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11 weeks of pain after endometrial biopsy/hysteroscopy please help

LovelyLu
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Hi

I had an endometrial biopsy and hysteroscopy 11 weeks ago, I have since been diagnosed with Stage 1 endometrial cancer 9 weeks ago. My issue is for the past 11 weeks I have been experiencing left sided internal vaginal pain ever since the biopsy. The pain is like a deep throbbing ache and it’s constant all day everyday for 11 weeks now and is worse when sitting down. It’s severely affecting my quality of life and it’s causing me so much added stress.

I’ve been to my GP 3 times about the issue, I have mentioned it to my gynae oncologist surgeon and also to my gynae oncology nurse. Everyone keeps dismissing my symptoms, I have had the pain blamed on Thrush, Diabetes, Fibromyalgia, no one is taking me seriously and I am left in all this pain for all this time. I have had an ultrasound which did not show anything, but was incredibly painful when the sonographer moved the probe inside the left of my vagina. I have had no pelvic exam by a gynaecologist. I spoke to my gynae nurse again today to ask for a pelvic exam, she told me I have to wait another 6 weeks till I can have a pelvic exam and there is no sooner appointment. Surely this is not right? Given I have been in pain for all this time and the cause is still unknown.

I have felt I’ve had no choice but to google and try and research my own symptoms, which says it could be a compressed nerve causing the pain or a pelvic floor muscle spasm, but without being examined and taken seriously I don’t know.

I am feeling very alone and unsupported in all of this and I don’t know who to turn to for support. I was going to email my cancer nurse tomorrow and explain I don’t feel my care is being handled correctly and explain my concerns, but I am very worried this will make things worse for me and I will be deemed a difficult patient for complaining. I just want to be listened to and for this pain to be diagnosed and treated. Any advice please?

Many thanks

Lu

Parents

  • Hi Lu,

    Thank you for posting. I'm sorry to hear about your recent diagnosis of stage 1 endometrial cancer and the ongoing pain you've been experiencing since your hysteroscopy. It sounds like this has been a very difficult and frustrating time for you.

    Understandably, you're upset, especially when you feel your concerns aren't being fully heard. Living with pain for 11 weeks without clear answers can be very distressing.

    Although you feel hesitant about contacting your specialist nurse again, it may be worth letting them know how much the pain is affecting you and that you continue to feel worried. You mentioned that you have asked for a gynaecology examination but have been told it will be six weeks before this can happen. I appreciate how difficult that must be to hear when you are already worried and looking for answers. Although waiting times can sometimes be unavoidable, it may be worth contacting the department to ask whether there is a cancellation list or whether an earlier appointment might become available.

    If you still feel your concerns are not being addressed, you may want to contact PALS (Patient Advice and Liaison Service), who can offer confidential advice and support with concerns about NHS care.

    You mentioned that tests have not yet found a cause for the pain. While this uncertainty can be very frustrating, it does not make your pain any less real. I wondered whether you have been offered any support with pain management. Sometimes it can take a few adjustments to find the most effective pain relief.

    I hope you can get some answers and support soon. Please feel free to get back to us. You can also speak with one of our nurses on 0808 800 4040, Monday to Friday, 9am to 5pm, if you'd like to talk things through.

    Take care

    Jemma

Reply

  • Hi Lu,

    Thank you for posting. I'm sorry to hear about your recent diagnosis of stage 1 endometrial cancer and the ongoing pain you've been experiencing since your hysteroscopy. It sounds like this has been a very difficult and frustrating time for you.

    Understandably, you're upset, especially when you feel your concerns aren't being fully heard. Living with pain for 11 weeks without clear answers can be very distressing.

    Although you feel hesitant about contacting your specialist nurse again, it may be worth letting them know how much the pain is affecting you and that you continue to feel worried. You mentioned that you have asked for a gynaecology examination but have been told it will be six weeks before this can happen. I appreciate how difficult that must be to hear when you are already worried and looking for answers. Although waiting times can sometimes be unavoidable, it may be worth contacting the department to ask whether there is a cancellation list or whether an earlier appointment might become available.

    If you still feel your concerns are not being addressed, you may want to contact PALS (Patient Advice and Liaison Service), who can offer confidential advice and support with concerns about NHS care.

    You mentioned that tests have not yet found a cause for the pain. While this uncertainty can be very frustrating, it does not make your pain any less real. I wondered whether you have been offered any support with pain management. Sometimes it can take a few adjustments to find the most effective pain relief.

    I hope you can get some answers and support soon. Please feel free to get back to us. You can also speak with one of our nurses on 0808 800 4040, Monday to Friday, 9am to 5pm, if you'd like to talk things through.

    Take care

    Jemma

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