Is my pain normal???

[aebook]

Hello Everyone!!
I was told by my urologist that she is 100% sure I have IC without going invasive because of my symptoms. My question is....are these symptoms normal that I'm experiencing??? I have a complex cyst on my right ovary (a small one) and have had every organ except for my colon and lungs looked at. Besides the lower pelvic pain that is a dull constant aggrivating ache all the time, I as well have mid-abdominal & mid-back pain. I didnt know if this is a symptom that others experience with IC??? I'm just not convinced that this pain can extend that far unless it effects the nerves, I also have fibromyalgia, which i know probably intensifies the pain, as well as I was told I have IBS. Other than the pain in my stomach, do any of you experience that you have something in the way of your bowls when having a bowl movement, or like you can't fully empty your bowels? ( I read that is another symptom of IC) This is miserable, I had a partial hystorectomy in Sept. of 08 and thought all of this pain wouldn't return! Any insight would be greatly appreciated! I'm so scared this is something else. Thanks to you all!!!:help:

[KarenAnne]

I know from doing gyn ultrasounds, that it depends on your cycle day to determine what kind of cyst you have. If it is after you have ovulated, then the complex cyst could be a corpus luteum. Around mid-cycle a clear cyst starts growing, called a follicle, & when that follicle is between 18-24mm it ruptures & the egg is picked up by the fimbrial end of the fallopian tube. After ovulation the empty follicle fills back up to produce progesterone & that's the corpus luteal cyst. It has mixed echoes inside.

I know my first, diagnosing urologist wanted me to have a cysto/hydro/bladder biopsy to rule out other conditions that produce the same symptoms as IC. I was glad I had the procedure, though "invasive", it gave me peace of mind. It's not a big procedure-I've had worse. Only you can determine if you are comfortable with your doctor being 100% sure without actually seeing the inside of your bladder with a hydrodistention.

Anyway, I have IBS, VV, PFD, & fibromyalgia too, & get the same symptoms. Jill has some great info on here about IBS. I know how you feel, something is always flaring. Also, I have had physical therapy for the PFD & that helps w/ the discomfort. Feel better soon.

[ICsmiles]

Hi aebook -- wow. I can relate so much.
I don't know about the cyst but everything else sounds so familiar because I have been told the same things. I am so sorry your hysterectomy did not remove your pain. I still have my uterus but have been tempted to ask to have it out, thinking maybe my pain would be better without it. But my doctor says it will not help; that my pain is primarily IC and referred pain. I am still researching other things, which I mention below.

The ache in your low pelvis sounds like typical bladder IC pain. Does it feel better during or after urinating? (when bladder is empty)
Is it better if you are careful with your diet and avoid any acidic foods?
Do you also have urgency and frequency?

I have been told that inflammation in the bladder can refer pain throughout the pelvis, due to the many nerves running through it. Here are things I have researched and have asked / or am asking my doctors about because I also have pain in areas other than my bladder:

- Irritable Bowel Syndrome (for me the problem is constipation, which causes my bowel to spasm and also causes bladder pain as the bowel passes right behind the bladder) So it is vital to stay regular - I use Miralax, which helps a lot. I also use Beano for foods I have trouble digesting, like beans and cabbage and some other veges.
- Food Allergies (which can cause bowel spasms) You can try an Elimination Diet.
- Adhesions (which can occur after pelvic surgery - there is a lot of information if you do a search on pelvic adhesions)
- Pudendal Neuralgia, or Pudendal Nerve Entrapment
- Pelvic Floor Dysfunction (muscles tight, with trigger points) - Many IC'ers have great success with physical therapy to address this - Read "A Headache in the Pelvis"

The exasperating thing about IC and pelvic pain is that there is no cure, and as far as treatments we are all different. We all have different symptoms and varying success with treatment. It can be frustrating and even heartbreaking when you have tried treatment after treatment with no success. But you are not alone, and you may be fortunate to find what works for you relatively quickly. I hope this helps a little! :)

[aebook]

Karen,
Thanks so much for your reply. It helped to make a little more sense to me about how complex cysts work. I think my biggest fear is either ovarian cancer, or colon cancer. I'm only 25 but have always had a horrible fear of cancer. I've heard unless it's a rare case that it should be the farthest thing from my mind, but for me it is a very real possiblity. I think right now what I really fear is that if there infact something going on in my colon they won't find it until it's to late beacause of my age (normally they don't automatically recommend colonoscopys to ppl my age). Therefore when I have my ultrasound follow up on Friday I'm thinking of asking the doc to order one just to be safe. I know with my IBS, especially today, when I get constipated or strain at all to have a bowel movement I find blodd in my stool...sorry if that's to graphic. It's bright red, and I don't care what color it is.....it's very scary. I hate all of this. I have a very hard physical job, and everday is such a struggle with these conditions, so optimisim is the farthest thing from my mind right now! Thanks for the help!
~Angela

[KarenAnne]

Angela, You're welcome. Tell your dr. about the blood. It may just be hemorroids, but if it gives you peace of mind, tell your dr. to give you the colonoscopy. I can deal with things better once I know what's going on.

And don't forget to tell the tech doing your ultrasound what day of your menstrual cycle it is when you get your u/s. Let me know how you make out. Good luck.

[ICNDonna]

Feeling as you do, I think the colonoscopy is a good idea. And I suggest you share with your doctor your concerns --- you might want to have a potassium sensitivity test to help you feel more confident about your diagnosis.

When I was being diagnosed I told my doctor about my cancer fears and he did speed up the testing process for me. It was actually a relief to have a definite diagnosis.

Sending gentle hugs,
Donna

[aebook]

I'm so glad to hear you say bladder pain while making bowel movement. That was the feeling that worried me so much because it seemed as though when making a movement it felt like my bladder was ripping, or like something was "in the way". So, sorry for your pain but glad to hear i'm not the only one!
Thank you all for your support, it means so much when everyone else thinks I'm crazy!!!:smile tee

[mlzippy7]

You are not alone!! I also have more severe pain while having BMs...TMI, I know!!

[bamagirl]

Hi aebook,

Don't feel alone. I too have all the same symptoms that you have. I have IBS, mild back ache and abdominal pain and I have pain with bowels, and fibro. I do understand how frustrating it is to have all these symptoms on top of IC. I is very normal. I see a pain management specialist. I would suggest maybe making an appointment with one because they do understand your pain. I have been seeing one for 5 years now. I am on a duragesic fentanyl pain patch. It aggrevates my IBS but I take myralax when needed. It helps with constipation. The patch hasn't taken away all my pain and I still have some bad days but you never know. It could really help you or something else could help. Lyrica is good for fibro and IC. Just some suggestions. I have had IC for 19 years. I really hope you find some relief soon.

[aebook]

Thanks for your reply. It's good to know I'm not alone, or crazy! I saw my pain specialist/ rhumetologist for the first time last week. She was awesome and specializes in Fibro. She said the urologist seemed to have a pretty good hold on my pain and didn't want to change anything up for me for the time being, just keep her up to date on my progression. I have been on so many meds over the last year for my fibro and the only thing that seemed to work until this point is vicoden. I was almost off of it for a while until I had this IC flare. I still take it but only because Im waiting for my other meds to kick in over the next couple of weeks so I can back down. I did find out to day however that my cyst is gone!!! Yeaaaa, so I'm not so worried about that now. Thanks so much for your insight! I didnt know this is how IC feels. I think i'm going to suggest potassium test or cystoscopy just to have firm diagnosis. :smile tee
Current Meds:
Neurontin - bladder and Fibro pain
vesicare - bladder
Lexapro- anxiety and depression
vicoden - fibro and bladder overall body pain

Current Diagnosis
Fibromyalgia
IBS
IC- 90% sure response of urologist

[bitesize]

I have this pain! I'm still not sure of my diagnosis of IC, but I wanted to let you know that I also have this pain (feels like something's going to break inside!), and sometimes I feel like I can't void completely, unless I put pressure on my perineum. My mom told me that trick when I was young, due to problems with hemmorhoids. Also, I notice that even if I urinate, after voiding my bowels, within a half hour or so I urgently have to urinate again, and then I feel a lot better. Except for the hemmorhoids. God, I'm so sick of everything hurting.