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In need of support In need of support

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  #1  
Unread 04-23-2021, 09:09 AM
In need of support

Hi,

I needed to share this with someone. Not really to have answers, maybe hope? Encouragement?

I delt with CIN3 on the cervix for a few years (2016 to 2019). I had 2 cone biopsy in those 4 years, never a good pap smear, multiple biopsies, the pain, the wait, the anxiety, etc.
2019 Was the year I got the hysterectomy. They found no cancer, but the lesions were so deep into the canal, no leep could ever get them all. I was glad I did the surgery, even tho it was a hard recovery and I had complication. 2020 I had my first pap smear after surgery, it was bad results again. Took biopsies at the cuff, we thought it could be granulation and did cryotherapy. Biopsy came back as granulation tissues, but it was showing a lot of inflamation. I also have been dealing with painful sexual intercourse, which was attributed to the granulation. Now 2021, another bad pap smear, another spot close to the cuff that seems not to heal, another (very painful) biopsy. Results came back yesterday, VAIN3.
I will have laser treatment in the next month or so.
I'm tired mentally. I am thinking about the worst case scenario. I'm sick of all these procedures that are painful and leaves psychological scars. I don't understand why my body does not heal. I've never been tested for HPV but doctors assumed I have it. My surgeon prescribed Gardasil9 as he says it can help prevent recurence of lesions. Anyone heard that?
It's a neverending nightmare and even though I know its not cancer NOW, I keep thinking of the worst case scenario all-the-time and it sucks.
I'm also scared of the laser and the pain that comes with it.

I wish it could all stop and I could heal once and for all.

Thanks for reading me
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  #2  
Unread 04-23-2021, 09:17 PM
Re: In need of support

Hi Sandrita,
I'm so sorry to hear how much you've been through. It really doesn't seem fair that you've had so much trouble.

I had a similar story to yours leading up to hysterectomy, and also was found to have cells too high in the canal for a cone biopsy to reach, but since the surgery I have been clear. I certainly go to every yearly exam with anxiety that I too will again start having abnormal paps.

I have known a number of people who have gotten the HPV vaccine after treatment. It isn't marketed for that, but there have been some anecdotal reports that it helps, and there's actually a big study going on right now to see if it helps clear hpv or prevent recurrence. It can't hurt so it is worth trying, I think.

I'm sending you lots and lots of supportive thoughts and positive energy for the next steps in your treatment. Wishing all good things for you and some health and peace, you deserve it.
  #3  
Unread 04-23-2021, 09:20 PM
Re: In need of support

I don't have any firsthand experience with VAIN but wanted to suggest trying some searches here on our forum for previous discussions which might be helpful. I'm very sorry you're going through this and know this is exhausting both physically and mentally. But, you are stronger than you know, and you will get through this, (((dear sister))). Sending hugs and every good thought your way.

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  #4  
Unread 04-27-2021, 05:57 PM
In need of support

Sandrita,
I am so glad you posted. I posted something similar a few weeks ago. I know how you are feeling. I had hysterectomy about 15 months ago. I went in for routine checkup. I still have abnormal cells and HPV 16. I have a colposcopy scheduled for the middle of May. I am at a loss of words when I heard I need another colp. Expensive, violating and painful. I too have been diagnosed with VAIN 2.. so, I hoping the colposcopy will say otherwise. However my history says otherwise... negative nellie, hell yes. I have already had 3 lasers and my parts removed.. ugh.. you are not alone in your feelings. I also did the series of gardisil and nothing..
Please let me know what they are going to do for your VAIN3, I'm curious what they plan to do for you... Keep in touch please.. it's lonely having this issue..it's not something we openly can talk about with just anyone..
Take care
  #5  
Unread 04-27-2021, 08:35 PM
Re: In need of support

Sandrita,

I’m so sorry to hear about your struggles. I hear and understand your frustrations and fears. It’s so hard when your body won’t heal, and those bad results and endless procedures keep coming. I had similar bad paps over the course of six years, two cold knife cone biopsies in 2014 and 2016 and a surgery for a uterine polyp in 2018. After I was diagnosed with another uterine polyp in 2019, I finally gave up trying to grow our family and had a hysterectomy (which had already been recommended once I was done having kids) in August 2019. I have been fine since surgery, but there’s always that anxiety and sadness that never really goes away. Please know you’re not alone. There are many of us with lasting physical and psychological scars, and we are here to support each other through the tough times. Big hugs.
  #6  
Unread 05-03-2021, 10:21 PM
In need of support

Hi sandrita,

How are you feeling? Have you had your laser treatment yet?
  #7  
Unread 05-11-2021, 08:32 AM
Re: In need of support

Thanks everyone for feedbacks. I didn't come back online before today because I needed to not think about it so much.
I came back today because I'm getting laser treatment next week. The anxiety came back, especially since last time I went in for the hysterectomy surgery, I hemorraged post op. I think I'm still a little PTSD about it if it makes any sens. Anyway, I know its not the same type of surgery, but I just want to get it over with and hopefully not EVER go back there.

I got my first shot of gardasil last week as well, 2 more shots to go. Oh and I got a call last week from my generalist saying my cancer is back. I had to explain to her that its not yet cancer. She said but it sounds like it. She had to go read about it online!!!! What a weird doctor!!

Other than that, there is nothing both my doctors can do for me apparently. There is not other approache to this.

But I will hopefully go see a holistic doctor soon.She talked to my about some suppositories and supplements that could help with getting rid of HPV and also taking some tests to look if I could have underlying issues that prevents my body to heal from this. From where I stand now, I think it's worth the shot at trying it. I have some money saved for this so I will check it out. I'm 36, I have 2 beautiful kids and a wonderful husband. I don't want cancer. I don't want to die and leave them behind without a mom. And another of my fear is that our family will break appart if I have to get a vaginectomy or something very invasive down the road... isnt weird to think about that? I wake up in the middle of the night, terrified about it.
Anyway, thanks for reading, there is not many people who understand all we go through... I feel lonely in this situation.

I will let you all know how the laser went next wednesday...
  #8  
Unread 05-11-2021, 08:35 AM
Re: In need of support

  Quote:
Originally Posted by Kariberries1 View Post
Sandrita,
I am so glad you posted. I posted something similar a few weeks ago. I know how you are feeling. I had hysterectomy about 15 months ago. I went in for routine checkup. I still have abnormal cells and HPV 16. I have a colposcopy scheduled for the middle of May. I am at a loss of words when I heard I need another colp. Expensive, violating and painful. I too have been diagnosed with VAIN 2.. so, I hoping the colposcopy will say otherwise. However my history says otherwise... negative nellie, hell yes. I have already had 3 lasers and my parts removed.. ugh.. you are not alone in your feelings. I also did the series of gardisil and nothing..
Please let me know what they are going to do for your VAIN3, I'm curious what they plan to do for you... Keep in touch please.. it's lonely having this issue..it's not something we openly can talk about with just anyone..
Take care
Let me know how it goes for you. Are you only on the wait and see approache if its VAIN2? Did you have laser on your vagina walls or on the cervix? How did it go? I had 2 leeps of the cervix which were a bit painful, but nothing compared to the cryotherapy at the cuff incision, so the laser freaks me out a little. I asked for pain meds after, cause tylenol didn't do anything...
  #9  
Unread 05-11-2021, 10:35 AM
Re: In need of support

Sandrita, I'm so glad you are posting. You are not alone. I'm having the same issues. The term vaginectomy has crossed my path in conversation with doctors. I couldn't be more terrified of that. I hope the laser you get will finally be the last. I must say that all of these issues we are having has made us stronger , I have to believe that. Good luck.
  #10  
Unread 05-20-2021, 08:42 AM
Re: In need of support

Hi ladies,

Just wanted to follow up. I did the laser surgery yesterday and it went well. I still feel groggy from the anesthesia (which I hate btw. I would be a terrible drug addict). I'm discouraged about having to go through so many procedures and wait for the outcome. Will see my gynecologist in 6 to 8 weeks for follow up. He told me it could lead to more biopsies depending on what he sees but I'm already dreading it, like its an inevitable thing...
Now it's one month of recovery. In the mean time, I'm going to see a naturopathic doctor soon, which gives me a little more hope that just my doctor. She seems confident in trying a new approach, but then again, it's her business, so ... But I truly hope it will end soon because being poked around down there all the time is getting old. I'm about to give up...

I will update when I go to my follow up appointment for other ladies going through something similar. There is not a lot of post out here about VAIN. If I have good news, I will come share! We all need hope!

Thanks for reading me.
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