Scar tissue from Leep...

Hi Ladies! I have received good advice from you in the past and I am wondering if anyone has ever heard about the scar tissue being dangerous. I had Leep for Cin3 in 2003 and I have a lot of scar tissue. As a matter of fact, the last colposcopist said it was probably a factor in the success of my last pregnancy post leep. Anyway I had a pap smear in july that came back cin1 and colposcopy was unsatisfactory, unable to visualize SCJ and the entire length of lesion. She did ECC as well which was negative and punch biopsy came back cin2. I was refered to Gyn Oncologist and told I would need a cold knife Cone. Went to see Gyn Onc and he said we would do leep again and we could do it today this was last thursday. Here are my questions he is worried because pap and biopsy don't match and area lesion covers is extensive in the endocervix. Anybody experience this? He also said we needed to do leep to get an accurate biopsy. He said the scar tissue could cause a biopsy that was not as accurate? Does that sound acurate to any of you? I know I am just reaching. The waiting between all these appointments is awful. Anyway I have a 2 week appt. (Nov. 5) and he said they usually get lab results back in a week or less, and they would call me right away if something was wrong. Otherwise we would discuss the results and margins in 2 weeks. I guess again I just need to be patient. The thing is to me I thought well I am not excited to lose more of my cervix but I do have three boys I will be 35 next month. Atleast I knew I would be fine, I had CIN3/Carcinoma In Situ before so this was not as bad it was CIN2. But now I don't feel so confident. Thanks for listening ladies!

By rkh
Posted October 27, 2009 at 1:25 am
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Hi Kate74,
I had a gynecologist tell me the scar tissue from a LEEP I had done in 1998, could be responsible for hiding dysplasia. Ever since, my pap test result's were "within normal limit's", until Jan of 2009. I went to my gyno for an anual, I was six month's overdue at that time. Anyway, my pap came back ASCUS. I had another LEEP in Feb 2009 (11 years from the first one). The lab result's indicated invasive cervical cancer(squasmous cell), stage 1b1.
My gyno at the time told me verbatim, "LEEP procedures cause scar tissue that can hide dysplasia and can contribute to inaccurate pap test results".

This is just one professional opinion and I'm not sure if other doctor's agree with this or not? I have not asked my gyno/onco but I will at my next visit.
I hope this is useful since it is limited in the fact that I don't have another doctor to substanciate it.

By Kate74
Posted October 27, 2009 at 8:14 am
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Thanks for the reply rkh! The women who did my colposcopy was concerned about the scar tissue but, the oncologist clearly said it could cause the paps/punch biopsy/ECC to not be as reliable . As I mentioned before it is high in the enocervical canal and she could not see the end of it. Also my scj could not be visualized. The doctor agreed that was due to the leep. Were any of these things the situation with you? I was glad to see an oncologist. However when I found she was sending me to a gyn onc, I was a little scared. It seems everything I read about Cin coming back happens right away. Not 6 years later or 11, like your case so forgive me for my questions. From what I am reading they usually assume this is a separate and new infection. Now of course I am afraid it was dysplasia that was missed. Which is in no way your fault, I had felt that was what the doctor was worried about last week. I did not have HPV testing back then, which gyn onc said was not the standard then. But I would be really interested to get your gyn oncs ideas on this as well. I have really got my self worked up going over the last 6 years of paps. 2003 -had cin3 removed by leep, 2004-Atypical glandular cells, 2005-Negative, 2007-Negative, but no endocervical or squamous cells in sample, 2009-cin1, limited by blood present. punch biopsy said cin2 but negative ECC. And here I am waiting for my leep results. I am concerned because my doc never did a colposcopy. I really am just driving myself crazy. I guess everyday I do not here from him gets me closer to fine, I felt good to get through Monday morning without a call. One more question, my last pelvic exam was very painful and I was bleeding a lot. This is not normal for me and was a red flag for my doc. She said it could mean infection, all tests were negative though. Did you have other physical symptoms? Thanks rkh, I know I am long winded. Any advice would be great. How are you doing now. I think I read you had a hysterectomy and many lymph nodes removed? Are you now healthy? any radiation or chemo? Thank you again.

By Happymood
Posted October 27, 2009 at 12:10 pm
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Dear Kate,
I would like to ask you a question regarding the Atypical Glandular Cells on your 2004 Pap Smear test. I also had this, and underwent the colposcopy, that came back negative of anything wrong. Right now, I am having to go back for Pap tests every 4 months to make sure everything stays ok. My gyn told me that it is VERY rare to have the Glandular problem show up and that is why she was concerned. She said this condition usually means cancer for someone my age (post menopausal) Since I had already had breast cancer, this frightened me pretty badly, I can tell you!!
Anyway, what kind of procedure did you have back in
2004 when that result came back?
I do have a comment about scar tissue. According to my gyn, due to extensive scar tissue from a pregnancy, she was surprised I didn't have more abnormal pap smears. So there must be a connection. I hope all goes well for you. I'd like to hear from you about that glandular pap situation. Thanks.

By Kate74
Posted October 27, 2009 at 1:40 pm
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Hi Happymood! Thanks for the ideas, I said the same thing. Couldn't the scar tissue be giving me the abnormal reading. The doctor last week did not seem to think so. I am thinking it is everything combined that has the doctor concerned. When I had the atypical glandular cells, which mine were of undetermined significance it was a year after my leep and the doc said he thought the abnormal pap was due to the trauma to the cervix from the leep. Sadly I was never told anything other than it was abnormal. My gynecologist at the time spoke to the guy at the lab and decided to tell me to come back in 1 year. I only know that now because I had to get my medical records when I changed doctors this year. It sounds to me that your test results are being followed up correctly. Did you also have an endocervical curettage and endometrial biopsy at the time of colposcopy? I am pretty sure that is the standard for 35 and older. I think I was 29 when I had the results. I still should have had a colposcopy and ECC. It is true, I have read less than 1% of paps come back with this result and there are problems a significant amount of the time. And now a couple doctors down the line it seems no one thinks it means anything to go back to this. I get the fact that it does not matter now. But now that I have this extensive lesion in the endocervix (the leep in 2003 was for cin3 on the outside) that they can't see the end of, it makes me think of that pap smear a year after my leep. Could that have been indicating these issues? Happymood I think the follow up seems right if you had the other two I mentioned but, I think as we get older our chances increase for other gynecological cancers too. I am no expert and may not even be correct. And I think the breast cancer would also increse your risk for other cancers. It is always good to see what another doctor says. I had the same doc for 15 years and he is the one who ignored my AGC pap. And always get your records and lab results. You cannot ask questions if you don't have the information.

By rkh
Posted October 27, 2009 at 11:13 pm
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Hi Kate74, I totally understand how much anxiety this experience can produce. I also must tell you I am still learning about how I got to stage 1b1 invasive cervical cancer, it is a mystery to me? When I had my first LEEP in 1998, it was CINIII, I did not have hpv dna testing for strain type.

Three months later for a follow-up, the doctor told me the lab result's indicated "with-in normal limits". I continued to see him every three months for a year with consistent "within normal limits" lab results.

This I do know may have contributed to where I am today and one of the biggest mistakes I made was to let a general practioner do my LEEP, I truly regret this now.

I don't know if I had marginal CINIII growing all of these years? Nor do I know if it was re-occurent, or persistent or a new infection?

To answer your question, yes I have had problems throughout the years. Several reoccuring baterial vaginosis infections. The doctor told me that was common for women of my age because the vagina doesn't drain as well as it use to when I was younger. Lot's of dismissive excuses from the doctor. I will never understand why a colposcope wasn't performed annually due to my history????

I was told I had fibroid tumors from a vaginal ultra-sound, this was in early 2008 after I complained of vaginal bleeding and pain during sex. Finally, I realized I was dealing with incompetence and went to an obgyn. I finally got even smarter about this whole situation and consulted with an gynecologist/oncologist(smartest thing I ever did).

I wish I could say that the Cervical Cancer is 100% resolved but that is not the case. I am having neurological(bladder) problems from the radical hysterectomy. Sometimes there are complications from such a serious procedure. Also recently, I went to an ENT specialist and she felt "rasin sized" lymph nodes on the left side of my neck, just above my collare bone. I have to wait until December to get a Pet/Scan. I am having other problems I just get tired of talking about. I can say I am on top of them and I am under the care of several different specialist's.

I am so very glad that you are consulting with a gyno/onco. I am so glad I did that too. I wrote alot here and believe me there is more. I think this is enough for now and it give's you another perspective in which to reference to make your own decision's about what is best for you.

You are in my prayers as all of these women are:)

By PJ2
Posted October 29, 2009 at 1:31 pm
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Kate74 -

I have severe scar tissue and this is a reoccuring issue for me when Ihave my annual testing. I have so much scar tissue that I have had three surgeries to reopen my uterus/cervical opening, as well as not being able to deliver vaginally because the scar tissue prevents me from dilating.

I have so much scar tissue that it looks like my cervix has regenerated, although it is all filled in with lumpy scare tissue. The good thing, it allows me to maintain pregnancy, whereas, without it I probably would have had issues carrying pregnancy to term.

Anyway, my doctor does an expanded annual exam on me every years (I have been HPV and cancer-free for 10 years+), which tyoically includes a Pap, HPV test, and ECC and a hysteroscopy just to be sure all is well and he gets an accurate picture sin ce the disease can hid in the recesses of scar tissue.

I also combine this with an annual CT or PET scan and ultrasound. I know it sounds like overkill, but I want to be able to catch it early if it does return.

By Kate74
Posted October 30, 2009 at 2:57 pm
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RKH,
Thanks again for the reply. I am so sorry you are still having problems. I will keep you in my prayers and hopefully the pet scan will turn up nothing. Very tough to have to wait so long. I am sure December feels so far away stay tough. It seems crazy to me that there is often so much wait time between appointments.

I have a crazy story! I have frequent pee issues and had a CT scan in an urgent care center 2 years ago. When they could not find anything they did a pap smear and pelvic exam. The doctor told me I had bacterial vaginosis. When I asked him what that was and what caused it he said, "It is a common infection in women, really it happens beacause a women is not really clean." This really happened, thankfully I forgot. You reminded me bringing up the BV. Is that not awful? He did not speak very good english, I think what he was trying to say was in comparison our plumbing is different and harder to keep clean. But how rude. I always assume the best of people so I forgive him. I hope he has improved his english, people deserve to understand their doc. So anyway this is the thing, I remember getting an antibiotic that did not help. I feel like I never even mention the problems to the doc anymore because they have given me some sort of urine tests and nothing ever turns up. I felt pretty good after they did a CT. I have frequent and sudden need to urinate and a burning sensation, not just during but sometimes after that can just stick with me for a while. It is on and off though, maybe a few times a month for a couple days at a time. I just never felt it was the vaginosis thing and urine tests are clean too, so its odd. Sorry for the graphics.

Again, you are in my prayers. Thanks.

By Kate74
Posted October 30, 2009 at 4:34 pm
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Hi PJ2 Thanks for the info. Wow your doctor sounds fabulous. Does he know anyone in the Detroit area? I am glad you are in good hands.

Can I ask, was it just one LEEP that caused all the scarring? Mine was the same thing Cin 3/Carcinoma in situ. It was 6 years ago and I have a 3 year old. I did not realize until I had the colposcopy in September that I had all this scarring. She told me she was sure that helped with my last pregnancy. This was my 3rd child and my second was delivered emergency c-section at 30 wks. I have that verticle cut on my uterus that prevents me from delivering vaginally so that was already out for me. Though it did upset me because no one ever told me and I did not realize it until I was pregnant with my 3rd son. That was the first colpo since the first leep cone in 2003. When doc did ECC in September that really was one of the most painful things I have ever experienced and I can't believe she did it without any meds. But I know she had a tough time prying my cervix open. She said the pain was associated with the fact that there was so much scar tissue. It is just hard to understand. The colposcopist is saying she cannot see the entire length of the lesion yet she can't see anything because of scar tissue??? Let's Just hope we are all OK.

By PJ2
Posted October 30, 2009 at 5:15 pm
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Kate -

The worst of my scar tissue came with my first LEEP. It was so deep and removed so much that it filled in with scar tissue. About four years after that I got pregnant with my first son and didn't realize until I went into a life or death labor situation and they reties delivering me early that I couldn't deliver vaginally. I took three rounds of pitocin and nothing, not efacing, dilation nothing. After having him, I had to have the opening fixed so I could void the rest of the uterus.

With my second son, I went into labor and they tried to ppen me, but gave up because my labor progressed so quickly that time ran out. So I had another c-section. This time the opening was fine.

Now, I pregnant with my third child and they said the car tissue has filled inso significantly, that without a trained eye and my medical records, they would have never known I had a LEEP that removed 90 percent of my cervix. I actually have almost 4 cn at last measure, which is unheard of. It is allscar tissue that has filled in, thus crippling my ability to dilate.

Anyway, when I have my c-section in Jan/Feb, the doc is going to look internally and see if he can clip some of the internal scars and send some of the tissue around the the cervical canal for biopsy, along with the contents of my uterus just to be sure, as right before I got pregnant, they thought I had cancer again/ So, he wants to take biopsies while inside to ensure there is nothing lurking behind the scars.

I am sorry they tried opening your cervix without meds. My doc knew that when I screamed out the first time he had to stop and use a topical and numb me and then give me internal anethesia. It was still very painful even with the meds. I didn't know he was going to do it at the timke and had driven myself there and had my second child with me at the time. I was in so much pain even with meds that I couldn't walk to the car or drive home and had to callmy husband.

Now I know when they do the hysteroscopy to have someone take me and to ask for meds upfront.

Gosh - you must have been in agony!!!! Hopefuly, they will be able to run other tests and find out if there are any cellular changes and maybe pinpoint your biopsies that way. Kind of like using a ultrasound to target where to do the biopsy by injecting a needle through the skin. I had that done when they thought I had mets on my liver, it was painful, but I was grateful they injected the biospy needle through the skin directly intot he area that was affected - it relived me to know it was scar tissue from previous surgeries and not cancer.

Hopefully your doctor will be willing to explore the possibilities and think outside the box. I am thankful my doc has, as it has given me great peace of mind.

Hang in there and let me know if you need anything.

sending hugs -
P

By corellin
Posted October 30, 2009 at 8:28 pm
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I'm wondering if scar tissue is the rule rather than the exception. Here's an article that talks mentions scar tissue, and I wandered onto a site one time when looking up LEEP & endometriosis and a bunch of women mentioned they'd had scar tissue after a LEEP which led to the need for a C-Section.

http://childbirth---labour-delivery.suite101.com/article.cfm/pregnancy_comp lications_with_leep

By Kate74
Posted October 30, 2009 at 10:17 pm
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PJ2,

I did not know my biopsies would go the way they did either. Thank goodness a friend did go with me. I was nervous with this being my second round and other health issues I have had in the last year. Again, one of my worst experiences ever. As a matter of fact when I had the leep cone last week I was freaked out. My first leep was not even that bad. I think I had just been traumatized by the last visit. Also my first leep they gave me a valium (I don't know how its spelled) and he didn't last week. Funny thing he gave me a script for 30 vicodin after?? My last doc told me to take some Motrin, which seemed fine. When he asked me about meds I was on, I told him I was taking vicodin sometimes for back pain. I also told him I was unhappy because it made me sick so I didn't take it much and I did not feel the issue was really being handled (its hurt everyday since July!) I am a little worried. I was scared when I was referred to the oncologist and then I thought well atleast I would feel good about my care. I am not sure I do. I am going to a great place Karmanos Cancer Institute. He just was not the most personable guy. Maybe I should not jump to conclusions.

Thanks again so much for the advice and for listening.

By Kate74
Posted October 30, 2009 at 10:27 pm
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Corelline,

I agree with you it seems to be all I read. When I try to research anything about the accuracy of tests being compromised due to scar tissue from leep it is all I keep coming up with. Which makes me think that is good news for me if no one else is being told this.

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