New here and scared, with a question

[Sparkleh]

Hi everyone, i've been reading this forum for a few months now, i hope it's ok that i ask something, i'm not sure where to even put this post.

I'm 17, have severe M.E, was diagnosed with vulvodynia and vvs last week which ive been having problems with for two years. I am also having bladder issues. A cystoscopy was all clear and fine. I have frequency, urgency and pain in my urethra and bladder along with always feeling full and desperate to go to the bathroom. I also seem to have IBS, i always feel very constipated. I also have a tight feeling like a clenched fist in my lower abdomen a lot, like a spasm (i have a lot of these with my M.E, in my legs, arms.. everywhere) and burning and severe heat down below after i urinate.

I have no idea whether this is IC or PFD but i read something about persistant genital arousal syndrome and now i am absolutely terrified because i've now realised the constant 'need to go to the bathroom' feeling actually feels a little like painful arousal. I really am scared i have this condition. What i'd really like is some reassurance on this and advice if possible please. It feels like when you clench your fist and you get that sort of tense and strange feeling like you should stop but it doesnt quite hurt, it tingles? That's what i feel in my lower abdomen and vulva/vagina/urethra/everywhere. I often find that when i feel aroused and when i'm desperate for the loo, the feeling is almost exactly the same. Is this likely to be the problem rather than the genital syndrome? Please say yes!

The tight clenching feeling also worsening hugely when i stress.

I really feel so frightened and alone with this, i could cry.

[Want2BPainFree]

What is M.E?

And to me, this sounds like Pelvic Floor Dysfunction.
I don't see how constantly feeling like you describe would in any way cause permanent arousal. More like clenching because of discomfort.

[Sparkleh]

What is M.E?

And to me, this sounds like Pelvic Floor Dysfunction.
I don't see how constantly feeling like you describe would in any way cause permanent arousal. More like clenching because of discomfort.

Thank you very much for replying.

M.E is another word for Chronic Fatigue Syndrome and similar to Fibromyalgia if you've heard of that.

I guess it's just nerve pain but it's hard to distinguish what sort of feeling it is and what's causing it. Sorry, i guess i'm just scared of all this *blushes*

[Sparkleh]

Also, is Pelvic Floor Dysfunction the same as vaginismus?

I apologise for how ill informed i sound on all this

[maryla]

It is perfectly normal to be afraid. what helped me at first was just lots of research. We are all so different. Have you asked your uro these questions? Have you had a hydrodistention? That's the way my uro could see the cracks and bleeding in my bladder, not from a cysto. but uros do have their own methods of testing.

Also, have you gotten your IC handbook? Lots of info there.


God Bless,

[Want2BPainFree]

I think they are similar. However, not being a doctor, and not having my handy reference book "the V book", I can't look them both up right now.

What I think is that you need another opinion from a doctor. Try seeking a urogynecologist. I think someone who deals with issues in both vaginal and bladder areas, would be helpful.

I find that doctors often want to chop us up into parts, when in fact, sometimes and issue with one thing is causing an issue with another.

In my case, I was diagnosed with VVS or vulvar vestibulitis, then IC. There were times when I had what felt like vaginal cramping. It sears. I also have had times when my husband has been unable to have sex with me because the tensed muscles in my vagina wouldn't allow him to penetrate....vaginismus.

A lot of the ladies on here suffer from PFD. I do think it is a whole range of symptoms and it often seems to be caused by being in pain for long periods of time with no relief. I've heard a chiropractor say it is similar to when you get an injury, say to your knee, and suddenly, your back starts aching, and so on and so forth. In our efforts to relieve pain from the knee injury, we may sit or stand or walk differently to compensate. Then those supporting muscles and joints become fatigued or sore.

If you are in constant pain and have constant urgency, this could be a reason that you may feel these other symptoms you are describing.

I hope some others chime in here. And by the way, you shouldn't apologize or blush for asking questions here. I am positive nobody here wants to hear of another case of IC going undiagnosed.

[Sparkleh]

It is perfectly normal to be afraid. what helped me at first was just lots of research. We are all so different. Have you asked your uro these questions? Have you had a hydrodistention? That's the way my uro could see the cracks and bleeding in my bladder, not from a cysto. but uros do have their own methods of testing.

Also, have you gotten your IC handbook? Lots of info there.


God Bless,

Thanks so much for replying, i really appreciate it.

I had a hydrodistention with the cystoscopy, it hurt soo much! They still found nothing.

Sorry again for the panicky tone of my topic, i think i can research *too* much and get myself into a state..

[Sparkleh]

I think they are similar. However, not being a doctor, and not having my handy reference book "the V book", I can't look them both up right now.

What I think is that you need another opinion from a doctor. Try seeking a urogynecologist. I think someone who deals with issues in both vaginal and bladder areas, would be helpful.

I find that doctors often want to chop us up into parts, when in fact, sometimes and issue with one thing is causing an issue with another.

In my case, I was diagnosed with VVS or vulvar vestibulitis, then IC. There were times when I had what felt like vaginal cramping. It sears. I also have had times when my husband has been unable to have sex with me because the tensed muscles in my vagina wouldn't allow him to penetrate....vaginismus.

A lot of the ladies on here suffer from PFD. I do think it is a whole range of symptoms and it often seems to be caused by being in pain for long periods of time with no relief. I've heard a chiropractor say it is similar to when you get an injury, say to your knee, and suddenly, your back starts aching, and so on and so forth. In our efforts to relieve pain from the knee injury, we may sit or stand or walk differently to compensate. Then those supporting muscles and joints become fatigued or sore.

If you are in constant pain and have constant urgency, this could be a reason that you may feel these other symptoms you are describing.

I hope some others chime in here. And by the way, you shouldn't apologize or blush for asking questions here. I am positive nobody here wants to hear of another case of IC going undiagnosed.

Thank you very much.

I understand what you mean about overcompensating for an injury or pain as with the constant urgency i clench the muscles there, or when i'm anxious so presumably that would make it worse.

You're all so lovely on here, thank you again

[leelee88]

Hello:hi: and :welcome:To the ICN.. We are o glad you found us.. And please never be afraid to ask anything that is what we are here for.. I am so sorry you are having to deal with all this at such a young age. But hang in there, because there is hope and with the right help you can get this all under control.

First let me say that a office cysto will not always show signs of IC. I would ask for the Pottasium test which is less invassive, but again it might not give you complete accuarate results. Most opt for the cysto/hydro under anesthesia it seems to be the most accurate.

Also I would really look into the possibility of having PFD, your symptoms really sound like that, but please talk with your Dr about that.

And for the VV or Vulvodynia I suffer with Vulvodynia, so I know what you are going through with that, and its no fun. I am on Tofranil for that. It's an tricyclic antidepressant that helps with nerve pain and it has also helped that arousel feeling you have described.. Another good med for that is Elavil, I just could not take it due to side effects. But again talk with your dr about this. Ask many questions and don't stop until you ge the answers that help you feel better.

And if you need anything here please dont hesitate to ask..

[Sparkleh]

Hello:hi: and :welcome:To the ICN.. We are o glad you found us.. And please never be afraid to ask anything that is what we are here for.. I am so sorry you are having to deal with all this at such a young age. But hang in there, because there is hope and with the right help you can get this all under control.

First let me say that a office cysto will not always show signs of IC. I would ask for the Pottasium test which is less invassive, but again it might not give you complete accuarate results. Most opt for the cysto/hydro under anesthesia it seems to be the most accurate.

Also I would really look into the possibility of having PFD, your symptoms really sound like that, but please talk with your Dr about that.

And for the VV or Vulvodynia I suffer with Vulvodynia, so I know what you are going through with that, and its no fun. I am on Tofranil for that. It's an tricyclic antidepressant that helps with nerve pain and it has also helped that arousel feeling you have described.. Another good med for that is Elavil, I just could not take it due to side effects. But again talk with your dr about this. Ask many questions and don't stop until you ge the answers that help you feel better.

And if you need anything here please dont hesitate to ask..

Thank you SO much. So may i ask, do you have the persistant gential arousal syndrome or is it just another strange feeling from nerve pain etc? Sorry if that doesn't make sense..

Ah i didn't know that a cystoscopy wouldnt show IC all the time. I had it done under general anesthetic (too painful otherwise) and i brought up the subject of IC but my gynae said there was no sign so it couldn't be that. What does the potassium test entail please?

Thank you again for all your help

[leelee88]

Yes I was having that arousel feeling. I will give you a link where others report the same feeling. And if you did not have a cysto/hydo and only had the ofice cysto then alot of time these test are not accurate. The hydro extends your bladder so the Dr can see pinpoint bleeding this will confirm IC..The pottassium test is where they fill your bladder with this solution and if you have a burning sensation and your bladder reacts then this is a possitive result for IC..Another way to get a possitive result for IC is if when you have the cysto/hydro you have a biospy done this can show if you have any mass cells, mass cells will confirm IC..

Here you might want to read this and see your not alone with this feeling.
http://www.ic-network.com/forum/showthread.php?t=34448

[Sparkleh]

Thanks again.

Like i said, i had a cysto with hydro in hospital and apparently there was no inflammation or bleeding or any sign of anything at all, strangely.

Do most people manage to find relief from the strange arousal feeling? It's strange that it's this freaking me out the most but i have a feeling it's actually nerve pain coupled with feelings of urgency. At least i hope so.. :(

[leelee88]

Oh ok Im sorry I thought you just had the office cysto my bad.. What helped me the most was the Elavil, then switced to Tofrinal. It helps with nerve pain, which I believe is what causes that feeling.. Also if you do not have IC then all fingers would point to PFD.. and getting treatment for that will help the pain a nd pressure feeling you are having. Please talk to your Dr about checking you to see if you have PFD and get you into a phyical theripist..

[Sparkleh]

Sorry the confusion was my fault, i didn't explain myself very well.

Just one last question i promise, do you happen to know how you can be 'checked' for PFD?

Many many thanks for taking the time to help me, i really do appreciate it so much x

[leelee88]

I truly don't mind the questions that what I am here for.. Your URO or GYN can check you.. They will have to examine you like if they were doing a pelvic exam. When my URO examined me she felt around and when she hit this one spot I about came off the table. She said YUP you have PFD for sure. I guess it's like a pressure point or something. But I know it sure hurt when she touched it. So thats what the Dr would be looking for.

Now I will say this, That was my second URO my first URO was looked at me crazy when I mentioned PFD.. SO if you get that look please move on. Because it's real it does exsist and it causes lots of pain and discomfort.

[Sparkleh]

Ah, that's where the problem'll be then cos my vulvodynia is so severe they couldnt even take a tiny swab of the area, never mind a pelvic exam.. ah well i shall have to speak to my gynae.

Thank you x

[leelee88]

Then please ask about the Elavil or Tofrinal.. You need to get that VV under control.. (((hugs))) I am so sorry really...