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Feeling defeated

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afrikaansgirl1
Feeling defeated

In September 2019 I had a Lletz treatment for my CIN 2 and it came back with clear margins. In June I had my smear to test for HPV  and this morning I got that letter. I still have high risk HPV and low grade changes. I just feel so defeated, can't concentrate on work and just want to cry. Mentally, I just needed that letter to say no more HPV. I am googling like mad to try and find options for boosting my immune system. I feel like my immune is letting me down and don't know what to do to fix it. Why can't I get rid of this infection?? I have a follow up appointment at colposcopy on the 15th of July, and not looking forward to going through this process all over again :-( Just writing this post to let out off a bit of steam and find out if anyone else has gone through this. Just feel like I can crawl back into bed and cry.

 

June 2019: CIN 2, HPV +

August 2019: Colposcopy, confirmed CIN 2

September 2019: Lletz

June 2020: Follow up, results TBC

LaurieBeth

I had a presistent HPV infection for several years that ultimately led to cervical cancer, and I am otherwise completely healthy. I don't smoke or drink and I am in great physical shape, exercising daily.  I teach school, so I am around germs and sickness constantly and never get sick. I changed my diet once I learned the HPV was back, going on an immune boosting diet and even took immune boosting supplements---nothing helped.I stayed HPV positive. My doctor told me that there really is nothing at all that can be done for some HPV.  Some things seem to work for some people,  but if there were a clear medical way to clear HPV, the medical community would be sharing it with us.  There just isn't.

I had a cold knife cone bopsy and after that followed the stricted diet possible and took supplements suggested in several studies and got the HPV vaccine--all in an effort to clear the damn virus...and still HPV positive.

I say all of this to you not to discourage you, but so that you will give yourself some grace.  This is not something that you are doing wrong.  You can definitely change up your diet or get more exercise and see if it does help you, and it would be healthier anyway, but at the end of the day, there is not much else to do but what you are doing...stay on top of your health and follow the doctor's instructions.

It is the most maddening and frustrating thing to know that most people clear the virus right away and to be one of the ones who does not, but they have no idea why this is.  Could be genetics or any number of other aspects totally out of our control. 

I am so sorry this is happening to you and I feel your rage.  HPV, punch biposies, cold knife, LLETZ, cancer, radical hysterectomy...these have all completely taken over the past four years of my life.  I wanted to scream and rage after each bad result and each "restart."

I don't think I have said anything helpful here at all, but trust me when I say, I know how you are feeling. It is all terribly unfair and frustrating, but the good news is that you are proactively taking care of your health and will be able to end up with a good outcome despite the frustration.

Stay strong!

 

 

I

LBA 

11/18Abnormal Pap CINIII

12/18Colpo confirmsCINIII

12/18Cold Knife cone biopsy confirms CiNIII, clear margins-doctor suggest hysterectomy

1/19 second opinion-close monitoring appropriate

5/19, 8/19 paps and colpos CIN I

2/20 Pap reveals CIN III

3/17/20 Lietz under GA

3/20/20 Diagnosed with invasice cervical cancer, no clear margins

5/12/20Radical Hysterectomy, Lymph node dissection, ovarian transposition-Staged 1B1-no further treatment needed

Follow up 9/28/20

 

 

afrikaansgirl1

Thanks so much for your reply. Burst out in tears when ai read you also tried everything from more exercise to immune supplements. And thats just purely out of frustration 😔 Generally I would say im healthy, fight off colds quickly, dont smoke, do some exercise (could improve here). But for some or other reason this infectiok is just not going. Just want to cry. I have a follow up colposcopy in 2 weeks time to check out the low grade cell changes. Just dreading going back into the whole system of colposcopy, constant worry. Looks like you also went through a tremendous tough road. So sorry about that :( thanks again for just reading my post and responding. Helps to know there are more people going through the same things. 

June 2019: CIN 2, HPV +

August 2019: Colposcopy, confirmed CIN 2

September 2019: Lletz

June 2020: Follow up, results TBC

55

I think Lauriebeth describes it all very well. I have been through all the thought processes and worry and am now in a place of near acceptance in that I may as well get on with my life and try to make the best of things as there is nothing else I can do! I may as well try to enjoy what I can in life and do my best to have a healthy lifestyle but as there's nothing else I can do I shouldn't dwell on it. I am trying to put it in perspective and get on with my life. I have been trying not to think about it but I still keep going back to this site because it reminds me I am not alone!!!

I hope you find a way to get your head around all this too. 

Take care

A

1st ever abnormal smear hpv & severe high grade dyskaryosis August 2019 lletz September 2019 polyp & nabothian cyst found Results hpv & mild cell changes polyp innocent Repeat colposcopy Dec 2019 test of cure January 2020 results of test of cure; no high risk HPV present , check up colposcopy appointment in June because of the discrepancy between initial smear & lletz result - June 2020 repeat colposcopy & pap - all clear - discharged from hospital - next smear in 3 yrs

Jazza
Jazza's picture

Hi

Just to add that taking an oral contraceptive pill for more than 5 years seems to increase the risk of cervical cancer as does having more than 5 children - see following link:

https://www.nhs.uk/conditions/cervical-cancer/causes/

However, I have never been on oral contraception nor do I have any children.   I've never smoked and have generally had a healthy lifestyle.  Seems my body didn't take any notice of the research -  as they say 'life isn't fair'. 

Have to say I didn't go through the frustration of repeated HPV positive results because sadly I stopped going for smear tests about 10 years prior to my cc diagnosis.  I fast forwarded from normal smear test result to a full blown stage 2 cancer!cry

 x

  • Feb 04:  (age 47y) Smear test normal
  • Stopped going for smears!
  • Summer 16: persistent watery yellow vaginal discharge
  • Dec 16: post menopausal vaginal bleed
  • Jan 17: Hysteroscopy under GA for ?fibroids - abnormal cervix observed -multiple biopsies taken, 1B1  squamous  cell cc diagnosed - confirmed by MRI/PET scans
  • Feb 17: pelvic lymphadenectomy - nodes negative, Da Vinci radical hysterectomy- close anterior margin/LVSI/PNI, restaged to 2A
  • Apr/May 17: 6x chemo, 25x external radio, 2x brachy
  • May 20:  NED.  Various side effects notably hypotonic bladder since hysterectomy - ongoing ISC, unilateral lymphoedema lower abdo/groin/leg/ankle/foot
afrikaansgirl1

Thanks Jazza and A. Its such a mind game at the moment. Trying to just act normal but at the same time trying to process it all. Was wanting to ask the nurse at colposcopy if i should rather come off the pill but thats just my mind working overtime. Its just putting it down to accepting it and trying to live as healthy as possible 😞 im so sorry about your diagnosis Jazza. You are incredibly strong for going through all that. Thanks to both of you for taking the time to reply and making me feel like im not alone xx

June 2019: CIN 2, HPV +

August 2019: Colposcopy, confirmed CIN 2

September 2019: Lletz

June 2020: Follow up, results TBC

Sunflower19

Hello,

Sorry to heat you are going through this, it's exhausting isn't it. I resonate with the meaaages above. I lead a fairly healthy life, never smoked, I don't drink and never have taken drugs or done anything in excess and I still ended up with early stage 1a1. I think the only thing you can do is what you're already doing and looking after yourself both physically and mentally. I've just had my 6 monthly follow up colposcopy after my cancer was removed after 2 LLETZ and I am awaiting my smear results to find out if I still have HPV. It's tough but you have to try and find a way to enjoy life despite the round about this puts you on. I hope you you have a good result on 15th and I'll be thinking of you.

More Information

Abnormal cervical cells and treatment

Read about HPV