Clutching at straws

Hello. I haven't received a diagnosis yet I am awaiting a scope camera into my bladder. Had one appointment but they were too busy to see me so awaiting a priority appointment but that was 2 months ago. For the past eight years I have had terrible pain when urinating it's worse around the time of my irregular periods. The symptoms come and go but every time it comes back it's comes back stronger and lasts for months. I'm perhaps clutching at straws with self diagnosis, but the more I read the more I can relate to the symptoms. The pain I have experienced is very severe and back and pelvic pain is constant. I have lost all faith in the NHS and am sick of being fobbed off. I have three children 9,17 and 19. I do not experience pain during sex. Just wanted to put this in here as I feel so lonely and agonised 😔

2 Replies

  • There are so many symptoms of endometriosis as there are so many places in our bodies that the cells can attach too. Pain during sex is just one symptom out of many. You could wait to see how the cystoscopy goes or ask for a referral to a consultant with a specialist endometriosis centre. Regarding endo the cystoscopy will only show endometriosis if its penetrated the bladder wall. You could still have endometriosis on the outside of the bladder and it wouldn't show up on the inside of the bladder. If you suspect endo then I would definitely ask your GP to refer you to a specialist endo centre or at the least a gynaecologist who specialises in endometriosis. It does take an awfully long time to diagnose endo unfortunately the average is 7.5 years. So you're not alone, there's an awful lot of women here who have suffered for years before finding answers. it sucks but remember you are not alone x

    Also it might be worth keeping a diary of symptoms as it'll help when seeing a specialist

  • Hi, my main symptoms were pain when urinating during my period. I had a cystoscopy which was normal....after talking to the urologist about my symptoms he suggested that it was endometriosis. I then had an MRI scan which showed cysts on my bladder. The urologist wrote to me GP to tell them to refer me to gynae. I have since been seen by gynae and had a laproscopy which found severe endometriosis across my pelvis and multiple cysts and adhesions. I think my the urologist i had was very good and thats why i got a quick referral to gynae. This has all happened since just before christmas, so i think I'm quite lucky I've got a diagnosis quickly compared to a lot of people.

    I would stress to your GP and the urologist you will see for the cystoscopy the symptoms and how the symptoms are worsened during period which would suggest something gynaecological and you can be referred.

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