Incontinence after LLETZ procedure

I went in to have a poly removed from my cervix. Then when i was there the gynaecologist said there was also something else on the vaginal wall. She asked if I wanted her to take it out.

I asked what the implications were. She just said that if she didn't, they would see it on my next pelvic exam and keep referring me back. But she didn't say what it was. She gave me local anaesthetic and then cut it out.

It was very very painful. Afterwards, I thought I was bleeding a lot, but it wasn't blood but fluid. Then I kept needing the toilet. I couldn't seem to empty my bladder because I kept having to go back to the toilet. sometimes 3 times in an hour.

I am now 6 days later still losing a lot of clear fluid that smells like urine. But I did go back the day after the appointment after being sent to urgent care by 111. I waited 7 hours and got to see a gynaecologist, but she said it would not be urine because I was not getting increased frequency. I told her that I was, but I don 't know if she was just not listening, or didn't hear. I was titred by then and alone with two doctors, as my husband had gone to try and buy us some food.

I am waking in the night desperate for the toilet having leaked a lot. And I have been putting tissue on top of pads, so I can tell. There is clearly some fluid and small bits of blood, but there is also so much fluid that smells like wee, that if I add folded tissue on top, it gets soaked through in less than an hour. 

I am going out of my mind with anxiety. I am anxious about my impact on the environment by wearing pads, and it is awful feeling like I am wetting myself. They told me that I hadn't got a fistula or anything else 'google' told me it was, because it wouldn't happen that quickly. But couldn't the doctor have pierced a hole somewhere with the injection for the anaesthetic? Plus, some years back i went through IVF (unnsuccessful) and I had my bladder size extended.

I feel like no one believes me, and the doctors are not listening to my actual symptoms, and basing their assumptions on what is probably happening, and discounting things because I am not experiencing particular symptoms, but they are not listening to the fact that I AM experiencing the symptoms they are saying I am not experiencing.

I am suicidal. I don't want to live like this. No-one even said anything to me about this extra growth and this LLETZ procedure being a cancer test. I have never had anything show on a smear test. I don't understand what is happening. I just know that as soon as my bladder starts to fill, urine trickles out. And this was happening to some extent before the procedure but now it is much, much worse, and the volume is enormous. I feel frightened and like no-one will believe me. 

What should I do? I am keeping a diary.

Parents
  • Hi Natfink, 

    Thank you for coming here and sharing your story. I am so sorry to hear you have been through all this and that you have been having to deal with these issues since your LLETZ procedure and that you kept feeling the need to go to the toilet and losing all that fluid. I can imagine it has been so stressful for you and so exhausting to still be experiencing this days after the procedure. You did well to go back and see someone but I am sorry that you didn't get much help that day and that you didn't feel you were properly listened to. 

    Our nurses will respond to your query very soon but as they are not online on a Sunday I thought I would just pop by and say hello. You can also ring our nurses on this free number 0808 800 4040 Monday to Friday from 9am to 5pm if you would like to talk to someone. I can imagine this is creating a lot of anxiety and I would suggest you ring 111 again for advice on what to do and when you speak to 111, make sure you mention that the symptoms have persisted for 6 days and that it has been really difficult. It would be good if you managed to speak to a doctor today so you know exactly what is going on or you could also get in touch with the hospital and ask to speak to someone in the colposcopy unit, someone who would be familiar with the LLETZ and who would be able to examine you again. If things are bad, you could also go to A&E and from there they would be able to examine you and have access to a specialist. Hopefully you will have more luck this time and will get to talk to someone who can look into this properly and reassure you. Make sure you give them all the details you have listed here and that you are feeling so low about this. Hopefully you can get in touch with an expert at the hospital who can explain to you what this LLETZ procedure was about and explain everything thoroughly to you. It sounds like you haven't been given all the information and it is normal then to be anxious as a result of not really knowing what is going on. You deserve to understand everything and I hope that you manage to get some clarity on all this soon. Keeping a diary of symptoms and of how you are feeling is an excellent idea and all you need to do now is see if you can get through to someone at the hospital where you had the LLETZ done and explain that you are experiencing these issues. Make sure you mention that things have been worse since the procedure and any contextual information you can give including the fact you had your bladder extended a few years ago for the IVF might also be relevant or in any case useful to them. As this is affecting your mental wellbeing too as well as the physical discomfort you are experiencing, I think it's really important that you talk to someone today or as soon as you can and if possible try and speak to a different person and not to the same person who dismissed your symptoms so that you can have a second opinion. 

    You mentioned that this is making you feel really down and that is another reason why the sooner you see a medical expert the better it will be for you both on a physical and emotional level. If things get too much for you though, there is also the Samaritans helpline you can call at any time of day or night on 116 123 so don't hesitate to get in touch with them if you are feeling sad or simply want to offload. 

    Again our nurses will get back to you very soon with their more medical insights but I just wanted you to know that you are not alone and I hope that you will be seen very soon by a medical expert and that these issues are resolved quickly. 

    Best wishes, 

    Lucie, Cancer Chat Moderator

  • Hi Lucie, Thanks so much for coming back to me. I spoke to the Crisis team at my local mental health unit, and that really helped.I will try 111 and see what they suggest. Thanks again.

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