Severe cervical dysplasia and treatment, what to expect?
August 9, 2016 5:12 PM Subscribe
Recently, I had a pap smear that showed severe dysplasia. The doctor did a colposcopy today, and I'm waiting for the results, so of course I'm a nervous wreck after doing research on the internet (I know, I know). I'd like to hear from people who have been through this, and I also have some specific questions.
About a year ago, in around June 2015, I had a pap smear showing mild dysplasia; the HPV test also came up positive, but not for a cancer-causing strain. The next pap smear, in December 2015, also showed mild dysplasia and HPV, and the doctor did a colposcopy, which showed the same thing.
Flash forward to next pap smear in July 2016 -- this time it comes back as severe dysplasia. Doctor does another colposcopy and says that she sees lesions on a pretty wide area of the cervix.
So here's what I'm wondering: first of all, why did the dysplasia advance so quickly? (I asked the doctor this, and she said she didn't really know, and that maybe the strain of HPV I had was fairly aggressive.) Is that something I should be really worried about, that things went so quickly?
Second, she did explain the treatment options to me (LEEP, cone biopsy, simple hysterectomy, in that order of preference), but I'd like to hear from women who have had severe dysplasia and learn what came next for them and what the outcome was. I'm past my child bearing years, so fertility isn't an issue at all.
I'm aware of previous questions on this topic, btw, but the only ones I found were a few years old, and I'm thinking there are people with different experiences now.
Sorry if this question is a bit diffuse or rambling; I'm really feeling very nervous so I'm not thinking as well as I might otherwise. Thanks, everyone.
About a year ago, in around June 2015, I had a pap smear showing mild dysplasia; the HPV test also came up positive, but not for a cancer-causing strain. The next pap smear, in December 2015, also showed mild dysplasia and HPV, and the doctor did a colposcopy, which showed the same thing.
Flash forward to next pap smear in July 2016 -- this time it comes back as severe dysplasia. Doctor does another colposcopy and says that she sees lesions on a pretty wide area of the cervix.
So here's what I'm wondering: first of all, why did the dysplasia advance so quickly? (I asked the doctor this, and she said she didn't really know, and that maybe the strain of HPV I had was fairly aggressive.) Is that something I should be really worried about, that things went so quickly?
Second, she did explain the treatment options to me (LEEP, cone biopsy, simple hysterectomy, in that order of preference), but I'd like to hear from women who have had severe dysplasia and learn what came next for them and what the outcome was. I'm past my child bearing years, so fertility isn't an issue at all.
I'm aware of previous questions on this topic, btw, but the only ones I found were a few years old, and I'm thinking there are people with different experiences now.
Sorry if this question is a bit diffuse or rambling; I'm really feeling very nervous so I'm not thinking as well as I might otherwise. Thanks, everyone.
Cone Biopsy...it's been years. It's a great excuse to stay absolutely on top of my paps and I'm just fine. I wish you the very, very best health.
posted by metasav at 5:58 PM on August 9, 2016 [1 favorite]
posted by metasav at 5:58 PM on August 9, 2016 [1 favorite]
So I had my own freak out about this a couple years ago. I had adenocarcinoma in situ, which is a high-grade dysplasia for which people often get a hysterectomy, no questions asked. Because it was AIS, I was referred to a gynecological oncologist (this is very very unlikely to be necessary for you).
He did a LEEP cone the day of my first appointment. If I had had positive margins, we would have talked about a hysterectomy but the margins were good and it eliminated my HPV and my dysplasia and I haven't had any problems since. I had very frequent followup (every 3 month pap/HPV tests) until I stopped testing HPV positive, and now see my doctor once a year for very close followup and have had no evidence of HPV or dysplasia since 6 months after the LEEP.
This is EXTREMELY likely to be no big deal for you, and it is very likely that it can be completely taken care of in a 60 minute appointment with your regular gynecologist. Yes, you should follow up, but please don't panic. Take care of yourself and feel free to MeMail if you need to talk to someone who has been there.
posted by My Top Secret Sock Puppet Account at 6:03 PM on August 9, 2016 [3 favorites]
He did a LEEP cone the day of my first appointment. If I had had positive margins, we would have talked about a hysterectomy but the margins were good and it eliminated my HPV and my dysplasia and I haven't had any problems since. I had very frequent followup (every 3 month pap/HPV tests) until I stopped testing HPV positive, and now see my doctor once a year for very close followup and have had no evidence of HPV or dysplasia since 6 months after the LEEP.
This is EXTREMELY likely to be no big deal for you, and it is very likely that it can be completely taken care of in a 60 minute appointment with your regular gynecologist. Yes, you should follow up, but please don't panic. Take care of yourself and feel free to MeMail if you need to talk to someone who has been there.
posted by My Top Secret Sock Puppet Account at 6:03 PM on August 9, 2016 [3 favorites]
I've written it out here before but I had an abnormal pap in 2011, biopsies, moderate to severe changes (? if I remember?), almost had a LEEP (but it seemed I had healed a bit?) biopsies 6 months later, another pap at 6 months after that (mild to moderate changes) and ANOTHER pap 6 months after that which finally came back clear. I've now had the past 3 or 4 years clear and just got my pap about a month ago.
In my case I had a normal pap a year prior then suddenly it was tons of changes within that. And I had healed to the point where they didn't want to do the LEEP within about a month after the first biopsies.
So - while I didn't end up having to do the LEEP, my body healed really quickly. I think they got the worst spots with the two rounds of biopsies. Now I have to probably get checked every year instead of every three, but I'm not very worried about it.
Get the LEEP if that's what they recommend. See how it goes from there before freaking out. I was TERRIFIED about the LEEP and it turned out they didn't even need to do it so take it one step at a time.
posted by Crystalinne at 6:10 PM on August 9, 2016 [2 favorites]
In my case I had a normal pap a year prior then suddenly it was tons of changes within that. And I had healed to the point where they didn't want to do the LEEP within about a month after the first biopsies.
So - while I didn't end up having to do the LEEP, my body healed really quickly. I think they got the worst spots with the two rounds of biopsies. Now I have to probably get checked every year instead of every three, but I'm not very worried about it.
Get the LEEP if that's what they recommend. See how it goes from there before freaking out. I was TERRIFIED about the LEEP and it turned out they didn't even need to do it so take it one step at a time.
posted by Crystalinne at 6:10 PM on August 9, 2016 [2 favorites]
I realize you're asking for newer info, but in case it's any encouragement, I had a LEEP done about 18 years ago, and I've been clear ever since. (And yes, even the mention of hysterectomy scared the shit out of me - I was 21 at the time - but as Crystalinne says, take it one step at a time.)
Wishing you the best of peace and heath.
posted by whoiam at 6:16 PM on August 9, 2016 [2 favorites]
Wishing you the best of peace and heath.
posted by whoiam at 6:16 PM on August 9, 2016 [2 favorites]
Hi - I'm a colposcopist/women's health provider, this is my specialty area, and so while I personally haven't had it done, I have done a whole darn lot of colposcopies and LEEPs. IANYC (i am not your colposcopist?).
Just based on what you describe, I'd expect you to have a LEEP done in-office -- it's less morbidity than conization, doesn't need to be done in an operating room or under general anesthesia, you have a 60-minute appointment. There's an uncomfortable part when your doc/provider numbs up your cervix, after that you shouldn't feel anything other than maybe some cramps. Afterwards you have a whole lot of watery/bizarre/surprising discharge for 2 or 3 weeks (this is normal), and the cervix really heals up amazingly well afterwards. You usually come in and see your provider a few weeks afterwards to take a peek inside with a speculum and check that everything is healed, and go over the pathology results. Generally you come back for a Pap in a year, or in 6 months, depending on results.
If you do wind up with conization, it's really simple, you're in-and-out lickity-split, I can't remember the last time I had someone with a complication afterwards. Both of these procedures are great because they remove the affected tissue, and so it's almost always definitive treatment (e.g., removes everything and don't worry about it again!).
Also: as far as the dysplasia advancing; everybody is different! The typical rates of progression are based on enormous samples of women in studies, and when you look at the data on a curve, some of those women are on either edge (e.g., took an unusually short or long amount of time to progress in dysplasia), and you could just be one of those outliers (and that's OK).
posted by circle_b at 6:52 PM on August 9, 2016 [12 favorites]
Just based on what you describe, I'd expect you to have a LEEP done in-office -- it's less morbidity than conization, doesn't need to be done in an operating room or under general anesthesia, you have a 60-minute appointment. There's an uncomfortable part when your doc/provider numbs up your cervix, after that you shouldn't feel anything other than maybe some cramps. Afterwards you have a whole lot of watery/bizarre/surprising discharge for 2 or 3 weeks (this is normal), and the cervix really heals up amazingly well afterwards. You usually come in and see your provider a few weeks afterwards to take a peek inside with a speculum and check that everything is healed, and go over the pathology results. Generally you come back for a Pap in a year, or in 6 months, depending on results.
If you do wind up with conization, it's really simple, you're in-and-out lickity-split, I can't remember the last time I had someone with a complication afterwards. Both of these procedures are great because they remove the affected tissue, and so it's almost always definitive treatment (e.g., removes everything and don't worry about it again!).
Also: as far as the dysplasia advancing; everybody is different! The typical rates of progression are based on enormous samples of women in studies, and when you look at the data on a curve, some of those women are on either edge (e.g., took an unusually short or long amount of time to progress in dysplasia), and you could just be one of those outliers (and that's OK).
posted by circle_b at 6:52 PM on August 9, 2016 [12 favorites]
Just a reminder that after you have a procedure like this to make sure to tell your ob/gyn if you're pregnant so they can watch your cervix length while you are pregnant...
posted by catspajammies at 7:52 PM on August 9, 2016
posted by catspajammies at 7:52 PM on August 9, 2016
I had this, twice. I was super anxious and nervous both times this happened, I think that's a normal reaction to being told that your test results for anything are abnormal.
I had a bad result from a Pap smear, doc did a biopsy, and eventually wound up freezing off the surface of my cervix with some kind of frozen wand, with liquid nitrogen inside (? At least this is how I remember it, it was a while ago). Then I was fine for a few years, and then had *another* bad Pap smear and a different doc did a second biopsy, and wound up doing the LEEP procedure, which essentially burned off the surface of my cervix, and then I was fine again, and have been fine for years with no aftereffects. And then years later I got pregnant with no medical assistance, and had the baby only after a long induction, so if anything my cervix was made stronger by the experience (I know you said you weren't planning on getting pregnant but maybe others will find this info useful or reassuring.)
Experiential notes:
1) I don't remember any real pain from any of the procedures. Discomfort of the "relax and take a deep breath" type that accompanies any regular lady-parts doctor visit, yes, but no pain. Certainly nothing long lasting.
2) I take a perverse pride in the knowledge that my cervix was once frozen off, then burned off, and is still in there working away, cervixing...
3) They (who? I don't know. I've heard it frequently.) say everyone has HPV. You are not in a small crowd. Your doc has seen this over and over and over.
4) The LEEP procedure can be a bit alarming, if you don't know what to expect. I remember seeing the faintest wisp of smoke.
The Pap smear test exists in order to find things like this. I hope you eventually look back and struggle to remember how nervous you were.
posted by Vatnesine at 7:52 PM on August 9, 2016 [1 favorite]
I had a bad result from a Pap smear, doc did a biopsy, and eventually wound up freezing off the surface of my cervix with some kind of frozen wand, with liquid nitrogen inside (? At least this is how I remember it, it was a while ago). Then I was fine for a few years, and then had *another* bad Pap smear and a different doc did a second biopsy, and wound up doing the LEEP procedure, which essentially burned off the surface of my cervix, and then I was fine again, and have been fine for years with no aftereffects. And then years later I got pregnant with no medical assistance, and had the baby only after a long induction, so if anything my cervix was made stronger by the experience (I know you said you weren't planning on getting pregnant but maybe others will find this info useful or reassuring.)
Experiential notes:
1) I don't remember any real pain from any of the procedures. Discomfort of the "relax and take a deep breath" type that accompanies any regular lady-parts doctor visit, yes, but no pain. Certainly nothing long lasting.
2) I take a perverse pride in the knowledge that my cervix was once frozen off, then burned off, and is still in there working away, cervixing...
3) They (who? I don't know. I've heard it frequently.) say everyone has HPV. You are not in a small crowd. Your doc has seen this over and over and over.
4) The LEEP procedure can be a bit alarming, if you don't know what to expect. I remember seeing the faintest wisp of smoke.
The Pap smear test exists in order to find things like this. I hope you eventually look back and struggle to remember how nervous you were.
posted by Vatnesine at 7:52 PM on August 9, 2016 [1 favorite]
I had this done a few years ago. I also was super freaked out, but it was really not bad at all. I forget exactly which type of procedure I had (I'm pretty squeamish so I really didn't want to know the details). I had it done outpatient in a hospital. I had the procedure on a Friday, hung out at home for the next few days, and was back at work on Tuesday. I probably could have gone to work on Monday but I was like "eh, why not stay home and watch Netflix." I've had totally normal paps since then. I realize this is very scary-sounding territory, but it's something that's quite common, and health care professionals are totally on top of it. You'll be fine! And then you can be that friend who pushes all your friends to get their regular paps!
posted by radioamy at 8:11 PM on August 9, 2016 [1 favorite]
posted by radioamy at 8:11 PM on August 9, 2016 [1 favorite]
Hi, I'm a little bit of a historical reference, but I have Experience, which may be relevant to you, and I'm happy to share.
When I was about 20 years old my GYN called me back several times to repeat a pap. It seems that depending on the spot she took the sample from (think 2:00, 6:00, etc) I had either stage 0 or stage 4 results. She repeated the smear several times and was absolutely mystified by the varied results. What was going on? She was a GYN but focused on midwifery (normal, low risk). No outliers. She referred me to a more mainstream GYN, who promptly performed a colposcopy - then experimental - and then a cone biopsy. This was quite a while ago, say 1975. HPV was a sidebar, while the data was accumulating. After the conization the pathology report described an area of "carcinoma in situ". It seems like depending on where the doctor scraped it either did or did not come in contact with that area, explaining the disparate pathology.
For about 10 years I had clear paps, and I was getting them every 6 months. Nobody could fathom that such a young person had this - clearly before HPV was mainstream. Fast forward about 10 years, and once again I had worrisome abnormalities, now described as "severe dysplasia" rather than stages. Same GYN who again performed a cone biopsy.
I got married. I even got pregnant pretty easily. However, giving birth was hell because my cervix was practically sealed shut by scar tissue from all the surgery. When I had a contraction, designed to thin the cervix, my scarred cervix didn't budge. I remember calling the nurse when I was placed on the labor floor and kind of left alone overnight because my cervix wasn't thinning. I was timing contractions every 1 1/2 minutes (the kind of timing that indicates you're ready to deliver) but I was not dilated AT ALL. She knew something was weirdly wrong. She called my OB who took in the situation and then decided to rupture the scar tissue manually during a contraction.
I think the docs weren't totally prepared for my delivery, and certainly didn't anticipate the scarring, and my daughter had a very long and difficult birth. She's OK, but it was dicey for a while, related to my long labor. I later had a son without difficulty - no scarring left. So I would say that a cone biopsy is no big deal. Just don't forget to account for the possibility that scarring will alter otherwise predictable processes.
posted by citygirl at 9:39 PM on August 9, 2016 [2 favorites]
When I was about 20 years old my GYN called me back several times to repeat a pap. It seems that depending on the spot she took the sample from (think 2:00, 6:00, etc) I had either stage 0 or stage 4 results. She repeated the smear several times and was absolutely mystified by the varied results. What was going on? She was a GYN but focused on midwifery (normal, low risk). No outliers. She referred me to a more mainstream GYN, who promptly performed a colposcopy - then experimental - and then a cone biopsy. This was quite a while ago, say 1975. HPV was a sidebar, while the data was accumulating. After the conization the pathology report described an area of "carcinoma in situ". It seems like depending on where the doctor scraped it either did or did not come in contact with that area, explaining the disparate pathology.
For about 10 years I had clear paps, and I was getting them every 6 months. Nobody could fathom that such a young person had this - clearly before HPV was mainstream. Fast forward about 10 years, and once again I had worrisome abnormalities, now described as "severe dysplasia" rather than stages. Same GYN who again performed a cone biopsy.
I got married. I even got pregnant pretty easily. However, giving birth was hell because my cervix was practically sealed shut by scar tissue from all the surgery. When I had a contraction, designed to thin the cervix, my scarred cervix didn't budge. I remember calling the nurse when I was placed on the labor floor and kind of left alone overnight because my cervix wasn't thinning. I was timing contractions every 1 1/2 minutes (the kind of timing that indicates you're ready to deliver) but I was not dilated AT ALL. She knew something was weirdly wrong. She called my OB who took in the situation and then decided to rupture the scar tissue manually during a contraction.
I think the docs weren't totally prepared for my delivery, and certainly didn't anticipate the scarring, and my daughter had a very long and difficult birth. She's OK, but it was dicey for a while, related to my long labor. I later had a son without difficulty - no scarring left. So I would say that a cone biopsy is no big deal. Just don't forget to account for the possibility that scarring will alter otherwise predictable processes.
posted by citygirl at 9:39 PM on August 9, 2016 [2 favorites]
I had fast-advancing severe dysplasia late last year and my doc couldn't explain the reason for it either -- some strains just advance fast. I had the LEEP and it was literally five minutes. A little pinch for the anesthetic then a few seconds of something that smelled like burning but that I couldn't feel. Doc said it was my choice about whether to return to work that day, so I did. I was a little tired and took some ibuprofen.
One thing that I experienced was way way heavier periods after the procedure with severe PMS that I'd never had in my 40 years on earth. My doctor said it was unrelated but it began with my first period post-procedure. Nausea for multiple days, vomiting, mood swings, bad cramps. I went back on pill for a few months, which resolved most of it.
posted by *s at 9:25 AM on August 10, 2016 [1 favorite]
One thing that I experienced was way way heavier periods after the procedure with severe PMS that I'd never had in my 40 years on earth. My doctor said it was unrelated but it began with my first period post-procedure. Nausea for multiple days, vomiting, mood swings, bad cramps. I went back on pill for a few months, which resolved most of it.
posted by *s at 9:25 AM on August 10, 2016 [1 favorite]
Five years ago, I also had dysplasia that progressed quickly to cancer, it happens. My gyn intended to do a LEEP but wound up changing her mind during the surgery and doing a cone instead, based on what she saw. (I also had to have a D&C because my cervical canal was too small for them to get all of the biopsy samples they wanted to check). Anyway, the weird discharge after that circle_b mentioned was probably the worst part. I still have to have twice a year paps, but they don't show any abnormal cells anymore.
posted by desuetude at 10:40 AM on August 10, 2016 [1 favorite]
posted by desuetude at 10:40 AM on August 10, 2016 [1 favorite]
I had a cone biopsy after dysplasia and colposcopy twenty something years ago, and have never had an abnormal pap smear since. This isn't relative to your situation, but in those intervening years, I've also had a number of children, and only attracted a few "oh! I see you've had a cone biopsy!" comments, and my cervix has been completely fine.
posted by glitter at 4:44 PM on August 10, 2016 [1 favorite]
posted by glitter at 4:44 PM on August 10, 2016 [1 favorite]
Amendment: The worst part was/is the anxiety and emotional fallout. Waiting for test results to come back (before diagnosis, pathology report on surgery, post-surgical paps and colpos) took a big toll on me. And then I felt bad about THAT, because it was only a very tiny stage 1 tumor that was cured with minor surgery; I didn't need any chemo or radiation.
It still fucked with my head. For some people, it doesn't fuck with their head too badly. Neither way is "doing it wrong," but I didn't know which camp I'd fall into until I did. Take care of yourself emotionally, whatever that looks like.
posted by desuetude at 8:06 AM on August 11, 2016 [1 favorite]
It still fucked with my head. For some people, it doesn't fuck with their head too badly. Neither way is "doing it wrong," but I didn't know which camp I'd fall into until I did. Take care of yourself emotionally, whatever that looks like.
posted by desuetude at 8:06 AM on August 11, 2016 [1 favorite]
Response by poster: Thanks, everybody -- you all have eased my mind. Still waiting for results of the colposcopy, which will be early next week; I'll try to remember to update.
posted by O Sock My Sock at 10:42 AM on August 11, 2016 [1 favorite]
posted by O Sock My Sock at 10:42 AM on August 11, 2016 [1 favorite]
Response by poster: In case anyone is still reading, or for people searching for information in the future:
I got the results of the colposcopy back and my gyn sent me to a gynecological oncologist, who recommended a cone biopsy. I had the biopsy a week ago, and while it isn't something I'd love to do every single day, it wasn't that bad. I took two days off work after, but really could just have taken one. I just got the results from that, and it showed nothing worse than low dysplasia. So all is ok now. Thanks again!
posted by O Sock My Sock at 1:57 PM on September 15, 2016 [2 favorites]
I got the results of the colposcopy back and my gyn sent me to a gynecological oncologist, who recommended a cone biopsy. I had the biopsy a week ago, and while it isn't something I'd love to do every single day, it wasn't that bad. I took two days off work after, but really could just have taken one. I just got the results from that, and it showed nothing worse than low dysplasia. So all is ok now. Thanks again!
posted by O Sock My Sock at 1:57 PM on September 15, 2016 [2 favorites]
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