Anyone else suffer with chronic cystitis?

I've been getting this loads lately. When I say lately, I mean for the past year and a half. In the first 12 months I had it 13 times!!!!!!!!!!! I've been on antibiotics so many times that my GP is worried about me building a resistance to them :( In the past year and a half I'v probably had it around 15 or 16 times. Some times mild, but mainly really bad :(

This also massively coincided with going on the mini pill.

The doctors have said that the pill would not cause it, and neither the endo unless that was near my bladder. When I had my laparoscopy the surgeon said he couldn't see any reason why my endo would be causing it as although I was riddled with it, it wasn't near my bladder enough to cause this. He jokingly said it was my boyfriends fault.

Now, I have to say - I've started peeing after sex now. And last night I forgot too as we were having sex and I had to stop it due to pain (this is one of the many symptoms I was getting in order to finally get by diagnostic lap. and since my op I've not really had pain but it was but in force last night). Anyways, I now have mild cystitis :( I was hoping it wouldn't return as not had it for a while.

Does anyone else get this? Any help or advice would be great thanks as my GP doesn't know what to do and I can't keep living like this, it's awful :'(

24 Replies

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  • I would ask your GP for a referral to a Uroligist. During my lap a couple of months ago they checked the inside of my bladder and said it was slightly inflamed which is a sign of Intersitial Cystitus, I was then referred to a Uroligist. Thankfully the pain I had has settled down a bit now so I don't need any more treatment.

    Do you notice that certain food and drinks make it worse? I have cut out caffeine, fizzy drinks and cut down on alcohol and this seemed to help my symptoms

    Not saying this is the same as yours but might be best to be referred to a specialist in this area if you are in a lot of pain. Hope you get to the bottom of it soon xx

  • Hi,

    Sorry to hear that you're in pain, I had chronic cystitis for 2 years and was told it was IC when they checked inside my bladder. I had bleeding in urine, stabbing pains and burning sensation in my bladder. Apparently it was not either of them I had biopsy taken and tested, the surgeon then burned the lumps off. I was still in agony nothing changed. I had to go see a private specialist and he discovered that I had massive endo wedged deep inside my bladder and sitting on top and across my bladder and was attached to both my ovaries and bowels. The private surgeon removed all the endo and adhesions and unstuck my organs, he told me my insides were a mess and he was surprised that the NHS surgeons missed it all.

    After a year and a half I was living my life pain free I was happy for the first time but then my endo, adhesions have all come back in the same place along with bladder infections, bleeding and bowel problems, and I will be having another operation.

    Try and get a 3D MRI scan done that's what I had done and that's when they found out how bad endo was. So I was actually taking antibiotics for 2 years for no reason.

    Sweety.

  • Hi,

    Thanks for your reply. What's an IC? Sorry!

    My endo was really bad too, had the diagnostic lap in April and surgeon had to cut loose my womb, fallopian tubes and ovaries as they were all stuck. He said he couldn't get rid of it all at that time. I have a follow up chat with him next month to see what I want to do. See if it's helped (it hasn't really) and see if I want a hysterectomy - that's what he recommended. I just don't know what I want to do though.

    I have an appt with my Dr in a week and a half to discuss my mini pill - so will talk to him about it. He won't help though as seen him numerous times about it now. I had a scan back in Nov and all looked normal. Thing is, I'm definitely not making this up and it keeps happening. Surely it can't be just bacteria each time...? My boyfriend washes beforehand!!

    Really getting me down now.

  • Hi, you're welcome,

    IC is Intersitial Cystitis.

    Oh dear you have had a rough time just like me. I had a partial hystercretomy done a few years ago, and let me tell you, that was my biggest mistake I was told it would get rid of the endo for good. So I went ahead with it as I've already had my children. The endo still came back.

    I've tried everything and nothing works for me, even painkillers don't work, I can't sleep, I can't eat solid foods. It's a real struggle for me.

    I know your not making it up, I've been where you are, no one believed me either, not hubby, not my mum, not even my GP. So I changed my GP and he helped me a lot and he was the one who recommended seeing a private doctor that he knew really well. I'm glad I changed my GP he listens to me and trys to understand. I've tried so many contriceptive pills nothing helps, my only option is to have an operation to remove endo, and recover and then have more operations and recover its a horrible circle that never ends.

    Sometimes nothing will show up in scans as endo can hide behind organs, it's only when they do operation that's when they find out how bad it is and what's causing your pain.

    My hubby washes himself as well as I do before sex but I'm still getting pains, sex is becoming very painful and I bleed a little afterwards for a few hours sometimes a day.

    Please don't rush into anything, do your research first before making a decision.

    Good luck.

    Sweety.

  • Take probiotics. Like yakult but a dosage that makes a difference in tablet form. I was recommended by a gynae years ago and it made all the difference. Also always go for a wee after sex. You might just have a short urethra.

    Obviously do progress with surgery and good luck with it. But in the mean time probio has changed my life. I buy it boots, Holland and Barrett or Amazon.

    Take care xxxx

  • Thanks :) I will try and look in to getting some, only I am really poor at present. Single Mum and all. I literally can't spend a penny (in both senses too) :(

  • Try it for a month you'll see the difference. I know what you mean about money but it's cheaper than prescriptions x

  • I get prescriptions free thankfully as on such a low income. I'd be even more broke otherwise as keep needing them :(

  • I used to but have found that drinking some diluted cranberry juice in my water every day seems to fix it. Hope it helps you.

  • I have stage 4 and cysts but the cranberry helps the bladder. My pod and bowel are another matter. Oh joy!

  • So do you think it could be endo causing it? I don't get why I keep getting them. It's making me so down :(

  • I used to get a lot too. I think a lot of things are linked to endo and the Drs don't always know. Migraines, leg pain, shoulder pain, stomach issues (both ways). Mood swings plus the pain as well. Basically our immune systems are at war with themselves.

  • Ah see, I get migraines (headache and evil stomach ones) shoulder pain and mood swings - mood swings so bad that I don't want my boyfriend anywhere near me and almost dump him :(

  • Hi

    Your doctor should of referred you to a urologist it certainly needs checked out if your not already resistant to antibiotics at this rate you will be,the urologist will probably be able to help a lot more than your gp In the mean time you could have a look at the Kathryn marsden homepage she has written a good piece about recurrent infections and use of antibiotics.Hope you get some relief soon.

    Treez

  • Thanks, I'm just waiting for my Dr surgery to open so I can get the duty Dr to call me back. The amount of times I've done this and they ALL sound shocked and say how this shouldn't keep happening....yet nothing is done other than that scan. I was pleased that nothing was found in that scan, but at the same time, disappointed - as was hoping they could work out a why to stop it. I'm feeling so down and tearful right now. I am a single Mum to a three year old and struggling to get her ready for preschool - and this happens a lot. She keeps asking "are you okay Mummy?" and it makes me feel awful, I really am trying not to show anything but it's hard.

    If it's not related to endo then I guess it's just another illness to contend with.... :'(

  • It's really awful I had a camera up into my bladder under general nothing was found but it was a relief to know that's it was nothing bad,but they can see whats going on that way,there's a product that I have tried called sweetcures super mannose that works quite well for me rather than antibiotics.It must be really hard being on your own and having this trouble.

    All the best treez

  • Thanks for all your responses. Spoken to Dr and he's prescribing me antibiotics, again. Just hope they work. Got to wait at least 2hrs to pick them up though, sucks.

    I've had a thought, and sorry to be crude but - whilst having sex on Sat night, the pain that I get, happens when he goes really deep. The surgeon said my womb was really tilted and he had to release it as the endo was pulling it. He said that hopefully that would help with the pain. But obviously, it hasn't. Any how - Sat night I could have carried on with sex had he not gone too deep so it was obviously that which was causing the pain. And then I wake up the next day and get cystitis - is this linked maybe?

  • Hi, I have been battling with endo for 10yrs and started to get bladder problems 6 yrs ago. I had bladder biopsy which showed chronic inflammation I was advised to start the interstitial cystitis diet avoiding certain foods which helped a little. I've had numerous surgeries for severe endo involving bowel and bladder, sadly ending with a hysterectomy at the end of 2014. This helped a lot of the pain, but unfortunately 2015 I had huge bladder issues, bleeding, constant uti symptoms and horrendous pain. I was referred by my gynaecologist to a urogynaecologistso more surgery! This year I started cystistat bladder instillations weekly to begin with and now monthly. It's been amazing I still get a few symptoms, normally when my next treatment is due. I just wish I'd found this treatment years ago!! I hope you find answers soon

  • Thanks. I just don't know how to go about getting it sorted. I've seen my GP so many times. Don't get me wrong, he is lovely - he just seems stumped and always gives me the impression that there's nothing further that he can do :(

  • Are you still under the care of a gynaecologist? I've been seeing mine since 2010 and luckily I see him via a private wing paid for by the nhs (just cos his waiting lists are huge) but this means I definitely see him and not junior staff so I get continuity of care (for years before I saw different Drs all the time). He was the one to refer me to urology gynaecologist and also he referred me to the chronic pain team who are also great. Maybe see if you gp can refer you to a gynaecologist who has a specialist interest in urology. I just wish I'd been referred to the specialist yrs before

  • Oh that's good to hear as I am - well I think I am. I saw/met him a few months back and he knew from what I told him and after examining me that I had endo. Well he was pretty certain. He then organised the diagnostic laparoscopy and his colleague did the procedure. He said he could see why it would be causing the UTIs. BUT I have a follow up appt with original specialist in July, to talk about my op and see if it's helped. Which I thought it had, for about a week. But it hasn't :( He'll probably want to discuss having a hysterectomy too and I really don't know what to do about that. I am 37 and have a 3 year old. Her Dad walked out on us when she was 1. I have a wonderful boyfriend who doesn't live with us but he's only 30 and I know he love a kid one day. But I really don't know if I want any more. I don't think I do - but do I want to take away that choice?

  • \lkzlSorry - I meant his colleague he did the op said he COULDN'T see why the endo would be causing the UTIs. I was so sad when he told me this. The endo he could explain all the pain, and the pain during sex and pooping - but not the UTIs

  • Oh, and that random bit at the start was my psycho kitty standing on my keyboard!!!

  • Do ask about bladder instillations when you go, I've learnt the hard way to be more pro active. Do some research and take info with you, they probably won't like it, but you don't know unless you ask. Re: hysterectomy, I had my daughter in 2005 via emergency c section which caused my endo, I was told to complete my family after my first lap in 2006. Unfortunately (long story and delay in diagnosis) I was diagnosed with asherman's which made my battle for a 2nd child even harder, after my multiple surgeries to try and achieve a pregnancy my gynaecologist told me in 2012 it probably was never going to happen and my endo was so severe a hysterectomy was probably the best solution to the pain etc. I was devastated i was 35. We've decided to try conservative treatment first mini pill, then prostap. I eventually admitted defeat and had my hysterectomy at the age of 37. It many ways I wish I had had it earlier, but it has also has had it downsides, one being, sorry tmi dryness down below, I've tried numerous gels etc but my hubby says it's not the same and mentally it's changed me, probably because I still wanted another child😓. On the positive people say I look so much better! Before I was so exhausted and low, my energy levels are much better. My pain is so much better, I still see the pain clinic as I have left flank pain which is believed to be nerve damage but it's under control. Unfortunately I still have deep pain to left groin on and off, my gynaecologist said the next step would be to remove my ovaries but I would require hrt because of my age. At the moment I'm done with surgery, I think. Good luck with your journey x x

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