Feel like giving up on treatment

[sootspritez]

Sorry, this is loooong

For the past 4 years - yes, 4 years - I've had the symptoms of a bad UTI every day. Pain in urethra, abdominal pain and passing water issues which either consist of sudden unbeatable pain and bladder voiding or 'cramp/stitch' feeling in my bladder and not being able to pass water unless my bladder is bursting full.

I have a number of additional symptoms inc generalised stomach pain, discomfort during sex, spasms in bum, vaginal pain, excessive bloating, dysmennhorra, pain in ribs, and pain during orgasm etc

I had a cystoscopy which came back fine and several ultrasounds which showed PCOS but the gynae said this didn't explain my pain

I kept a diary of my symptoms and saw 2 gynae nurses - #1 said it could either be interstitial cystitis or endometriosis and #2 says it's definitely interstitial cystitis and that people are 'too excited' about getting diagnosed with endo. Gynaecologist agreed with nurse #2 And said it was cheaper to treat IC and so he would do this and see if it works. If not, he would consider alternatives.

Prior to this id never complained about my pain even though I've had it since starting periods at 11, I just assumed everyone feels like this and it was only with the sudden onset of the UTI like pain that I started explaining my situation and thinking it could be somethi g more complex.

The UTI symptoms are constant and affect my daily life. There are days I can't leave the house due to spontaneous bladder voiding and crippling pain and I've had to call in to work saying that I'm physically well enough to work but that id basically spend the day pissing myself.

It's not unusual for me to spend full nights sleeping in the bath so I can just pee small amounts when my bladder relaxes enough to let dribs and drabs pass through. It's fucking miserable

I've had 3 medications and am now having catheter treatments where they put liquid into my bladder to try to numb the pain. The treatments are agony - for 2 full days afterwards I'm peeing air and it kills - but the second nurse and gynaecologist keep minimising me as though I just don't want the treatments to work and as though I should just get over it.

They physically stop me discussing symptoms and have refused to let me see the first nurse, who was the first and only person who has listened to me fully.

I've been having treatments weekly for months with no improvement and I just feel like giving up. If I don't see benefit by September they will discuss a potential laparoscopy, but nurse #2 said she would only recommend pain management classes and amytriptyline which j absolutely do not want

I honestly feel hopeless. Has anyone been through anything similar?

bump

I’m sorry you’re having such a rough time, OP. I don’t have any magic solutions, but I would suggest seeing a consultant urologist rather than a gynaecologist, as your symptoms sound very much bladder rather than gynae related. It also sounds like you don’t have a very sympathetic gynaecologist, and you might find a better professional relationship with a change of consultant. The urologists in my own hospital are all lovely and very good at their jobs, and I’d trust any of them to make a correct diagnosis and manage patients kindly.

Chances are it’s IC and endometriosis.

Ask for another referral to a different gyne and request a lap for endo. Repeat until you find a good gyne. I bet you’re fed up of fighting through nhs referrals but it will hopefully get things moving faster.

’but nurse #2 said she would only recommend pain management classes and amytriptyline which j absolutely do not want’
Can I ask why you don’t want these things? If it is endo then unfortunately it’s entirely possible to still have some pain after a lap - it is a chronic illness after all. And pain management is a valid referral for anyone with endo. Similarly, many people find amitriptyline to be a really successful drug. (Not without side effects of course but you have to weigh up the side effects vs your pain and current quality of life.)

This sounds awful and so stressful for you. I'm so sorry. I can relate a little bit. I had chronic cystitis and UTIs about 7 years ago. I'd always had them on and off but they became more and more frequent. I was eventually hospitalised with a kidney infection. The doctors then put me on an antibiotic which i took every day for 3 months. It fixed it but I had to beg the doctor for the prescription.
Occasionally I will get UTIs now, but only if I'm dehydrated. Can you ask the doctor about the long term meds?

I also came off the pill around the same time. Then followed agonising periods, a burst cyst and infertility. I had the pain you describe when exercising too. I had a lap last year which found endo on my ovaries and only recently got diagnosed with PCO. Since having the lap I don't have the pain when exercising, and my period pain has definitely improved. It took me so so long to find a doctor that would take me seriously.

Its so frustrating, feeling like you're not being listened to. You have my sympathy. Push for the long term antibiotic if you can. I read this recently, which you might find helpful: www.google.co.uk/amp/s/amp.theguardian.com/society/2019/feb/20/in-pain-all-the-time-will-there-ever-be-relief-for-women-with-chronic-life-changing-utis

Best of luck. X

Wow that sounds absolutely awful OP! Have you had Xrays, ultrasound, cholangiogram or Nuc med studies to see what’s actually going on with your bladder? It could be anything! Stones blocking ureters, duct dysfunction allowing urine to reflux back up the ureters to the kidneys. You need to go and talk to a urologist to get some proper investigations done. I feel for you so much. In the meantime I’d take any pain relief on offer.

My first thought was you may need to see an Urologist rather than a gynaecologist so I would request that referral.

If they won't refer you then I would request a 2nd opinion from another Gynae Consultant.

I would also write to PALS (making sure you head the letter 'Complaint') and detail your problems with the 2nd nurse and Gynaecoligist. Keep a copy. It isn't acceptable to not be listened to or to have your feelings minimised. If they fob you off they leave you with no alternative but to complain about their behaviour.

I hope you have told them about sleeping in the bath etc and how it really impacts your daily life. It sounds awful. It also sounds like you are a bit of a guinea pig and they haven't definitively diagnosed you.

If you don't want Amitriptyline for the pain, are you prepared to take any other painkilling medication?

I honestly feel like crying reading this, thank you so much - it's so nice to feel listened to! I feel like I'm going mad atm.

I actually saw a urologist first and once they ascertained that there were no tumours, they discharged me and told me to eat a low acid diet and try pain killers.

I went back to my GP and got referred to the urogynaecology clinic which is where I saw the first nurse and felt so validated and listened to... and then it all went tits up from there.

@littlelongdog sorry I should have been clearer in that I'm not prepared to do that yet. I don't want to be fobbed off before proper exploration and treatment occurs, I want to exhaust every option before resigning myself to pain management. I know it can be helpful but right now I don't feel satisfied enough with the lack of consistent diagnosis. Amytriptyline I was given once before for period pain and I found the side effects horrendous. Liquid ibuprofen and anti inflammatories do help the pain somewhat when it's at an 11/10 but I can't do this forever due to the gastric issues that arise.

@ihatehashtags thank you so much - I hadn't even considered the possibility of there being a kidney issue. What's a cholangiogram and a nuc?

I have told the nurses and consultant about my symptoms, even when I described the pain as often feeling as though someone had shoved a rough edged toothpick up my urethra and was wagglimg it around (not joking) and having collapsed spontaneously in pain and having literally a puddle of piss just spread out around me and they just talked over me.

It's really weird as I feel like every time I go the goalposts change. I'm on my 6th treatment and initially was told I'd feel benefit by treatment 3/4. They're still consistently the same with exacerbation following the treatment, but when I mention this I just get told to be patient and that if it feels like it's getting worse it's a sign it's working...

@booksandstuff i am so sorry you've been through something similar and so chuffed you have some relief. I get checked before every treatment for infection and haven't had any touch wood, but it's interesting how many.overlaps we have. I have actually had to stop running because of the urethra irritation but kind of haven't even considered that.

Thank you for the article. So so so hugely appreciated. I can actually cope with the pain as I'm used to it by now - 4 years on! But can't cope with the night time pain and the sudden total incontinence. I'm the same as you as well in that dehydration definitely makes the symptoms worse but I've been told that drinking too much water can actually worsen it (nurse #2)

It makes perfect sense that you want a diagnosis - just be aware that you don’t need to disregard pain management while you persue it.

Amitriptyline does have some strong side effects and if you don’t want to deal with these then of course it’s fine not to take them - but it’s worth knowing the side effects usually lessen after a few months (I guess when your body gets used to it) and also that there are other nerve blocking pain meds that you could try instead.

I’m so sorry that you’re in this situation.

You poor thing. I had uti symptoms for over 5 years and my life felt wrecked. I had every test known to medicine and a rigid cystoscopy under GA showed extensive cystitis cystica whIch is where the bladder is full of cysts. All dipstick tests at GPs showed blood but nothing else and time after time I was told I didn’t have a uti. The GP grudgingly gave me antibiotics each time and the symptoms would improve only to come back a week or so after I finished each course. I tried a year on one antibiotic per night which didn’t help. All the hospital had to offer were bladder installations which did nothing except make the symptoms worse.

In desperation I saw an expert in lower UTIs privately. He’s called Professor James Malone-Lee. On checking my urine sample under a microscope he measured the leukocytes at 120 and epithelial cells at 56. He said I must feel pretty grim. I could only agree. I first saw him last October and now feel I am getting my life back. Apparently the tests for UTIs are very unreliable and thousands of women are told they have no infection and are then diagnosed with IC. professor ML deals in what he calls UTIs from hell. He is an amazing man and on a mission to improve the diagnostics and care of women with urinary tract issues. He says he has seen patients with catheters who have been told the only treatment left to them is to have their bladder removed and has with the right treatment (mainly long courses of cefalexin and hiprex (makes the urine too acidic for any remaining bacteria to survive) helped them return to good health. I can’t recommend him enough,

I was told by Prof ML that the cystitis cystica isn’t a condition in and of itself but just what a very badly infected bladder looks like and that bladder installations could not possibly help as the whole concept of restoring the GAG layer of the bladder is flawed. He says that women are subjected to painful, expensive and inappropriate treatments and are being terribly let down .

Write to your GP. Ask them to refer you for a second opinion.
Write all your symptoms down in bullet points, especially about the bath. Hand it to the doctor.

Good luck.

Could you try taking d-mannose (natural substance). This cleared up my long and recurrent UTI's that antibiotics alone didn't. It was like a miracle supplement to me. It only works if the UTI is caused by e-coli (90% are) but it means the e-coli becomes attached to the d-mannose and can be peed out. Use it in conjunction with antibiotics if necessary but there are literally thousands of reviews online, many from people who have had long term UTIs that weren't cured by antibiotics.

D-mannose literally saved my life when I was having recurring UTI’s which led to me being hospitalised every month. Worth a try

www.waterfall-d-mannose.com/dmannose.html?s=GA-UK-WDM-PR&gclid=Cj0KCQjwitPnBRCQARIsAA5n84lq51LblQ1LqE5eosW40BO0krsbCgnPpilG30OFdjPsdhAoOSwvL7saAmHAEALw_wcB

I am so, so sorry you're experiencing this. I know what it's like to be finally heard by someone willing to really listen, then to end up talking to those who won't listen, again. The frustration.

No advice but it's sounds like there is some good advice already posted. Just wanted to send solidarity and love oh and that also I have endo and I reckon you might have this as well as the IC. With things like endo, you get used to chronic pain and people don't see how badly affected you are. But I believe you.

I've just read that article and I'm in actual tears on the train. I'll reply to all this later but oh my god thank you guys so much, I feel so hopeful and so believed for the first time 💗

Poor you, having to battle to get help on top of what you're going through physically. It reminds me of the piece Lena Dunham wrote about her endo and what she went through to prove the cause of her suffering. Not saying that's what you have but you may find reading about her experience validating as if she can be disregarded that way then it just shows that it can happen to any woman. I hope the others advice is helpful and you get some relief very soon.

Hey OP, I just wanted to pitch in and say don't rule out pain management. my GP and gynae have been excellent, but I cried with relief after my Pain Management appointment. I truly felt listened to and got lots of useful techniques for managing long term pain.

I hope you get a diagnosis/cure soon

You absolutey need a laparoscopy.

Oh my goodness. As someone who is prone to uti I feel for you so, so much. That sounds unbearable .

I was also found to have very mild endometriosis. Has your GP not said anything about having you checked for it?

For me I only get uti if I have sex more than once in a few days. Your case sounds extreme but I would agree that I’ve seen hundreds of rave reviews about dmannose. Another thing I’m going to be doing is taking a probiotic. The one I am looking at is called optibac as it contains the good bacteria that live in the bladder.

I don’t have a deep understanding of ic, so I know that may be of no use but just on the off chance I thought I’d chime in.

I really hope you can find the answer.

Hey @sootspritez How are you doing now?