Cervical or uterine? So confused and scared

Hi Janene123 and welcome to our group.

I’m really sorry to read what you have been going through and are still going through without any answers or diagnosis. 

You have a lot of concerning symptoms and I’m concerned for you that they don’t seem to have been fully investigated, and to be honest I don’t really understand why the focus seems to have been on smear tests. When you say you had a biopsy and were sent home with HRT pessaries, was this a cervical or womb biopsy? Having hpv and low grade cell changes would not be expected to cause any symptoms at all, especially not those you are describing. 

A colposcopy will be looking closely at your cervix and checking for any areas of abnormal cells, because you have been  identified as having high risk hpv, and they might take further biopsies. The hysteroscopy will involve a little camera going into your womb and again hopefully taking cells for analysis. You said that taking a biopsy from your womb was not successful before due to pain. That is quite a common thing to happen but normally if you cannot tolerate this you are offered an appointment to have this done under general anaesthetic. Was this not offered to you? 

Ultrasounds are not usually used in the diagnostic process for cervical cancer, but could possibly pick up other gynaecological issues. Was it the second ultrasound scan which identified a further increase in the thickness of your womb lining? 

Sorry, I seem to be asking a lot of questions but I’m trying to fully understand your situation. When you were referred to gynae, what did they say about your loss of bladder control and constipation? Were any further tests suggested for those issues? I don’t know the reason for telling you to stop the HRT pessaries but the reason should have been explained to you in the call.

No wonder you are scared-it seems like you have had some tests, but not had anything properly discussed with you. I hope you will have your colposcopy and hysteroscopy scheduled very quickly but please contact the clinic again if you don’t hear anything very soon. You cannot be expected to deal with all these symptoms but not have any answers after all this time.

I really feel for you and just want to send you a big hug. Please keep in touch and I’ll be more than happy to speak with you whenever you feel you’d like to. We also have the Macmillan Support line, and the number is in my signature. The staff will be happy to help and you can speak to one of the nurses for more advice. I know you feel alone right now, but we are here to listen and help where we can, and signpost extra help for you. Have you got family and friends around you? 

Sarah xx

Thanks so much for your reply. 

the biopsies I assume were womb biopsies? I know they were the single most painful thing I have ever experienced. 

it was the second scan that showed the increase in womb lining. 

no general anaesthetic was offered to me. 

they seemed unconcerned about my bladder and bowel. It was my gp that had to refer me for an ultrasound to check all was ok. Which it was. 

no explanation was given for telling me to stop the medication but as it was oestrogen based ivermectin read that it can feed this particular type of cancer is that why they said stop do you think? 

there’s so much happening and none of it’s good. I keep trying to reassure myself but the picture as a whole doesn’t look great if I’m honest with myself. 

I was given hrt last time I went to see the consultant a year ago. I’m thinking did that make it worse? I k ow it was squamous cell hpv. As it was this time too. 

it’s just so hard to stay positive 

Thanks Janene123 

A couple of things stand out for me in your reply here…the first is squamous cell hpv.

Squamous cell isn’t a description of hpv, which is a virus. A screening test-smear test-is testing for high risk hpv and that’s how it is described. Squamous cell is a descriptor of cancer. The other thing that I noticed is oestrogen based ivermectin, which I have not heard of.

My only awareness of ivermectin is that it is an anti parasitic medication used in veterinary medicine. I have seen its used discussed in alternative therapies, and by that I mean non conventional/non standard treatments, not prescribed by trained doctors.

May I ask if you are in the UK and have been prescribed this by a doctor in the UK National health service? 

You say doctors are concerned about your bladder and bowel issues but I’m at a loss to understand this if you have lost bladder control and are constipated? How can they be unconcerned? They have told you there are no issues with either of these? 

Your whole story is concerning, so I think you need to be asking a LOT of questions when you next see your gynaecologist.

Sarah xx

Sorry I didn’t proof read my reply. Ivermectin was a typo. So sorry!!

it should have read oestrogen based pessary!!

yes I am in the uk. Under the NHS. My bladder when I pass urine hurts. Not stings. No blood it feels like my bladder is full but when I get there there’s nothing there. I am wetting myself all the time as I seem to have little control there. And as I said I’m constipated too. 

they are very blasé about my bladder and bowel. My pain which is like a dragging down below. Is also brushed aside. My bleeding is like a dirty brown colour ( sorry if that’s tmi) 

I have constant back pain   And cannot eat. I just feel full all the time and when I do eat I get stomach pains. But this has all been going on since the first time I went. 

btw. The smear said there was cell changes. The first one said there were borderline changes. Then the last one done recently shows it no upgraded to low grade cell changes. So that means it’s got worse right? And yes it mentioned squamous cell hpv on the letter. 

thank you so much for talking to me. I can’t thank you enough xxxx

Ah! I did wonder about the ivermectin as I didn’t understand why it would have been involved with anything, certainly in the UK, hence my question! 

I have only ever heard squamous cell being a descriptor of cancer, never hpv, but it makes me wonder if there have been squamous cells detected in the biopsies?

Low grade and borderline cell changes are not cancer, they are a precancerous condition called CIN which basically describes abnormal cells (Cervical Intraepithelial Neoplasia). Have you seen this term in any correspondence at all? I would expect the cells in any letter to be described as CIN (also called dyskariosos). I have never in all the years I’ve been dealing with cervical issues seen the term squamous cell hpv. 

In view of all you have said, I would recommend putting a call in and asking to speak to the gynaecologist, not your gp. Ask them to explain what “squamous cell hpv” means. I think you need more information sooner rather than later, and try to find out when you will have th3 colposcopy and hysteroscopy. We really need to be our own advocates in all of this, otherwise we can be left frightened and anxious and you deserve answers.

Sarah xx