Its been a while

I have had a lot going on latley and have been pretty down and out with random viral sickness since december. Right now I am dealing with a UTI and upper respiratory stuff hoping this is my last battle for a while outside of the daily battle of the endometriosis. Sorry it has been this long but not too many seem to be reading latley any how so Im gonna keep this shoret. I have a Gastro appointment today for follow up after my severe virus in December. Hoping that I get the all clear after this one.

Endometriosis awarnes month

Welcome march and Endometriosis awareness month 

Me in pre op for second lap surgery I have a heater blowing air into my gown that's why I look huge. This is the surgery where I had my left tube and ovary taken.

This is the injection that I get once every three months to help control my pain and the growth of the endometriosis. It is called Depot Lupron

A poster I made to raise awareness

another awareness poster

Ne wearing a yellow shirt in recognition of endo. 

I suffer from endometriosis and it has changed my life in many ways. It is a very painful desiese to live with both physically and emotionally. even with treatment I still at times have daily pain from endometriosis and other conditions that go along with it like chronic pelvic pain. It is exhausting to have this condition but those of us who have it fight to get through each day and to accomplish everything that we want in life. There are millions of ladies with endometriosis. Endometriosis is the leading cause of infertility in females yet very few people hear about it until  they are diagnosed. 

so much going on so little time in life

I have been really in a downward place lately. I have been getting a lot of dreadful news. lately. I found out that I am not a candidate for any further treatment on my bladder. I can not have botox in the bladder because it will most liklely cause urinary retention resulting in me needing to catheterize myself for several days. I can not get the Inter Stim implanted because of my cerebral palsy the electrode placement would be extremely difficult for the urologist. My medication was increased to fifty milligrams to see if it will help a bit more. I am hoping that it brings some relief for me.

I also had a pain management appointment for an evaluation for trigger point injections which I was not evaluated for. They pain management ream reviewed my chart and decided that i was not a candidate for the injections either. I was never given an evaluation for anything. they doctors told me that there is nothing they can offer me so it is looking as though I am officially going to be a chronic pain patient until more treatments and trials for my conditions become available.

I have been trying to get new sneakers to put my braces in but that is proving difficult as well. My primary doctor has been trying so hard to get me the information I need for a prescription and also feels that i would be better off following up with my orthopedic who did the surgery on my foot since he knows the general round with orthopedic stuff. I spent yesterday getting in touch with him and discovered he is in Brunswick and he is seeing me in January. I have to have a Letter from my primary doctor stating that I need to see him for my health and if i do not see him it will be detrimental to my health. the reasoning for this is because it is over thirty miles to get there each way and maine care does not like to pay for long millage reimbursement trips if they can get away with it. My life has been a total chaotic mess lately.

It has been a very long November

Hi To those who read It has been a very long month already. I am still waiting for My TENS unit. the doctor was supposed to send a written prescription with the paper work that she signed. I found this out after leaving the PT three messages with no return communication I finally called my doctors office and asked if they could call over to the pt center and find out what was going on because I had called with no return information.
I have also been dealing with alot of grief from the pharmacy who is supposed to order my lupron injections for my endometriosis. I was finally able to find out why the insurance claim has not been going through. I however had to call my insurance company myself to do so. they have been billing insurance for a thirty day supply of lupron when the injections I am getting are for three month use. I called the pharmacy and told them they needed to resend the insurance paperwork for a three month supply however they did not do this Wednesday and they had plenty of time because I had spoken to them and gotten all information by noon Wednesday. I called on Thursday morning which is when i found that nothing had been processed or even sent to my insurance for approval so I called the pharmacy and told them that they needed to speed up the process as my appointment is scheduled for Friday at noon. I also told them that it is ridiculous that it took this long to get my medication as i was due for my injection the first of the month. I will not be using the pharmacy service again I will go through the hassle of getting it from my pharmacy and bringing it with me every time it is needed which wont be for at least a year thank goodness.
On the CP home front I have been working on getting new extra depth shoes for my braces because the ones I have are getting really worn out and uncomfortable however I need things to calm down a little bit before i schedule teh appointment for the face to face consult that is required to get the approval through insurance. i am going to have the doctor at new England Rehab that I see do the prescription as he knows exactly what he wants me to have for a shoe. i think that is about all i have to report right now.

no pt today

I was supposed to have pt today but my tens unit did not come in so its a no go until it arrives. I am hoping it is soon since right now this is one of few options left for me according to pain management as you will see in my previous post. I have never been treated so bad as I was with pain management. i am hitting into a major depression right now because of how he treated me. he made me feel like nothing I said mattered and that I was just saying things to try and get attention. He did not believe me. None of his other colleagues are willing to help me either they say that the injections I was supposed to be evaluated for are not an option even though the doctors that were qualified to do injections never saw me they pushed me down the line and left me with Dr full of u know what. thankfully I have a Primary care doctor who will help me and will fight for me. I really need her for the next few weeks or shall I say months as my GYN will be on leave soon. Personally she should already be taking it easy in my book and enjoying her last few days before a lil one enters the world. I am so happy for her I can not wait until February so I can see lil one. We do not know what she is having yet but she deserves it she is a wonderful person and takes the up most and greatest of care of me./ I can never thank her enough for all that she has been through with me.
We had a transportation change over here in Maine which has not gone very smoothly and i have really been struggling with it and we were talking about it and My GYN told me that every time she hears about the problems with it on the news she instantly thinks of me. I do not cry easily but nearly did when she said that. It means so much when A medical provider takes in every aspect of my confused and crazy life. So many just fail to see how transportation issues affect me and hey do not understand they choose to get angry and frustrated. I have been told so many times if I was more than fifteen minutes late not to go to the appointment but my GYN does not turn me away. I do not know where i would be without her and no words are ever going to be enough to thank her.

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 

response To amy on her comment On my pt post

I am really struggling with it however I have two very supportive doctors my GYN and my primary care provider really keep tabs on me and are an awesome support team i also have my mom who knows how afraid I am of having a stroke now that my dad had his last June. He has made great strides since having his but I am deathly afraid of having one with having the cp and all already it would make things a million times harder.
Also thank you for the support you are giving me it means alot and I really need it do stick with this goal. I am struggling as I just increased my time on the bike to 20 minutes. It feels like it takes an hour especially with the back pain I am having which is in turn triggering the pelvic pain. I am awaiting a call from pain management to see if there is a better path they can put me on for managing my pain so I can continue to regain my quality of life. My legs have been bothering me alot since starting but its just another thing to push through.
I have also been keeping a work out journal that I will begin sharing here soon. I need to type it out so it may take a bit but i am going to share because it is another tool that is keeping me going and I want to be able to look back on it in the long term. this blog was originally for my cp journey but it has became a very good venting and motivational tool for me and I am so grateful for the support i get from my readers. I need to track down the e mail with the link to ems blog again I have not been able to find it recently i know I saved it though I hope she is doing well  hoping to post a picture at teh begining of each month also starting in November but we shall see how well that one goes lol