HSIL and bleeding

I started spotting a couple months ago, and was bleeding after doing the deed with my husband. I also hadn’t gotten my period in 2 months at that point which I thought was weird. I got an appointment with my doctor because the spotting was weird to me, but couldn’t get an appointment for another month. Once I got my appointment he recommended I have a pap test. I am 32 and have never had one before which is my fault. I have extreme anxiety and I remember putting it off in the past because I was scared. I got the pap test done, and right after I began to bleed heavily with clots for at least a month after that. I went back to my GP to get checked put and the nurse checked my cervix and said everything looked fine as far as she could see, and booked an ultrasound just in case. So fast forward to this week, and I got a call saying I have HSIL and the bleeding on my.ultrasound was coming from my cervix. So far I have bled this whole month up until a couple days ago as well. I am married and have 2 young children and I am just terrified I am going to have late stage CC and leave them without a mom… Has anyone else had this experience or a similar one and turned out fine?

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Anyone?

Hi @Maxpower

I’m sorry nobody replied to you originally x

High grade squamous intraepithelial lesion (HSIL) is found on the surface of the cervix, these are severe changes but they arnt cancer, when CC is advanced enough to cause symptoms (early stage has no symptoms) it can be seen with the naked eye without the need to magnify the cervix so your GP not seeing anything visually makes it highly unlikely your symptoms are down to advanced CC… if there was something hiding further up, its likely the scan would have picked it up

I was being monitored for CIN1 in 2020 my biopsy at the time also confirmed a cervical ectropion, a few months later i started spotting, bleeding between periods and they were lasting longer than normal the worst was when i bled for 5 weeks straight, they became very irregular and heavy, i even had groin lymph nodes popping up lol so panic sets in my GP puts it down to the ectropion after bloods etc come back fine… i had my follow up where i ultimately needed to have a LLETZ as my cells had upgraded to high grade CIN3… fully convinced myself this was the end thinking it must be atleast stage 3 with everything going on, i was treated in march22 only the 1 treatment was needed and it returned precancerous changes only no cancer despite my symptoms… my follow up smear at 6 months in september was HPV- so im back on the usual recalls xx

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@Tinkerbelle29 Thank you so much for responding :slight_smile: I’ve gotten myself so worked up thinking that this is the end of me. I’m hoping that mine turns out to be like your experience. I can’t even look at my kids without crying… I keep thinking they are going to grow up without a mom. If the bleeding and back pain I have is from cancer it would have to be late stage so that is why I am so scared.

Hi Maxpower

I hadn’t had a smear test for 12 years when I was diagnosed with cervical cancer. My symptoms included heavy bleeding with clots and on examination I had clearly visible abnormalities on my cervix. My diagnosis was stage 2A1 squamous cell cc; not ideal but very cureable. I’m nearly 6 years post treatment and so far so good.

x

@Jazza That is scary, but also good to know that it is treatable. I hope you are feeling a lot better these days. Did you get HSIL, or CIN3 on your pap smear, and they found it after colposopy and biopsy? I am pretty scared right now because I have 2 kids to look after and even treatment wouls be very hard on my family. What treatment did you have for your cc if you don’t mind me asking?

Hi Maxpower

The last smear I had was in 2004 and it was normal (no cell abnormalities - wasn’t tested for HPV) as were all the several smears I had before then. I developed my cc symptoms late 2016. I bypassed having a smear (PAP) because I couldn’t tolerate the procedure, so was examined under GA whereupon the abnormalities on my cervix were seen and biopsies taken there and then. When I came round from the GA the Dr told me that from the appearance of my cervix it was very likely I had cervical cancer, which proved to be the case.

Treatment wise: histology results, MRI and PET scans indicated I was stage 1B1 old Figo (1B2 new Figo) so I had a pelvic lymphadenectomy which showed my lymph nodes were clear. I then had a radical hysterectomy. Unfortunately post op histology indicated I was stage 2A1 with a significant risk for recuurrence due to a close margin, lymphovascular space invasion and perineural invasion. So I went on to have chemo-radiotherapy.

It’s all very scary, especially at the beginning, when emotions are running high and there is so much fear around the unknown.

x

@Jazza I really hope that I don’t have cervical cancer. I am really scared of my kids not having a mom… I really hope if I do that it’s treatable and I will live. I’m hopeful that if it is, that I will have caught it at an early stage so that treatment will work, but I’m scared because I’m bleeding on and off that I caught it to late.

I went to the gynecologist today… She said my cervix doesn’t look right and that she’s almost 100% sure I have cancer. I’ve been reffered to a cancer clinic… I bled all over the table when she put the speculum in, and she had to cauterize the bleeding. After that she said my cervix doesn’t look right at all and there is a mass on it. I’m absoluteoly terrified… I didn’t want to die this young and leave my kids behind… I can’t stop crying…

@Maxpower im so sorry to hear your going through all this im awaiting my biopsies i had a Leep procedure last mon they told me i had minor changes an would monitor but i chose to remove as have had very bad anxiety with it all an still do. Im not sure my words of advice will help but i just wanted to reach out i know you were told the worst yest BUT wait til see what is put on paper after results at min you dont know if or how or what or when an they will have to prepare you for the worst only because its there job to be honest take a deep breath the positive is your getting sorted out an i advise you to ring the support helpline on here as theyve been brill an everything is based on facts. You are not alone feel free to chat to me anytime worst thing u can do is overthink going to do you no good did they say how long for results?xxx

@Maxpower ps i overthink an i know its not easy :pensive: is your own doctor any good at speaking with i found mine a good support too with all this. Xx

Hi Maxpower

I’m sorry to hear your latest news. Just over 6 years ago I was in a similar situation, although I didn’t have young children. I had an exam and next I know is the gynae telling me she could see abnormalities on my cervix - very likely cancer, which it was. No one can know or prepare for what that feels like unless they’ve experienced it; I was in pieces at the time.

Where you are at the moment is possibly the most difficult in terms of emotions and the mind can lead us to fear the worst. I found it easier when I had my staging and treatment plan because then I knew what I was dealing with and had something real to focus on. The treatments can be challenging but they’re doable and, whilst there can be no guarantees, are successful for the majority of women.

x

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She rushed the biopsy she took so it comes back in a week. I was bleeding so much she could barely get a biopsy. She said hopefully it was a good enough sample that she got. I think she’s referring me to the cancer clinic so they can get a better look. That and she said she’s pretty positive it’s cancer. The thing that made me the most anxious is when she said " well this kind of cancer is very treatable, but yours looks like it’s been there for a long time so I don’t know" that really scared me. Also thank you for replying to my post yesterday, it does make me feel a but better.

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Fingers crossed my staging goes well and It hasn’t spread into lymph nodes ect. Your right being in limbo waiting around is really scary because I have no idea what is going on or my stage or treatment yet.

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@Maxpower i didnt want to read an run of course i wanted to send you some kind of supportive message im awaiting biopsy results altho i went ahead with Lletz on mon to be safe an i get how scary an frightening it all is i have kids too. I dont think that was very helpful of that person doing your examination to say such a thing esp with how frightened you are i know they have to be honest but handle with compassion at least. All i can say to you is youve got this even tho you think you dont an to wait an see what the clinic tells you the other lady commenting sounds very supportive to you too. An you always,this forum to chat to lots of others for support sometimes its easier chatting to a stranger xx