What to do? - Kids mentioned

Hello everyone!

What a terrific site. I've learned so much already! Here's my story. About 5 years ago, I had an abnormal pap. My gyn said I had dysplasia. So I had the leep procedure. Everything was fine for awhile. Last year, I had another abnormal pap. Again - LEEP procedure. This time it was done under local anesthesia instead of putting me under. Has anyone else had this done? I thought it was torturous. That was in Dec. 06. Well, when I went back in June for another pap - guess what, it's abnormal again.

When I discussed my options w/my gyn's assistant who called to tell me about the results, she mentioned a hysterectomy. So I made an appt to go talk to the dr. In the meantime, I read several articles and talked to my Mom and found this site, so I felt certain that this was the procedure for me. Let me also say that I'm extremely cancer phobic. I lost my wonderful Daddy to lung cancer and watched him suffer for years. My Mom has had breast cancer and kidney cancer. Both were thankfully removed without her having to go through chemo or anything. I'm 32 years old with an 11 year old daughter. I have no desire to have any more children. After 12 years of marriage, my husband and I divorced last June. We are now reconciling - not getting remarried, but we do love each other very much and are "dating", ha!

So, I go in to the dr. appt. He does an exam to see if I would be a good candidate for TVH. Yes, I am. Then proceeds to tell me that he doesn't want to jump into it and would rather me do the LEEP procedure again because of my age and marital status, he's worried that I may get remarried (to someone else) and want more children. It's wierd to say, but I was disappointed in his recommendation. I guess I had already gotten myself prepared to hear the news. After quite a discussion and a lot of convincing that I do not want more children, he had me talk to his asst to schedule the TVH. I felt like he was disappointed in my decision.

I really have no desire to go through that LEEP procedure again. I thought it was horrible to be awake through that. It seemed midevil and torturous. I was quite shocked. Plus the feeling that this dysplasia is going to come back and I'm going to have to keep battling it to eventually have a hysterectomy anyway. That, along with the fear that it could turn to cancer, I'm convinced that this is the route I want to take.

I thought I would post my story here, it always helps to have others opinions, thoughts and advice. I appreciate anyone who wants to respond. Thanks!

Melody

Melody, it sounds like you're set on having the hysterectomy, but i would encourage you to re-consider another leep, since that's an option. I had 2 leeps, both under just local anesthesia. Perhaps you could request a general anesthetic, or at least some sedating drugs, if you elected the leep. that's what i plan to do if i have any more of these procedures/surgeries; i agree it's very difficult to be awake whe they're doing some of these surgeries! i had a hysterectomy when my dysplasia re-occurred because i didnt have enough cervix left for another leep. please keep in mind that a hysterectomy is major surgery with a fairly long recovery, and with more potential risks than a leep. and, having a hysterectomy is not a guarantee that the dysplasia will not re-occur. it is unusual to happen, but it can....it happened to me, and there are others that have had this as well. again, it's unusual, but it's not rare. and that means that even with the hysterectomy, you will need to continue to have your pap smears to be sure that no dysplasia/cancer re-occurs. as i'm sure you know, once you have hpv which causes cervical cancer and dysplasia, you always have the virus; the surgeries remove the abnormal tissues, but the virus remains in your body. i wish you the best in your decision process, and whichever route you decide to take.

Dear Melody,

Perhaps you might benefit from learning a bit more about the causes of cervical cancer before making a final decision. Cervical issues are caused by HPV, human papilloma virus. Actually, HPV is a set of about 100 different viruses, four of which are high risk viruses for dysplasia, which is, as you know, how cervical cancer gets started. Having a hyst (removal of the cervix and uterus) will not stop your having HPV, the thing that has caused your problems in the first place. The hyst would remove the cells that are particularly troublesome for you right now, but it would not remove your HPV (it's a virus, and it's with you now for the rest of your life). My guess is this is why your doctor is being cautious about encouraging you for a hysterectomy. He is aware, and perhaps he has not informed you about this -- that removing your cervix means that dysplasia will not occur on the cervix again, but it can crop up on other parts of your genitalia that are left behind. There are some of us, catwoman000 (above) and I, and some others here, who can tell you that HPV, in the absence of a cervix, can find its way to making dysplasia occur in the cells of other tissues -- whether your vagina, the vulva, the labia. (This is why catwoman000 and I use VAIN readings in our signatures: it tells folks that we have had neoplasia in our vaginal walls.) I had two conizations of my cervix, and then a hyst, when my body could not shake the HPV attacks (if one's immune system is weakened for any reason, HPV tends to go into action). My hyst was last August 06. This past June, I had laser ablation surgery, plus biopsies, because the HPV had caused forms of irregular cells in my vagina.

Perhaps you are unaware that cervical cancer is directly linked to HPV. The surgery does not get rid of HPV; it gets rid of the particular cells that are abnormal at the time of surgery.

I'm sorry to hear about your personal life situation. It's hard to face these problems alone, but if you have an unsupportive spouse, then you will probably be better off on your own. But the stress of divorce (I know whereof I speak on this) might also add to your stresses in recovery from such major surgery.

I hope others will come along who might have more insight into your concerns. It had seemed to me you might not be aware that each cancer associated with our reproductive area can come from different sources. Cervical problems come from HPV, and if you are coming up with signs of it now, your HPV will be with you now. Most of us have learned how to live with this knowledge and learned to look favorably upon our future. I wish you the very best future, whatever decision you come to about your surgery.

I was awake for my LEEP, it was a little awkward, but I'm use to having physical exams. I have one about every month or so. If I wasn't face on fighting with the idea of this surgery, i wouldn't consider it. (27, no kids) If my problems could be fixed with a LEEP, I would do it! A hyst is a major surgery that is by no means a "quick fix". Sounds like your doctor is stearing you in the right direction. You also have to consider what will happen after the surgery. Have you researched HRT? or are you willing to go through surgical medopause? You are only in the mild/moderate catagory, that's why the dr. isn't considering a hyst. It's treatable. Yes, the tests are uncomfortable, but if the dysplasia is your only problem, I would search other avenues. Good luck with your decision.

While I have no expertise on the medical issue, I will say that for the doc to tell you that you are a good candidate for a TVH, with the exception of your personal life, your marital status and the relatively low chance that you will change your mind about giving birth again with a yet-to-be-named future husband, is very unprofessional of him, in my opinion.

You are a grown woman who does not need to be told what to do in your personal life by a medical professional who you are paying for medical advice. You are not a child who needs to be nannied and told, "Are you sure, dear?... you might change your mind..."

All else being equal (which the other posters have suggested it may not be), his medical opinion should stand as his recommendation, regardless of your personal life. You are the one who makes the decision about the impact your decision (and it *is* your decision) it will have on your personal life.

Thank you all for your replies and your support! I felt I needed to hear it from someone who had been there. No, I did not realize what the chances of the dysplasia reoccuring where. I have a call out to my doctor's asst. now to discuss.

Again, thanks to you all for your opinions. I think you've definitely given me the insight that I need to make a better, more educated decision.

Melody

I had the LEEP procedure done back in '98 due to moderate dysplasia. My 6 month follow up pap showed that I still had dysplasia, and it had progressed to severe. Rather than repeat the LEEP, I had a cone biopsy done in '99 under general anesthesia as an outpatient procedure. It was successful and I have not had an abnormal pap since then. Perhaps this is an option you can discuss with your doctor.

I did have a TAH 2 weeks ago due to fibroids. My doctor removed the cervix in addition to the uterus due to my history.

I spoke with my doctor on a few issues yesterday - here's what he had to say.

1. I told him that I didn't realize the risk of the dysplasia reoccuring after the hyster. He said there are different types of HPV and that if it were going to spread to other areas, vaginal wall, etc. that it would've already shown itself there.

2. I did ask about a cone biopsy. He said that was the procedure that was basically done before the LEEP procedure was available. He said there's a 1 in 10 chance of severe hemmoraging and that he does not perform these anymore.

3. Once again, he recommended the LEEP procedure again. So I agreed, we're scheduling my 3rd procedure for Sept.

Thanks again to everyone for the terrific information and support!!!

Melody

Dear Melody,

I'm glad you talked with your doctor and got some resolution to your quandary. The less invasive LEEP procedure makes sense to me. Based on my personal experience, though, I have to disagree with your doctor about the cervical/vaginal invasiveness issue. I had no signs of dysplasia or neoplasia in the vaginal area. My dysplasia, in fact, was in the endocervical canal (the uterine end of the cervix, not the vaginal end). The HPV strains can affect one area but not another until some later time. If you are having cervical issues, you might indeed have the high-risk HPV strains. I did not test positive for them until after my hyst was completed. So while what your doctor indicated to you might be apt from his experience and knowledge, it doesn't really cover all situations, ones like mine and those of some others who post to the boards, IMHO.

What matters most to me in all this, however, is your strength in pursuing the matter so that you can participate in the important decision-making about your treatments. That is such a mark of courage and hope.

Kudos!

And best wishes on the upcoming procedure. I'll keep my thoughts positive for you, that there will be no recurrence.

(((Melody)))

I'm glad to hear that you and your doc have come to some agreement on the treatment that seems best for you at this time. lease keep in mind that you can always go for a second opinion at any time with another doctor--just to get another perspective. Hopefully, though, your pathology report will come back with clean margins and you'll get rid of this dysplasia once and for all!

Vaginal dysplasia is really quite uncommon. Obviously, it can and does occur, but in a very low percentage of women. However, it is important that you continue to have regular follow-ups and that your gyn look specifically at your vaginal walls as well as your cervix. I do disagree with your doc as well--just because it hasn't shown up yet, doesn't mean that it won't. Women can carry the virus around for years before they have an abnormal PAP, so of course they can carry it around for years before they have any vaginal involvement. The tissue of the cervix is much more susceptible to dysplasia than vaginal or vulvar tissue, though. So again, even though it's possible to get it and you should be monitored for it, it isn't very likely to happen.

Good luck! I hope your procedure goes well! Let us know how your pathology report comes back!