I had pelvic pain as well and was referred to a urologist. My diagnosis was Interstitial Cytitis. I think that's how you spell it, also known as IC, or painful bladder syndrome. The Urologist informed me that this could be inter-related to Lyme. Anyway, I had a Cytoscopy and Bladder distention on Friday, and I'm feeling considerably better in my pelvic area. I'm not sure if you have explored this option but it you haven't it might be worth a chance. Good luck!

I have had overall abdominal discomfort and pain. I've been to the GYN thinking it's my ovarian cysts, had ultrasounds and was told they are so small, there is no way they are causing this kind of pain. Saw a GI and had so many tests to find out there is nothing wrong there. So I was sort of diagnosed with irritable bowell and told to eat more fiber and iron. I don't know what it is, but I always have this heaviness and tender feeling though I don't have a whole lot of other symptoms to go with that.

I've went to the OB-gyn as well in March, had an endoscope of my stomach in February. Never thought it could be a bladder issue. The symptoms of IC are so small in comparison to that of Lyme. That's why I never really noticed. Then, my pain mgt. doctor referred me to a Urologist and they did an ultrasound of my bladder, which wasn't emptying all the way. From there, they did the surgery and I got the dianosis of IC. I would talk to my family doctor if I were you and if you have good insurance, try to go to a Urologist. Bladder pain can be mistaken for Ovarian cysts and Fibroids. Lyme can affect everything in your body. I had my gallbladder taken out in December which could have been contributed to Lyme. There is no way to prove this however. But I've always been an active healthy person until I apparently got bit last summer. Then it was downhill from there.

thanks for your feedback. noone has really spoken to me about bladder related problems as i have not had any syptoms related to urinating/bladder. they just assumed it was related to endometriosis as i had that diagnosis for so long although i really had very few problems with it until i woke up that one fateful day in pain and it has never gone away. The llmd told me that lyme settles into areas where there is scar tissue,low oxygen. i have been afraid to get my hopes up about the pelvic pain as i have had my hopes up a number of times mostly when i had that major surgery over a year ago. i was assured that i would get almost total relief and there has been none. So lyme has affected so many things so hopefully the pelvic pain is one of the things.It is amazing to me how much lyme can do-the more stories i read and more research i do i am amazed at how much is affected and the diversity of symptoms. Thanks and if anyone has anything else to add i would apprecitate it.

@Amccoy: I have that problem of not being able to empty my bladder all of the way. It's very uncomfortable. For the first time, except for pregnancy, I am getting up in the night having to go. It's so irritating. I wake up usually twice. It's made it so I don't drink but a little bit after dinner. I am peeing more than my 3 year old, and I still have the sensation to go. What is this IC thing? I haven't heard of it.

Interstitial Cytitis...it's very easy to treat. If you want more info, just google IC and it will come up.

Sorry to hear you are in so much pain. My daughter and I experience it from the Lyme, also. I have cysts that burst all the time now, one every 6 months or so, and never knew that is what is was. One even had baby parts in it, so I always thought it was because I had had my tubes tied. As I sit here trying to resist the terrible pain, I have bowel muscle issues and bladder control loss, and because I am very stubborn, my head feels like it wants to explode, but I keep pushing my body to limits so that I can control my levels of pain resistance better. It works some days, and others, wipes me out of commission for days. My hands also feel like they are becoming mummyfied. So, I feel for you, and hope you get to the bottom of where Your pain is really coming from. It hits in so many different ways, this Lyme, and only alot of listening to your own body can give you the answers to commute with your doc correctly. Please try finding a Lyme literate doc as soon as possible, alot of docs try to say they know, and dont keep updated on all its issues. Check out Celiac Disease too, its similarly connected....so is chronns? Wish you well....!

hey guys. I actually have chronic pelvic pain, and was diagnosed with Vulvar Vestibulitis (pain of the vulvar tissue) but I also have pain in my bladder and urethra, where i had a surgery. I was not getting any better with treatments in fact it was getting worse! I finally was told by a friend with Lyme that she knows people who have had my same pain, and recieved treatment for Lyme and their pain went away, it was a symptom of the Lyme! I recently saw a Lyme doc, and she went through symtpoms and treatments and because of all my symptoms together, she has diagnosed me with Lyme and my pelvic pain as a symptom of my Lyme. I am just one month into treatment so I haven't seen any relief yet, but I will let you know. Hope this helps!

Hi, Yes - I've had pain in my pelvic area - in the hips, groin, low back, plus uterine fibroids and lyme issues with muscles not working right for bowel and urinary control - and pain in the colon and spleen and liver and stomach. Now in my treating for lyme I've most likely had for 20 plus years, I'm finding I can feel the lyme cysts breaking up in my colon, and chronic pain dissapearing - also, feeling the pains come and go now in hips and other areas of the pelvis. I've had pian in the pubic bones and in the sacrum, too. It's now no longer constant and comes and goes more, which is a sign of healing. You will heal, too.

hugs to you, CJ

I was diagnosed with IC about 6 months before they found the Lyme. I also have had several surgeries for scar tissue in the pelvic area. Both are very painful.

Hey everyone,
All your stories are very interesting to me.
I was on an abx holiday for six weeks. Of course I get a UTI first on since high school,
(many many moons ago) anyway my Dr. ran a sample both blood and urnine and it came back e-coli. My LLMD said that was ver common.
wii I finished my UTI meds and every thing was
the same, feeling like I have to go all the time, pressure below and my kidneys hurt to lay on them. My family Dr. ran all kinds of test
MRI with contrast, ultra sounds, new blood work and a new urine sample. Now he is siding me to a Urologist. Should I go? I still have all the probems they have not yet gone away. Advice please. thank you, Dana

Dana, my advice is to go, absolutely! Speaking from experience, urinary problems are nothing to ignore. I had regular UTIs, PCP kept giving me abx, finally got in with a urologist and he found cancer. I don't want to scare you, and the likelihood that you would have cancer is probably next to nothing, but just to be safe, have a specialist take a look at you. There is so much to the renal system, it isn't something you want to mess around with. Good luck and keep us informed.

I have seen questions about pelvic pain on the Burrascano questionnaire most LLMDs give you.

Happymom
To give you a short answer after my long story.
Yes I have a lot of bladder pain and pressure.
I always feel like I have to go to the bathroom but it is ususally a false alarm.
Also when I do go to the bathroom I have very
bad pressure, it is just a bad feeling and they
can't explain why. Please let me know if you find out is this is a common problem with chronic lyme.
I believe there is something going on with my Kindey's but I do not think they are related to my bladder issues. Thank you, Dana

I’v had severe PP for almost 13 yrs. nothing has helped. Looking into genetic disorders
Now will look into lymes too as moved out into country with many ticks