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Melissa_Parton

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Reply with quote  #1 
Hello!

I am brand new to this forum but am here after 2 years of suffering from cystitis. I started suffering from it when I started to date my now husband - it was pretty immediate. I would always been on a course of antibiotics or at the hospital because unfortunately my infection tends to progress pretty quickly and I start passing blood within an hour of my symptoms beginning. It was all very frightening, I had to have a kidney and bladder ultrasound where everything seemed okay but my kidneys were not in the best shape. I have been told by countless doctors that I will have to live with this for the rest of my life and manage it as best I can.

I have tried the IC diet for about 6 months but found it did not help. I pee before and after and make sure both myself and my husband are thoroughly clean. The last resort I came to was after having my urine test because I didn't feel very well for about 3 weeks and my urine showed signs of cystitis - even when not having sex I seemed to be on the brink of an infection. My doctor decided to prescribe a repeat prescription of Nitrofurantoin to take every time after sex. 

Now, this is where my next problem has started - no matter what I do, how I take the medicine (with or without food etc.) I feel so nauseous for at least 3 hours after taking the antibiotic and am on the verge of throwing up every time after sex. Because of this, for the last several months my sex drive has dropped drastically because I am either too scared to have sex and be sick from the antibiotic I HAVE to take or I am too scared from getting cystitis if I don't take this horrible antibiotic. 

I am at a complete loss for what to do. I feel so down and abnormal, this whole experience and being ill one way or the other after sex has put up a mental wall in my mind when it comes to sex and I just don't know what to do. I have been to my GP and she has prescribed me Trimethoprim instead as she believes I won't experience the same side effects but I am too frightened to have sex and test it. If it doesn't work I will just have no plan. 

I wanted to know if anyone else has felt like this about sex because of cystitis and the antibiotics after intercourse to treat it and what you did to overcome the mental obstacle? I would really appreciate any help, advise and new suggestions - I can't carry on like this [frown]
Moderatorsusan

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Reply with quote  #2 
Melissa

So sorry to read about this. Hopefully we can give you some guidance here.

Can I ask if your cultures always come back positive from your GP and has the lab against specific antibiotics. There is no point in giving you short courses of antibiotics if they are not targeting the specific bugs found in your samples as there is a lot of antibiotic resistance now. I would ask your GP if they have done this. If not, there are two doctors here in the UK treating ladies with chronic and persistent infections often finding bugs where standard NHS has not. The COB office can provide you with further details.

I see that you are following the IC diet. Stick with it as it will help particularly as you are taking antibiotics. Have you been tested for thrush or BV? Both can cause cystitis like symptoms and unfortunately antibiotics can feed the sugars that candida feeds off in your body setting up a vicious cycle. Avoid alcohol as well as this is a horrid bladder irritant. Try going gluten free and wheat free for a while to see if it helps.

You mention that you and your husband are scrupulous before and after sex. It might be worth reading Angela Kilmartin's book on cystitis for further tips. She suffered dreadful problems when first married and developed her bottle washing technique to be used not only during sex but also for general cleanliness. There are other very useful techniques in there. Worth a read.

Nitro is a very bladder specific antibiotic but I know some women have struggled with nausea on it because it is quite acidic. Have you tried it with food rather than on an empty stomach. I would be wary about Trimethoprim as some many bugs are resistant to it and unless your GP has results saying your bugs are susceptible to it, don't take abs blind.

Finally some general tips

Avoid tight jeans, wear cotton panties, no g strings, no perfumed bubble bath or intimate washes, no douching, sanitary towels not tampons as bugs will live on the string, unperfumed fabric softener in your laundry. Absolutely no baths, shower only and finally and this is horrible, for the time being no sex. I know this is unbelievably tough but you are simply making things worse each time, bashing sore tissue that is chronically inflammed and possibly stirring and adding bugs into your bladder and urethra. Try some outercourse in the meantime. It won't be forever and I'm sure hubby really doesn't want to see you so upset each time you have sex.

Try these tips above. I would ring the office first and get the specialist details then call your GP and request copies of your urine test results. If they come back without being cultured against specific abs and do not identify bugs then get a broth culture done with one of the specialists. Be your own detective and get on the case and be proactive using some of the tips above as well. You will feel better in taking steps for your own health rather than being in the hands of your GP and continually getting sick.

Try not to stress, lots of women struggle with sexual cystitis and often there is a straightforward answer and with a few lifestyle/personal changes and some detective work, hopefully this will be sorted quickly.



ModeratorKate

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Reply with quote  #3 
Hello Melissa.
Welcome to our Forums, I do hope you will find some support and understanding of this dreadful dis-ease.
Moderator Susan has given you some excellent advice.

Do also read previous posts on here, you will discover several members suffer from problems with intercourse, and try various options including taking AB's ,and find them successful.Always would suggest if you are having nasty side effects you ring your Doc back straight away.

The other thing is do join COB as we have some wonderful information and extra support available, and the advice line is available 24/7 and will always telephone you back.

Also read through the COB website, again you will find some helpful information.

Unfortunately we all know that this dis-ease does not follow a set format, and what can be good for one person is totally unsuitable for someone else.

Do keep posting as we all understand how desperate this dis-ease can be.We will always. listen.
Kind regards
Kate




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This Forum is provided by Bladder Health UK and is intended as a place for Sufferers of Interstitial Cystitis, Bacterial Cystitis and Over Active Bladder, together with their family & friends to gather, online in a positive exchange.

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