Health Organization for Pudendal Education

Hello,

I am posting this on behalf of my mum who suffered for years with pudendal nerve neuralgia. The symptoms eased when she got put on HRT for her menopause however, she recently got diagnosed with breast cancer and has started hormone treatment for the next 5-8 years and because this treatment supresses oestrogen (as I understand it , the hormone that is causing her cancer to grow) her pudendal nerve neuralgia has come back with a vengeance. She is in agony and does not know what to do. Her doctor said she must just put up with the pain because she needs these hormones to stop the cancer from coming back.
Anyone go through anything similar or know of a possible treatment to ease her pain. She is considering taking her chances at having cancer again rather than living in this pain. I should probably also mention, we live in Switzerland and I don't think they know as much about PN as they do in the UK or the US.

Thanks for your help.

That is a really difficult position to be in. There are other options your mom could try -- like neurostimulation or an intrathecal pain pump if she doesn't want to take oral opioids. I don't think she should have to put up with the pain. Has your mom seen any of the Swiss doctors listed at the following link? http://www.pudendalhope.info/node/57#SW

Violet

Hi bongosis, welcome to the forum. Really sorry to hear of your mom, i am not an expert on this subject but hope you get some good advice from other group members. Surely UK has convenient and better options for PN.

Very touching story

bongosis wrote:Hello,

I am posting this on behalf of my mum who suffered for years with pudendal nerve neuralgia. The symptoms eased when she got put on HRT for her menopause however, she recently got diagnosed with breast cancer and has startedhormone treatment for the next 5-8 years and because this treatment supresses oestrogen (as I understand it , the hormone that is causing her cancer to grow) her pudendal nerve neuralgia has come back with a vengeance. She is in agony and does not know what to do. Her doctor said she must just put up with the pain because she needs these hormones to stop the cancer from coming back.
Anyone go through anything similar or know of a possible treatment to ease her pain. She is considering taking her chances at having cancer again rather than living in this pain. I should probably also mention, we live in Switzerland and I don't think they know as much about PN as they do in the UK or the US.

Thanks for your help.

Hope your mom will get well soon

Ablation of breaast like Angelina Jolie.

A very difficult situation. Do have the spefici details about her breast cancer diagnosis? I have never heard of PN getting much better with estrogen treatment and it doesn't make sense to me. Do you know what the cause of pudendal symptoms were beileved to be? I am of the opinion that she should have choices about her life, but most oncologists do not see things that way. I wonder if her oncologist would be open to using the third generation selective estrogen modulator Bazedoxifene, which acts like Tamoxifen (likely what she is taking) as part of her breast cancer therapy. It is an anti-estrogen in the breast, but acts like estrogen in other tissues. It is available in Switzerland as Conbriza® and Viviant™. It doesn't have the evidence of Tamoxifen, but might be a compromise with informed consent....at least while she is searching for other effective treatments.