Does anyone have an unbearable pain as the bladder fills and a horrible tightening after urinating within the vulvar area? No doctors know.

[lagunagirl93]

They call it interstitial cystitis with pelvic floor muscle dysfunction...But I'm not sure that's what it is. No UTI for over a year, although feels like one 24/7 for me. Any response will be truly appreciated!

-C

[ncoplin]

YES! I have the same thing! I get bladder spasms after urinating. Recently, it became severe. My urologist had given me over the counter Cysta-Q. It helped a little. I also use Prelief. Neither has given me substantial relief. He also gave me a "bladder cocktail" which I can administer myself. Nothing seems to help a great deal. Recently I had a flare up of IBS AND Bladder spasms (all due to a hysterectomy 4 1/2 yrs ago). He gave me Pyridium 200mg three times a day. That has calmed the spasms a little. I wish I had answers. I haven't tried the IC diet yet. The doctor says it doesn't help much but people who have done it say it makes a big difference. I have an interstim but it doesn't work because one of the leads is bad. Sorry I couldn't help too much, but know you are not alone. If anyone else has suggestions, I will try anything.

[lagunagirl93 in reply to ncoplin]

I had a bladder cocktail too! And it didn't work. I just don't understand how technology in medicine can't figure this one out it sure is a life ruiner at its worst circumstances. (Like right now) mornings are usually the worst because I go to the bathroom after 8-9 hours of stagnant flow.

The only thing that mildly helps me is tramadol

[JudyRentz in reply to ncoplin]

My specialist in pelvic prescribed Elmiron,but,my husband found the natural ingredient,aloe Vera capsules,920 dollars cheaper per month! Desert Harvest,800 222 3901. Three a day faithfully,also Gabepentin. 600 Mgs. If this doesn't help see a pudendal pain specialist.Almost eight years and still going!

[charlie83]

Hi there

Oh you poor thing. Intersitital Cystitis is a condition where you have all the symptoms of a UTi but there is no bacteria present as it's due to damage to the bladderlining,not due to bacteria. Some people do think that IC is caused by an underlying low grade infection but that is just one theory.

For IC, you should avoid cranberry juice completely (unlike the bacterail cystitis where cranberry helps) and and try to drink calming things, like camomile, milk and peppermint tea. I find that anything like citrus or acidic foods and drinks trigger it really badly.

Have you had actual diagnosis of IC? and/or of pelvic floor dysfunction? i think a lot of these conditions can be making other conditions worse.

I think that pelvic floor dysfunction can cause all sorts of horrible pelvic symptoms, and perhaps could be triggering the vulvar pain? have they mentioned vulvadynia to you at all?

have a look at ichelp.org

it's really important to have a good urogynaecologist or a doctor you can talk to who will explain all these things to you.

I am currently on a few different medications to help ease my symptoms.

you're not alone, take care

xx

[Woodland16 in reply to charlie83]

Just a suggestion, I started diluting my orange juice because of the same problem and it helps.

[JudyRentz in reply to Woodland16]

NEVER citrus juices, FOREVER

[lagunagirl93 in reply to charlie83]

Yes I have been diagnosed with unknown cause of IC and pelvic floor dysfunction I see a lot of doctors including urogyno within kaiser permanente the past 2 years

Had cystoscopy twice, MRI and physical therapy. I'm 20 years old and I know I'm not alone but I feel like I can't live my life and study for my classes with all this pain. As for the IC diet, I drink as much water as I can to dilute the acidity and try to avoid alcohol because that brings on flare ups alot

After I urinate depending how much my bladder hurt before, the pain in my female region is non-stop throbbing and pain throughout the day. So far no real diagnosis except the broad term of IC..

[JudyRentz in reply to lagunagirl93]

See a pelvic pain specialist or a pudendal specialist! this only gets worse! Find my previous blogs.details of this nightmare! Judy R

[charlie83 in reply to lagunagirl93]

Has your urogynaecologist or any other doctor recommended any medication and/or treatments? I know how tough it is to try and carry on as normal when you're suffering from so much pain but there are ways to help ease this.

With ic a lot of it is trial and error but with associated conditions there are other sorts of help you can get. Did the physical therapy help at all, or did it worsen your symptoms?

When you were diagnosed with ic, did they not then give you any follow on advice?

You should not have to suffer like this.

xx

[lagunagirl93 in reply to charlie83]

Well I didn't go to follow up appointments for pt because the kegel and breaking excersises just weren't doing it for me... No my doctors just want me to stay on nortriptyline and see if that works in 6 months... I know it is trial and error. It gets worse after alcohol when I wake up in the morning I can't even have coffee my favorite drink. And anything sexual is out of the question for me now. I was normal until I was 18 when I went through trauma there... But the trauma I went through isn't seen as a factor by my doctors. Also, ever since I was a little girl I was susceptible to bladder infections and utis. Been on so many antibiotics in the past...but now? 2 years and no known real legitimate diagnosis. SUCKS !!!!

Putting a warm washcloth or water bottle on my pelvis helps when the pain is more mild.

[charlie83 in reply to lagunagirl93]

Hi again

a lot of women who suffer from IC and associated pelvic floor probs find things like kegel much too much.....it's a very extreme thing to do, and i rally believe that we should be more gentle to our bodies.Also, if you have a pelvic floor that's actually too tight rather than too loose, kegels etc jut make that loads worse and can do real damage.

how long have you been on the nortriptyline? it took me quite a long time, months rather than weeks, to see a difference when i started amitriptyline.

xx

[jacquieb Volunteer]

Ladies, I hope I can help on this one, but will try and be a brief as possible. OK. I am going to combine both mine and my daughters problems. After nearly a year my 30 year old daughter had a UTI, and was absolute agony. The GP's sample was negative and the labs came back normal too. Without being dramatic she wanted to die and came back to live with me as she couldn't cope. I felt helpless as a Mother, and after much searching we found a Professor of Medicine at the Whittington Hospital, London. who said "I can help you" you have a very bad bladder infection and within a few weeks I had my daughter back. That was nearly two years ago, and even during her first pregnancy she suffered from the wretched thing and was on a/b's most of the time. First get your UTI chcked out, not by a GP in the surgery, or even when the specimen is sent to the lab. Once that's ruled out you can move on. This is where I come into it, but mine goes back nearly ten years. After a routine smear test I started to get the burning, stabbing feelings in my vagina. Fast forward, my first point of call was Amitryptyline 10mg. It then had a name Vulvoydynia, caused by, still not 100%, by a trapped nerve, the pudendal. My symptoms got worse and thousands of £ down the line its still not resolved. During this time I had a anterior hysterectomy, with two prolapses thrown into the bargain. Not something i wanted to do, but it became necessary when my bladder started to drop badly. I often had a tugging feeling. I got thru that OK and my vulval discomfort and sensitivity stayed much the same, it didn't get worse so i was pleased. A year ago, I had all of the symptoms you mentioned and was diagnosed with IC. It drove me mad as I was forever going to the loo and it was painful, the sensations were awful. I tried Cysta-Q and prelief and it sort of helped, but not enough. I decided against anymore treatments, i had had enough so decided to keep to a better diet. For over a year I haven't drink tea, coffee, eat tomatoes, and orange juice, dont go there. Eat melon or mango and the odd banana. BUT that wasn't it either it was something more than that, so I decided to take a muscle relaxant, Baclofen as one of the main probs was infact muscles. All of the blimin things in your pelvis, including your bladder. I also realised this when I had nerve block injections, it would cause a massive tightness in the bladder, as some of the steroid was injected near the labia. It took months to realise this and only when i started to take the muscle relaxant did i start to feel better. I have so many theories to all of this and I said I would be brief. Its not 100% cured, and I do notice that I when my bladder gets full it hurts on occasions, but I try to avoid that. I still have my vulvoydynia, but its managed much better thru drugs and believe it or not emu oil, as my sensitive vagina cant tolerate anything with added ingredients. The emu oil i get is from an actual emu farm in the States and its saved my life. I put it in the vagina to replace oestrogen. So that's just a part of my experience and I hope it will help you all. Please give us updated and its nice to know if the info has helped you. Don't give up jxxxx

[lagunagirl93 in reply to jacquieb]

Thank you so much. So are you saying even though I've multiple tests through lab cultures and gp, there could be an infection? Because I get yeast almost every time I have intercourse and putting plain Greek yogurt down there helps with that and even after when I don't even have yeast ! -C

[Alice2355 in reply to jacquieb]

Are you still on here Jacqueb this post from three yrs ago, sounds exactly what I have been going thru, especially since a prolapsed bowel and partial prolapsed, ahhhh fibro fog, what's it called, anyway had the op and always getting the symptoms of uti but nothing in any urine tests since prob last yr. just had my. Oh uterus was the other word lol, just had my latest smear this morning and cannot stay away from toilet with my bladder. Weird had none of the symptoms before my smear this morning, maybe a coincidence? X

[vinjamurie]

yeah, you did not mention your age in your question. But anyhow the similar kind of situation is being experienced by my mother, she is around 68. The doctors could not understand basically and ruled out that no UTI, but still suggested to take a standard medical course for UTI. Even after there was no change in her situation. She feels unbearable pain after she urinates, the pain runs through her legs as soon she starts feel like to urinate. I used to give her regularly plenty of Cranberry Juice even, but no great change was felt.

Fortunately, one day the Cranberry Juice I could not get from the nearby stores and I bought fresh Black Grapes Juice, after she took that miraculously she started feeling better and better. As of now she is continuing to drink fresh black grape juice, and changing with Fresh Lemon Juice with added sugar/salt, this is working good. The doctors were coming with different theories but not clear what might be the cause. Waiting for one of our family doctor arrival who is away from the country.

Hope this would help you until you get the right Doctor to give some Pro-Biotic medicines instead of Anti-biotics.

Good wishes....

[Ritz55]

My bladder hurts after I urinate? What does that mean is it's bladder spasms my urologist put me on vesicare and does not work I been on it for 4 months so I stop the medication