Low grade squamous intraepithelial lesion (LSIL)

Posted by pb50 @pb50, Feb 16 10:37am

I am 74 years old and had all but one ovary removed in 1988. That ovary was resorbed fairly quickly and I went through abrupt menopause. I haven’t had a Pap test for quite a while - not needed in my case per guidelines.

A new Gynecologist said because I had cryosurgery for a Pre-cancerous condition on my 20’s I should have one.

The result just came in and it says:

Low grade squamous intraepithelial lesion (LSIL)

I haven’t spoken to Doc yet but this seems bizarre??

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

@pb50. I'm thinking by now that you likely looked up the diagnosis. I don't know enough about this to comment. Do you have a follow-up appointment scheduled with your gynecologist? This is something to talk with your gynecologist about since you will want an explanation, interpretation and possible treatment guidelines with this diagnosis.

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She is out until Tuesday but according to her nurse, this is more akin to pre / developing squamous cell -sounds like of the vaginal
wall. Treatment is likely colposcopy.

Doesn’t sound dreadful but I’m ever so glad ahe did that Pap

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@naturegirl5

@pb50. I'm thinking by now that you likely looked up the diagnosis. I don't know enough about this to comment. Do you have a follow-up appointment scheduled with your gynecologist? This is something to talk with your gynecologist about since you will want an explanation, interpretation and possible treatment guidelines with this diagnosis.

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I apologize if I gave the wrong impression. I wasn’t asking for opinions on treatment etc. when I said it sounds bizarre. I was thinking that this is the first Pap I’ve had in decades and I only had it done because the new GYN asked a question - had I ever had an abnormal Pap? Well in that case we DO need to do a Pap.

So consider this a cautionary tale: if you have had a hysterectomy and an abnormal pap in the past, you should have a pap when you see your GYN.

Thanks

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@pb50

I apologize if I gave the wrong impression. I wasn’t asking for opinions on treatment etc. when I said it sounds bizarre. I was thinking that this is the first Pap I’ve had in decades and I only had it done because the new GYN asked a question - had I ever had an abnormal Pap? Well in that case we DO need to do a Pap.

So consider this a cautionary tale: if you have had a hysterectomy and an abnormal pap in the past, you should have a pap when you see your GYN.

Thanks

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@pb50. Thank you for the explanation. I did wonder why it was advised all those years ago that you did not need Pap smears. I no longer have a cervix as that was removed with the hysterectomy as my surgery happened because of endometrial cancer. In some cases the cervix is preserved when there is a hysterectomy and I would expect that a physical exam (pelvic exam) and Pap smear would be done.

I asked my nurse practitioner during a cancer surveillance appointment if she does a pelvic exam on all of her patients. She looked a little confused and said "yes" as if, why wouldn't I do that? I told her that I've learned here from some of our members that not all providers do pelvic (physical exams) for cancer surveillance appointments. Here is yet another instance in which we need to advocate for ourselves.

@pb50 Will you please let me know what your doctor tells you about your test result?

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Certainly.
Some great news is that because my discharge had recurred and appeared identical to that of the cervical atrophy before Vagifem treatment, I was most interested in whether that would mean upping strength or what. Turns out it was vaginitis. I’m on day 4 of Flagyl - and discharge has already stopped and irritation is gone. So that means the Vagifem is working and she downgraded my level of atrophy to mild to moderate from severe. That’s great news. I don’t know if I can ever stop using estradiol or if it would just worsen again. Guess I’ll
Find out. 🙂

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@pb50

I apologize if I gave the wrong impression. I wasn’t asking for opinions on treatment etc. when I said it sounds bizarre. I was thinking that this is the first Pap I’ve had in decades and I only had it done because the new GYN asked a question - had I ever had an abnormal Pap? Well in that case we DO need to do a Pap.

So consider this a cautionary tale: if you have had a hysterectomy and an abnormal pap in the past, you should have a pap when you see your GYN.

Thanks

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Absolutely. I have always asked, and (frustratingly) am unclear what parts of our female anatomy are affected (removed, reduced, snipped, whatever) after a hysterectomy.

I had a laparascopic hysterectomy due to uterine fibroid tumors that were watched and determined to be growing at a rate that was concerning, so a hysterectomy (leaving ovaries intact) was the recommendation and was followed.

Anyway - (& that was 19 years ago), I remained unclear about the Pap smear protocol. I always ask, and am with a concerned gynecologist now, and have trusted her guidance that it no longer (after a last Pap smear a year or so ago) is necessary to do them. Part of it (I think) is my remaining anatomy left after the hysterectomy, but otherwise I'm not sure why it is no longer necessary,

In my case, I did have slightly abnormal Pap smears, a colposcopy, cryotherapy and follow-up prior to the hysterectomy.

I have just recently been found to have a precancerous Vulvar Intraepithelial Neoplasia II/III condition, which is to be followed up with an additional excision in another month.

Not that that has anything to do with your concerns, but I did stay on top of these conditions through the past 40 or so years of my adult life, and it pays to be more than assertive, aware, read credible academic, professional sources for the latest developments, and hopefully find/have a gynecologist that you trust, with excellent credentials, working within a highly reputable medical organization.

I hope this unexpectedly long reply may help in some way - if nothing more than to say: keep on top of things, keep asking Qs, keep finding good, highly qualified, up-to-date professionals to guide you along the way.

Happy to answer any further Qs (that I can answer based on my experience), and wish you the very best.

Participating here is one of the best salves I've found on my journey!

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Thanks for that thoughtful response. We certainly have to learn and participate in our healthcare don’t we?

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@brandysparks @pb50 I recall that my gynecologist told me several years ago that after age 65 I no longer needed a pap smear if I had never had an abnormal one. Well, when I was diagnosed with endometrial cancer at age 67 that changed everything since my cervix was removed along with the uterus, fallopian tubes, and ovaries. Still, that advice stuck in my mind. Since @brandysparks was given the same advice I thought I would look it up. Here is information from the NIH-National Cancer Institute on cervical screenings in women over age 65.

Catch-Up HPV Testing May Help Prevent Cervical Cancer in Some Over Age 65:

-- https://www.cancer.gov/news-events/cancer-currents-blog/2023/catch-up-hpv-testing-older-women

About ten years ago a nurse practitioner I saw in gynecology ordered blood tests that included testing for HPV. I was negative. I'm going to ask my primary care physician about this because even though I no longer have a cervix I have read that HPV is implicated in other cancers.

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@naturegirl5

@brandysparks @pb50 I recall that my gynecologist told me several years ago that after age 65 I no longer needed a pap smear if I had never had an abnormal one. Well, when I was diagnosed with endometrial cancer at age 67 that changed everything since my cervix was removed along with the uterus, fallopian tubes, and ovaries. Still, that advice stuck in my mind. Since @brandysparks was given the same advice I thought I would look it up. Here is information from the NIH-National Cancer Institute on cervical screenings in women over age 65.

Catch-Up HPV Testing May Help Prevent Cervical Cancer in Some Over Age 65:

-- https://www.cancer.gov/news-events/cancer-currents-blog/2023/catch-up-hpv-testing-older-women

About ten years ago a nurse practitioner I saw in gynecology ordered blood tests that included testing for HPV. I was negative. I'm going to ask my primary care physician about this because even though I no longer have a cervix I have read that HPV is implicated in other cancers.

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Thank you so much.

As for my situation, the precancerous VIN III/III is due to a condition ("lichen sclerosus" (LS)) I've tracked since it was discovered on me 40+ yrs ago by my astute (thankfully! ) gynecologist back then.

[And, fortunately, I have been tested for HPV as a precautionary measure along the way and it was negative.]

So little is known in the general population (women, esp. of course) about LS, but I've known about it nearly my whole adult life...and, from what I've read, for those who have this condition, less than 9% (maybe even less than 5%) become (pre?)cancerous. Doctors don't understand it much (it MAY be autoimmune, it MAY have genetic/inherited aspects), and my current (female) gynecologist has said that very little research dollars are available to understand it further. Well, NOW I have it in its precancerous form, and will be going back to find if it has developed further (to cancerous) after taking another biopsy/sample in a particular location of concern.

Just underwent laser ablation with plasmajet technology under general anesthesia, and am still in excruciating pain at every bathroom visit (11 days later). If it's getting me ahead of this thing so it never becomes cancerous, then I can endure. But I also don't know why I can't find any relief at bathroom time - tried Tylenol, oxycodone (prescribed), requested whether lidocaine cream could help (it doesn't) - only Vaseline heavily applied makes it just a bit more endurable til the bathroom needs are attended to.

There is an international group I've found once again, only this time more urgently: lssupportnetwork.org, if anyone would like to check it out, gather more info.

Best wishes to all.

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Wow. Thanks for contributing your experience. And best wishes to you!!!!

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