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cg08

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Posts: 4
Reply with quote  #1 
Hello,

I am new here so this is my first post. 

I need your advice! I have just in the past couple of days been diagnosed with Chronic Cystitis. I am devestated. I have been on antibiotics for the past 3 months and nothing has helped so I have been told it will not go away. I am being investigated for other underlying problems such as IC. 

I would like your advice on how everyone copes with their sex lives and children with suffering from this condition.

I am so scared to have sex again and have not had sex with my boyfriend for 4 months now. How do you go about living a normal life with your partners? 

I know this is also a silly question but what about having children? Will having this condition affect my ability to have children?

Please could i have a reply, I am 23 and quite scared about my future now. 
Moderatorsusan

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Posts: 1,164
Reply with quote  #2 
Hello and firstly welcome to the COB forum. We can give you lots of help and advice to work through this distressing and upsetting illness.

I'm so sorry you have been suffering. It's just awful when it comes out of the blue and simply won't go away however much you do. Can I ask if you have actually had any bugs diagnosed in your urine sample as there is no point putting you on a course of antibiotics without knowing what you are treating and whether they are the right abs. Ask your GP to see what has been identified. As for further investigations, these may involve a cystoscopy which is a camera in your bladder to have a look. You can also have an X-ray and ultrasound of your kidneys and bladder just to check for any kinks or abnormalities. Personally I would press the doctor to make sure you have the right infection diagnosis first before any internal investigations.

There are some things you can do to help yourself. Firstly, have you tried an IC diet? Sometimes people find that certain foods or alcohol can be a trigger that irritate their bladder and that by cutting them out things improve tremendously. If you call the COB office on Wednesday when they reopen they can send you some advice sheets. Secondly your form of birth control can sometimes be an issue. If it's a progesterone only pill then this reduces the oestrogen levels which are vital for keeping your womb and bladder healthy and low oestrogen allow bugs to flourish and let bacteria in. You are young but it can affect women at any age and may be worth thinking about. Additionally do you suffer from thrush or bacterial vaginosis? This can often lead to cystitis like symptoms and a course of thrush treatment or antibiotics for the BV may help. Get to your local sexual health clinic and ask to be swabbed for both - I know it's a bit embarassing but they can help and the results come back quicker than visiting your GP. Other things to avoid are bubble baths and any products down below that are perfumed. They are real irritants. No g strings as the bugs work their way down the string from your bottom to your urethra. Also no tight jeans at the mo and wear cotton underwear. Also no swimming pools, hot tubs or jacuzzis, they are full of bugs and just encourage infections and shower don't bath. Also please google bottle washing by Angela Kilmartin. This is a procedure you need to follow after every bowel movement and before and after sex.

To answer your fears. Please please don't think you will have this for life and it will certainly not affect your ability to have children. It is very difficult re the sex side of things and if I am perfectly honest it's probably best to abstain until you get to the bottom of your infection. I know it's really difficult especially when you are young. I had a hellish time at uni and in my early twenties with constant infections due to sex and had to abstain and guess what - they went away, I allowed my bladder to heal for a little while and it made a huge difference. If you do want to have sex, make sure you don't use positions that can irritate your bladder, use lots of un scented lubrication, bottle wash before and after sex. Pee before and after sex (drink a pint of water beforehand and afterwards to keep your bladder flushed). Ask your boyfriend to throughly wash his hands and his genitals - boring I know but vital to keep bugs away.

I know others will contribute their two pennies worth and as I say if you call the COB office from Wednesday onwards they can offer more advice. Please don't be afraid, by actively seeking out help from this site and doing some research yourself, you will find help and advice.
cg08

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Posts: 4
Reply with quote  #3 
Thank you for the reply.

I have had urine tests done, bloody has been found in my urine but no bacteria. I am on the NHS waiting list for a cystoctapy and a biopsy under GA. I am also going to receive a scan.

I have suffered for years from UTI's but never had one that antibiotics has not cleared.

I don't want to have sex when I am like this. I just feel guilty that I can do it. I was told by the consultant at the hospital it's chronic cystitis and that it won't go away. So does his mean I have to live day in and out with the symptoms of a UTI because then I really don't see me being able to have sex again. My boyfriend is being so supportive but I am finding this very hard.
Moderatorsusan

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Posts: 1,164
Reply with quote  #4 
Hi there. Blood in your urine is indicative of infection. Your specialist is wise to order further tests just to make sure there is not a problem with your kidneys or bladder functionally. If you call the COB on Wednesday there are two specialists who can investigate chronic cystitis further as they have more advanced testing methods than the standard NHS options. They have found bacteria in the majority of those who have sought treatment after many insignificant growth or no growth diagnosis on the NHS.

Of course you don't feel like having sex when you feel like this. We all do. It's horrible and please don't feel guilty. You are right to abstain for the time being until the investigations and tests are done. I wish I could magic away your symptoms for you and please don't think this is you for the rest of your life. There will be an explanation for this. Don't forget there is always the outercourse option. It's not penetrative sex but intimacy can involve other options than this.

Please call the office on Wednesday. They are really helpful with a number of sufferers amongst the staff so will totally sympathise with you. They can help with the two specialists I mention above, hints and tips with regard to diet and lifestyle and will talk to you for as long as you need it.

cg08

Registered:
Posts: 4
Reply with quote  #5 
Thank you for your help. I really appreciate it.
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