Frustration and My Story

From: Deb (dood4bama@bham.rr.com)
Tue Sep 7 12:16:13 2004


Hello...new here. My story is pretty much what you all hear frequently and know all too well. I am in a downward spiral and came here to tell my story and vent as I really have no one else to talk to that will understand. I apologize for the length, but I need to get this out of my system.

I have had right sided abdominal pain for 5+ years now. Around 1993 I had my gall bladder removed via lap (first surgery ever) and was told then that I had an unusual amount of adhesions in the right side of my abdominal cavity. The surgeon asked if I had any prior injuries or severe infections and I had not to my knowledge. We assumed it was possible that the gall baldder inflammation may have been partly to blame and I recovered well from the surgery and went on with life. For a few years I was great.....VERY active..played raquetball, basketball, traveled...had a good life. Around 1998 I began to notice something tuggin and pulling in my right side and pelvic area. At first it was just occasionally annoying. It progressed over a few months to severe pain, nausea, dizziness. I was so sick I didn't know what to do. I ended up in the ER and was admitted.

My gynecologist at the time (since retired...God I loved that man) thought it might be appendicitis since my white count was elevated. All the tests were negative but I did not improve. They sent a surgeon to see me who said I could still have appendicitis and recommended I let him go in and look around. I had a lap and they did remove the appendix. They also did see some mild adhesions also. Did ok for a while and then the pain returned. The stress became unbearable and I began to have continuous vaginal bleeding. I bled for 4 months straight....HEAVY. My GYN did a biopsy of my uterus and said I had signs of some sort of infection. He put me on birth control pills and from that point forward my life has been a total nightmare.

I continued to bleed, even on meds, and ultimately they had to remove the uterus vaginally and left the ovaries. The GYN was concerned about some abnormal cells in the biopsy and advised I have this done. It was not cancer (thank God). 6 months later large cysts began to grow on my ovaries. The right one was larger. Again, I was told that an ultrasound of the ovaries was not conclusive. One of the cysts was "mixed" and they were concerned. I ave in to yet another surgery to remove the right ovary. This was done with the traditional pubic incision. When they got in they found endo on the left ovary and decided to remove it also. I went into total menopause at the age of 34. I began hormone patches 6 months later under the advice of my GYN. They hoped waiting would prevent the reformation of the endometriosis. Those 6 months were pure hell. It took a long time to recover from that surgery. For a while I felt some better but the pain on the right side came back within months. In 2000 I also developed a high pressure in my bile duct and had to have a sphincterotomy via ERCP to relieve the pressure. This seemed to help my upper right pain, but not the lower right. I also developed bleeding gastritis which was treated and improved.

Last year I spent most of my life doubled up on the bathroom floor crying in pain. At work I would escape to my car and hide so that I could cry in private. I tried to pretend I was ok. Doctors kept telling me I was either a hypochondriac or a nutcase. I was told I was "seeking attention subconsciously" among a myriad of other heartbreaking and cruel comments. I was devastated and almost didn't want to live. The upper right pain had also returned so basically my whole right side was a mess. I ended up at a clinic at Brookwood Hospital in Birmingham, Alabama. I saw a doctor there whose name I will not mention. In the beginning I thought I had died and gone to heaven. A doctor who cared!! He advised a lap to look for a hernia he thought I might have (spigelian). He even prayed with me which meant so much. I had prayed myself for SOOOO long for a compassionate doctor like him. He did the surgery and said he did find a spigelian AND an umbilical hernia. He used dual Gore Tex mesh and helical staples to repair both.

This is where everything gets out of control. The surgery was February 2004. In June 2004 I was back in the ER, vomiting, doubled over in pain...certain something had gone wrong. It felt like ropes were pulling my insides into my spine. If I bent over or turned I almost passed out from the pain. I had to stay in a fetal position to get any relief. I had read on the internet that sometimes the dual mesh and tacks can actually increase adhesion formation. When I was admitted (by the surgeon who repaired the hernia) I showed him the articles. Having had ahdesions before I was VERY aware of what they felt like. I don't think he like me questioning the mesh or the staples, but he did read the article with me and my father. He told me he 100% disagreed with it, but agreed to look via lap to make sure there was no infection, etc. He told my dad we would be back in 30-45 minutes. He took me off to surgery.

FOUR HOURS later he emerged and told me father he was shocked at what he saw. EVERY tack had an adhesion and most of the borders of the mesh were covered as well. He did an adhesiolysis on what he could and removed 26 of the 28 tacks. He did not use a barrier, but instead filled my abdomen with ringers lactate. He did not remove the mesh. He apologized the next morning and commented that he understood why I was in so much pain. Then he said "but they will come back and there is nothing that can be done to prevent that". He suggested I start taking oxycontin and I told him I wasn't sure If I wanted to do that.

For the next 2 weeks I felt like a new person. No pain at all. I could bend, turn, walk around. I probably did too much but I was so happy I couldn't help myself. I was praising God nonstop and thanking him for this doctor...even though I had to argue a little to get him to look. We all make mistakes and misjudgements and at least he DID look. Well.......................... today is August 14, 2004. For the past month I have once again been doubled over, unable to bed or turn, unable to eat much, nauseated. I was certain the adhesions were back. I went back to my surgeon (the nice one...uh yeah) and he suddenly began to act very aggravated with me. He chastised me for not wanting to take Oxycontin, told me it was nerve pain and sent me for a nerve block. He suggested a celiac plexus block. I went to the pain doc who disagreed, telling me this would not help the pelvic and flank pain. He instead recommended a L3, L4 and L5 block. Did it..........nothing. I ended up on the phone with the surgeon who again became agitated with me and said I was being "inconsistent". I have no idea what that meant. I started shooting Stadol up my nose to try and control the pain. Depression set in...not only from the pain and the loss of my "life" but also over the way my doctor was now acting. I needed his support...not just professional...but emotional. Chastising me wasnt helping anything. I gave up and drove myself to another ER about a mile from my home. I told the doctor I was just ready to give up. They told me my liver enzymes were 5 times the normal limit and kept me. It appears that on top of the lower right pain I now have something going on with my liver and bile duct again. One again my WHOLE right side hurts.

I went back one last time to see my surgeon this week. It was a disaster. He insists I do not have adhesion pain (?). When I tried to ask about him being wrong before he said "I refuse to continue this conversation". After being in his office crying for 3 hours, I just got up and walked out. So a GI yesterday who wouldnt even check my blood or do an xray. So, I sit here today with bile duct pain, abnormal liver enzymes, excruciating pain in the area of my right bowels and side, and this morning I had a bloody bowel movement and some streaky blood in my vomit. I guess I have gotten myself so upset and taken so much medicine I have gastritis again.

I am at a loss. I am going to have to have another ERCP to check my liver. And I may go ahead and try the celiac block. After that I dont know. I emailed Dr. Redan and he did call and email me. I set up an appointment for the 24th of August. But...........I am scared. What if the surgeon here is right? I dont want another surgery for nothing. He has me doubting everything and I resent that. I know Dr. Redan is highly recommended and I would do ANYTHING for help.

A note to the surgeon in Birmingham (just so I feel better)

This is NOT my fault. Everything that has happened to me was under the ADVICE of a DOCTOR.

I JUST want to have a little happiness in my life like YOU have

You DON'T know what I am going through and you are NOT God

YOU WERE wrong before....why can't I ask questions?? I DO have that right.

That's my story. I don't know what will become of me, but I appreciate the chance to finally get this written down and out of my system. Now I'm gonna go snort some Stadol and hug my heating pad. The weather here is so beautiful today. God how I wish I could enjoy it again. I would even settle for a good meal.

D


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