Hi everyone,
I didn’t really know where else to post this so please bare with!
6 months ago I had to go for a LEEP procedure due to CIN2 changes. I’ve had the HPV virus for a many years and have a smear every year. I got a letter to say they are confident they got all the cell changes and to attend a smear again in 6 months (in about a months time).
since my LEEP I followed all after care instructions and I eventually stopped bleeding and was healed. Unfortunately since then I’ve been bleeding in between periods, had periods lasting about a week and a half, bleeding after sex every single time and a majority of the time sex is very uncomfortable. I’ve been getting period type stomach pain and Back ache all Throughout the months and I only realised yesterday I’ve had an extreme loss of appetite. I can go 3/4 days without eating a meal because I’m just not feeling hungry and only realise I need to eat when I start to feel faint! I’ve been ignoring these symptoms for months but last night my partner nagged me to call the GP.
I called this morning and felt really silly as I thought they just brush me off but she’s actually fitted me in with the out of hours doctor for this evening as she said these symptoms are pretty worrying.
naturally I’m very scared now and very concerned about what’s going to come from it. I was just wondering if anyone else has experienced this before? Perhaps the results of the LEEP procedure were incorrect? I know it’s rare but I guess it does happen.
Hi Lillyanne and welcome to the group
Please don’t feel you are overreacting in making a gp appointment-it’s much better to have these issues investigated rather than worry about them.
You have symptoms which are a concern, so it’s good you are being seen today. I haven’t had the same experience myself as I unfortunately went straight to a cancer diagnosis after being referred to a gynaecologist, but I am not for one moment suggesting it would be the same for your situation.
The gp will want to record all of the symptoms you’ve been having and may refer you to a gynaecologist for any further tests/examination. She may want to do an internal check today. The cells which were removed in the LEEP procedure would have been tested, but it is possible that maybe not all were removed. However, the best thing to do is wait until you have seen the gp, and see what she advises as a next step.
I hope you can be reassured by the gp, but I appreciate this will be very worrying for you. Please come back and let us know how you get on.
Sarah xx
Hi Lillyanne
I am really disappointed to read of your poor experience at the gp and I am not surprised you feel brushed off. It may be that you are taking a long time to heal, but 6 weeks is normally enough, not 6 months! And you followed the correct procedures after your LEEP.
He didn’t event give you an examination?? That is actually shocking. I don’t want to scare you unnecessarily, but some of the symptoms you have described are cervical cancer symptoms-uncomfortable after sex, bleeding after sex, longer and unusual bleeding, and pelvic and back pain. Those warrant investigation. And the fact that you are not eating should be a real concern.
I see you have about a month to wait to go back for what is called your “test of cure” so at least your cervix will be examined. However, you need to make sure that you explain about all of your symptoms when you go. I feel that doctors can fob women off and not deal with something, especially if they know you have an upcoming smear.
Personally, I would write down what happened at the gp appointment and make a complaint to the practice manager, asking why none of your symptoms are being investigated. Having a smear soon is no excuse-that’s a test for hpv and potentially any abnormal cells if hpv is still present, but is not a diagnostic test for cervical cancer.
I really don’t want you to be scared, but I would hope that you can speak up about this and raise your concerns. If you make a complaint to the practice manager, that will need to be responded to and actioned and will be on file should anything further happen with your symptoms developing. And next time you need to attend a gp I would ask for it not to be this one, and ask for someone else.
You should not have been fobbed off like this. Please keep in touch and let me know how things go, and if your symptoms continue to get worse before you have your smear, please make a further appointment with another gp in the practice.
Sarah xx
Hi Spirit Wolf
How are you getting on with your treatment? Hope things are going smoothly enough for you.
Your experience of cancer being picked up with no symptoms makes it even more astonishing that a doctor is not acting on actual symptoms, especially with a history of persistent hpv and symptoms which have lasted a long time.
We shouldn’t accept without question what a gp says-they are generalists, not specialists, and women need to advocate for themselves and push for answers.
Sarah xx
Hi Jennefer
I’m glad you’re doing ok, but it’s a hard slog, isn’t it? It’s just so important to get things checked out if there is even any suspicion of cancer-I have a friend who went from a clear smear to a stage 2b diagnosis in 6 months and was similar to your own situation. Happily she is fine now, several years later after her treatment, but it shows how things can be.
Not being listened to, or taken seriously by a gp, just puts some off from speaking up, and I have learnt over the years (with other things apart from my cancer) to speak up (I was misdiagnosed over the phone last year with a life threatening condition and it was an awful time for me, but the gp wouldn’t even see me in person at the time) I learned to speak up the hard way! So I would always encourage everyone to do that when something clearly isn’t right. If a gp fobs you off, ask to get another opinion. I won’t ever see my particular gp again, I know that!
I’m doing ok thank you, but following my misdiagnosis last year I have had a difficult year of dealing with other problems, where my surgery probably now sees me as a “difficult” patient. I couldn’t care less-my health is more important than how they see me.
Sarah xx
Hi Lillyanne and thanks for the update.
It’s astonishing really that you are not getting any answers for this, especially since bleeding after sex is a frequently reported symptom of cervical cancer.
While it’s good news that your cervix looks healthy, there are other things to be considered. It isn’t normal to bleed every time after sex for example.
A “clear” smear doesn’t mean someone can’t have cervical cancer. If the test doesn’t indicate the presence of hpv, the cells aren’t tested further, but hpv can come and go-be dormant and not causing issues, or active when it can cause cell abnormalities so you can still have cervical cancer though a smear shows no hpv. In addition, not all cervical cancers are caused by hpv, although it is a small number.
Cervical cancer can “hide” further up the cervix and the brush used during a smear can miss it-I had adenocarcinoma which can start higher up and I’m not the only person I know who had an issue with it being missed.
I would not recommend relying on a smear test being confirmation that you definitely don’t have cervical cancer: it isn’t a diagnostic test for cancer-it’s a screening for the hpv virus.
You have symptoms which need to be investigated, and I hope if you see a gp you will be referred to a gynaecologist for further in investigations. I am not trying to frighten you or suggest you have cervical cancer, but for your own peace of mind I think you should push for answers.
Sarah xx
