Post treatment side effects - don’t give up!

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Hi - over the last 5-6 weeks I have been unable to walk far or sit for long due to really sore Vagina and a feeling of prolapse! It all started as healing from RT so never really got past that last part of soreness!

A GP said severe prolapse and referred me to a specialist (NHS dates available are past next summer), and A&E Gynea Consultants said Lichen Sclerosis.

I have been so worried about further Pelvic Cancer after Anal cancer treatment I could not settle with either or both of these situations.

Sadly AC and Radiotherapy specialist Macmillan Nurses didn’t want to know / couldn’t help so I worked towards seeing a private person. 5 weeks later and finally got an appt with a Urogyne Specialist Consultant! I have no prolapse and no LS and only need to use oestrogen cream every day for ever!

As I am in day 13 of no panic attacks and no tears I jumped in the air and danced out of the hospital!

My purpose for posting this is to say - always fight for more professional advice for yourself and others! I am so relieved so wanted to share hoping it helps others push for second or third opinions!

love Angie x

Irene75359 3 hours ago

Oh Angie

What a relief for you - sometimes we just have to self-advocate to get help and well done for not accepting the first diagnosis you had. And I will be really interested to hear how you get on with the oestrogen cream (mental note to self!)

I hope things only get better now!

Irene xx

Jaycee12 57 minutes ago

Hi Angie what good news for YOU! I know we are supposed to put all our trust in our doctors etc but sometimes I just wonder, they are only human beings and can make mistakes. I am so glad you preserved as we know our own bodies and what does not feel right. I think some oncologists just don’t know enough about this rare type of cancer and when we tell them what symptoms we are going through they just type it up on their computers but just cannot advise. I have sort have come to a dead end regarding my bowel issues that affect daily life and decisions but am grateful that I have absolutely no pain. My oncologist says I just have to get on with it. I to was prescribed estriol vaginal tablets but unfortunately still need to get up several times a night for a wee but have strong pelvic floor muscles I have ben told. It’s just a mystery to me but wish you all the best and hope it works for you.

Julie

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Post treatment side effects - don’t give up!