Thanks Shirley seems like they are still reviewing.
Hi Shirley thanks for sharing with me. Im sorry you felt that way but it sounds like you are much better now. symptoms started of in 2015. I had the cyscopty in 2016. My pain issue is urethra pain...like a burn and also feel swollen. Robert has a private clinic on Thursday and Monday (your right). I've left a message with his PA. Did Robert help with your diagnosis.? What medication are you taking now? What helps you with flares. I've had a flare for over a week now. Been to the GP there no infection.
Hi Sandy, you’re right I am a lot better these days, generally speaking, but I do get flares and I’ve been uncomfortable for the last few months but not sure quite why as symptoms are slightly different so I’m currently being investigated - yet again! I’m having a course of PTNS which is helping. When I get a flare I try to drink more water, be stricter on my IC diet, take pre-relief and quercetin (a natural anti inflammatory that I find very good) and try to be as calm and stress free as possible! Prescribed medication for me is Mirabegron (betmiga) 50mg at night. I’ve tried other stuff in the past, including amitriptyline, but this is the only pill I’ve found helpful. The thing that really helped me with the urethral burning was HRT. I think my urethral problem’s were hormonal in origin due to a VERY early menopause! You could ask whether you could try some estrogen pessaries called Vagifem. I suggested them to another lady on her (think it was Pam) and she said they’ve really helped with her burning pain. You’re young so probably don’t need systemic estrogen but a little extra in that area might be helpful. You may need to suggest it though as it’s not the first idea that springs into a doctor’s mind when dealing with the bladder! Robert also did a urethral dilation which, whilst initially caused more pain (for about a week) did really help. I had lots of other gynae issues which he sorted out for me too. I’m now under a urologist and a separate gynaecologist, as I moved away from Kent and it was after that I was diagnosed. Robert works closely with a urologist so he may suggest you see him instead - I don’t know but please let me know how you get on!
Hi Shirley thanks. Where do you get the quercrten tablets from. I looked on Amazon but there's loads. I ordered a tens device last week so will give that a try also. I also heard marshmallow root is good for burning so I ordered that to. I asked my GP to refer me to a gyc last week. Hopefully I get a appointment soon. At what age did you symptoms start?
Hi Sandy, the quercetin I use is made by a company called Solgar. It’s called ‘quercetin complex with Ester-C Plus.’ It’s vegetable capsules. I get the jar of 100 capsules from Amazon. Make sure it’s the ester C one as that’s the only bladder friendly one. I’ve also bought a tens machine but it’s early days for me to know if it’s helping as I’ve been told it takes a few weeks of daily use to know. I’ve heard about the marshmallow root but I found out I couldn’t use it but I can’t remember why! I was in my 40s when the symptoms started but I think I’ve always had bladder probs - I was always the child who had to ‘go’ during lessons and I’ve always had to sit on the end of the row in cinemas etc ‘just in case’ and I’m a nightmare on a plane lol! I’ve always had cystitis on and off which has only once been a UTI and then I had a kidney infection with it. No significant infection has ever been found even when I’ve had severe symptoms.
Hi Sandy,
Just reading your thread and i dont know if me and you have similar cases, however i have had bladder pain for 9 years now, every doctor i ever saw said there was nothing wrong with me despite being in pain every day.
I am now seeing a private doctor in london (harley street) Professor Malone-Lee, i believe he does do NHS too. He is the only doctor who has diagnosed me and seems to understand the pain i go through and how it affects my day to day life. He is a doctor that treats with antibiotics, i have been on a combination of antibiotics for a year now and feel about 70% better, i still get my off days as i am not 100% healed yet but in comparison to how i used to be it is a massive change.
I would love to hear what your pain and story has been like and maybe this could help?
Hi Shirley,
Would you mind sharing the name of the urologist based in Kent please? I just gave birth and also had heamaturia during my pregnancy. And they kept thinking I have UTI but tests always came back negative. I have Endometriosis and hear IC is Endometriosis evil twin and 80% of suffers have IC. I’m willing to go private as I can’t even sit in the car because it hurts. Thank you x
Hi Alenka, I’m sorry you’re suffering so much. I have IC but not endometriosis although I know women who do, and I know how painful it is. The uro-gynaecologist I saw in Kent for a few years, and who helped me, is Consultant Mr Robert MacDermott, at Darenth Valley Hospital in Dartford. He also has a private practice nearby and has a website which might be helpful. I think it’s ‘Kent gynaecologist’ but if you google him you’ll find it. I wish you well and hope you find some relief soon.
Hi Shirley I called his clinic and was advised that because I live outside of Kent I wouldn't be able to get treatment on the NHS. So I've looked up another consultant in wemberly. He's a urologist and gyc and works at parkside hospital.
Hi Melissa. I woke up one morning in 2015 and experienced this burning pain like cysisitis. Went to GP who said no infection. So drank loads of water. Then in 2016 I had a number of infections. Was sent to Guys hospital. They did a cyscopty and told me my bladder and urethra looked normal no concerns. Told me to watch what I eat. So I started to take D Mannose and pro biotics. I've been able to manage my symptoms via diet normally. But recently had a long flare. My pain issue is burning pain when holding passing and when urine has voided. I haven't taken any of the drugs the doctors have been giving me because they all say didn't things. But I've just booked an appointment for £200 at parkside hospital in wemberly to see a urologist who is also a gyc. I'm in a lot of pain during sex to. So I'm wondering if there's some underlying issues.
Hi Sandy, that’s a shame - I thought the new rules said we could choose to be treatment at any hospital in the uk. Obviously not! But I’m sure the one in Wembley will be just as good. There are very few Uro-gynaecologists about so I’m glad you’ve found one as gynae & bladder probs seem to be closely linked and hopefully he can cover all bases! Let me know how you get on!
Thanks Shirley I'm seeing him tomorrow. Shirley do you know if IC is a progressive condition does it get worse with age? My period seems to make the symptoms worse.
Dear Sandy, I’ve heard others say that it’s worse during a period. I know for sure that it’s worse when my IBS flares up or I get constipated. My urologist explained that the nerves to the bladder, bowel and uterus are all bundled together at the base of the spine and if one lot is irritated (as is possible during a period) then they tend to aggravate the other nerve endings too, so if that’s the case, it makes sense. In fact he’s told me never to get constipated which, with IBS, is easier said than done! I’m not sure that it’s a progressive condition as such - mine is a lot better overall than it was 10 years ago. There’s no cure as such but there are ways to manage it once you got it under control initially which is what you’re trying to do now. I think increasing age is an issue if estrogen levels get too low as the bladder needs estrogen to be healthy. But that can be sorted out too. It’s hugely frustrating and depressing and panicky in the beginning but it will get better once you have a supportive and knowledgeable doctor/consultant on board. Hope it goes well tomorrow x
Hi Shirley
I had a consultation and the Dr felt I have a chronic inflammation of the bladder. He didn't examine me but felt this is what my symptoms showed. I'm waiting for my appointment at Guys and I am going to ask them to take a biopsy because they originally said my bladder was fine in 2016 and no concerns.
Thanks for letting me know - I was wondering how you’d got on. It’s ok to say chronic inflammation of the bladder but you need to know why! Hopefully they’ll sort this out when you go to Guy’s. Sometimes biopsies don’t reveal anything but that wouldn’t rule out IC - it’s a diagnosis of exclusion really - only the presence of hunners ulcers would confirm IC but most IC sufferers thankfully don’t have them. On cystoscopy my bladder looked ‘normal apart from inflammation and evidence of recent infection’ er, ok, so NOT normal then lol! My urologist said IC after ruling other causes out, but he also said the treatment is the same whether the bladder’s inflamed due to IC or not. Think about the food and drink you’re having and if you wouldn’t rub it into an open wound then don’t put it in your bladder! Good advice! My bladder is definitely not happy with this heatwave we’re having. I have to keep reminding myself to drink more water! Let me know how you get on at Guys. 🙂
He basically said my history of UTI as a young person and history of cysisitis could mean I have the chronic immflantion. He said he can't be sure without checking. I feel as my period has made this flare worse. Before then I was managing with D Mannose. I also noticed that I well worse when I'm less busy and my mind is not occupied. I also think the heat hasn't helped me. He said that loads of women suffer from this issue in the UK. He mentioned that one women is being injected with BOTOX and others on anti biotics and histamine blockers. So do hopefully guys will do some further checks in the next 4 week.s
Hi Sandy. I take antihistamines for mine. It’s worth you trying some. I’m on hydroxyzine as cetirizine made me irritable! When the bladder is inflamed it produces histamine which makes it worse so it makes sense that an antihistamine might help. Be wary of the Botox injections. I refused them. I’ve heard of some women having that and not being able to wee afterwards without using a catheter and I think that would be very uncomfortable to do - personally I’d keep that as a very last resort! There are other things to try first. Look up
antihistamines for bladder pain for suggested brands and dosage and see what you think about trying it. We shouldn’t even be aware we have a bladder until we need a wee - it’s horrible and depressing when it goes wrong!
Thanks Shirley. I'll speak to them in August that's when my appointment is. I've been watching my diet very carefully. Most breads . Eggs and fish and salad seem to be fine for me. I haven't drank coffee for 2 years now not tea or green tea. My sad choice of drinks are peppermint. Water and chamomile. I think reading some horror stories has made me feel worse and I keep thinking that my bladder will need to be removed. This has all come from me doing a lot of research which I can't seem to stop doing. I'm only 33 and I'm thinking if I can even have children with such a condition. I've heard it can be manages with diet and less stress..and medication. Do you think I should ask for anything else a part from a biopsy
Hi Sandy, I know you feel - research is good but when you’re in pain and reading horror stories it can hinder rather then help. It’s only in extreme and very rare cases that bladder removal is recommended - not an op I’d ever want done! The trouble with the internet is that you will always find ‘the worst case scenario’ and scare yourself, so I try not to do this unless I’m looking up something already diagnosed. On the other hand it can be a great tool to find out more so it’s a balance really isn’t it? There is a calming medication called Betmiga (mirabegron) which they might suggest you try. That’s very helpful. As for tea - I drink redbush tea with milk in it and at first it was a bit odd (better with milk in) and now I prefer it to ‘real’ tea - it tastes quite similar unlike the herbal teas and is completely caffeine free. Great for dunking biscuits in!! If you stick with it I reckon you’ll get to like it a lot. Make sure it’s pure redbush though and doesn’t contain any other flavours, I don’t think there’s anything else you can ask for at the moment - just make sure they're aware of how horrible it is. I’m hopeful that it will settle down soon (inflammation in the bladder doesn’t go away quickly) and I’m sure you’ll be able to have children at some point (many with IC do) in fact the hormonal changes in pregnancy might be a good thing! Not that I’m an expert on that. I had my son before I had bladder problems. I’m hoping you’ll get some proper help at Guys and will go on to live a normal pain free life!
Hi Shirley and all. I went to the urologist and they this I may have urethral syndrome. I also had to go to the GP because I felt I had a UTI. My GP told me there was blood in my urine so I was given nitrofurantoin 100mg twice a day. Since taking these (yesterday was my last dose) the burn and pain has disappeared. I wonder if this has happened to anyone else.