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kimberlyJB
09-25-2006, 07:15 PM
I just recieved my IC Optimist and I was very excited and comforted to be able to sit back and read. It is truly amazing work that ICN is doing and I am incredibly greatful as I forge ahead in this difficult journey with my condition.

As I do so, I am coming to the realization that I will have to address an issue of utmost importance. I have recently rededicated myself to pursing treatment/support etc. that we need to get through this. Vigilance is not my forte, but maybe this is something that I am supposed to learn through all of this.

I read the transcript of the article about Pain and sex and even though it was wonderful and addresses a wonderful topic, I just feel unsure about the findings. First it addresses penetration as a predominant problem. With my condition (which presents itself to me often as more of a urethritis type syndrome) I find that even without penetration, any sexual stimulation will increase my symptoms exponentially and this state could last almost indefinitely. Since I am with a woman right now, penetration is not a foregone conclusion as it is for many women suffering with this condition. But this doesn't seem to help me.

The fact that penetration does not even come into the picture sort of discounts the idea that muscle contractions or rearrangement of the area down there to accommodate penetration, is a comprehensive assessment of what causes sex-flares. Although, I can only imagine that penetration would compound things.....enormously. But since I have such a major and sustained flare following intercourse, I seem to think that pelvic floor dysfunction is also not a possibility. And although I know we continue to have muscle contractions for some time longer than a man, I don't know if we continue to have them days after the event, though that would be fabulous.

I guess for me, it is as if any trauma to my urethra - which is almost always in a state of inflammation - creates a state of crisis / panic in that area. I am sure that the muscle/nerve contractions that occur in orgasm do not help the situation. But it is hard for me to accept the theories presented when even in my situation, where penetration is not a regular practice, sexual activity is such a tramatizing event. And then there is the question of, well then, how to manage if just avoiding penetration is not the answer. Which I am sure is not really a magic bullet for any of you, I know, believe me. I imagine that this may be the case for more than just me.

I suppose we find ways to manage. I have tried planning for the event and preparing for the aftermath, but this is cumbersome/not romantic. But we do what we have to do. Sometimes I will take a pain killer before hand, but it doesn't always help.

I guess as far as pathologically/medically, I am hoping for more of an explanation but I suppose chronic inflammation could explain a lot. But why does it linger for so so long afterwards? Do those of you out there that have more of a urethral seeming syndrome have any thoughts on the lecture? thoughts?
:loco:

icnmgrjill
09-25-2006, 09:16 PM
You've brought up a very good point. Dr. Jayne did not specifically address how to help patients who have urethritis within the context of sex. I wish you had been there so that you could have asked this question because I just didn't think of it at the time.

I think there are several factors that could be influencing urethral sensitivity.

(1) Is the urethra actively or only occasionally inflamed?
(2) Is the pudendal nerve that is also inflamed?? (i.e. a classic sign is an arousal sensation that also hurts)
(3) Are the muscle spasms associated with orgasm also mechanically impacting the urethra?

I'm open to all comments and suggestions from other patients on how they minimize urethral discomfort! (I'm really tired right now... brain freeze... will try to add more later!)

Jill

sunspot127
09-26-2006, 04:40 AM
My problems are almost strictly urethral in nature, and I know how uncomfortable it can be after any sexual activity. Although I am clueless as to the reasons behind it, I imagine that just a general state of arousal can have an impact, considering the changes in bloodflow and the fact that the area swells with arousal. To help myself out a bit, I often take an 800 mg motrin before intercourse (any kind of intercourse, not necessarily involving penetration), and use an icepack (or frozen vegetable medley!) on the area afterward to minimize the swelling and pain around my urethra. I take a macrobid to avoid a UTI, and drink several large glasses of water after the event to flush things out. It hurts for a bit to urinate (ok, it hurts a lot for bit), but I find that the flare will last for a much shorter amount of time if I bite the bullet and make myself urinate frequently for a few hours directly after the activity. The motrin also helps with the pain and swelling.

This sort of planning and ritual often takes the spontaneuous nature of this activity away, but up until recently I couldn't have intercourse at all, so I have to count myself as fortunate at this stage. But I agree with you that it would be nice to have a more definitive reason for why the pain can often last for quite some time. I can't help but wonder if we somehow are irritating ourselves during sexual activty to the point that we almost have to go through a healing process before we feel ok again.

ICLori
09-26-2006, 05:59 AM
I often have a flareup after non-intercourse orgasm also. It seems to be the orgasm itself that triggers a flare. I don't flare immediately - usually it's about 12 hours later really - but I do have a recognizable flareup.

Blessings,
Lori

kimberlyJB
09-29-2006, 05:25 PM
I think the blood flow seems a significant factor. I would imagine that as with any pain, if we increase the blood flow to the area that is inflamed, we will compound the problem. Good thought. I wonder if blood flow continues at an elevated level even days after stimulation adn orgasm. I would tend to believe this more than residual muscle contractions - not that I am an expert by any means. This just seems right.

I too sometimes have delayed flare - and you know what, 12 hours seems about right. Other times, it's more immediate. It depends on the level of direct contact with the urethral area, I think. If there was something we could do to get that blood flow reduced quicker, maybe.

Or aybe taking an anti - inflammatory will help as well....Now I need to go and find out what the heck the pudendal nerve is :loco:

ads
09-29-2006, 10:48 PM
Please be careful when researching the pudendal nerve and pudendal nerve entrapment because a lot of the information is presented as being medical science and it sometimes antedotal information. Below is a website, which has picture links and info:

http://www.pudendal.info/faq/IntroductoryFAQ.htm#WhatIsPNLT
page down to #13

I traveled to the Houston team a couple of years ago and did the testing and a block, but didn't pursue the surgery.

ads

There are links to pictures

....Now I need to go and find out what the heck the pudendal nerve is :loco: