Follow up protocols - Second opinion?

Hi Everyone,

Any advice is much appreciated. I've read through some posts here and am so glad to have found others going through this. It's a bit of a long story..

Basically, I haven't had any follow-up since a loop diathermy in early 2014, which showed no evidence of pre-cancerous change, but still showed a virus. Is this right? Should I fight for a pap and test of cure now?

 

BACKGROUND:

I started having annual paps (that was the protocol when I first went on birth control) at 18. All normal until 2011 (age 26).

July 2011: Atypical squamous cells of undetermined significance. Recommended 6 month repeat smear.

February 2012: Negative for intraepithelial lesion or malignancy. Asked to keep with my usual July annual (a requirement to renew my birth control).

July 2012: Atypical squamous cells of undetermined significance. Referred for colposcopy.

September 2012: At colposcopy appointment, physician looked and said she didn't think I needed it and only performed another smear. She told me there was too much rushing to send young women off for colposcopies, especially in light of my negative results in Feb. Found abnormal cells consistent with a low grade squamous intraepithelial lesion. Recommended another repeat in 6 months and/or colp.

Up to this point it's all been in Canada. At this point, I moved to the UK and took this history to the GP I registered with here.

I was referred to a specialist, had a smear in early 2013 that was abnormal and booked in follow-up in 6 months.

December 2013 - Smear showed moderate squamous dyskaryosis with high risk of HPV

Early 2014 - Lletz

April 2014 - Result of loop diathermy showed no evidence of pre-cancerous change. "There is evidence of a viral infection but I hope that all the CIN has been removed. I will see you again for follow up in due course. No further treatment is needed."

I expected a follow-up in 6 months, but heard nothing. I went to my GP at 8 months and he said I should follow it up with the specialist as he too expected I should have heard something by now. 

March 2015 - Finally got to see specialist to chase this. I was an NHS patient in a private hospital and apparently there was "confusion" last summer around my 6 month mark around what patients the doctors at this private hospital could see, so he thought I got lost in the shuffle. He discharged me (writing in his letter to my GP that I requested it when I did no such thing!) and told me to ask my GP for a smear and an HPV test, which he confirmed in a letter to my surgery.

May 2015 - Saw my GP and asked for follow-up smear, but because the specialist wrote I should have one "in a year" he wasn't sure if he meant in a year since my results of April 2014, or a year from when the letter was written. No action taken. Doctor asked me to call the specialist to clarify. I asked him what the NHS guidance said and he seemed to not have an answer. 

I have mentioned I am not getting periods, but spot frequently, including thick clot-like strands (though am on the progesterone only pill, so maybe that's ok). I was moved from micronor last year after I complained my periods are getting more irregular, painful and heavy, to Cerelle. This didn't seem to make a difference - he just said to try to clarify the wording in the letter from the specialist. I am also fatigued (though this has been going on for about 4 years as well), iron deficient and have digestion issues.

I'm concerned and unsure if the right protocol is being followed or not. Is it worth getting another opinion? I intend to chase the specialist, but know that they'll just ask me to make yet another appointment and now that I'm discharged I'm not sure how this works.

Sorry for such a long post. Feeling really frustrated and ill-informed by my doctors. :( It helps just to write it out, so I'm glad this forum is here. 

Hello. I’m sorry you are having such trouble getting your follow up smear. As you had lletz treatment, you should have had a follow up smear six months later with HPV testing. Your gp seems rather difficult. Surely if he is unsure, he could contact the consultant himself to double check. Plus since you have symptoms, he should book a smear. I would change gp or surgery, ring the consultants office to explain the problems you have, and get a smear booked with another gp. Good luck.