What does your "PAIN" feel like?

[smcclafferty]

I just wanted to know how people describe their pain...just mostly the pain part of it, you don't have to include frequency/urgency. Thank you.

[ICNDonna]

I have always felt mine feels like extremely severe menstrual cramps, but slightly displaced.

Donna

[Bessie]

My pain is pure h***
It feels like burning broken glass or sandpaper. I have constant 24/7 pain and it hurts to sit, drive, and the pressure is intense. It has changed my life but I will not let it take over.

[GriffsMommy]

Mine varies so much. Sometimes I have the bad menstrual cramps like Donna describes. Sometimes mine is a very sharp shooting pain that seems to go right through my bladder. A lot of the time I have a LOT of lower back pain thrown in there just to make things more interesting :lmao: Ugh!

[leelee88]

Christine, That is exactly the way my pain feels......

[jen74]

My pain feels like it is in my upper vagina. The doc said that is because the bladder is right there. I get severe burning pain and cramps and also it feels like someone scraped the inside of my bladder with a bunch of nails or something. The pain seems like it is in the bladder neck, right where my bladder meets the urethra. I also get sharp pains as well at times.
Jen

[Sarojini]

Mine varies a lot. Generally, I have an aching heaviness in the pelvis which is there most days but is tolerable. When I flare, I start cramping up and then the sharp, shooting pains come. Often, I'll get a sharp pain and a cramp at the same time and it just knocks the wind out of me. Sometimes, too, it feels like something is trying to scratch its way out of the bladder... that is the pain that wakes me in the night. Often, I have a dream that I am having abdominal surgery with no anesthesia, and then I wake up to that pain and some nausea.

Hate IC pain!!! :cussing:

[Big Red]

I get pain in my lower abdomen. I have pain there about 24/7. In a big flare I can hurt from Hip to Hip and down both legs to my knees. I also have Pelvic floor disorder so alot of times it wants to get into the action.

[RAS6]

My pain started like a sharp, quick stab on my left hand side near the pubic bone. I now have that pain almost everyday non-stop, but it isn't as intense. I also get pain in my back and legs (a dull type of pain, like how you feel after walking all day), pain that feels like period cramps, just a bit lower, a burning, hot pain behind my pubic bone, and shooting, "catching" vaginal pains (I describe it as being similar to broken glass or barbed wire).
I do have PFD as well as IC though.

[smcclafferty]

My pain feels like it is in my upper vagina. The doc said that is because the bladder is right there. I get severe burning pain and cramps and also it feels like someone scraped the inside of my bladder with a bunch of nails or something. The pain seems like it is in the bladder neck, right where my bladder meets the urethra. I also get sharp pains as well at times.
Jen

Yes, a lot of times mine is right at the bladder neck, where it meets the urethra, and gets worse with sitting.

[PickPink]

I have constant daily pain (and pressure), which feels like an extreme menstral cramp (I've heard others describe it that way too). That's constant and seems to be never ending. Besides that, I get small daily flares where it burns and feels as though someone punched me in my bladder. Every few days I'll get a "medium" flare, where it feels like someone is dragging their fingernails over my bladder.. again and again and again. And about once every week or two, I get really bad flares.. where I can't even describe the pain. It's like acid that isn't just burning, it feels like it has literally eaten my bladder away to nothing. When I get those, I just lay in bed, in the dark, and I don't want anyone to talk to me or even look at me. I just don't want to move. Sometimes I even just live in the bathroom :toilet: so I can pee every 10 minutes. Luckily, those aren't daily - and I know for some of you it is daily.. and I'm so sorry for all of you .

I'm definitely done trying to control this with diet alone though. I gave it 3 months, and my constant pain and pressure hasn't reduced, and my flares aren't reduced. I just can't do it alone anymore. Tuesday I have an appointment with my doctor to try and figure out a new treatment plan. So wish me luck. :)

[Big Red]

I hope you can get something from your doc. to get relief. Your bad days must be really bad hopefully he can get you on trac with somethinh to relief those days. I know there no fun I have been there.

[Trishann]

I am like most of you feeling like menstrual cramps. I always had severe menstrual cramps from day one.

Sometimes sharp shooting pains in the bladder, vagina, rectum.

Always 24/7 intense pressure pain in the bladder.

Then at times I get this pain and I cannot describe it, but when I do get it, it doubles me over and I can not move until the pain has passed.

Severe burning especially if I don't drink fluids for a short time.

Sometimes get this throbbing and pain on the outside.

[Trishann]

Hope the best Jenny.

Sending hugs, Trishann

[TexasHoney]

My pain varies but most of the from burning to intense pressure above my vaginal area. In my worst flares I often feel like my bladder is being slashed with razor blades and hot acid is being poured into the wounds. I also somtimes get a real bad stinging sensation in my ureathra during urination.

[chicakms]

What started all of this for me was an intense pressure feeling in my behind. I don't know exactly how to describe it, it's not painful but just uncomfortable. Kinda like you have to go #2 but can't go. Heat helps the feeling. I told my doctor about it and she suggested an ultra sound. The ultrasound showed that my bladder was retaining urine...83cc of urine were left after I went to the bathroom so she suggested I see a urologist.

I went to the urologist and she basically listened to what my symptoms were, and looked at the lab results and said let's do a cystoscopy it sounds like IC. I went for the cystoscopy yesterday and she saw irritation and gave me Elmiron and said come back in 3-4 weeks.

On a bad day my flare ups feel like there is a fire burning between my legs. It just feels hot, and irritated. Sometimes taking a bath makes it feel better. And laying on a heating pad on my stomach helps too. It also burns when I go to the bathroom, so much sometimes the skin outside like vaginal and anus area get diaper rash. My mom bought me Vagisil medicated wipes for the burning they seem to help a bit sometimes.

[KathrynPInk]

I have a question or two to you all out there with this variable pain. Sometimes I get the burning pain located somewhere in the bladder neck or urethra and other times...a sharp pain that feels like I have a pelvis bone out of joint or something strange like that! Have any of you though you had a hip or bone problem, only to find out it was the dreaded IC again? I could hardly walk...(I know I am speaking with the choir here girls)This was a different pain from the usual pain from riding in the car, running, or anything that moves the bladder...I know that pain well.
And the acute pain from the pelvis did subside....after i literally rested in bed for a couple of weeks. I am asking if any of you have ever felt the pain was coming from bone, it was so deep...I had broken both my arms in one fall a long time ago, and that is what it felt like. (long story..can anyone identify with being careless and less than careful walking with groceries and holding a kid's hand?!
I even had an MRI because I swore I thought that the pain was a pelvis bone issue! I felt dumb, but I could not imagine it being my IC until everything came out ok and the Doc said "we don't know". I have not shared this particular pain attack with my uro...I am sure he would say, "Katheryn, You Know what it is!" in a very kind way. But the good thing that came out of the MRI was that the fallopian tube /ovaian cyst was found. Now number two question: should I have the cyst removed? My OB GYN is saying it is "up to" me if it is stable and not growing...but I am nervous about it. I know you guys can only give me your opinions, but I value your input!

[sandymarie]

I am 52 and have had ic. for over 25 years and life is miserable if I did not have the Lord and talk to him so much. I am still seeking answers myself, so I can help others. My pain when really bad is 15 on a 1 to 10 scale. severe low back pain like I am breaking in too. Constant burning but not while passing urine. severe spasams in the right abdomen similar to labor contractions. Hold on,God said we were healed by the stripes that Jesus took and I know he took one for ic. patients. He promised his word will not return void, remind him Of his word all the time. He enjoys hearing from all of us. I take flexiril when my back hurts and it somewhat helps. and I am on strong meds. I hate it., I know one thing for sure we have to believe the lord's report that he has already healed us. It's hard when you are in pain , but it will happen. I will be praying for all ic patients for sure, I hope this helps you. If I find anything else that might jelp you, I will let you know. hope to hear back from you.

sandymarie

[jen74]

This disease is the worst. I am at a point where I just pray each night that God will spare me and just take me so I wont have to wake up in another day of pain. I can no longer be a good wife or mother anymore. Without that, there is nothing worth living for anymore it seems. Does anyone else feel this way?
Jen

[PickPink]

Hi KathrynPink! I'm not much help with your first question.. But the second I definitely can. I have had cysts since I was a teenager. I opted not to remove them, and last spring I had 4 or 5 pop all at the same time. When it happened, I thought I was going to die - one of my coworkers (yes, it happened at work!) rushed me to my doctor who let me know what happened. She gave me some pain meds and put me on bedrest for a few days.. then I was good as new! During my catscan in December, they found another cyst (just one this time.. :) ) and I opted not to have it removed again. You might ask me "Why?! You already had multiple pop! why risk it again?!" Well the way I look at it, I would rather have them pop on their own, which only hurts, it doesn't cause infection or any other complications (and not every cyst will pop. And to have many pop at once is extrememly rare), well I just think that's better than opting to have surgery and suffering for more than just 2 or 3 days to recover.. and all the other worries that go with surgery! So That's just me though.. some people are fine with surgery, I'm terrified of it. Whatever you choose though - good luck!! With everything.. I hope you don't have to be in pain for much longer :grouphug:

[jjt001]

I think it's interesting that for many people the pain is similar to menstrual cramps. That must be why there is often some question in the beginning as to whether the pain might be from endometrosis. For me, the pain is nothing like a menstural cramp. I get burning, stinging and spasms, along with a dull ache and vaginal shooting pain. Some days my bladder feels like it's a ball of fire, other days I feel like I have a long sore going the length of the right side of my bladder. And, although I get spasms, it's nothing like my endometriosis pain or like menstrual cramps.

Even though I have vaginal pain, I knew that it was bladder related, as it's not like my period pain at all (though my bladder symptoms were much worse during my period before I started Loestrin 24 FE, it wasn't the cramp like pain of the period itself).

Just wondering if most people can describe their pain as being like a menstrual cramp? That's just so not it for me, just goes to show how very different we all are with this disease!

[smcclafferty]

This disease is the worst. I am at a point where I just pray each night that God will spare me and just take me so I wont have to wake up in another day of pain. I can no longer be a good wife or mother anymore. Without that, there is nothing worth living for anymore it seems. Does anyone else feel this way?
Jen

Yes, I feel that way.

[KathrynPInk]

http://www.ic-network.com/images/spiritaward.jpg
This post absolutely deserves the spirit award for the support, courage and helping hand it offers to jen!!! Awesome! - Jill

Hi Jen,
You sound so depressed and when one is the sickest with this illness, depression is so very common as i am sure you know. It changes the way we view life and changes our ability to see our resilency. As soon as possible, I urge you to find a counselor or therapist who can work with you and your Uro to help ease your mental anguish as well as the physical pain. (even if you have to go to the ER for someone to see you right away) I know that is not ideal, but you need someone to take care of you at this point. I was so down when I was first diagnosed years ago, but now that I have had some remissions at times, and i am better able to cope, well....most of the time. I think it is an ugly sickness that can try and steal away our hope, but dear, there is hope, and when you are so sick, it is hard to find it in you.
I think we all need help emotionally when this illness has us in its grip. Please reach out to get help, and do not give up. The stories on this board are proof that there is a better day. It can be hard to feel it, but it will be there.
I am so sorry you are having such a bad time. I know what it is like to feel that nothing can get better, and to worry and be sad about the roles as wife and mom....but things can turn around. They really can. And we all need to be able to reach out and get the help we need. I know what it is like to feel that our lives are not going to be good again, but don't give up and please let the people around you know about your feelings, or at least find someone who you can share the dreadful feelings with. No one should have to feel this hopeless; I know that IC can sometimes make us think that nothing will be good again, but with the right help, you can get better and feel better.
Please take care, and I know there are many of us praying for you. Right now, you need someone who can help you with your hardships and reassure you as you fight this illness and find the best treatment. Let your Doc know just how depressed you are.


Katheryn

[lonen86]

Texas honey very good description :headbang: That's how I see it.

[Moonheart]

Amen Katheryn!!!

As to the menstrual cramp thing...most of the time I feel like I have menstrual cramps. That's the underlying, ongoing pain. Then there are the others, layered on top and underneath, and side by side.
There are the sharp, stabbing pains, the burning, the acid, then another that feels like braxton-hicks contractions. That tightening feeling late in pregnancy. Very strange I know.

[kspeer]

My pain varies as well, but during a flare I have intense bladder pressure. I feel sometimes as though my bladder is going to fall out (sometimes, I wish it would!) I also feel high vaginal pain and get intermittent shooting pains in my bladder and urethra. I feel the most pain sitting and lying down at night. I also have very intense low back pain. I can feel my anatomy on the inside. A lot of days I feel like someone is holding my bladder in their hands and squeezing it as hard as they can.

[DaniBelle]

SMClafferty and Jen24,

Yes, I feel that way. I've taken triple the amount of pain medication today and the pain won't go away. I've had more and more mornings when I awaken and start crying. I think "No, not again...at least while I'm sleeping, it's 'gone' for a few hours". What makes it worse is my husband. He's fallen by the wayside. He doesn't ask how I feel anymore and gives me little dirty looks. He told me the reason why we can't buy a new mattress for our bed is that I used up the money for my medical expenses [the deductible] (this is not true...he just spent a bunch of money on his outdoor project...at least $5,000 when it's all done). When I asked him why doing a new deck is more important than replacing a 12 year old mattress, he said "It just needs to be done". I said we live inside, not outside. I asked him why he had to make it so fancy (with skylights and built in grill) and he replied "Because I want them". It's hard, because even though we are financially comfortable and are not wanting for the essentials, I can't work anymore and he knows it, so my seasonal job paycheck (which I used to spend on things for my boys), I won't have anymore. I'm stuck in this I.C., Fibro, Endo prison. If it weren't for my boys, I would be more than at peace with not waking up. God can't expect me to go through this torture if I were alone. I am always in pain and he doesn't care. I have to keep my focus on my sons and be there for them in this broken body. I've asked my husband to read about the pain of I.C....he claims he has and knows "all about it". I truly doubt it. Life is not life right now and I've lost my faith that it ever will be again.

Yes, I feel that way.

[KathrynPInk]

Dani, I am so sorry you are going through this. I have had that feeling when the man you married seems more mad than empathetic when you are doing the best you can. I do not think IC is understood, in the way it robs us of who we were and who we thought we would be...at least during the most awful of times. (but we are still there, just hidden in pain and sadness during many a day.)
I am hoping you see a light at the end of your tunnel soon, as well as any of us that have had these awful feelings...of "if it wasn't for my children.... I'd ...."
I have to believe that we are living in an age when there is going to be a breakthru for this illness. I believe that we are nearing something new around the bend. Hang tight. I also know that along with this illness making us so depressed, the meds we HAVE to take..can impact us emotionally.
I hope you feel better soon, and I am sorry that you can't even get a loved one to know that you do not need to feel guilty about your illness...that is bad, and probably makes you feel even worse. We do not need to ever feel guilty because of what money our IC has caused! You are trying to get well, for heaven's sake! This IC is something that none of us deserve, but this is life and I am hanging on to the fact that change can happen and I pray it happens for you soon; I hope you turn the corner and feel more empowered and better. You deserve it. I am a woman who needs a comforting husband too....it would be a nice feeling to have someone who "gets" what this illness does to one's spirit.

Please take care,
Katheryn

[sandymarie]

Dani,
I know how you feel. I have walked right where you are walking now. I have found that for there to be a testimony there has to be a test at some time in our lives. I still know it is hard, but remember that you did not choose this, nor is it the will of God for you. Others that have not felt pain like us can be sooo unconcerned, but know this there are a lots of people that do love you. All of you and more important God loves you. I also have the shooting pain in my vagina, severe spasms and lower back pain. Zantac helps with the burning if you have any. I burn even when I am not using the bathroom. Try listening to parise music and spend a little quite time with yourself and the lord. I always used to pray that the Lord would change my husband, and while God worked on him I ask him to change me also so things might not hurt so badly. Stress and rejection sure does make you pain worse, Also a level tsp. of jello, mixed in jelly or jam. has helped my burning and also a little baking soda in some water helps the burning. It might help but don' over do it. Bactrim helps calm:pray: me when I especially have a flare up and feel like I have a big raw ball in me. I have also found that it helps if i use a spray bottle of water and spray myself with water every time I go to the bathroom.
Not a cure, not doctor recommended but I have tried everything I could think of. As for you home situation. My husband and I just laid hands on your situation and prayed for your husband, babies and you. after all God can do more than we can even think to ask. I don't know where you are but there is no distance with prayer. Be encouraged and pray for you. God will take care of the other. I hope this helps. It not easy but keep the faith, God will come through for you, he did for me, and you are no different from me. Our healing has been paid for by Christ and it will come.

God bless you and hope to hear from anyone that just needs to talk.
Read Psalms 91 over yourself and you babies everyday and watch things happen.

[~*~Christine~*~]

When in a flare it feels like someone is playing my bladder like an accordion and something sharp is being draged in the inside
When not in a flare (rare) just feels bruised and sore