Hi all. In the past my biggest health concerns were hay fever and migraines. However, around the 20th of January this year shortyly after turning 18 I woke up feeling desperate for a wee- like my bladder was going to explode. This never ever happens to me but I went to the the loo and thought nothing of it. However I still felt like I was busting for a wee. 3 toilet trips later and I knew something wasn’t right. The horrible feeling was still there and so so intense. I sat up all night long unable to get any sleep and waited 2 days before realising this wasn’t just gonna go away. I suffered for three weeks and had three courses of antibiotics when I finally got relief for 6 days. I was so relieved as I had been beyond sleep deprived, desperate to escape the constant pain and had even written a suicide note as I felt it would never end. Fast forward and the pain has returned. I’ve been in constant pain for the majority of 2018 with just six symptom free days. I’ve been given antispazmodics, diazepam, 2 MORE courses of antibiotics, codeine which made me violently sick and amytriptiline. They found blood, protein and white blood cells in my urine initially but now they can’t find anything. I’m having a cystoscopy soon and I’m terrified that it will cause me even more pain 😬. The majority of the Docotrs I’ve seen have said they think I have Interstitial Cystitis/Bladder Pain Syndrome. It’s an incurable (chronic) illness and about 400,000 people in the Uk have it but it seems that there’s very little info about it out there. Some Doctors have never heard of it. My current Doctor is hoping to do a course of CYSTISTAT for six weeks and I’m hoping and praying that this will benefit me. I am currently not working or studying as the pain and discomfort makes it hard to function. I’ve had lots of panic attacks and suicidal thoughts brought on my the relentless pain. I’d love to hear from some others with IC/PBS who understand how awful and disabling this illness is and who could give me advice and tell me what worked for them.
Hi , I have very similar problems to you which date back to November last year. I was convinced that I had cystitis but sample said no infection , although I certainly had one in September when I was treated with antibiotics. This cleared up the problem. My symptoms were ( and still are) a discomfort in my urethra where I feel I need to go to the loo, this feeling is there all the time. I do not feel as if I have to rush , once I have been I might feel as if I want to go again a couple of minutes later, although I can easily tell myself I don't need to. The feeling is always there although it's worse sometimes,some nights are bad where I am woken and get up 3-5 times a night. Like u I have no diagnosis, was at one point given tolterodine which is not helping. I'm hous on line looking for solutions. Have bought loads of supplements which haven't helped. Awaiting a consultants appointment since January. It's making me anxious and depressed. Someone must have a solution. Do keep in touch.
Sorry to hear you’re suffering so much, believe me I completely understand and my heart goes out to you! 💕 Why have you not yet seen a consultant urologist!?! I’d advice you to write to the NHS/health secretary etc and ask that your appointment be expedited as you are in constant discomfort. I am being seen by an NHS consultant and feel much more positive. Where abouts do you live? I’m in London. Keep in touch and let me know what helps or doesn’t help. I completely relate to the anxiety and depression which comes with constant pain/discomfort. I’ve had suicidal thoughts/panic attacks and have been assessed as high risk. These symptoms are so hard to live with. If you ever want to chat, please get in touch xxxxx
Thanks so much for your prompt reply. You are right, I do need to chase up the appointment. I would have done it earlier but things got a. bit complicated, to add to my word I got a bad flu in January and was off work for 3 weeks, most of which I was both exhausted and depressed for, and to add to my woes my bladder went berserk . I am then out of the country for a week in Feb and a week in march. I will ring Kings college tomorrow, like u I live in London. Who are u seeing and which hospital? I have since done some online research and thought Dr Alex Digesu is very highly rated - based at st Mary's Paddington. My issues have been complicated as GP is also wondering if the problem could be caused by viginal atrophy ( complication of the menopause) as apparently vagina and urethra share the same cell structure( won't apply on ur case of course) so I have also been prescribed eostrogen cream, which I used religiously for weeks to little/ no effect!!
Sorry to ramble on and thanks so much for your sweet message. Nice to share with someone who understands. Huw long have u been seeing the consultant? When is treatment u mentioned likely to start?
In my ongoing online research I found that acupuncture may help (some research has been done. Emailed a local person last night ( registered) and I have a session with her in the morning!! I will let u know how it goes . Thanks so much for listening and hopefully we will both find a solution. Keep strong, this thing can't beat us!!
Hi again, loving your positive attitude- I need to adopt that! I’m seeing Mr Danny Swallow at Springfield Hospital in Chelmsford so a little bit out of the way but only place I called and even the receptionist knew about interstitial cystitis. My first appointment is on the 20th and that’s when I’m having a cystoscopy. After that I think I’ll get bladder installations weeklong which apparently heals the bladder lining and should reduce my urgency 🤞🏻. Please keep in touch as it’s really really helpful to be in contact with someone with the same issues as myself. All the best for now xxx
I have interstitial cystitis. I was finally diagnosed just over 5 years ago. I had pain in my bladder even if I only had a drop of urine in it. The pain doubled me up, I also suffered with low back pain and pain in the tops of my legs. When I was diagnosed I started the instill 6 weeks course and it gave me loads of reviled. I think of it has relating the lining of my bladder. I have one every month and over the last year I have been doing my own instill at home. I still have flare ups now and again. Toilet 4/ 5 times a night pains return. But it also makes me realise how good the instill is. I hope it's as good for you. Do let me know.
Omg it’s so good to hear you had a positive experience!! I really hope it works for me to. It’d be amazing if I could do the instillations at home and manage it myself. How regularly do you flare? And when you do does it last a long time? I’d be happy if I could get them under control enough to be able to hold down a job etc rather than having constant pain for months at a time xx
Hi, I can go months without a flare up. Also you can watch your food , know your triggers, it's alcohol, chocolate, citrus fruits for me, over indulgence with any of these. And that is only after 2 drinks. I changed my diet completely now plant based only. I hope it works for you. It is good to have a diagnosis so you know it's not in your head as some people have thought in the past about me.
I am so sorry you’re dealing with this awful problem. I have had two flares of interstitial cystitis (no infection on urinalysis) and I’m hoping some of the things that worked for me will help you and others.
1. Twice a day I drank a cup,of marshmallow root and leaf tea which Insteeped for 7 minutes before drinking. Once a day I drank peppermint tea steeped for 5 minutes. I
2.a big teaspoon of raw honey twice a day.
3. I bought size 0 empty glycerin capsules at our health store and filled them with (fresh) 1/8 teaspoon baking soda. I took one every night before bed with a big glass of water. You can take this twice a day in the beginning. It helps keep the urine more alkaline so the bladder lining can heal from the damage caused by acidic foods.
4. This is not a urinary tract infection, so antibiotics, cranberry products etc. make it worse.
5. If the crotch area is painful, I found that gently applying a little jojoba oil helped. Coconut oil made it worse.
6. Here’s what I think caused mine to start - long periods of sitting, drinking lemon water, coffee, tea (even decaf has caffeine which is a no-no with this illness); green tea (a big no with this illness), dried cranberries, chocolate, raw red onions, mangos, not enough water (I need a good 8 ounces of water every hour when this is going on), tomato products, strawberries. I had to eliminate all these things from my diet.
7 it took me a couple months to recover, but I did recover completely with no help from doctors - just research and experimentation. I still drink a cup of marshmallow root and leaf tea most evenings. I buy it on Amazon since I can’t find it in stores.
I’m sorry this is so long, but I pray this helps someone.
Thanks for all this useful info!! I have still been drinking decaf 🤦🏻♀️ doctors didn’t tell me it had caffeine in- all about false advertising 😦. I’ve been avoiding chocolate, tomatoes, alcohol etc etc. After the first three courses of antibiotics I had my symptoms cleared for 6 days but returned the second I had a small glass of white wine so I know that alcohol definitely is a NO NO! Can I ask for the link to where you get your marshmallow root tea? I wanted to try it but couldn’t find it in Holland and Barret or on amazon 😬. I love honey I always have it on toast so will keep that up. Would love to be able to control it with diet alone but want to start going down the medical road as it’s been going on for so long. Xx
I recently ordered my marshmallow root and leaf tea from LuckyVitamin Corporation online. It’s the only place I could find the one that worked for me - Organic caffeine Free Marshmallow Leaf & Root Herbal Tea. It’s by Celebration Herbals and there are 24 tea bags per box. I paid $5.39 per box. I don’t drink alcohol, so I forgot to mention that other big non no.
I was diligent at treating my IC and it completely went away without drugs in about 2-3 months. Now that I know what it is, I’ll hit it hard again as soon as it starts up if it does.
I forgot to include that I also took an oil of wild oregano gel cap every day. I bought North American Herb & Spice brand. I think I got it on Amazon, but I don’t remember.
Hi there! How you feeling yourself? I saw my consultant today and he thinks that because I seem to be nearing the end of a flare it might be better to avoid invasive tests/treatment that could cause me to flare again xx
Hiya, that sounds sensible , and best to avoid if you can. Hope you keep well. Took your advise and phoned KCH, was horrified to hear they had not received the referral!!! GP surgery insist it was sent on Jan. Anyway hospital say they will mark it urgent and hope I get an appointment soon. Had acupuncture session, another next week. Difficult to say if it's helped, been feeling v tired since. Trying some different supplements, will let you know if any miracles happen. Enjoy the sun. Xx
Oh my goodness, had exactly the same issues with being referred! Good luck with getting it all sorted out, just try and be your own advocate 💪🏻☺️. Have been enjoying the sun as best as I can xxxx
Hi, I am sorry to hear you are suffering so much. I am 22 and my problems are very similar but started as a child. My most recent flare up started April last year and I haven't had a pain/symptom free day since October 2017. Similar symptoms to you, sudden urges to urinate and the feeling never goes away. I am up all night most nights backwards and forwards from the bathroom, sometimes it is easier to sleep there. I've tried amytriptyline, gabapentine, codeine, Tramadol and morphine for the pain. The only thing that helps is the morphine during a bad flare up, and have cyclizine and ondansetron on stand by which really help with the sickness caused by the medication. I have 2 hot water bottles and a TENS machine which provide a little relief to at least take the edge off, and long baths help a lot too. I can deal with the pain to a point but I have a constant tingling in my legs and lower back which doctors think are my nerves being all messed up.
I went through 3 different laparoscopies where doctors thought I had endometriosis, before Interstitial Cystitis was suggested. I had my first cytoscopy in Janurary which found evidence of the illness and I was referred to urology. Unfortunately a biopsy wasn't done at the time, so the urologist has scheduled me for another cystoscopy before hopefully moving on to instillation treatment. I was under GA for my cystoscopy, so cannot tell you anything about the procedure, but it did aggravate my symptoms for about 6 weeks after, and I am worried the same will happen during my next one. But there was so much relief having someone confirm what was wrong that it helped me push through it. Some people say that the procedure can help their symptoms though, so maybe this will be the case for you.
Like you, I cannot work or study due to the pain and symptoms, I am a 2nd year Radiography student and had to pause my placement while I tried to get everything under control and I am going crazy being stuck at home. I am sorry to hear that this is affecting you both physically and mentally, it is a horrible condition and symptoms to deal with and it can be hard to find understanding in others. I pushed a lot of people away and suffer with depression due to this. If you ever want to talk my inbox is open. Pain like this makes it easy to feel lonely or isolated but you aren't, there are others out there even if it takes a while to find them. And as bad as it feels now, I have to believe that it can get better and you will find ways to manage the pain and treatments to reduce it. You just have to keep holding out until then. It's hard and a horrible thing to go through. I find keeping myself distracted helps and also learning to feel good about the little things. If I manage to do the cooking or take my dog for a walk then it is a good day It sounds silly but positive things help, and it will get better.
I hope that you find a solution soon and start feeling better. Keep pushing the doctors for help xxx
Hey so sorry to hear you have been stuck in a flare for such an awfully long time. I’ve just managed to cook dinner for me and my bf. Been feeling better the last few days to the point where I turned down a cystoscopy and instillation for fear of worsening my symptoms but yesterday I ate Ben and Jerry’s and I think the small choc chips might’ve aggravated things. I also ate a bagel which I later found out has vinegar in it so this might also have been problematic. Have gone back to my rigorous IC friendly diet and so far urgency isn’t too bad :/ pain and discomfort are about a 5 in my groin area which is very unpleasant. I’d also forgotten to take my amitriptyline the last few days and felt this might also have contributed to my symptoms worsening. Have taken a tablet this evening and hope things start to improve again xx
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It sounds silly but positive things help, and it will get better. 
