Hello everyone, I am new here and looking for any information anyone can give me about this situation!

I had had 'normal' pap smears (though every one of them for the past 4 years showed mild inflammation and one while I was pregnant showed mild dysplasia) and all of a sudden, I have a pap smear this year with carcinoma-in-situ. I had a Leep done 2 weeks ago, and the results came back with high grade lesions in the margins, along with chronic inflammation.

My OB recommends either an additional Leep or a hysterectomy. I have 2 beautiful children, but am not thrilled with the thought of having the surgery. I will be having a second opinion in 2 weeks.

I would really appreciate hearing from anyone who has been through this... are there any known treatments for helping the body fight off this nasty strain of HPV?? Even if I have the hysterectomy, it sounds like problems could still occur! Should I get a urianalysis done to determine if I have any nutritional deficiencies? Any ideas??

Thank you... Jill

Hello Jill!

First off, let me say that I'm sorry to hear of what you're going through and of your unclear margins. I know how stressful all of this dysplasia stuff can be, but know you've come to a great forum with all of us women experiencing similar health concerns.

Secondly, while I'm not going through the same situation as you, I do believe it'd be in your best interest to start boosting your immune system to help suppress the HPV strain(s) you have. Getting a second opinion is an EXCELLENT idea. I also believe that your OB is being a bit hasty in suggesting a hysterectomy for recurring dysplasia-- usually that huge of a surgery is reserved for more serious cases (when the cancer has spread). As of now, you only have pre-cancerous changes, so opting for a hysterectomy to treat pre-cancerous lesions is a bit overkill, in my opinion.

So definitely seek a second, and even possibly a third or fourth, opinion. I've seen 3 different doctors for my dysplasia and all 3 suggested different treatment options, so you see how subjective this can be!

In the end, I've decided that the best way to keep dysplasia at bay is to help your body recognize the HPV you have so it can suppress it and so it won't cause any more dysplastic changes on your cervix. I'm currently seeing a naturopathic doctor to treat my mild/moderate dysplasia and I'm on a pretty intense health regimen plan that consists of MANY vitamins and daily vaginal suppositories. Naturopathic doctors have had great success in treating dysplasia and they'd be able to medically assess what vitamin deficiencies, etc that you have which may be impeding your body's immune system from kicking the virus into dormancy.

I hope this helps! Definitely see various doctors. If you're interested in the naturopathic route, you can see which doctors are in your area on their national website.

Take care and keep your head up! We all know what it's like so I send you all my warm wishes. Keep us updated as to what the other docs say! ;)

Hey Jill...I just noticed you were in Swansea. I actually grew up in Belleville and now live in Maryville. Anyway, that's beside the point. I really don't have any advice other than to hang in there. I would get a second opinion as well. Who's your Dr? We may have the same one? LOL Although, I really like mine so Hopefully it's not. I hope everything works out for you and I'm really sorry you are going through this. I just had a LEEP done 2 weeks ago. The biopsy from the colposcopy said I had a high grad lesion and mod. dysplasia. The LEEP came back saying I had mild dysplasia. My Dr. is sending them back to get redone. Hopefully this time they match. Good luck with everything and please let us know what you end up doing. :-)

Hi Jill:

I am sorry to hear you are going through this too. My pap went from ASCUS to LGSIL in a 6-month period. Two different doctors could not really see any lesions so I had a LEEP in January. The LEEP revealed I had CIN II and unfortunately it was in the margins. I had a pap at the end of May and after all this it was still LGSIL. I have also had monthly bleeding problems, though this started only after the LEEP. I have always had a very healthy lifestyle and am very physically fit. I have come to terms with the fact that a hysterectomy is in the near future. But, yes, you are right. The virus could still hang around, maybe forever as the gyn oncologist has said. So you are still looking at yearly paps to make sure you are not getting these cells in your vaginal canal.

Please keep us updated as to your decision.

Gook Luck,

msremi

Wow, thank you all for your awesome (and fast!) responses. It is so nice to know there are other people out there...

msremi, I know exactly what you are saying. The speed of all of this is scaring me - and my OB says that what is puzzling to him is that my cervix looks totally normal and healthy. I am so sorry you've had bleeding problems since the Leep. That is awful. I hope that if you do have to have the hysterectomy that that will be the end of it... The thought of this virus being in me and having to go through some kind of treatment for the rest of my life is really depressing!

Shellbel78, my OB is Dr. Tissier in O'Fallon. He is an excellent surgeon, but I've felt that he's not as good at treating other problems... I actually went to another OB (Dr. O'Young at Memorial Hospital) and she found a cyst on my ovary (not the source of my problems, but it needed to be removed!) She didn't like being 'the other doctor', so she told me to choose between them. I stayed with Dr. Tissier because I knew I'd have to have a repeat c-s with my 2nd child, and I still needed the ovary removed. If I have to have the surgery, I'd like him to do it, but I'd definitely rather avoid it if I can...

Lagirl81, I started reading up on boosting my immune system last night. I would love to be able to fight off this virus and I would really like to find a doctor to help me address the whole person, not just the diseased cells... Your story about getting 3 different opinions is one I've heard before - people going to different doctors and getting different treatment options - not to mention a totally different diagnosis! - from all of them. Scary! I will definitely look into that.

Thank all of you so much for your information & support... I was reading about someone last night on the net that swears by an extra dose of vitamin E every day, and I've also heard about the herb red clover, making it into a tea...

Jill

Hi Jill!

So sorry you are going through this! Sucks, don't it? While hysterectomy might be viewed as unnecessary and overly-aggressive to some, it is still a pretty valid treatment and successful option for individuals who have recurring/persistent dysplasia. For your doc to recommend hysterectomy, maybe he feels you are at higher-than-normal risk for progression, cancer? It does appear to me that your dysplasia is progressing faster than is "typical." But, I guess we do need to remember that there are actual PEOPLE in pathology that are determining the diagnosis from the samples your doctor has submitted (from biopsies, LEEP, etc.). Human error can always come into play. Which is why it's very important to obtain a 2nd, 3rd, 4th opinion before proceeding with such an aggressive treatment. Sure, you might get different opinions but you'll likely get a general idea of YOUR specific situation. Is you doctor normally aggressive or is he normally pretty conservative? My doctor is pretty conservative so if he recommended a hyst. for my recurrence, I'd likely heed his advice more so than if he was a doc that generally ALWAYS went over-board, KWIM?

ITA that you should proceed with boosting your immune system and becomin as healthy as you can be. It cannot hurt, that's for sure!

GL! I hope the whole situation gets resolved soon! It's so hard this waiting game we must play!

-Elle

Elle, thank you for your reply! My OB definitely is a 'better safe than sorry' type of doctor. It really worries him that my pap was normal last year, and this year shows severe dysplasia. The Leep results show the same thing, so they are both in agreement. He is willing to try the 2nd Leep to see if that gets it all, but he doesn't want to wait too long. I definitely will be seeking a second, and probably third opinion. I will definitely try to boost my immune system, too - I have already cut out white sugar (which sucks, I have a definite sweet tooth! )

I don't know your situation, but I assume you are going through something similar, so good luck to you too!!

Jill

hey Jill, Im going through practically the same situation as you are. I am recovering right now from a cone biopsy to determine the extent of the carcinoma in citu. I was also suggested a hysterectomy because of the size of the lesion and the fact that I am not having anymore children. My paps have also been normal and then all of the sudden this year I have this happening. Good luck to you. Deb

Jill, I too am going through exactly what you are. My pap in June came back with LGSIL so I was scheduled for a LEEP on July 24th. Things have not been good since then as I have had problems with bleeding........they tried packing, monsel and ultimately surgery this past Monday to place sutures and recauterize. During all this my biopsies came back and showed CIN III in the margins. My doctor recommended an abdominal hysterectomy and it it scheduled for September 7th. He also consulted with an oncologist who agreed with this plan. I have to wait until the 7th to give my cervix time to heal from the LEEP (also agreed upon by the oncologist). I am wondering, has anyone ever gone into hysterectomy with CIN III and then been diagnosed with cancer??? I am very concerned as an ultrasound showed thickening of the uterine lining.......Any info. would be appreciated. Jill, you are not alone!! I know I am feeling pretty scared and just can't wait for the
7th to hopefully put an end to all this.......
Stacey

Deb, thanks for responding. If you're done having kids, maybe a hysterectomy is the best way to go... I just wish there was another way to fight off this virus without having to have surgery! I'm separated from my husband right now, but I'm not sure that I don't want any more children... good luck to you too!


Stacey, I am so sorry to hear about the problems you've been having since the Leep. Are there any benefits to the abdominal hysterectomy, versus the vaginal? My OB said he would do the vaginal. He is a great surgeon, but I would really rather not have it... I am going to have 2 second opinions - both from OBs, one that specializes in cancer treatment, so I am very anxious to see him and hear what he has to say!

-Jill

Jill.......It is my understanding that the vaginal hyst. is somewhat easier to recover from vs. an abdominal. It is also my understanding that there are many circumstances where the vaginal cannot be done.....in my case, I have an enlarged uterus and have had multiple vaginal bladder procedures. Therefore, my doctor will be performing my hyst. abdominally. Due to the complications I have had from the LEEP, my dr. has consulted with a gynecological oncologist who will assist during my surgery. (Now scheduled for Sept. 4th unless I continue bleeding through this weeken, then the will do it this coming Tues.) Keep me updated on your progress.......Stacey