does anyone else have interstitial cystitis?

[LoveAndSqualor]

Wondering if anyone can help ... About two weeks ago, found I was needing to pee ALL the time. I went to the doctor's, thinking I had cystitis (though it felt different: no burning, just constant feeling of needing the loo), got antibiotics. They didn't help, so I went back on Monday, and he tested for a UTI, but all clear. He thought I might possibly have pelvic inflammatory disease (though highly unlikely, as no real chance of an STD) and stuck me on killer antibiotics for that. I've been taking them, but no better at all - constantly feeling like I need to pee, no relief when I do, general unomfortableness ... ugh. The other thing he mentioned was interstitial cystitis, and looking at the symptoms, it does seem a very close fit . I've also therefore cut out caffeine, alcohol, fruit juice and so on for a couple of days, but again no effect yet.

Does anyone else have it? How do you manage it? It's driving me NUTS at the moment and making me feel really miserable ...

@Mrbumpoid wow is that a working for you so far? Sadly I have done all those things with my doctors surgery, I’ve been in tears on numerous occasions in front of them and they just think I’m a hypochondriac because I have been in the past. They said if it was any cancer there would be tell tale signs in my bloods plus I have had ultrasounds as well as the cystoscopy. I only have 2 weeks to wait until the next cystoscopy. My big fear is that they will want to take biopsies! CBT is good I have had it in the past and it definitely helped along with travelling the world. It’s just so hard when you get something in your head and are convinced that’s what you have!

Yes it has worked so far so defo give it a try.

Two weeks isn't long apart from when you're anxious about something like you are and then it feels like a lifetime. I think they will do it and they may take a biopsy but you won't feel that any different to the cystoscopy. You can ask for a general anaesthetic if you prefer altho you may need to wait longer. Biopsy may be a horrible thought but something you need to do to get the answers!

If you can afford it, pay to go and see a private and very experienced urologist. That way you have a second opinion for peace of mind plus they'll take you seriously bc you've paid them. Consultations are usually about £100 but you can ask.

www.bmihealthcare.co.uk/brand?&channel=ppc&gclsrc=aw.ds&&gclid=Cj0KCQjwuZDtBRDvARIsAPXFx3AfdYdtGtAl1XrzeUJF378CP826VyRN8AFmJDWypoDTPmpyqxg9SAwaAm4NEALw_wcB

Try this link to BMI. They have online chat where you can ask about prices and each consultant has a bio on them. You can search for the closest to you. That's what I've done and I go for my second opinion tomorrow. I feel it's worth the money if it makes me less anxious.

Yes it has worked so far so defo give it a try.

Two weeks isn't long apart from when you're anxious about something like you are and then it feels like a lifetime. I think they will do it and they may take a biopsy but you won't feel that any different to the cystoscopy. You can ask for a general anaesthetic if you prefer altho you may need to wait longer. Biopsy may be a horrible thought but something you need to do to get the answers!

If you can afford it, pay to go and see a private and very experienced urologist. That way you have a second opinion for peace of mind plus they'll take you seriously bc you've paid them. Consultations are usually about £100 but you can ask.

www.bmihealthcare.co.uk/brand?&channel=ppc&gclsrc=aw.ds&&gclid=Cj0KCQjwuZDtBRDvARIsAPXFx3AfdYdtGtAl1XrzeUJF378CP826VyRN8AFmJDWypoDTPmpyqxg9SAwaAm4NEALw_wcB

Try this link to BMI. They have online chat where you can ask about prices and each consultant has a bio on them. You can search for the closest to you. That's what I've done and I go for my second opinion tomorrow. I feel it's worth the money if it makes me less anxious.

@Aleksandra1990 how are you today?

@Mrbumpoid Hi! I am feeling ok today thank you, how about you?

So at my local hospital, the private hospital is across the road and they are exactly the same consultants that do NHS and private work. I have had several private appointments, not with an actual urologist as my urologist is meant to be one of the top but I have had private ultrasounds and gynaecologist tests when I thought the problem might be in that department. Everything came back as normal but then I started having the urinary symptoms so I went private and had another ultrasound, kidneys and bladder on there all normal, even saw my bladder filling up with liquid. Today I’ve stated having lower back pain and sometimes pain in my kidney area too.

I hope you get on ok tomorrow! Please let me know.

Hi @Aleksandra1990
I can't remember whether you said you've had an ultrasound to check your kidneys yet? Kidney infection can create back pain and UTI symptoms. Have you called your GP to say you have these new symptoms? I would do that tomorrow first thing. Do you drs do same day phone backs? I would write down a list of all your worries and then go through them with your GP. Literally write them down and tick them off and ask them to explain everything. I.e. Can you tell me WHY you don't think it is cancer? etc etc. Just for peace of mind. Remember the brain can make pain worse and create symptoms. I am NOT saying you are making up symptoms at all. My pain is worse when I am tired and stressed.

I saw the private urologist today who is going to do a bladder instill where they put the medicine straight in. When I asked if I should continue the antibiotics, he said you may as well even if it is just doing something psychological where you think it's doing something.

@Mrbumpoid yes I have had an ultrasound on my kidneys about 6 weeks ago now. Numerous doctors have spoken to me over the phone or face to face and they say if it was anything sinister it would have shown by now on one of my tests, apparently in my bloods there would have been tell tale signs etc... my pain is definitely worse when I am anxious, I don’t know if that’s a coincidence or not?

So are they still treating you for an infection? Have you had the cystoscopy?

@Aleksandra1990

I really believe that pain is worse when anxious and/or stressed. Think about the fact people get headaches when they're stressed! I always used to get cystitis when rundown. It stopped after I had a cystoscopy and urethra dilation aged 20. It's all come back now since being in theatre three times during and after birth. I suppose that's also why 1) many people are put on antidepressants and it helps with interstitial cystitis AND many of the people with it also have anxiety and other such things.

He said he doesn't want to do the cystoscopy when it will just show either nothing or redness. He said it will be red bc I’m in so much pain so let's just have the bladder instill and be done with it!

@Mrbumpoid gosh it sounds like you’ve been through it! Isn’t it delightful being a woman! 😔

That’s interesting he said that. They seem pretty confident what’s wrong with you. Can I ask you to describe your pain? I can feel today my bladder is aggravated when going to the loo, it doesn’t hurt but it’s almost like I can feel that it’s inflamed. I am just getting horrible sharp pains all over my lower abdominal area, sometimes really low in to my groin area, they are not localised to a specific area just all through my lower abdomen.

@Aleksandra1990

So I have constant urethral burning which only goes away during and straight after a wee - where is then comes back after a few minutes really bad!

It comes and goes in waves but is mostly so horrible I don't leave the house and just want to be in the shower. It never goes away entirely. In the past three months I have been out about 12 times and sometimes just for a walk. It's like the feeling of cystitis but constant. It doesn't burn when I wee though.

Then I also have pain in the bladder. So when it's full it just hurts rather than gives me the normal feeling of needing a wee.

I also get sharp shooting pains randomly and in different places. Like in the ovaries or centre stomach - not like in the same place so difficult to explain.

Having a bath can make it worse. Since I've started the diet the pain has decreased but I’m yet to know if that is coincidence but I'll know in a few days.

The only ingredients I’m eating are:
Brocolli
Carrots
Decaf coffee
Brown bread
Organic peanut butter
Feta cheese
Potato
Quinoa
Mild cheddar cheese
Chicken
Salmon
So I make different lunches and dinners using only those ingredients. I also am only drinking bottled water.

@Mrbumpoid that literally makes me shudder at the thought of feeling that cystitis feeling constantly! How on earth are you coping with that!

I have asked for a private MRI but they said there are two conditions the MRI doesn’t detect and to get those ruled out first one was urology related the other gynaecology related. I think I’m going to call them again tomorrow and really push for one! I’m so miserable, I want to cry all the time. I keep looking at my children thinking I will leave them and they will have no memory of me. It’s horrible.

@Aleksandra1990 yes definitely push them. It was World Mental Health Day or something last Friday and the NHS have done loads of adverts for it so ffs they need to listen and help you. You have children and are obviously very anxious and shouldn't have to live like this. The quicker they help you and take the worry away, the better.

I am also on some meds that help the bladder and now I've been on them for three weeks, my frequency is less and I’m weeing a lot more normally. It's just the pain now.

Have you tried training your bladder? So go to the toilet every hour only - whether you need it or not and sit there. It's obviously not easy as you have children but worth a go.

@Mrbumpoid so I’m not really suffering from the frequency at the moment. I am going every few hours, not needing to get up in the night etc... my main thing is the pain.

Yes they make out that mental health is a big thing and it gets so much support but honestly I have been sobbing on the end of that phone recently and was told “we’ll we have done lots of tests on you” I explained how it’s affecting my marriage and my ability to play with my children but they just didn’t care.

Am I going mad or was there a super useful thread on here a while back about this? Not sure if it was in chat though

@Aleksandra1990 could you go back into therapy? There's another therapy called CAT which is cognitive analytical therapy. It's where they get really down to the hows and whys of what you feel. You say about your friend and also about your mum being a nurse so you are aware of that but they will take a look deeply to get to the core. It's really good. In the meantime, is there anything you took from CBT that can help you over the next two weeks whilst you wait? It's difficult when I pain this, hey? because your mind can't help but focus on that. The diet has seemed to have worked a little for me so far and most people say diet is key in this sort of bladder thing. So perhaps give it a go for some focus? It may ease the pain in a few days like it has me then you can get out on some walks to help your brain? From what you've said and from what the NHS website says, it doesn't sound like cancer. Many women have inflamed bladders which is horrible, I know. I would never say to you not to worry because I hate it when people say that.

@managedmis maybe it wasn’t on mum’s net? As mums net is a “discussions forum” where people do chat and share advise.

@Mrbumpoid yes that’s definitely something I know I need to look in to. In the past I have not had such prominent physical symptoms which is what I’m struggling with and actually I started going to the doctors at the start of this year not feeling well so it’s just really taking its toll now. I will look in to diet and I also am in the process of moving house so mega stressed!

I have had that constant urethral burning that lasts for several months on two occasions now. Again it doesn't hurt to pee. I have been taking waterfall D Mannose after reading about it here and oh my goodness my symptoms have gone! Please consider giving it a try.

@Ellapaella what is waterfall D mannose? I am just taking tablet form 3 times a day but feel it hasn’t done much so far but it’s only been a week.

I was taking it for a week (9 a day as it said on the box) and it made no difference. Now I take one a day as it says to do to prevent it. Still hasn't helped. But I have read it helps loads of people. Check the reviews on Amazon. Apparently powder form it better? It is taken to prevent one certain type of infection I think. My urologist actually recommended it and I said it doesn't help. But it was still a recommendation from a urologist so...

@Ellapaella did it get rid of the symptoms for you or has it just not let the pain return?

@Mrbumpoid I was woken in the night by horrible pains in my cervix area, I’m getting straight on the phone to the doctor today because I’ve just had enough! I phoned my local private hospital yesterday as I requested a pelvic MRI several weeks ago and they phoned me at the time saying they couldn’t do it until I had two conditions ruled out so yesterday I phoned to make them aware I had seen gynaecology and urology now can I please have the MRI and it turns out they didn’t do the scan because of whatever my GP had put in my referral letter! So I’m ringing today and want answers! I know in the past I have definitely let my anxieties run away with me but I have pelvic pain every single day and now it’s waking me in the night! That cannot be normal? I have also had a private smear which all came back ok... I am just so fed up with feeling achy and tender in my lower abdomen!

@Mrbumpoid I took it every day for 8 weeks, I've now stopped to see what happens and so far so good no more symptoms.
I was told o had vulvodynia the first time around but I always had massive doubts about that diagnosis to be honest. It just always felt like I had a low grade UTI that wasn't clearing up. I would say give D Mannose a try - it's worth having a go. I was so sick of my symptoms this summer, it went on from May - September and was triggered by actually having a UTI which was seemingly treated initially with antibiotics.

@Aleksandra1990
I wonder what your GP wrote! Next time make sure you always request a copy! Even if it is anxiety, you need peace of mind so they should do it anyway. It's not as if you are asking them to remove a kidney 🙄 It's infuriating how little people understand mental health even though everyone makes out they do! A massive mental health campaign to get people talking is utterly pointless if people speak how and don't get heard!!!!

Anyway, if you are being woken up by pain then surely you won't have made it happen bc you weren't even awake to be thinking and getting anxious. So yes 100% get seen and shout as loud as you can!! Let me know what they say!

@Ellapaella

In those 8 weeks when did you begin to notice a difference? I've just ordered some new ones which are a bit more expensive from a company that is well known and I'll continue. Was it 1 a day?

Vulvodynia apparently isn't a diagnosis but a symptom so I agree it's BS. The symptoms of it will be there bc of the infection or something.

Mine has flared I think from three catheters in the space of two weeks from child birth and post-birth problems/surgery. As a child I had the same thing and had a urethra dilation aged 20 which seemed to clear it up for 15 years!

If you feel a UTI coming on will you then take a higher does of the d-mannose?

I have an appointment for them to put medicine directly into my bladder soon.

@Mrbumpoid I noticed a difference after about 4 days, I took a high dose for several weeks then dropped down to a maintenance dose. As a child and young adult I had very frequent UTI's and think I'm probably resistant to most of the usual antibiotics now. I also have mild endometriosis and surgical adhesions following 2 sections and had high vaginal tears and an episiotomy after my first child which I'm sure all play a part in some of these flare ups now. My frustration has been in getting any GP or gynaecologist to take my symptoms seriously - I basically had to work it out for myself. The gynaecologist just wanted to put me on gabapentin which I feel was totally inappropriate.