New to this...LEEP in the future

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New to this...LEEP in the future

by RedSoxFan on Fri May 22, 2009 12:00 AM

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Hi, 

I've read many of the posts and have found some that seem to apply to me but of course wanted my own questions answered!  :-) 

I have had normal paps for years.  I did have a couple abnormal ones 15 years ago and had a colposcopy and nothing turned up.  Now I have "stage 2 or 3" dysplasia and my doctor is recomending a leep.  I was perfectly willing to go with his thought...I place a lot of faith in doctors, it's hard for me to question them.  Then I found this site and it has opened up a zillion new things for me.  I plan to request my records this Tues before scheduling the leep.  Specifically what do I request?  The December abnormal lab, the retest in April and the colposcopy findings.  He didn't say anything about quadrants or where it was.  Of course, I didn't know to ask.  He did say he rec'd the leep because it is one where the findings can be sent to a lab to make sure we got it all.  From reading here I take that to mean margins are clear.  But is dysplasia like other cancer type things where there may be rogue cells or armies of rogue calls on their way to my rectum, vagina, etc? 

I am 44 and have two young children.  Why wouldn't I just get a hysterectomy and be done with it?  Assuming it's early and it can all be gotten out of me?  I know that sounds alarmist but why not? 

What should I do at a minumum I guess after I get the lab results? I don't know what many of the acronyms are on here either so I'm not sure what to ask. 

RE: New to this...LEEP in the future

by herenow on Fri May 22, 2009 12:00 AM

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Please don't be afraid to question your doctor. He is not god; he's just a doctor. I think the biggest reason women's healthcare is so poor is because women are encouraged to passively trust their doctors' judgment. Unfortunately, too many of them have the "M.Deity Complex." Your doctor should be educating you about this, before recommending anything. It's a requirement, not a courtesy! 

I think you should consider another doctor who follows regulations by educating his or her patients. I'll give you some links to help you, but I'm going to tell you what I always tell women. If I had been educating about my condition and all of my options, I would never have let my first ex-doctor bully into the surgery the doctor preferred, rather than what was best for me.

1. Look at the lab report, It will tell you exactly what you have.

2. Make your doctor gives you a full description of what you have, where it's located, how many cervical quadrants are involved, (Think of the cervix divided into fourths.) if it's in the endocervical canal, and if dysplasia in the endocervical glands. Make the doctor draw you a picture if you're having difficulty understanding the technical terms. But this will determine if you need surgery, and if so, which option would be best.

3. Get a full discussion of all your treatment options - cryosurgery, laser, LEEP, and cold knife cone biopsy. Once more, this is a requirement, and I'm alarmed by the number of doctors who don't follow regulations.

4. After the doctor recommends surgerical option, ask how experienced he or she is with it, how many he or she does per year, how often the doctor does the other surgical options, and if the doctor has ever referred a patient to a different doctor to do a surgery he or she is not experienced enough to do. This will help you decide if your doctor is doing what is best for you, rather than just trying to pay off the equipment by doing only one type of surgery for every single case.

I'm first going to give you links to help you understand what you have. On some of the websites, you just have to click on the various links to maneuver around for information.

This is an older site, but the information is so concise, I like it.

http://www.mjbovo.com/Women/DysplasiaRx.htm

This is one of the few doctors who wants his patients to be educated. I truly wish all doctors followed his example.

http://www.gynalternatives.com/default.htm

This will explain HPV.

http://www.merckmedicus.com/pp/us/hcp/diseasemodules/hpvd/na

Right now, there is a lot you can do to boost your immune system so that your body's immune system will be strong, again. Whether a woman chooses alternative medicine or a combination of both of sets up alternative as Plan and traditional surgery as Plan B, the most important part is that your decision are informed.

I'll give you links with some information.

Tany01 and Chemiszt24 used alternative medicine to clear up dysplasia.

http://www.cancercompass.com/message-board/message/all,25090

Here is the homeopathy thread. Tumor gives excellent information, which includes the Green Drink. I enjoy it, daily.

http://www.cancercompass.com/message-board/message/all,24002

Trehouse is a cancer survivor and has excellent information for people.

http://motherearthtreasurechest.blogspot.com/search/label/ab

There is also the cervical_dysplasia group onYahoo. The woman who set up the group worked with a naturopathic doctor she found, after she read about Dr. Tori Hudson's work.

RE: New to this...LEEP in the future

by RedSoxFan on Mon May 25, 2009 12:00 AM

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Wow!!

Thank you so much for the information. I have gone to the first two links, now on the others.  My battery is dying! :-)

I am calling tomorrow and asking for my records. And then I will either call another doctor and get a second opinion or ask to have a consultation with this doctor.  I don't think he's "wrong" or pushing me, I just didn't have a clue what to ask him. At least I'm more informed.  

Can I ask since I see you post here alot, what has your experience been?  It seems you have  had several not good doctors.  I wish I lived near the one in the link! 

RE: New to this...LEEP in the future

by herenow on Wed May 27, 2009 12:00 AM

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Regardless of whether or not you know which questions to ask, your doctor is required, per regulations, to fully educate you, before doing any kind of surgery to you. This is why I think you should get a different doctor.

I am driven to post because I have made it my mission to encourage women to educate themselves before they agree to anything. Foremost, to make sure they actually need surgery. Last but not least, if women do need surgery, I want to make sure women choose the appropriate surgery. At the very least, it will save the quality of their lives. At the most, it will save those lives.

I'll tell you my awful story.

Doctor #1: She looked at my cervix, she knew I had LGSIL with focal HGSIL (CIN II) in less than two quadrants, no dysplasia in the endocervical canal or endocervical glands. She knew I qualified for anything, including watch-and-wait, but she said I needed to schedule a LEEP within two weeks. I asked about the lab report; she was offended. I asked for a further explanation of what I had; she got me off the phone because she was going on vacation. I asked about my options; she refused to discuss them. She said LEEP was cost effective and quick, and then used scare tactics to bully me into it. Rather than explain what LEEP was, she had the front office send me a brochure. When I saw how invasive it was, I said I wanted it done under general anesthesia. She said it would take more time and I'd have to pay for an anesthesiologist. I schechuled it in outpatient, anyway. The day before the LEEP, her assistant let it slip she was planning to do a cone biopsy without tell me and without getting my permission! I demanded to know why, and she refused to answer me. We got into a shouting match, and I dismissed her. Translation: She wanted to keep the insurance company happy and make money, on the side.

Doctor #2: He agreed to do the LEEP in outpatient. Unfortunately, while I was under general anesthesia, he hacked out my cervix in pieces when the loop bent, rather than replace it with a new loop and start from a different direction. In addition, he sutured something, and I still have no idea what it was. Worse still, he didn't tell me what happened. When I wasn't getting better, he pretended nothing was wrong. Even when I ended up in ER because the pain was so terrible, he still refused to communicate with me. His nurse called and said nothing was wrong with me. I ended up in ER a second time, and the doctor still never followed up with me. Translation: He just didn't care about healing his patient and was more interested in covering up because he assumed I would sue him. (Trust me, I wouldn't have.) When I finally got the contents of my file and saw the OR report, I was extremely upset because what happened was even worst than I thought. He basically took out the right side of my cervix, and there are details missing from that report he refuses to talk about. I even had the hospital try to get him to talk so that I have a better idea what I'm trying to heal.

Doctor #3: I found a specialist who is out-of-network. After doing exam, he said the right vaginal side was pulled and irritated, and later on, he also diagnosed me with an inflamed pudendal nerve. He also diagnosed me with bacterial vaginosis, which, due to my symptoms, I more than likely had all along. His office, however, was nervous because they were afraid I would make him stand witness in a lawsuit, against the doctor who botched the LEEP. After reassuring everyone, I decided to keep this doctor because he was so thorough and wanted to make sure I was fully informed, even though he's two hours away. His office also mails me copies of my lab reports.

Doctor #4: I was hoping to have a doctor within my network, who was closer to home and would work in conjuntion with the out-of-network doctor. Unfortunately, when I researched her, I didn't check the clinic. It works in partnership with both the local teaching hospital and the hospital where Doctor #2 is associated. Either she knew the doctor or his clinic director, or she saw he was within her network. But she'd obviously had a conversation with somebody before I arrived. At the appointment, before she had closed the door and without introducing herself, she began shouting at me. She felt my case had been properly managed! My entire appointment was spent with the two of us shouting at each other, and I told the front desk I would not be seen by that doctor, again. She also told me my depleted estrogen level was the reason I hadn't gotten better, without even examining me, first. Even if it were true, I should have been informed of it as a possible complication before the LEEP, and the second ex-doctor should have checked. Translation: She assumed I would sue her colleague and possibly friend, so she was trying to bully and intimidate me. As somebody who works in regulations, it just made me curious, and so I examiend every piece of documentation I had, as I believed if what he did was so bad, other doctors want to protect him, then he needed to be investigated. In the end, I reported the doctor who botched the LEEP to the medical board.

As a footnote, I have chosen to remain with the out-of-network doctor because he is the only one who is actually determined to help me finally get well. The LEEP happened in November 2007.

Since then, I have encountered women whose stories are just as bad as mine. Some are worse, as their doctors knew they more than likely had cancer and chose not to refer them to a GYN/ONC. Now, they have an even more serious problem.

I no longer trust doctors I have not researched, and after Doctor #4, I also check their clinics. Even with my current doctor, I still research everything he tells me because my ability to trust has been so thoroughly destroyed. Fortunately, everything he has told me, so far, has proven true.

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