Gut feelings? (hpv & cell changes)

Hey everyone.

I’m so sorry, this is a very long frustrated vent more than anything, but I don’t have any other way of getting it out and I’m hoping some of you might be able to relate/empathise.

I have had the most sinking feeling in my gut for the last 2 years that something is very wrong - and up til this week was getting no where with my doctors.

Around the start of 2020 I started to bleed after sex. It was just a little bit, but enough for me to be concerned about it. Then I started to get a heavy feeling and cramping/tugging that I could only describe as shootybumpain but up my cervix. I decided to self examine and felt a small fingertip section of my cervix that was grainy to touch.

I went for a smear. I told the nurse who then had a look and said she couldn’t see anything, but I asked her to feel it and she did. On that basis alone (as my smear results where clear) I was sent for a colposcopy. Those results also came back clear. That was just about two years ago.

Since then I have had gradually worsening symptoms such as horrific bleeding during/after sex, cramps and shooty pains, lower back pain, leg pain and numbness - I’ve lost so much weight through not being able to eat (no appetite and feeling nauseated and full after small amounts of food) and my periods are long, heavy and stink like rotting meat. My doctors keep telling me I just have thrush/BV and keep giving me antibiotics. I also have chronically low blood pressure after a huge pulmonary embolism (my BP is typically 80/40 and docs have done nothing about that either - I’m not on blood thinners as they said the PE was “just a pregnancy complication”). So all in all I feel horrific all the time.

After months of back and forth I just felt like I’d had enough of being made out to be paranoid and done another self examination. The patch I’d felt before wasn’t a patch anymore - one whole half of my cervix was a gritty lumpy mess. So I went back for another smear.

This time I walked in and said, “I’m beginning to get real concerned that I might have cc” and the nurse was really nice. She said she’d have a good look but they aren’t allowed to “feel” in there so she couldn’t do more than look.

Anyway, two minutes later she takes a look and steps out to get a doctor. Doc comes in and looks and says nothing. Doc does the smear and says i’ll get the results ASAP.

That was in July. Since then I’ve had another feel and my entire cervix now feels like it’s been chewed by a dog. Hard lumps and grainy everywhere. Everywhere. I called the docs at the end of August because I hadn’t had my results and the receptionist told me all my results had come back and they were clear… I was so disheartened I felt like I was going insane.

Only my results hadn’t come back clear - they hadn’t come back at all… I’ve literally JUST got them in the post! 2 months later!

The letter said I need a colpscopy due to the detection of High risk hpv and cell changes. No other info than that apart from the words “SEE THIS? WE WANT TO SEE YOU!” And it being important that I don’t miss the colposcopy appointment… Which, kicker, might take 8 weeks to come through…

So now I’ve absolutely convinced myself I’ve definitely got cc and possibly have had it all this time and they just missed it.

I feel so ill and tired and just emotionally and physically done in.

Sorry that was a mission to read. I’m just feeling very alone right now. What are the chances that I have all of these very specific symptoms, high risk hpv and cell changes and it not be cc?

I feel like I’ve tried really hard to advocate for myself with the docs but they absolutely treat me like some hysterical hypochondriac and I’m just at a loss. I have 3 children (13, 9 and 3) and I’m scared for what the future holds.

You’ve really been through it, well done for keeping on pushing its much easier just to not fight but your persistence has gotten answers even if they’re not the answers anyone would want. I had severe cells also but letter for colposcopy came on the same day for 10 days later. I believe that severe cell changes are usually seen quicker so hopefully you won’t be waiting for the 8 weeks. Also, in my area, the colposcopist said that thye perform the lletz straight away during appointment rather than waiting so be prepared for that also.

I had mine 3 weeks ago and extremely impatient waiting for results, it’s on my mind constantly. I also had irregular bleeding, pain after sex and bad hip pain but just carried on with my head buried in the sand thinking it’ll all go away then completely shocked when the nurse said I hadn’t had a smear for 9 years. So then I had feelings of guilt as well.

Make sure you have a good support person /people. My fiancé’s been incredible however he doesn’t live with me and I have 2 children so finding it all very rough being in the limbo state.
. I hope your appointment comes through really quickly for you and you get seen and treated. In the mean time this is a fba place to rant and also read others experiences too its really helped to know that others are feeling the same xxx

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