Do you ever feel that you have the scarlet letter "E" displayed across your chest? I do...especially now, after fighting this wicked disease for most of my life. It seems as though the moment a perspective doctor sees or hears that you have endometriosis, he looks away, so to speak. So many doctors are not educated in the diagnosis or treatment of this disease. The ones who know enough about it to fear it...well, they cut and run...sometimes literally.

I've been told while seeking help/answers for life altering pain to "never mention endometriosis because you need to stick with your "hard evidence" in MRIs and CT scans". I'm told to focus on pain management for my spine/joint/bone on bone documented through testing. I'm told by my Pain Management doctor that "I don't treat pelvic pain but I will help you with your skeletal pain. Pain is pain".

I've been told by a touted specialist MD/JD professor who is leading a team to treat endometriosis @ UMMC (Just last September) that I am not suffering pain from residual endometriosis because I have no uterus or ovaries, therefore no estrogen to feed it. Well even I know that estrogen can be produced within the body post-hysterectomy/salpingo-oophorectomy. I also know that the disease was stage 4 horridly aggressive, consuming my entire abdominal cavity. I know that adhesions have formed over the 20+ years since my surgery. They feel as though they are choking my colon, my bladder, ureter, kidneys. The urologist could not see my bladder with a sonogram due to all of the "junk" (his word). They HAVE to know that I NEED help beyond pain management, which is all that they have offered me. The "specialist" who transferred here from Louisville, KY is supposedly the potential "superhero" for women with endometriosis and pelvic pain. HE called me personally after I contacted his office begging for an appointment @ the new Women's Specialty Clinic he is putting together. I was so encouraged by the conversation we had. I thought "Thank you God for bringing me help, FINALLY".

The Jackson specialist sent me first to his colleague at UT (Memphis) who treats endometriosis. He did a blood panel seeking estrogen levels. He said that our body converts fat cells to estrogen which would "feed" implants not seen during surgery. He sent me downstairs for a vaginal ultrasound. That's just what I needed--an 8 inch probe shoved in a vagina so fragile that toilet tissue tears my flesh--but Yea!--I endured it yet again with primal screams and tears. He said that it appeared as though my bowels were actively moving about. Somehow that indicated I was "fine". He sent me on my way with prescription for Butrans patches until I could see Jackson doctor. I stopped at CVS to get the script filled, only to discover that it cost $500 and change for 1 month. I don't have prescription insurance, so I had to leave without it. A week later my blood tests were back showing no increased levels of estrogen.

I met the Jackson specialist in late September with such hope for help to ease the pain--urinary, pelvic, vaginal, rectal, bowels, etc. WRONG! He practically mocked an possibility of my having residual disease. He said that adhesions are likely the culprit, but would not even DISCUSS taking a look inside or performing lysis (sic) procedure to "free" organs being choked by adhesions. He seemed convinced that my pain is psychological, caused by depression. WTF? How about depression caused by excruciating pain with no hope for half my life? He even refused to concede that I have a med-resistant UTI until the culture returned to prove it. They treated it with Bactrim--which never works for me. He did no further testing...did not even examine me. I was crushed. The Jackson "superhero" of endometriosis treatment suggested I see a psychotherapist and enter pain management. as soon as possible.

I ended up suffering through the winter until I broke down and went to the ER last month. My urine was dark and wreaked of sulfur. My flanks were so painful and tender I literally "yelped" when I moved. I told the doctor I wanted NOTHING for pain, but I needed an IV push of Rocephin. He refused antibiotics because my clean catch was clear. I told him that the infection has gone deeply into my UT and would show in a culture. I was begging him to do the IV push. He lectured me on how it would be malpractice to treat a non-existent infection. He sent me for 0 tests or scans...basically viewed my Scarlet Letter "E" as that "garbage bag" disease we've heard so much about. He was yet another prick doctor who didn't care. I limped away and drove home in tears AGAIN. Within 4 days my husband took me back to the ER at 2 a.m. with the same pain. The culture had revealed E-coli infection (just like I knew) affecting not only my bladder, but my ureter and my kidneys. It was so severe, it was threatening renal failure. The ER doctor would not perform the IV push. He said my FP would have to order IV push every 24 hours for 30 days. My FP is the fucker who has allowed me to suffer needlessly for the 4 years he's "treated" me. He scoffs at my theory of residual endo/adhesions and disregards my pain. I KNEW he wouldn't treat this UTI aggressively through daily IV pushes. I chose to endure the lesser of 2 evils (major doses of oral Levaquin) for 30 days and pray for the best. The ER doctor feared my absorption issues through my tummy pouch, so he insisted I CHEW the Levaquin. Oh, God how nasty this process is...but fear of dialysis is REAL with this infection. My flank pain is has eased considerably and my urine is much clearer. I have 12 more days of antibiotic and I will retest with culture. This should NEVER have been allowed to happen...with me begging my FP...then seeing a urologist who blew me off with a dosage of Macrobid. I TOLD BOTH of them I needed a kick-ass antibiotic to kill this e-coli before it killed me. They would not listen. It's SO fucking obvious that all they see is the Scarlet "E" across my chest. I am damaged goods...Just another psychotic bitch who "thinks" she's suffering from a disease that she no longer has.

Meanwhile, I enrolled in Pain Management back in January. I have found that I am opiate nave (who knew?) so the drug trials thus far have failed to relieve pain. They have caused mind-numbing side effects of night sweat soaks, psychotic "itching" to the point of clawing flesh to bleed. I've tried Methadone, Morphine ER at various dosages and intervals. It caused intense constipation--paralyzing my bowels with life threatening bowel obstruction. I endured months of this because the doctor told me I had to make it work---give it time. Finally in April, he took me off the Morphine. He wanted me on the Fentanyl patch from day one, but I am resistant unless it's a last resort. I was on the patch (wonderful pain relief) in 2005-06 through Baptist Pain Center in TN. However, my body quickly ramped on mcg and the patch would only last through 48 hours before full throttle withdrawal (not pleasant). It became too expensive without prescription coverage, so I weaned off and vowed to never use Fentanyl again. Fast forward to now...IF I could trust my PM doctor (I don't) and IF I could afford it (I can't) I would just surrender to the patch to get some kind of quality back into my so-called life. My pharmacist suggested I try Oxycodone before resorting the big guns of Fentanyl. I conveyed that to my doctor and he agreed to let me try it. I started Oxycodone 15 mg every 6 hours in mid-April. It doesn't stop the pain...It just changes my perception of the pain, making me not give a crap that I'm hurting. It does not last the full 6 hours, so I become nauseous and sickly between doses. He refuses to add/change to 4 hour dosing. He says that he will only prescribe 90 pills per month. He claims that if he increases to 120, the DEA will question him. WHAT? He's a legitimate pain specialist heading the pain center of our regional hospital. Why would the DEA get involved because my body needs 4 hour interval dosing?

I just don't understand ANY OF THIS. Maybe I am too old @ 53. I KNOW I'm old school and I don't apologize for that. My PM doctor is not one that I would have chosen. He is the only pain specialist within an hour's drive, so I'm trying SO hard to make it work. He is not American. He is Egyptian and speaks with a heavy accent. (Please don't dog-pile me, as I am not racist) I speak with a slow Southern drawl, so I am an enigma to him as well. We have a massive failure to communicate. He is moody and hot-headed...sometimes just bat shit crazy in fact. He had told me by my third (monthly) visit that "No, I no remember you. I see many patients. I know you from Adam." FUCK! Do you not glance at my file and at least fake recognition? I don't expect him to be my "bestie" but I expect him to review my chart and call me by my name! Nada...I took him a 5x7 photo at my May appointment. I asked the nurse to attach it to my "paper" file so that he would have a visual prompt. He went NUTS...screaming at me...telling me that I am "manipulative"...telling me twice to "get out and don't come back!" He was irate, lunging onto his feet across his desk towards me so aggressively. I think he was capable of physically attacking me. I've never seen anything like this (unless I was at a family reunion=) Certainly not from a doctor...and I've seen some psycho folks in white coats. He frightened me and I am unable 2 weeks later to close my eyes without reliving his rant. I certainly don't need a photo to remember his face! I begged him to calm down and not to kick me out of his practice with nowhere to go. I'm sure my body now "needs" the opiates after 4 months straight of taking them. How could a doctor do this? My husband suspects he's taking his own drugs, but was equally as irate when he heard how I was treated by this lunatic. I begged the doctor to keep me as his patient and continue the Oxycodone until I can find a better way. He told me that I had wasted 45 minutes of his time (I had not completed 5 sentences. He was ranting that entire time) and he had other patients to see. He printed the script and told me to "make it work" and to ask my FP to increase my Zoloft to 150 for my depression. He basically threw the script at me across his desk, as he angrily brushed past my shoulder as he left the room. No apology...No good-bye...Just "I don't want to see your face or hear your voice for 3 months!" I CANNOT convey to you how hurt and disillusioned I felt as I limped down the hallway and to the front desk. EVERYONE had heard his tirade against me. I was just in a total state of shock unable to cry or react.

I've been in such pain all along, hoping things would improve. I just endured Synvisc One injections in both knees again for bone on bone pain. I'd been to the ER twice to be MISTREATED and now this? I have since processed the whole episode with the PM doctor. He's either using or psychotic based on my 5 encounters, with the last being proof positive.

I need desperately to find another PM doctor. I am ASKING for HELP and information from anyone who lives in my tri-state area. I live in central Mississippi, approximately 1.5 hours from Jackson, MS and 2.5 hours from Memphis, TN. I do not need nor want a doctor who does not "believe in" or does not prescribe pain medication. I have suffered through all modalities of treatments to manage pain for 20+ years. Those treatments include, but are not limited to surgery, Lupron/Depo, Megace, cervical/lumbar injections and nerve blocks, physical therapy multiple times, TENS unit, cortisone injections, Synvisc injections, pelvic floor therapy, cognitive therapy, biofeedback, psychologist (for years) various meds---but I have tried to avoid opiates because I feared addiction. I never understood until the past year (breakthrough in therapy) that if an opiate gives me some relief to exist in a normal life...then it's "ok" if my body becomes dependent on that opiate. That does not make me an addict in the sense of my lifelong perception. I chose to surrender to pain management through medication. My absorption issues are blocking most of the dosage so far, as it is leeching out through my pores. The intensive night sweats exceed anything I experienced through surgically induced menopause. The sweat soaks my body and my hair with a putrid chemical smell. I itch like a dog with mange also, though thankfully those side effects have dissipated since stopping Morphine. My PM doctor has been pissed with me since the beginning because of my financial constraints. He says there are new pain meds out there that could change my life forever IF I could afford them. I can't...WHO CAN afford hundreds if not thousands (yep) per month to control their pain. Hell, I can't even afford the $260 per month for Linzess--a miracle drug for IBS with constipation.

PLEASE, PLEASE, PLEASE ladies...If you know a good doctor in the MS--AR--AL--LA--TN area that you can recommend, I NEED YOUR HELP. I know that I need massive adhesions removed, but I do fear additional surgery. I would certainly consider surgery if I found a surgeon I believed in. Until then, I need a legitimate PM specialist who speaks fluent English and prescribes pain meds, NOT naturalistic or homeopathic methods of pain management. My "chi" is fine. My faith in God is strong. I just need a better life through chemistry. I have surrendered and there's no turning back after being baptized through the fire of opiates. I intend to see this through, but preferably with a better doctor.

Thank you for reading this verbal vomit yet again from me. I know this post is ridiculously long and perhaps not worth your effort to read. I am in a deep dark place feeling so abused by doctors who took an oath to first do no harm. I need your help.

~~Pup