Cystitis

Hi ladies!

So, I've been suffering with possible endo related symptoms for years now on and off. My main symptoms are: pain during and after sex, random bleeding during and after sex, lower abdo pain that is like pulling or tugging (it's agony), fatigue, bowel irregularities and I'm sure there's more. I have a lap booked for 11th sep after a hysteroscopy and scans etc which came back clear.

However, my main gripe is the cystitis! It's literally driving me mad. If I have sex with my bf during my period, I am almost guaranteed to get it and it's awful - it lasts for days even thought I don't actually have an infection. Does anyone else suffer with this?

2 Replies

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  • It sounds like what I have which is called interstitial cystitis. It is an incurable bladder disease described as "manageable":

    "Interstitial cystitis (IC) is a condition that results in recurring discomfort or pain in the bladder and the surrounding pelvic region. The symptoms vary from case to case and even in the same individual. People may experience mild discomfort, pressure, tenderness, or intense pain in the bladder and pelvic area. Symptoms may include an urgent need to urinate, a frequent need to urinate, or a combination of these symptoms. Pain may change in intensity as the bladder fills with urine or as it empties. Women’s symptoms often get worse during menstruation. They may sometimes experience pain during vaginal intercourse.

    Because IC varies so much in symptoms and severity, most researchers believe it is not one, but several diseases. In recent years, scientists have started to use the terms bladder pain syndrome (BPS) or painful bladder syndrome (PBS) to describe cases with painful urinary symptoms that may not meet the strictest definition of IC. The term IC/PBS includes all cases of urinary pain that can’t be attributed to other causes, such as infection or urinary stones. The term interstitial cystitis, or IC, is used alone when describing cases that meet all of the IC criteria established by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)."

    I control both my endo and IC with diet as I don't want to take all the hormones for it. They normally offer low dose anti deppressants which work as pain killers for IC but again as I didn't want to take them I have had to learn to control it with diet. Caffeine is a massave one that you need to leave out along with ciggerettes, anything acidic (cranberry juice IS NOT your friend).

    I find although I need to take strong pain killers on my period this can also make the symptoms worse and the only thing that really brings comfort is a hot water bottle and baths.

    Sorry I can't give you much help other than a name, I have just been diagnosed and feel quite down about it all and am experimenting withself-help options currently..

    When I had my laparoscopy for endometriosis they did a full bladder dystension which did relieve the symptoms for a while. I believe it is quite an uncommon disease so you may want to thik about going to a bladder specialist like I did.

    I hopeyou get some relief and get it sorted though!

    Best wishes xxxx

  • Thank you for the reply! I have been leaning towards thinking it was interstitial cystitis too but was going to wait to see the results of the lap before I chase up any more referrals. I think my GP is sick of the sight of me!

    Why did they do a full bladder distension? How did it help if you don't mind me asking?

    Thanks again!

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