My name is Karen Carter, I am a 43 yr. old homemaker, wife and mother of 3 teenage sons. My story has only begun within the last 2 years, much to my disbelief I haven't had to endure most of what some of us had to endure here on this site! I found myself having trouble only by way of having my regular female yearly checkup with a new gynecologist back in February of 1999. This doctor I met is located here in Woodbridge, VA, and from my first impression, he took his time with me and I felt so at ease and comfortable with him and his staff.
During that exam, I was told my pelvic area was quite enlarged and tender. I did know that I had a tender pelvic region, but my primary reason for this check up was just as a well woman check up, with a mammogram for the first time. I was very at ease at the hands of this doctor. During examination he thought I might possibly have fibroids. I had heard of them because my maternal Grandmother had fibroids and had a full hysterectomy back some years ago, with though problems further down the road. My own Mother had Breast Cancer back in 1975, with a full radical mastectomy, no chemo or radiation, and has been cancer free since then, and is now age 70. Thank the lord for that !!
Back to my story, once he decided he wanted to rule out the fibroids we both agreed on an ultrasound and possibly a diagnostic laprascopic surgery to rule out anything more serious. I had no qualms whatsoever about this, remember I thought I was in "god's hands" almost !! I went for the ultrasound ..nothing much showed up, other than an enlarged uterus and possibly a prolapsed uterus. Following that sonogram, I returned for another visit to go over the results of the sonogram and the results of my pap smear. The sonogram did show a prolapsed uterus, suggestive of adenomyosis, and an enlarged uterus. My pap showed signs of pre-cancer.
We discussed in detail my options, one being a partial hysterectomy...of course! (so what else is new?) We opted for a vaginal hysterectomy, removal of the uterus and cervix only. Which was performed without a hitch. Also on the diagnostic lap, it stated I had had "NO" adhesions. I only saw this report within the last month (3/01) So that was new information for me. I didn't know what adhesions were prior to any surgeries or after any surgeries for that matter. So hearing that word was NOT comforting to say the least.
My vaginal hysterectomy took place on April 13, 1999, without a hitch. That's when all my trouble started though. About one week after surgery I started having problems with urination, couldn't stop going, it would hurt and burn, the doctor told me I had an infection and put me on antibiotics. The antibiotics helped somewhat, but I was still in major pain from the surgery. The doctor refused to treat with anymore pain meds, as he figured my post-op pain should have subsided within a week anyhow.
After the infection subsided, in May of 1999, I started having problems with vomitting, intermittment diarrhea and nausea. I was continually sick to my stomach. I went to my PCP, and he sent me to an internist. This internist admitted me back to the hospital under the assumption that I might have a possible partial obstruction (again, I didn't know this until I saw my medical records only early this year (2001).) Nothing was ever mentioned on the way of an obstruction. They tested me in the hospital for a colonoscopy and an EGD. All they found was what they said could be IBS. Sound familiar? The report also states I had internal hemorroids, another unknown medical mystery to me at that time. Until I received all my medical records earlier this year (March 2001). I was put on Bentyl and Metamucil, Pepcid, and was told to watch my diet. The flare ups continued with nausea, vomitting, etc. To no avail, and no one's help. I also started having severe migraines, that I had never experienced before my hysterectomy. I was seen by a neurologist, who ruled out everything possible. Finally they also subsided.
I returned to my PCP, with the same symptoms. He suggested I find a new GYN, so Feb of 2000, I finally found a group of ob/gyn's...whom I find to be great and still agree with most of the care they have treated me with. Another well woman check up, and my pelvic pain had continued to remain the same and get worse or the following months. The vomitting and nausea never subsided. They did another sonogram, and by June, I was so sick that I could barely eat. I was continually going to the ER for help, no one could ever find anything wrong with me. In June of 2000, the gyn and I discussed the possibility of another diagnostic lap, with the possibility of having my ovaries and tubes removed if that were necessary when they did the surgery. So it was set up for mid July. In the mean time I was so sick for so long, that finally on July 2nd in the evening, I could no longer eat or keep food down. I was admitted emergently to the hospital and kept on IV fluids overnight, until surgery was scheduled the next afternoon. I was kept on an IV Morphine pump the entire stay. My surgery was uneventful, except when I finally was woken up from surgery, I was told that my tubes and ovaries had "adhered" to my pelvic cavity. I had no idea what they meant. I had massive adhesions, particulary around the bladder. The adhesions were so bad, that the surgeon couldn't possible lyse all my adhesions. He said he did so with great difficulty, due to the severity of the adhesions. This was the first time I have heard the word "adhesions", no one had ever discussed the possibility of adhesions prior to this with me before.
>From July 2000-October 2000, I was virtually without pain or sickness. Then
it started once again. The pain started to return the nausea came back, and
the vomitting came back full force. The same pelvic pain returned. If anyone
touched my pelvic area, I would almost jump off the bed. I was now convinced
that I had adhesions, and now they had returned. I am sure this had been my
problem from the hysterectomy I had performed on April 13, 1999. So, now I
had been adhesion free for barely 4 months.
The pain was almost 10 times worse this go round. I couldn't convince any surgeon to operate on me or believe the kind of pain I was in. My Gyn. referred me to a surgeon in November, who performed another colonoscopy, only showing internal hemorroids again. No bowel obstruction. He put me on one 2 week supply of Oxycontin, and refused to treat me any further for my pain. He even stated on his report that she may opt to have surgery, but NOT by ME. It is clearly stated in his report. I was then sent to a pain clinic in Washington D. C., I didn't care for this person, and opted not to return to see her after my first visit to her.
I went back in tears to my GYN, he was asking me if I was depressed, did I need to see a psychiatrist, etc. I already see a psychiatrist, just for my own well being. No one ever pushed me into seeing my psychiatrist. Anyhow, then he sent me to another surgeon, whom I saw. This surgeon was reluctant at first to do surgery, then he agreed that he would do a diagnostic surgery, but first wanted to speak to my GYN, and see what could be worked out prior to my surgery. Well, once again I was shut down by both doctor's. No one felt they wanted to operate on me or thought I had any "real problem". I went to see my PCP, because by then I was in despair and thought at least he would help me. He listened while I talked, he gave me a script for Oxycontin also. But didn't know what to really do for me as far as my pelvic pain was concerned. He wanted me to see yet another Internist !! (I said NO MORE) I knew my body and I knew that adhesions were once again plaguing my body. After being given this script for Oxycontin and going to the Pharmacy to fill it, that's when I had the shock of a lifetime. I have been using the same pharmacy for two years, and filling all my prescriptions there. This new pharmacist (or a substitute) called my PCP, and told him that I had altered my script for Oxycontin, and checking off TWO refills. Well, first of all I know how things work, and I know that Oxycontin is a controlled substance and you are not allowed to get refills on those types of drugs without a new refill from my doctor. That was where the trouble began, and my PCP dropped me as his patient. So, now I was dropped from all these doctor's and my PCP accusing me of altering his prescription, no one believing my adhesion pain.
To top it off, I got a call from a Detective quizzing me on the Oxycontin drug (after all the hoopla) on the news about kids selling this drug for money and etc. So, of course, everyone is going to look at what they think is a drug seeker. I am not quite a drug seeker, but looking for the proper drugs to treat my ongoing ARD. I had been in the ER after this icident and my PCP told them in the ER not to give me any narcotics, and that he was dropping me as a patient. How convenient is that? Here I was in agony, and he has the gall to tell the ER personnel not to give me any pain meds. Well I know now that the Joint Commissions new rules, won't allow the ER people to deny you pain meds. As the next time I went to the ER I went armed with all the information I had about the new laws, and I was treated very, very fairly. They kept asking what pain level I was at, and they brought me shots of morphine every 15 mintues for the first hour I was in the ER, and even sent me home on the proper medication.
While all this was happening, I found this wonderful site "IAS", and found the wonderful doctor's of Scranton. Dr. Redan and Dr. Gerhart. I don't remember how I came upon this site, but I am so grateful and thankful. I had my surgery with Dr. Gerhart and Dr. Redan on March 22, 2001. So I am now 2 weeks post-op and am doing pretty good. My only complaint now is the vomitting has just returned as of today. Once again, I am baffled. But all in all, my epxerience with this site has been nothing short of wonderful. I would do this surgery all over again if the need arises.
The treatment I had prior to this was what I call very unethical, and if I had it my way, these other doctor's (not my previous GYN) who did the 2nd surgery...they would all be going to court if I had my say in it. The treatment I have had in the past has been nothing short of disgusting. How embarassing it was to have a Police Detective call me and quiz me on altering a prescription drug. When I told him my story about ARD, and having sugery, he no longer wanted any further information from me, but just the thought of him calling me, how degrading.!!
What is this medical profession coming too? I didn't mind paying money up front for my surgery in Scranton, but when is the Insurance companies going to pay the doctor's what is reasonable and customary in order for us middle class and low class income families to survive in this world. I couldn't afford to have this surgery even twice a year if I had to pay out of pocket each time. Is it fair that those that can't afford to pay for the proper medical treatment have to suffer, because the insurance companies have a monopoly on all of us?
I want to tell my story to others on National TV, so that they too, don't have to suffer as I have suffered. Thank heaven I am one of the lucky ones that hasn't suffered, but two years and four surgeries. Please listen to your body when it cleary is in pain and doesn't act right, and don't let any doctor dictate to you what you and you alone should or shouldn't do to your body. If I had to do it again, I would never have opted for a hysterectomy !!
Thanks for listening! I look forward to hearing from you.
Sincerely,
Karen Carter Woodbridge, VA
Karen Carter