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Hysterectomy vs Leep Hysterectomy vs Leep

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  #1  
Unread 07-31-2004, 02:38 PM
Hysterectomy vs Leep

I am new to this site and amazed to see all the info and support. I cannot possibly understand the abbrevs (I did catch on to the TVH and TAH), but have a general idea of what each reference.

I have several questions, about what is "normal" after LEEP and whether I should have pressed my gyn for more info or options about doing hysterectomy instead of LEEP (although LEEP already done last week; 7/27).

In terms of background, I have always had normal periods (I think). Like clockwork, no excessive bleeding, heavy cramps during teen years, but not usual in adulthood. Maybe about a year or so ago, my cycle was bleeding for 3 days (one day heavier than other 2), then spotting for a day, then light bleeding another day or two. During the end of the first 3 days, I would have some clotting.

Once this change took place (I had not before experienced clotting or the stop-start cycle), it became the "norm" cycle for me, and I attributed it to age (now 39).

Because of problems w/my prior gyn, I had missed paps for a few years. I had a problem that turned out not to be yeast infection, and had to find new gyn. Problem was vaginal strep, but pap done was abnormal. I then had a colposcopy, cone biopsy, and LEEP.

I was told I had severe dysplasia (never reference as a CIN level) and hpv. I was simply told I needed to have the LEEP - but not given the option of hysterectomy.

As far as I can tell from research, I will continue to be at greater risk for dysplasia (thus, cancer also) due to the hpv. Since this was severe dysplasia (not mild or moderate), should I be concerned that the gyn did not give me the option (I'm a new patient). I like gyn and mentioned this to him when I showed up for the LEEP. He said that there is a low level of recurrence after LEEP (but I've read your posts!!).

He also admitted he has another patient that upon 2nd diagnosis of dysplasia, she insisted on hysterectomy.

I'm just wondering if I am at greater risk of cancern having NOT had the hysterectomy.

Also - watery discharge after LEEP is normal I've read; what about odor? Some research suggests a solution from the local pharmacy; other suggests calling gyn before doing anything. Anyone have experiences w/this (today is Sat so I can't call gyn).

Thanks!
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  #2  
Unread 07-31-2004, 04:29 PM
Hysterectomy vs Leep

Hi TJB522,
I have first hand knowledge about this as I have HPV and also severe dysplasia. The LEEP is a form of treatment for abnormal cells thus removing the dysplasia. There is no cure for the HPV but removal of the bad cells reduces your risk greatly for cervical cancer. My Dr also has done the cold knife cone biopsy where they take a large cone shape out of the cervix in hopes of removing more of the bad cells. The hysterectomy part really isn't a treatment for HPV or dysplasia. If you are having other trouble involving the uterus like your abnormal bleeding, these are the reasons for the hysterectomy. But don't feel like it's your only option because there are several others. Ablation, Removal of fibroids or polyps, among others too numerous to mention.
My hysterectomy is scheduled for Sept 15th 2004 because of severe bleeding.
I personally do not believe you are at a greater risk not having the hysterectomy. Because HPV can come back on the vagina walls as well, remember there is no cure and it is a STD.
As far as the odor after your LEEP I noticed some odor as well. I asked the Dr and she said some smell was normal as they burned through the tissue and then put stuff on it to promote healing.
Huggz and Prayers
Kristi
  #3  
Unread 07-31-2004, 06:57 PM
Hysterectomy vs Leep

to Cancer Concerns!

These are all great questions and clearly you are thinking very proactively about your future health!

There is a certain order to how dypslasia is treated by the medical community. First, you have your abnormal PAP. Depending on the severity of it, then you have your colposcopy with biopsy (if it's mild, then you might only be monitored for a while). Depending on the results from that, you have either a LEEP or cold knife cone biopsy. Once the results from that are in, then the big conversations and decisions are made if it is felt that further treatment is needed.

Aprroximately 80-90% of women with dysplasia who have a LEEP or cone are considered to be cured following the procedure. These are great statistics! And you want to use the procedure that is least invasive to meet your needs. These procedures (LEEP and cone) serve two purposes: 1) to diagnose the level of abnormality; and 2) to treat the abnormality. It is NOT standard practice to jump to a hysterectomy without doing a LEEP or cone first. The reason being that if the pathology report comes back showing cancer, well, you'd rather know about the cancer before having the hysterectomy because some very important life-saving measures will be used during surgery to maximize your chances of living a cancer-free life. If you skip the LEEP and go on to the hysterectomy and that pathology comes back as cancer, well, it could mean and additional surgery, additional procedures, or a lost opportunity to perform the "perfect" surgery for the situation.

Occasionally, the pathology from a LEEP will come back indicating that there are more abnormal cells that were left behind. In that case, then there is discussion about the next step--sometimes a wider cone biopsy, sometimes a hysterectomy. But at least you have all the important information you need to make the best choice.

Try to keep in mind, that probably everyone has a recurrence of this requiring a hysterectomy, this is a hysterectomy support site. So, only the women who ultimately needed a hysterectomy for treatment typically end up here. All of the thousands of women who were cured with their LEEP or cone do not post here. Many of them were here short-term to ask questions, but ultimately did not feel the need to stay since they were cured. So, don't let us scare you too much!

Good luck! I hope you are able to find all the answers you need so that you are able to have an informed conversation with your doctor. Let us know how you are getting along and what decisions you come to!

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  #4  
Unread 07-31-2004, 11:35 PM
Had a Leep going for Hyst now

Hi,

I had a LEEP done 10 months ago for Dysplasia (spelling) I went back and now have a tumor on my cervix that is cancer.
I don't want a TAH but I also have Hemmeragic (Spelling) Ovarian Cysts, that come about eveyother month or sooner and grow to be the size of grapefruits (Painful). I have been dealing with all of this for over a year and I finally said take it out.

As far as the LEEP goes. They said it was uncomfortable I say it was alittle more than that, but bearable. The odor durring the LEEP was like burning hair, after the LEEP there was still some odor but it went away after a week or two (cant exactly remember) I did bleed afterwards but I could tell you for how long because I also had started my period.

Dysplasia is when all the pre cancer cells are there but haven't progressed in to cancer. What you prob had was Carcinoma In-Suti (Sever Dysplasia) the stage is 0 meaning no actual cancer. I personally decided with having just that , that I would have the LEEP and take the chances of it coming back. When it did come back and was cancer Stage 1 I decided that I just didn't want to deal with any of it cancer or the cysts. Personally I wouldn't have a Hysterectomy if I just had the carcinoma in-suti.
  #5  
Unread 08-01-2004, 05:56 AM
Hysterectomy vs Leep

Ditto what Jeanine says.

LEEP takes care of it most of the time. And for me a LEEP was barely a blip on my screen, physically speaking (emotional anguish considerably greater than the procedure). I'm one of the minority who had to have another LEEP and then went on to have a hyst when paps continued to be abnormal and accurate followup became difficult. If all other uterine functions are in the range of normal it would seem inappropriate medically to jump straight to a hyst for straightforward severe dysplasia.

I'm one of the lucky ones, though in a strange sort of way. I had laser for my first round of mild dysplasia. In retrospect maybe I should have fallen into the watch and wait group although I don't recall it being offered and probably wouldn't have felt comfortable with that anyway. Then I had a leep for high grade dysplasia a couple of years later. Clear margins. I had either a normal or an ASCUS pap then had another classed as "unable to rule out high grade dysplasia". Back for a colposcopy which showed a couple of very small abnormal areas which came back normal on biopsy.

At this point we have a medical dilemma: Is the pap reflecting abnormal cells higher up in the cervical canal not able to be visualized or biopsied or does the pap reflect one traumatized cervix? (Mine had always been described as friable -- inflammed but not infected.) So I had another LEEP. This one had clear margins but hey, the whole thing was clear. No abnormal cells detected, the path report said the cells changes were consistant with previous instrumentation.

A few more paps. Normal, ascus, unable to rule out high grade dysplasia again. I was offered a hyst and took it. Final pathology report "In spite of extensive sectioning, no cellular abnormalities detected." So I didn't have carcinoma in situ, or even mild dysplasia. The surface of my cervix was chronically irritated in part because of my makeup and in part because of the numerous procedures and this is the area scrapped for pap smears. I wasn't ever gonna have a normal pap. And I wasn't ever gonna know if something more sinister was brewing out of sight and out of reach.

I AM IN NO WAY SAYING I HAD A HYST FOR NOTHING. I couldn't be followed up accurately anymore and was more willing to take on the risk of surgery than the risk of cervical cancer. I don't suffer any anguish from the loss of my fertility. I'm 42 and done with that. For others it might be a harder decision and I have all the sympathy in the world for those women. I'm just happy to be finished with the uncertainty. Until the next vaginal smear that is, because I still have hpv.

I'm not sure what my final point is. Maybe I just wanted to let you know still another scenario. The only thing the same about all our stories is that every one of them is different. I'm one of the lucky ones on this site and I know it.
  #6  
Unread 08-01-2004, 10:11 AM
Hysterectomy vs Leep

I am really glad that I read this post. I have had abnormal paps for geez probably 12 years and my gyn always kept telling me that I would need follow- up paps every 6 months for ever, I just figured it was my genetic make-up, but when I moved south and got a new Dr. He told me I have hpv and mild dyspasia. so bringing you to the future, I have had a colpscopy w/ biopsy and 2 leep procedures and have gone from abnormal paps to cin 2 in about a year. My dr. has mentioned hysterectomy twice. We never really talked about it he said that it was something that I should think about. I will have the reaults from my last leep early next week, and we will talk about further treatment. I was under the impression that a leep was treatment so I was very shocked when I was told that I had cin 2 and needed another leep. But I am very relieved to know that I am not alone!! thanks again for this post for the first time in a week I could breath!
  #7  
Unread 08-02-2004, 09:35 AM
Hysterectomy vs Leep

I have had two LEEP procedures. My first was in Jan of this year for CINIII. The results came back with clear margins so my dr. thought we were in the clear. However, when I went for my three-month follow-up it was abnormal again. This spot was very small, so much so that she couldn't even see it at first. But, they did another LEEP and the path report came back that it was CINII, but with widely clear margins. I don't know if this is something that I will have to deal with forever or if my dysplasia is "cured" for good. The hardest thing is that HPV is a virus and doesn't go away. We don't know why it affects some more than others, but I pray that your LEEP takes care of your problems. I do know that a hyster is not always what is recommended because my doctor still hasn't brought it up, even with the second occurence. Good luck to you!
  #8  
Unread 08-09-2004, 06:13 PM
Hysterectomy vs Leep

Thanks so must for your responses. It is comforting to get support from those who have shared my experience.

The information was incredibly helpful. I wondered about my GYN not mentioning the option of a hyst (I think it was my PCP who said a hyst could be an option), but you all have cleared up that info. I did mention it to my GYN, but it was as I was being prepped for the LEEP (so it was not as if we were discussing it as an option).

I also did not realize there would be "results" from the LEEP (I have not heard from/been told to contact the GYN's office).

My GYN mentioned that another patient was up for 2nd LEEP and decided on a hyst instead. If in that situation, I might do the same but, thanks to the info I have now (that even a hyst is no guarantee), I would consider it differently.

It is incredible (and somewhat traumatic) to learn at almost 40 not only that you have hpv, but that it is an STD, is incurable, and the root of my current problem.

I guess the next step for me is to contact my GYN. Not only for the 'results,' but also to ask about the odor. It is hard to gauge differing perceptions but almost 2 weeks after my LEEP, I still have the odor (not like burnt hair). I did not notice it during my period (which started about 4-5 days after LEEP), but did at the 'end' of my period.

Thanks again for all the info.
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