caring part of my medical team. I am only writing this because I want it on record of what my point of view was and how I was treated. I feel that I should be able to make choices about my medical care not have doctors tell me I cannot have access to a possible treatment for my pain. I am going to ask you flat out are there other options for better pain relief? I know you are not a huge fan of narcotics and neither am I my desire is to not have to take them but that is not looking too promising and I need to be able to be a more active participant in the life I am supposed to be living. Right now I feel like I am just watching it pass me by. It is so hard for me to be interacting with my nephews and niece and they are pretty much the biggest part of my life.

I also recently had someone who I thought was a good friend and support  for me tell me that I was choosing to lay down and die because I have been telling her that I cannot watch her daughter. I got lectured about how i felt so much better when I was active. I told her that I had been trying to get 20 minutes of exercise a day and she said that I was not doing enough to help myself. I am just tired of not being able to do what I want to do . I know being active is important but when you only sleep for four hours at a time it’s not easy.

Thank you for taking the time to read this and please keep it on record. I feel that this doctor’s visit is thus far the worst treatment I have had. I am not putting Mercy down as a facility. Most people I have met show nothing but kindness and compassion but this is just not right.

Jennifer Berry



I saw my primary care doc AKA Heather today and I gave her this. she does not understand how this is happening. I told her that I was not returning to that facility ever again. At least not the pain center. She also told me that I was not a self referral because she refereed me on my OBGYN recommendation  It was horrible and I don't ever want to relive that again. Heather is contacting my urologist to see what some other options might be. I am praying that it is not another surgery I am currently also being treated for a sinus infection which is the main reason I had the appointment with her