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Cervical Stenosis after Conization Cervical Stenosis after Conization

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  #1  
Unread 08-04-2003, 11:01 PM
Cervical Stenosis after Conization

Hello,

Newbie here. Has anyone had any experience, personal or otherwise on the following: 1) After agressive conization for adenocarcinoma in situ, cervical stenosis. 2) After dialtion of cervicx, stenosis has reaccurred. Very painful. Still menstruating, and impossible for follow-up care from adeno. (Scraping the inside of the cervix for biopsy etc.)

Having children is not an issue. Have had tubes tied for past 4 years. Staying cancer free is priority. The doctor that did conization never spoke to me about a hysterectomy, never informed me of complications from conization, i.e. stenosis. Coulcn't find anything on the internent. After researching AIS on internent, and having other medial care team ask why no hysterectomy, it was discussed. Two options were presented with the dialogue, that it was my choice. A) Hysteroscopy, Fractional D & C, re-dilation of cervix, or, vaginal Hyster. one of the other.

Have gone for a second opinion. The second doctor explained to me that in conization the mucosal cells are removed (lining of cervix) and with aging, less esterogen, the possibility of the tissue not staying apart, not lubricated is there. Also was made to understand that I shouldn't wait very long to get things checked out some more. Have had a recent ultra sound that showed irregulariteis, and thickening of uterus. It could be lining that is not allowed to exit via the closed cervix, or it could be more delinquent cells.

Have changed doctors, and going in to discuss treatment/surgery options with the second (new) doctor tomorrow. A few other important reasons why I'm switching doctors too.

My questions are: Any of the AIS women had the cervical stenosis after conization? Have they been dilated, and did it reaccur? How many of you have had AIS and conization with negative margins, have later had Hyster? and/or with AIS, then hysteroscopy, then Hyster?

Thank you.
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  #2  
Unread 08-05-2003, 09:30 AM
Cervical Stenosis after Conization

Oh My Sally Ann,

Do I ever know what you are talking about! I had a procedure called a trachelectomy in which the cervix is removed but the uterus remains in place to treat early stage invasive adenocarcinoma (therefore I still get my period, allegedly ). So I guess you could think of what I had as a "mega-cone" biopsy.

I experienced stenosis and it took 6 months before my doctor diagnosed the problem. Horrible pain as I'm sure you know from experience. Here's what I've had done (so far): three dilatations, with the stenosis coming back each time, then a procedure under anesthesia that was performed to open the os wider. The success of that procedure remains to be seen, I am still experiencing moderate pain daily and severe pain 5-6 days of the month.

I've done a lot of reading on this subject, and there really is not that much out there on stenosis after a cone as you have pointed out, however, there are reports beginning to show up in the medical literature.

Also, I emailed two gyn/oncs who are specialists in the type of surgery that I had, and they were wary of how much dilatation would work in the long run. Both of them basically said that if fertility is not an issue then a hyst is the best way to go. They stated this for two reasons:

1. Pain relief
2. It is difficult if not impossible to get accurate samples for pap smears when the cervical os is closed. That is why my doc takes them as he is doing a dilatation.

Based on this information, my husband and I are in the process of deciding whether or not to try to have children. If we decide not to, I'm scheduling a hysterectomy.

Would you mind posting or sending me a PM on how your doctor does a dilatation procedure?? From my experience, it is truly horrible!! Also, are you seeing a gynecologist oncologist? Many many thanks and best of luck to you,

Beth
  #3  
Unread 08-05-2003, 10:54 AM
Cervical Stenosis after Conization

Hi Beth,

Thank you for answering. At my 3 month post-op for the conization went in for a pap and a E??? (brush scraping of interior of cervix for biopsy.) It was rude. I was on my way to work and prepared for a pap, and the other, which from previous experience was a moment of pain, then over. After finding out the cervix was closed shurt, they left me in the stirrups with a speculum dangling while looking for dilation kit. When they started to dilate it was so painful, and closed so tight, that then they went for a local kit, (whereupon I asked to have the speculum removed). The local was even more painful. He didn't wait for me to get numb, just started the dialtion after jabbing me with the needle. Love that crying from pain before work thing, then putting on the "happy, happy" all is fine face.. That was in March. They found an infection of the endometrial lining from the biopsy then and I was treated. It helped with some of the pain. Had a couple of weeks pain free.

Have had severe pain with periods in May, that sinking feeling in your lower gut, dragging your energy out of you from there. After my period in May, the pain never went away. Kegal's helped some. But there has been this localized pain on the right side of my tail bone inside the hip/sacrum scoop that started when the abnormal paps appeared, and only went away for a bit right after the cone, now is back....no clue from what. Anyway,from late May all the way through 3rd week in July, the pain was debilitating. I have a high pain threshold, but it was too much. Had to take a few days off from work. Know my uterur is trying to do its job, but the cervix has done a better job of soldering itself shut, a war of the wombs

Where I'm at now is, had a couple of weeks that were better, due in a few days to start my period and can feel things starting up again. I'm going to be meeting with the new Dr. today and will find out what she suggests. Plan on also asking her if we dilate with surgery, can the chances be increased for success by taking estrogen? From all that I'm reading, and from the more than likely chance that it will reaccur, having a hyster. makes sense. In hindsight, I was more prepared for a hyster. in Dec. financially, and slower at work, easier to take time off then now. Wish it had been broght up then. However, now I'm really freaked out about having a hyster., the stress on a tenuous relationship, support network is out of state, finances, and on the same level, just not calm about getting supporting strutural parts taken out of my body. Will post and let you know how my appt. goes.
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  #4  
Unread 08-05-2003, 11:08 AM
Cervical Stenosis after Conization

Sally Ann,

I had to laugh out loud despite myself at your description of the dilatation. I think we go to the same doctor!! Seriously, I am very sorry for your pain, as a matter of fact, I think I feel your pain! I was just curious if a dilatation was usually done in a terribly painful way, looks like it is! Local, schmocal, next time they're gonna have to do a little better job with the "pain block", wouldn't ya say? Also, an ECC is not at the top of my list of fun experiences!

I feel so badly for you, hope this period isn't too bad and that you can get help for you pain soon. Don't forget that in the long haul a hyst may actually end up saving you time at work that you lose to take care of countless exams, dilatations, etc. Just some food for thought. I really hope you can get the pain under control. Take care and check in when you've seen the other doc.

Beth
  #5  
Unread 08-05-2003, 08:56 PM
Cervical Stenosis after Conization

Hi Beth,

That would be my now "ex" doctor. The new one explains things in a way that "my poor widdle girly brain" can understand. Only reason I can thing of why a doctor would not talk TO you. They usually withhold, oops, I mean edit information, or it was my past experience.

Sorry I didnt' get more specific with the how's of what he did. Pretty sure that they used some 'tool' of graduating widths to go to town and party with up there. Just plain unpleasant. The thought of having to repeat this is more unpleasant. I'm doing my best to start to wrapping my mind around the possibility of having a hyster. in the next six months.

Will be going in for the hysteroscopy, d & c, cervical dilation, assorted biopsies, and removal of anything that jumps up and down, begging to get taken out toward the light, sometime in September. She (new) talked about putting in a uterine catheter that would extend down into the cervix to keep the raw edges from coalescing again. Ouch! just talking about those raw edges made me grimace, and clench my legs together. Reflexes. Anyway, the thought is to let those places heal on there own, without them attaching to each other. Did you have this done with the dilation under surgery? Also touched on the subject of estrogen maybe helping keep the tissues where they belong.

This whole stenosis thing is a drag. Of course if I was into menopause, and had stopped bleeding, the theory is it doesn't matter except for the ECC's. Lucky me, I'm peri-menopausal, and feeling the heat.

On the up side. Does having stenosis help keep the baby in place after a cone, as opposed to having trouble with the OS relaxing too much? Just don't have any tips on how to get the tadpoles up there

Take care.
  #6  
Unread 08-06-2003, 09:33 AM
Cervical Stenosis after Conization

Hi Sally Ann,

You crack me up! Best of luck with your September procedure(s) and check your PM's if you get a chance.

Beth
  #7  
Unread 08-07-2003, 10:30 PM
Cervical Stenosis after Conization

Hi,

Am going in on the 15th of this month. Will be under a general to do the hysteroscopy, and any clean up they can do in there, D & C, dilate the cervix, and all the goodies off to pathology. They are putting in something to keep the uterus and cevix from adhereing to themselves.

Pretty wound up about juggling work, etc. and this right now. Hopefully, just take off Friday for the surgery, then be a good girl and stay down all weekend, and maybe a half a day on Monday? Will need to see the doctor on Monday to get the uterine catheter out.

It will be a long week waiting for the path. report. Thinking good thoughts that the uterine thickening is just from the cervix being closed, and things not moving out as normal. AND that the cervix doesn't hug itself -again-.
  #8  
Unread 08-08-2003, 09:16 AM
Cervical Stenosis after Conization

Hi SallyAnn,

I'm so glad that you got in this month for your appointment! You might want to plan to take all of Monday off if you can, just get the extra day of rest in. Then if on Sunday you are feeling all better and climbing the walls you can just go in and it will be like a bonus day.

I'll keep my fingers crossed that this will be the last of it for you, and if it is, maybe I'll go see your doctor!!

Beth
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