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Unread 01-26-2001, 06:35 PM
Questions and more questions

This may get a little long so I can explain my history, so bear with me please.

I had had abnormal pap smears for 4 years and finally switched docs to someone who would do more than just watch and see. New doc did colposcopy with biopsies. Biopsies were unconclusive(original pap smears were ASCUS). Doc did cone biopsy Dec 1999(removed inner 2/3 of my cervix. That also was inconclusive. I have had paps every three months and just graduated to every six months. Doc has told me all paps since cone biopsy were"normal"

Monday at my annual exam, he would not renew by birth control (Depo Shot) because of a link with blood clots, which i have a hystery of. He discussed subal ligation, and said"I haven't been able to get a good sample of the inside of you cervix since the cone biopsy and during the tubal while you are under general anesthesia I could dilate the cervix and get a good sample." I took this to mean he had at least been able to get some kind of sample from the inside. Today I talked with the nurse because I am wondering what will happen next year when he needs a good sample. She told me my paps have been "limited by a lack of endocervical cells" WHich means doc has not been able to get a sample at all from inside cervix so we are back to not really knowing what is there(It was determined the ASCUS is caused by HPV which never goes away)

SO after all that, here is my question...would it be better to have a hyster? It would kill 2 birds with one stone: it would take care of the birth control issue(I have no other options and don't want any more children.) and relieve my constant worrying that there is cancer hiding inside my cervix that the doc can't get to.

My other questions are about the hyster itself. I am worried about losing the ability to orgasm. I am worried about recovery and time lost from work, I am worried about post op pain, etc, etc, etc.

If someone one could give me some insight on this, I would gratly appreciate it. Doc is going to call me when this pap comes back and I guess we will make a decision then. I am leaning towards asking for a hyster just to have some peace of mind about the cancer. There is a heavy family history of cervical and uterine cancer in my family.

hope someone can help me. SOrry so long.

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Unread 01-26-2001, 07:10 PM
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My first concern would be my family history. I am taking for granted that you have discussed this with the doctor already. If you do not have peace of mind, then you will never be able to live with yourself. Another concern would be your pap that you are waiting for. Make sure that you speak to your doc about this in detail. Have you discussed your fears with him and your opinion that you don't want to have any more children?
Dear I can't tell you what to do, but I think it is pretty obvious that you need to discuss a hyst with your doc. You will never know until you do and this will always be on your mind. Most of the ladies return to work in about 8 wks, but a lot depends on what your job entails. Everyone heals differently.
Please know that we are all here for you. I wish you the best and welcome you to email and/or post any questions that you may have. Take care and remember...this is your body so the decision has to be YOURS!
Unread 01-26-2001, 10:50 PM
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I, too, would be concerned about the history of cancer in the family. I would also be concerned about what exactly you've been told about getting reliable testing; if they're saying the tests aren't reliable, that's very bad! If you get the tubal ligation but then end up with cancer, they're just going to have to open you up again and do a hysterectomy anyway, and by that point your life will be at risk. Prior to this summer, I would have been the last person in the world to be recommending a hysterectomy to anyone - but having had endometrial cancer (and no choice about the hysterectomy), trust me, you don't want to go through that.

I can't really speak to your questions about the hysterectomy itself, because my recovery, etc. were complicated by having to have pelvic radiation. You might try posting on some of the other forums, if you haven't, and also browsing through the archives. You can do a search (see the globe-and-magnifying glass symbol at the top of the page), maybe searching by sex or orgasm, and see what you come up with. I THINK each forum has it's own separate search - not sure though.

Normally I wouldn't take a stand if someone asked a question like you've asked - but the combination of family history of cancer, wanting permanent birth control anyway, and apparently unrealiabe tests for cervical cancer would all make me lean strongly toward the hysterectomy. But you should certainly try to get answers to your concerns so that you can feel like you're doing the right thing.

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Unread 01-27-2001, 06:44 PM
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Thanks everyone for your insite. Since posting I have had an appointment with the doc to discuss this further. Here is where I am at:
1. Doc can't get a endocervical sample because he cannot find my cervical canal. He said because he removed 2/3 of my cervic during the cone biopsy my canal has shifted down, sort of like what happens with a retroverted or tipped uterus.
2. Doc doesn't want to do hyster because "I am too young"(36) and because he isn't sure if insurance will approve it.
My current options are:
1. On day of surgery, doc will do "search and find" for my cervical canal first. If he finds it and can get a sample, he will proceed with the tubal. If he can't find the canal or can't dilate it because of scar tissue he would either continue with the tubal, get approval from my insurance and then do the hyster in 2-3 monthsor not do the tubal and get the approval he needs.
2. Attempt the dialtion, get the sample, do the tubal and then next year if he can't find the canal again, get approval and do the hyster then(1 year from now.)

Either way I am looking at 2 surgeries with general anesthesia within a year frrm now.

I have composed a list of questons for him, including if he could get approval from my insurance now, so that if the dialation and sampling is not successfull, he could do the hyster right then, that way I would not have to have general anesthesia twice.

I am afraid to have general anesthesia, as well as being afraid of cancer hiding somewhere he can't see. I discussed both of these issues with him and he does understand how I feel. I am afraid of the general because in 12/99 I had general for the cone biopsy and woke up sick and feeling terrible, and being a nurse, I know all the little (and big) risks associated with general anesthesia.

At this point I am resolved to the fact that I will have at least a tubal on 2/27 with the prospect of a hyster in 3-12 months later.

Unread 01-27-2001, 11:32 PM
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I should probably keep my mouth shut; you're a nurse and know more than me. But this doctor's approach seems a little bizarre to me.
1. If he can't find the cervix now, what makes him think he'll be able to find it next year? He can't be cutting you open every year to get a pap smear! Why would it be more viewable a year from now?
2. And insurance doesn't pay for a tubal ligation, does it? So if you're paying out-of-pocket for that, why not pay for the hysterectomy instead, if necessary, IF insurance doesn't cover it? I'm totally confused.
3. Surely you or your doctor can find out beforehand if insurance would cover the histerectomy or not! I would think that inability to view the cervix, in a person with a family history of cancer, would perhaps be a good argument for saying it's medically necessary.
4. Personally, this inability to get a cervical sample seems a little worrying to me. I had a tipped uterus, and was able to have pap smears and an endometrial biopsy done - it just took a little longer for the doc to maneuver around. Although I have heard of this problem, I would wonder if the skill of the doctor is a factor.
5. I entirely agree with you about the problem of two operations. I mean, not only does it mean general anesthetic and the associated risks, but just the recovery time from two separate surgeries. To me, it sounds like this doctor is being awfully cavalier about this.
6. Based on all of this, personally, I would get a second opinion! Maybe a different doctor would find a way to get the sample he/she needs, and if not, maybe they would be more proactive about checking out the insurance situation.

I hope I'm not out of line with all these suggestions, and maybe I'm missing something here. But you did ask for advice, so this is mine!
Unread 01-28-2001, 09:25 AM
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Hi Kim,

How frustrating for you {{hugs}}. I think I would also contact my insurance company or if you have a human resources person who handles it, see if they can find out the allowable diagnosis for hysterectomies. It's been a while since I was in billing but unless things have changed dramatically, a significant family history of cancer is usually one of the "allowable" diagnosis. Add to that your own situation, you might very well already meet the criteria. I know alot of surgeons are hesitant to do a hyst on younger women due to the hormone issue. I'm also in that age group (38) however I had no choice in the matter.

I don't know, the inability to get a good sample worries me also. A second opinion might indeed be a good idea. Whatever you decide, I hope you'll be able to get the care you need.

Take care and keep us posted,
Unread 01-28-2001, 04:38 PM
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Thanks for your replies.

I did contact insurance before i understood the whole problem with the cervix. At the time I told my inusrance that doc said he could not get a GOOD sample. Now that I know he cannot get ANY sample, I am going to call them back on Monday. Talk about pain.When I talked to them the first time, the woman thought it sounded allowable. Also, during this last pap smear doc was looking around a little aggressivly and scratched the walls of my vagina! I wasn't aware of this until hubby and I had sex a few days later and really scratched things.

I am not concerned with the skill of my doc. I trust him and respect his opinion. He did tell me this is unusual but in past cases like this once he locates the canal it "usually stays visible"

After talking with a few people I have decided to call the insurance and see where they stand and then present that to my doc. If insurance will pay than I will do the hyster to put my mind at ease. Everyday I think "Do i have cancer today?" it is driving me crazy. I already take an antidepressant, have for years and have been told I should not stop it(chemical imbalance)I certainly don't need valium on top of it!

Terry: I never gave it any thought that insurance wouldn't pay for the tubal! Guess I will check that out as well.

I will keep you all posted
[Edited by KimLPN on 01-28-2001]
Unread 01-29-2001, 08:52 AM
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Living in fear and wonder every day is NOT living at all!! I think that contacting the ins co is #1 on the "to do list." If they will cover even a portion of the hyst, I would go for that procedure. I just can't see going through this whole ordeal everytime you need a pap done! Not only is this a lot on your physically, but mentally as well! Please let us know how things work out!
Unread 01-29-2001, 09:53 AM
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I talked with a nurse at the insurance company. Her job is to determine if a procedure meets their criteria for being allowable. I covered the whole story for her from the abnormal paps to the biopsies to the cone biopsy to the inability to obtain endocervical cells. I explained to her that i don't want to have 2 surgeries or even the possibility of 2 surgeries. I told her of the family history and the constant worrying I have been going through.

She didin't put it into her computer but felt in her opinion it would be appropriate to do the hysterctomy instead of a tubal and then a hyster.

I have a call into the Dr as we speak. I am going to tell him how I feel about the situation and that I have spoken to my insurance and gotten tentatvie approval. Hopefully he will go along with this. Insurance did not say I needed a second opinion but if doc wants me to get one I will.

Keep your fingers crossed that there soon will be an end to this worrying.

[Edited by KimLPN on 01-29-2001]
Unread 01-29-2001, 10:28 AM
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So glad that the ins co RN seems to understand! I wish you the very best!! Please keep us posted!

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