CIN 3 - Scared!!!!!!

Hi everyone!!

I am new to this site, did a google search and found it, it seems that everyone here has been in more or less the same situation as I am now, and everyone seem very understanding and caring!!

I am a 25yr old female, got married January 19, 2008 to my boyfriend of 5 years!! I have been having really bad stomach pains, so my GP recommended I go see a Gyno, so I did!! Had my first (ever) pap smear 2mnths ago!! Got a call back from gyno who says results came back abnormal and want to resubmit it for further investigation! These results also came back abnormal.

I was scheduled for a Colposopy, which I got the results of last week!! I have CIN 3, Cervical Dysplasia , pre-cancerous cells :-( These are such big words, I am so scared!!!

My OB/GYN has booked me for, now explain this PLEASE, a "Electro-conization" or "Conization by Diathermy" on November 2, 2008!! I have been doing research for over a week regarding the procedure she has recommended and all I could come up with was that it's either a very new procedure or it's a combination between LEEP and Cone Biopsy!!!

I am so scared!! My husband and I were planning on starting a family next year July/August, is this still possible??

Since I got my results last week, I have quit smoking, won't use tampons (on my period) and can't even get myself to think about sex??? Can I still have sex???

I have a second opion booked for October 6!! I need to talk about this!! I've cried so much, and yet I don't feel like I've cried enough!! I've told my closest friends, but haven't really talked and cried to them about it... don't want to burden them, or make them feel like I need/want sympathy!!! Have told my husband as well, and we've spoken about it, but not enough it seems!!

I AM SO SCARED!!! I really want to have kids, I know I'll be an amazing mother!!!

Thanks for reading and letting me vent some!!

Take care,

Xxxx

Report post

17 replies. Join the discussion

Hi!

You said/asked most of the things i wanted to but I didn't know where to begin...

I also found the site through google and i am so thankful.

I am 28 years old and have 2 beautiful girls (aged 34 months & 16 months). I was diagnosed with endometriosis in 2002 and thought my chances of falling pregnant was zero. But it did happen for me even though the chances of falling pregnant, having endometriosis was fairly slim. Like you said you have that mother instinct & even my husband said he can't see me not having any kids! It did happen for us and i believe that one has to have faith!

I do go yearly for papsmear & did so about 3 weeks ago. To my horror i got the test results back as hsil (cin 3). I got told to go see a gyne for a colposcopy & could only get an appointment on the 7th of October, so i must say i am all stressed up myself.

Everything i have read so far is telling me more about what to expect but it doesn't make me less scared!!

I have also done some research and do not know the procedure which you are referring to - hopefully we will get some clarity over that from someone on the site?

Thank you for hearing me out!

Will pray for you!

Report post

Thank you for your response ROOIES!!

Colposcopy wasn't too bad!! I really didn't know what to expect when I went for Colposcopy!! I had my papsmear done by a gyne who was a stand in for my current gyne (whom, may I add, speaks hardly any english, and had me read my lab results myself, cause she could'nt express herself in english - hence the 2nd opinion I'm going for).

I had my husband take the day off work, cause I thought the Colposcopy procedure would be done in gyne's office, I was totally wrong, they took me to surgery room, my husband couldn't come with!!

Any way, if I could give just a little bit of advice??

Speak to your gyne before your colposcopy and ask her/him to talk to you while she/he is performing the procedure, that way you'll know what's coming!!

My gyne didn't say 1 word to me, so I had to constantly ask nurse what was going on!! It was really frustrating, plus it SLIGHTLY burns/tingle when they enter the vinegar solution, which I wasn't prepared for at all, neither was I when she started to take some tissue off either, which is really uncomfortable.

Recovery afterward went very smooth!! I read online that I might need sanitary pad due to some bleeding afterward, which I did, but it only lasted a few hours!! Hardly any pain afterwards, only a slight discomfort!!

Good luck with your Colposcopy!!!
Please let me know if you have any questions, or even if you just want to chat...

You will be in my prayers to honey!!
All the best,
xxx

Report post

hi scardycat. sorry to hear your first gyn checkups have shown that you have cin3. i would encourage you to learn more about hpv, and it sounds like you're already on the right track in trying to rid your body of the hpv infection by quitting smoking, not using tampons, etc. Big congrats to you for no longer smoking....good for your gyn health as well as your overall health. it sounds like your gynecologist has recommended a LEEP conization. this is using the LEEP technology (electro surgical technique) to do the conization. here's a website from webmd that explains the cervical conization and using the LEEP method to do the surgery (vs. scalpel or 'cold knife'). i think it's great that you're getting a second opinion. hopefully with a good medical team along with your own young healthy system, you will be healthy and able to have a baby next year. but, one step at a time. and it sounds like you're doing that. and crying and releasing your emotions is ok...this is scary stuff. follow what the doctors tell you, be sure to keep up with your regular paps and hpv tests, and learn more about hpv and cervical dysplasia/cancer. knowledge is power!

Report post

Hi Scaredy Cat. I just had treatment for HSIL CIN 3 a week ago. I was diagnosed while I was pregnant, but they couldn't treat it because it would have been dangerous to the baby. So they waited, because these things progress very slowly. My son was born 6 weeks ago, and after I had healed some, I had a procedure like you describe. Believe me, my c-section was MUCH scarier than the CIN 3 treatment! My husband stood and talked to me while the doctors excised the lesions. It hurt when they shot me with the numbing agent, but that's all. And I've been a bit crampy ever since. But CIN 3 is technically not cancer, so provided that it hasn't spread, you should be able to have kids. It is the last stage before cancer though, so get it treated immediately. They will send the tissue for testing and let you know what level you actually had, and likely you will be done. But you will need to have pap tests very frequently for the next year, and you can never, ever miss your annual.

Believe me, I know this is totally scary. I lived with it for 6 months, knowing there was nothing I could do. But it wasn't so bad, and they tell me they got it all.

Write me if you have any questions or just want to talk.

Laura

Report post

Hi All

Well first of all....Id like to say this site is fantastic. This is the first time Ive posted in months...however I read the posts every day.
I kinda just want tell you girls that there is hope....try not to be too scared....i know thats a tall order to ask!
I had a smear (pap) back in April. I hate them...always faint! I was beside myself when I had a letter asking me to go for colposcopy. I worried myself sick....ate uncontrollably, sat around ...waiting for something nasty to happen....it didnt!!! I was diagnosed with CIN3 ...Which extended into my glands. Im only 30..no kids...I was terrified. This site kept me sane!
I had a cone biopsy in July...I wont say it wasnt painful...id be lying! But a few weeks of discomfort and a bit of NHS style waiting....Im fine! I got clear margins!! I have to go bk in February to get checked.
On the day I got my results I stopped abusing my body. I take vitamins, eat well, excercise well and most importantly I dont worry about something that may NEVER happen. Im so happy to be hear. I had a cold knife but my fertility hasnt been affected. I wish you ladies all the luck and love in the world! xxx

Report post

hi, this is my first time ever on one of these sites (well my first time actually posting something.) i have been informed that i also have cin3. i am a emotional basketcase... literally... I had my appt. with my gyno yesterday and thats when i found out about what i have... first i had a annual pap and it came back abnormal, i figured that was because i have hpv.( i've had gw's before but they went away, and now im currently having an outbreak i believe because of stress..) (but the outrbreak started a few weeks ago so i know its because of other things in my life, not because of the most recent news, but im sure this doesnt help...) But anyway, i got a paper in the mail said i had to get a colposcopy immediately, so i went and got that 2 weeks ago and i just went in for a followup; My doctor told me yesterday and i almost fell to the floor, i just started crying, and everything she said after that i wasnt really listening to.... all i know now is that i have an appt for some type of surgery on the 9th of dec. and im sooooooo scared... i've never had surgery, i've never had anything like this before... I am 21, i just turned 21, and honestly all i really remember is her saying "this can lead to cancer, your at the stage right before cancer, and something about if they have to go in a 2nd time (if the first surgery doesnt work completely) i wont be able to have kids, or it will be very difficult..... i told my parents and my best friend, but thats all... i havent even told my sisters yet... i cant they are going to flip out.... im so scared, anxious, nervous, etc...

Report post

Hi britto --

Oh... I'm just so mad at your doctor!! First of all, your doctor needs your consent to do a procedure, and how can you give your consent unless you fully understand what they're going to do and the potential side effects? Second, I wouldn't feel a great deal of confidence in a doctor who projects a scenario of multiple procedures ending in possible infertility. GEEZ!! you're 21 and the doctor should be coming up with a course of treatment and patient education that will empower you to have successful treatment and clear your HPV infection. She's giving you a worse case scenario and no information/tools to empower you in this situation. I'd just frankly find another doctor.

britto -- there's a lot you can do to try to clear your active HPV infection. That's important because if you can clear the active infection, it's far less likely you'll need more than one procedure. Has the doctor given any information to help improve your cervical/vaginal health?

Here are some suggestions: clear up any yeast or bacterial infections in the cervical/vaginal area, avoid douching, tampons or anything that will disrupt your vaginal PH, reduce stress, drink plenty of water, get lots of sleep, eat plenty of fresh fruits & vegetables, especially cruciferous such as brocolli or brussel sprouts & leafy green such as kale. It may also be helpful to avoid sex or use condoms until the genital warts & dysplasia have cleared. (Dysplasia, CIN, is probably caused by a different HPV strain than the genital warts...)

Also, treatment for CIN, such as a LEEP will often lead to clearance of the active HPV infection, and if it does, then it's much less likely that an additional procedure will be required.

Britto -- I hope you continue to inform yourself about HPV and about your upcoming procedure so that you're empowered with information to make the best decisions about your health.

PS -- do you know whether you have one spot of CIN and whether it's a big spot or little and whether there are any other spots of dysplasia? Would be helpful to get a copy of your medical records so that you can fully understand what you're dealing with. Also good to ask your doctor what procedure she has recommended and why that particular one and also what other options might be.

Report post

Hi Corellin,

I'd just like to point out that MANY women have procedures, including major surgery like hysterectomy, WITHOUT being informed - it happens more than women know. It is a problem, one that's been documented, written about (Misinformed Consent by Lise Cloutier-Steele, Losing the Woman Within by Linda Parkinson Hardman), support sites have been created because of this, (HERS Foundation, Hysterectomy Association), etc. It's disheartening that it still goes on, but many drs still think they know best - afterall, they're the ones who graduated medical school, or they don't take the time to do patient education or don't think patients will understand, and surgeons don't usually follow-up after patients have been discharged from their practice (approx 2 yrs or less). That's why it's SO IMPORTANT that women of any age learn about HPV, cervical dysplasia/cancer and methods of treatment/surgery, side effects of treatment/surgery both short term & long term, prognosis with & without treatment/surgery, and get at least 2nd opinions, sometimes even 3rd or 4th opinions before agreeing to any procedure. Otherwise, they really don't know and are not informed, yet they are signing off on any doctor liability.

I know you are all about being informed and keep us updated with good info, which is very appreciated. Your comments just resonated with me since I was on the receiving end of misinformation and no information and needed to stress how important it is to be informed.

ScardyCat & Britto,

Please get copies of your medical records so that you see exactly what's going on with your bodies, take notes, ask your doctors for thorough explanations and let them know that procedures will be done only after you completely understand why the procedure is necessary, what the side effects may be (short & long term), what all of your options may be in addition to the proposed procedure, how to take care of yourself post procedure (including signs & symptoms to watch for that may indicate a complication post procedure) and the prognosis or expected success/cure rate of the procedure. Do not be rushed into anything you do not understand! Have someone accompany you to the visits who can be another set of ears and write things down. Please consider a 2nd opinion, preferably with a gynecologist-oncologist, as well. Corellin recommended a couple of books on HPV in the past:
"What Your Doctor May Not Tell You About HPV and Abnormal Pap Smears" by Joel Palefsky, MD, "The Art of Cytology" by Suzanne L Adams. There's also the Health Professional's HPV Handbook that's more technical and expensive - I think the other 2 are easier to read & understand. By taking the time to educate yourself, you will be better prepared to ask questions of your doctor and get better information from your doctor that will help you make the optimal decision for your health. It is your body and you live with the decisions made about your health.
Keeping you in my thoughts & prayers.

Report post

hello ladies,
I also signed up for amazing site for almost the same reasons as yours. But my situation is a little different. My mother has just been diagnosed with CIN3, and she's 49. She only heard the news today so I don't know what her doctor will suggest for a prospective treatment, and I'm wondering if anybody knows how this is related with age.
My other concern is genetical issues.
I myself was diagnosed with endometriosis last year, and had a laparoscopic surgery to remove it. I'm only 23 now. Everything was fine until a month ago, and I've recently been diagnosed with polycystic ovarian syndrome. I know it's nothing much related to CIN but I'm just concerned about my mother's being diagnosed with CIN3 and me having endometriosis in the past and pcos currently, so what the odds are for me also developing CIN, could it be genetical or maybe just the time will show?
thanks for reading this and everybodys comments. this site looks such a wonderful support.

Report post

ria62, cervical dysplasia and cervical cancer have an indirect genetic component....the genetic/hereditary part is that mothers and daughters and sisters may share the same ability/inability to clear an hpv infection. it's the hp virus that is the causative agent for cervical dysplasia/cancer.

Report post

To Scardycat
Hi, i am 32 and was diagnosed with hsil cin3 this january...i had biopsy done, waiting for results...
how are things going with you and your problem?

Report post

Hi ladies,
At age 30, after a perfect pregnancy and a horrible vg delivery, I had a healthy son. I nurse him still (he's 14 months old) and I got a period after 24 months of not having one (with the pregnancy and b-feeding). Now my 2nd period is 2 months late but a home pregnancy test shows I am not pregnant. I work out every week day, take prenantal vitamins (helps with b-feeding), and try to have fruits and veggies if not at each meal, at least at every other meal. At my annual GYN exam I got an abnormal pap, them colposcopy, then biopsy, then CIN 3, then recommendation to have a LEEP under total anesthesia. Where did all this come from?
I do not sleep much (b-feeding on demand, through the night) and I've had quite a lot of stress, but could this be enough to cause a CIN3? We've had a lot of cancer on my mom's side (she just had a hysterectomy), and I had a huge ovarian cyst removed three years ago. Maybe this is genetic?
Since the birth of my son I've had a lot of perineal discomofort (itching and burning) and my birth-induced hemorhhoid likes to act up with almost every bowel movement. I've had three yeats infections in a month.. Something is not right here.
I am not sure that "treating" the CIN3 with a LEEP will actually prevent these things from coming back, as I am not sure what the CAUSE of the CIN 3 is. Any thoughts?
I also want to have another baby and the LEEP makes me nervous. How does the GYN know how much to cut?
Is CIN 3 always related to HPV? Should I ask my GYN to test me for HPV before we do the LEEP? Ugh... Need some love and support...
On Wed. (12/9/09) I see my GYN, next Monday I see another GYN. Will let you know how it goes.

Report post

I am really worried as well. I jsut got teh news and basket case.

Report post

Hi Ladies,

Im just 30 & I was diagnosed with CIN 3 & low risk HPV in late 08. I went in for my regular pap & it came back abnormal, with a CIN 2 result.I was referred to a great specialist & then in the space of approx 4-6 weeks I became CIN 3. My specialist did the solution test & it came up a very large area so I was booked in on the spot for a LETZ & a D&C. At the age of 29 it was so scary so I can relat to what you're saying. I'd smoked but careful health wise. I quit smoking - 2 years now & went on with the op. I had a reaction to the chemicals used in the op & some bad pain abdominally after bad thats about it. 5 days laster i was back at work. I have paps every 6 months & at the end of this year can go to yearly then for the rest of my life, if all goes well. It is scary especially considering your fertility & cancer being a thought. But my advice is research your specialist & ask lost of questions. I LOVE my specialist & trust him completely.

J

Report post

Im 21 and just had my first pap a few weeks ago. They found abnormal cells and I went back for a colposcopy only to find out the results today that I have CIN 3. I was told I will need to go see a gyno so I can get the leep procedure done. I have no idea what that even is. Im completely healthy. I don't smoke and hardly ever drink. I lost my virginity when I was 20 to my current bf of 2 years and he is the only person I have ever had sex with. I don't know what to think about this and dont know how serious this diagnosis is.

Report post

Hi there 03becca... I am 23 and just got back my first abnormal pap EVER... The doctor called me on the phone to tell me and all she said was that I had high grade abnormal cells and needed to come in for a biopsy immediately. She didn't explain anything and so I jung up and immediately started crying. I had my biopsy, endocervical cutterage (ECC) and colposcopy done last friday. I'm suppossed to meet with my gyno this friday to discuss the results and i am terrified. During the colposcopy she said at least moderate dysplasia which I guess is CIN II.. but she said "AT LEAST"... of course I am thinking of worse case scenarios and I am stressing myself out. I really want to have babies.

From what I heard, a procedure can be done to get rid of the precancerous cells (i.e. LEEP). They basically cut them out while under anesthesia.

I would love it if we could keep each other posted. I have been in real need of support and this is the first time I post anything online regarding my new cervical issue... :(

Report post

I just got a referral for a gynecologist yesterday but I am worried about scheduling an appointment. No one really discussed the results with me I just received a phone call a week after my colposcopy and biopsy saying that I had a ring of abnormal cells around the wall of my cervix and that it was CIN 3 as well as the doctor telling me I needed to get the leep procedure. Ive always been terrified of needles so I am going to see if they can put me out during the procedure. I am worried since this was my first pap test ever that I could have had this for years and never knew about it. There is also a history of cervical and uterine cancer in my family. I'll keep you updated when I get the leep procedure done.

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Support NCCC

Help the National Cervical Cancer Coalition reach its goals and support people like yourself by making a donation today.

Donate to the National Cervical Cancer Coalition

Discussion topics

Community leaders