Hello, does anyone else with interstitial cystitis find that they feel worse during and especially after peeing?
I keep reading people with IC feel pain and the need to go and relief after peeing, but I feel even worse after 
mainly a burning sensation and sometimes extreme pains that shoot up the centre of lower abdomen up to my bellybutton.
I haven’t been officially diagnosed yet but doctors think it could be this.
I have the same pain after I pee., I get the pain on the left side of center and it shoots up the centre of my pelvis I was diagnosed with Pudendal Neuralgia. I have had shots at the Pain Clinic, not much relief. Now I am seeing a chiropractor, she said the left side of my groin is very tight and hard. That causes pressure on the nerve and causes all the pain.
Thank you for your reply.
Ouch yes this sounds similar to me. Did they say what caused you to have this?
That’s made me think, as well as the bladder pain, I sometimes also get shooting pains up the butt which are soo painful (sorry TMI!) but I wonder if they could be connected and could be pressure on the nerves.
I think my pelvic muscles are really tight as I can feel myself tensing in that area and when I try to relax the muscles it hurts and feels like I need to pee!
They really don't know. Asked if I rode a bike a lot (no I don't). I think it started about 2 years ago but only the last year it has gotten bad. I was given a prescription for an irritable bladder, didn't really do much. I am going to have a cysto sometime next year. My doctor also gave me Gabapentin for the nerve pain, it helps sometimes. And a lidocaine pain cream that I can use on my genital area (takes the edge off).
Pudendal Neuralgia causes pain in the bladder area and pelvic region. Also can cause pain in the butt. It also cause pain when you do need to pee or have a bowel movement. I think it is the pressue on the nerve You should look up the Pudendal nerve and see where the actual nerve is and it's branches are.
My pelvic floor is really tight, hypertonic. And I also tense when I feel the pain. It does give you the sensation that you have to pee. Sometimes I try just to get some relief.
When does it hurt more? Sitting, standing? When I am having pain I find it very uncomfortable to sit in my car or certain chairs. The burning pain makes it very uncomfortable to even walk around or bend down. The only relief I seem to get is sitting on my heating pad on my couch.
I have gotten a little relief from my chiropractor, I have had two appointments and off to my third today. If after awhile it does not help I will try Pelivc floor therapy. Hope the above helps you a bit with information.
Thanks for your reply. It’s definitely an area I’m going to look at also.
I haven’t noticed much difference between sitting or standing but I find lying down slightly better. The burning sensation doesn’t go away but it feels like I’m putting less pressure on it when laid down.
I hope you’re appointments with the chiropractor improve or that the pelvic floor therapy works for you!
It may be that you have a deep routed bladder infection. Like you my bladder doesn’t hurt when it’s full only after I’ve emptied it do I get pain in my vagina area, which I’ve found out is my pelvic floor muscles tensing up due to bladder inflammation believed to be caused by a deep routed bladder infection. I am under a Uro-Gynaecologist who believes this is what is causing my pain. He put me on a long course of antibiotics recently as well as some new histamine H1 blockers for 3 months and now the pain has gone. I just get a bit of pressure/tension in my pelvic floor muscles sometimes now. He explained that if the bladder is inflamed when you empty it the bladder deflates and the bladder walls touch together causing inflammation pain which cause your pelvic floor muscles to involuntary tighten up, thus causing you pain. I have been told I do not have IC, as different.
Interestingly my urine sample tested negative to infection when my GP’s did a dip stick test but I then insisted that they sent it away to the hospital for lab testing and the same sample came back positive with an infection showing!
Might be worth you looking into this.
Hello, thank for your reply.
That’s interesting I wonder if that could be the case with me, however I’ve had some varying results with UTI tests.
Earlier this year I had a dipstick tests after a bout of bad pelvic pain after peeing and the dipstick came back negative, but the test came back from the lab as positive. Since then I’ve had another few bouts of pain and only been tested twice. One time the dipstick came back positive but tested negative at the lab, and the second time I didn’t get a dipstick test it just went straight to the lab which came back negative... but the symptoms have felt exactly the same each time.
According to my Professor who I’m under you can get negative results back but still have an infection if it’s deep embedded into your bladder wall lining. Have you had a cystoscopy at all yet? I had one where they did a biopsy and 2 different infections were found present, despite showing up negative on all previous tests.
That’s interesting, I’m going to mention this to my doctor when I next speak to them.
I haven’t had a cystoscopy yet. The gynae I was referred to said they didn’t want to because they think I’m too young (late twenties) so they’re making me go on the pill in case I have endo and it’s connected to that...which I said I didn’t want to as it gave me depression in the past! But I feel there’s no choice but to follow what they say for now and hopefully they’ll let me have the cystoscopy when I speak to them in another couple months 😑
That doesn’t sound right to me at all what they’ve said to you. You can have a cystoscopy at any age. They give them to children. What hospital are you under?
It’s Spire in Leeds but I was referred from the NHS.
I’m not sure why they wanted me to wait if they can offer the procedure at any age. Were you able to go private or nhs? As I’ve been having a huge issue all year trying to get anything seen to at my regular doctors. They were bad pre covid too!
NHS. I chose which hospital I wanted to be referred to as I made it clear to my GP’s that I knew about the patients right to choose which hospital and the exact Consultant I wanted to be seen by. Here’s the NHS link that explains your rights here for you to see - nhs.uk/using-the-nhs/about-...
I’m under Professor Vikram Khullar at St Mary’s hospital, Imperial Health London. I did a lot of research ahead of being asked to be referred there. My GP is pretty amazing though. They are very good and wanting to help you in the best way they can.
Thank you so much for sharing this 😊 I had no idea I could ask where to be referred. I’m going to look into who may be better for me to see 
.
You’re lucky with the GP. Mine is the only one for such a large area, so they’re too busy and unfortunately make quite a lot of basic admin errors due to this and I constantly have to chase for follow ups and never speak to the same doc twice 😖
I think your getting confused between a cystoscopy which looks inside the bladder and can be done in an outpatient setting with no anaesthesia and a laparoscopy which looks inside the pelvis and can identify endometriosis. If the pill works it’s not proof it’s endometriosis or a gynae related issue. Many non gynae issues flare up during a women’s periods as they can still respond to hormone levels. Examples include IC, IBS, IBD etc. The same is true if you don’t respond to the pill it doesn’t mean it’s endometriosis. 50% if laparoscopies carried out by endometriosis specialists or gynae with an interest in endometriosis find find absolutely no endometriosis and the same is true if it’s repeated by another endometriosis specialist carrying out a repeat laparoscopy on the same endometriosis negative patients.
Thanks for your reply. Makes sense as the gynae was talking about me having both a laparoscopy and a cystoscopy if there’s been no difference from taking the pill.
I drank alcohol last night for the first time in a couple weeks and the burning sensation in my pelvis and vaginal opening is back so I’m wondering if it is IC after all
Hi Candlecat.
I have IC and my pain is always worse AFTER I go to the toilet (especially the first toilet trip after waking up).
I suspect that the urine is more acidic after it has been in the bladder for a long time and after it comes out, I am in agony for up to 2 hours each day. I also have pain when I need to go to the toilet and find it uncomfortable to go to the bathroom full stop (number one and two).
I have a urine test each month as my symptoms ALWAYS get worse just before my period. The majority of the time I think that the antibiotics make me feel better, although I have read that antibiotics do not help with IC.
I think that I have an embedded infection and most of the time the dip stick test and sending my sample off to a lab still come back with a negative result.
Ice packs seem to help, lying down helps and doing very little helps.
Hello, thank you for your reply.
I also find my pain when peeing and after is also worst first thing in the morning. I always get up in the night to go to the toilet and drink water throughout the night but it seems that any even slight dehydration makes it worse.
I’ve also found more pain in the bladder/urethra area after a bowel movement !
Do you find any foods or drinks make your symptoms worse? I’m not sure if any do for me but I’m trialling the IC diet at the moment to see if it makes a difference.
Sometimes I feel faint after going for a number two and I regularly have nausea and vommit at least once a week (but have not seen any of these symptoms online in any other IC sufferers).
My body doesn't like anything and at the moment I get severe pain after every meal, although I do try and eat light/plain things for breakfast and lunch and then eat a normal meal (whilst avoiding tomatoes).
I have also cut out all caffeine and alcohol. I find it really hard with the diet but I have seen some results. I am not throwing up as much and I do not have as many chronic episodes- where I am in agony and cant move for a few hours.
I think I responded to you in another thread!
Ps. Professionals recommend that you speak to a dietician before doing anything too drastic with your diet and they can help you see what your triggers are but I know that it is hard if not impossible to get an appointment with covid atm.
Maybe try a few eliminations of the main culprits such as caffeine, alcohol and tomatoes and see and then raise it with your specialist when you can.
Keep a diary of what you eat and when you feel pain as this might be useful to your specialist in the future.
Let me know how you get on with your diet? ♡
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