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  • Tinkerbell23
    replied
    Entry hurts like hell! And when he pulls it out it hurts too. actually, there is only about five minutes where it is actually enjoyable and then it just feels like knives stabbing my poor inside. And I dont use a catheter and the ky burns, i've found water-based works best, even though its cold. My dr says its because i dont "relax" because i "expect" it to hurt. it must be nice to be a man. feel better...

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  • ihurttoo
    replied
    I had vulvar vestibulitis too, and it also sounds like a possibility to me. Want2BPainFree gave a great explanation of it. Usually, they check for this by doing the "Q-tip test". (I know! It doesnt sound real high-tech!) But, it is effective. The Gyno goes around the area with a q-tip and that, along with the symptoms, directs them to the d/x. There are several meds to try. Alot of them are meds that are also used for IC.

    Vulvar vestibulitis is a common co-existing condition with IC. Alot of ICers have both.

    You still could have PFD in additon to it or instead of it, but I definately think VV could be the problem. Vestibulitis comes from the word "vestibule" which means entry way. It just makes sense. Plus all of the symptoms you describe are very similar to the ones I had.

    I say "had" because I had surgery for it a few years ago, so for the most part, I no longer have symptoms, except for a few times a year. But, even then, it is much milder than I had prior to surgery.

    The surgery I had is called a vulvar vestibulectomy. It is a pretty rare surgery. Most people respond to medication and therapy. But, mine didnt. I suffered with it my whole life until the surgery. For me, it was miraculous.

    Here is a link to my vulvar vestibulectomy story, in case you are interested. http://www.ic-network.com/showthread.php?t=13743 In case I messed up the link or something, the thread is called "has anyone here ever had a VV" In this thread, I explain more about the surgery, recovery, etc. (Mine are the 19th and 20th posts.)

    My pen just ran out of ink, so I cant give you the other link I wanted to give you, but in it, I wrote about what my life and symptoms were like prior to the surgery, including a graphic description of sex the first time and thereafter. But, you can find it by doing a search on "Need your VV stories for project" The thread was started by massagedoula. (Mine is the 2nd post in the thread.)

    Obviously, I am not a Dr. or anything, and can only go by the symptoms you have described. But, I definately think you should be evaluated for both PFD and Vulvar Vestibulitis. The Q-tip test takes about 5 min in your Gynos office, and would be 5 min well spent, if nothing else, then to rule it out.

    I hope you get d/xed soon and can find a medicine, treatment or therapy that will help you. I know how horrific it is to live with. My thoughts and prayers are with you.

    I hope this helps. If you have any questions that you are too embarrassed to ask on the boards, feel free to pm me. (Though there is nothing you could possibly ask me publicly or privately that would embarrass me.) I just want to help you. I have been there and know how awful it is and want to help anyway I can.


    Sending hugs,
    Amy

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  • aprilchen
    replied
    Sonja,

    Thank you for your explanation. It is very thorough and I am seeing a new doctor on the 22nd who is an IC specialist in New Orleans at Oschner Urology Clinic. I am hoping he can do something...and may be considering Interstim at this point. The reason I am is because I ordered their free DVD, read some posts on here and it actually can help with retention according to what I have read.

    Something's gotta change though because all this catheterization is making me so sore and I am having to do it at least once a day. May main retention seems to happen early in the morning and during the night, I wake up and can't go.

    I was thinking about if meds could cause this and looked up everything I take and I didn't see any side effects like urinary retention on any of them. My list of meds are below. Does anyone think any of them could cause retention? Or, is there something else that could be causing retention?

    Tired of Cathing...
    April

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  • Want2BPainFree
    replied
    This sounds like vulvar vestibulitis to me. Same thing I have. Touch around the opening esp the bottom half and surrounding areas can be excruciating. Then after sex comes the burning....the burning is more inside and I believe related to IC.

    The VVS you may actually be able to see. Picture your vaginal opening as a clock. If your pain is closest to the 4 and 8 o'clock areas, you may have redness there as well. your glands also may be inflamed. The hymenal ring may also have red patches on it. The fourchette, or the bottom part of the opening may also be red.

    With VVS I have from time to time had an irritated urethra and even clitoris. Every touch feels different than it used to. What used to give me pleasure causes pain and what didn't before, now doesn't.

    It is not a complete mystery, though. I firmly believe that because IC has a tendency to irritate nerves of the bladder wall, and because our bladders and vaginal/vulvar tissues are all from the same embryonic origin, when those nerves get irritated in one place, they sometimes refer the pain elsewhere.

    Just like with pinched nerves in the back. Some people with a pinched nerve near the spine will report knee or foot pain. That makes you think there is something wrong with the knee or foot, so you go to orthopedists, and PTs, etc. but the real problem is neurological.

    I do hope you find an answer through PT. I have been wondering if I don't have PFD as well from all the pain. Sometimes I really have to concentrate on relaxing because of the fear.

    Feel better soon!

    Leave a comment:


  • aprilchen
    replied
    Jen and guys,

    Thanks so much. I think they are considering pelvic floor disease. Please check your PM later today. I have an idea for a media tie-in w/ our local station but a couple things are complicated about it. I am not feeling so well right now...and I am nauseated so I will try to write it to you through PM later today after I take a Phenergan suppository and sleep this off. I have been sick to my stomach all morning and have had a bad headache.

    Geez, I wonder what else is going to happen next?

    April

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  • Sarojini
    replied
    Hi April,

    If you have a urologist or a gynecologist that specializes in women's urology, IC, and/or pelvic pain, that doc can usually diagnose PFD. It sounds like they may be suspecting it since you have been referred to physical therapy, which is one of the biggest treatments for PFD. You can read about PFD a little more in our patient handbook. Basically, what happens is that after a long time dealing with pain and urgency, the pelvic and sometimes lower abdominal muscles tighten up in the "guarding reflex" (a reflex your body has to protect injured parts inside).... and then they kind of get stuck like that. The therapist will definitely help you learn some exercises to help. She'll also gently stretch you, use heat and probably TENS therapy to ease pain, do some biofeedback so you can learn when you're tightening up, and work with you on the inside of the vagina (GENTLY!) a little with her fingers to (1) massage internal trigger points and (2) help you learn to relax during penetration. However, if she is good, she will wait to do the internal work for several sessions until she can evaluate you and see if she can begin to ease your pain a bit first.

    Good luck with your first PT appointment. If I can answer any more questions about it, please PM... I've been through PT before for my own PFD.

    Leave a comment:


  • aprilchen
    replied
    Originally posted by Sarojini
    Have you ever thought about the possibility that you have Pelvic Floor Dysfunction in addition to your IC? The reason I ask is that many of us with PFD describe a "ring of pain" around the vaginal opening during initial penetration. Once you relax into the act of sex, though, it can disappear because you relax your pelvic floor.
    Hey Jen,

    I don't know much about PFD. Who diagnoses this and what are the symptoms?

    I know it is related to IC and have noticed a lot of people who have IC have the vulvodynia and/or PFD.

    Also, I am seeing a physical therapist soon. I was referred and tricare finally approved it...allowing me more visits than I expected. I just have to get moving again and I was hoping PT might help. Maybe the therapist can teach me some exercises that I can do to strengthen my muscles down there and some healthy relaxation techniques so that when I get stressed I can stop this in its tracks before it gets any worse.

    I do not want to abstain all the time, either. Besides entry, my husband satisfies me well and he said the other day that I do it for us both because it is an act of love. I do sympathize and understand for those people who have no physicality in their marriages because of this HORRIBLE disease.

    Anyway, I am going to sleep now because I keep sitting here falling asleep...with my head falling down. My husband said for me to go to take a nap...but I also hate doing that because it makes sleeping at night hard.

    Thanks again for rescuing me...all the time, emotionally and physically. It really helps to know you're not the only one suffering from this disease.

    Also, I waited outside the sanctuary today during church and saw the pastor who had visited me in the hospital back in early February when I was inpatient for dehydration, infection (staph) and pain control.

    And, yes, it is a ring of fire or pain when entry, but often relaxes afterward. The only issue that remains besides pain on entry is spasms that happen sometimes of the bladder a few days or at the best, a few hours after sex.

    April

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  • leelee88
    replied
    April,
    Your post is on the WSH site now, I responded to your question about vulvodynia

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  • Sarojini
    replied
    It's normal to have pain after catheterization when you have IC. This could be part of your problem during sex.

    Have you ever thought about the possibility that you have Pelvic Floor Dysfunction in addition to your IC? The reason I ask is that many of us with PFD describe a "ring of pain" around the vaginal opening during initial penetration. Once you relax into the act of sex, though, it can disappear because you relax your pelvic floor.

    It can help to use heat on the area to relax the muscles before you have sex (you could lie quietly with a heating pad for a while first, for example, or take a hot bath), to use a muscle relaxant if you have one, and to relax as much as possible down there by concentrating on those muscles and breathing deeply.

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  • aprilchen
    replied
    Thanks guys. I think the KY warming liquid works well....I did not even think about the catheter. The proctofoam helps a lot too and we use it with the catheter and it deadens the area where we insert it. However, after the instills and the catheter, I get a lot of spasms, pain and nausea. Is this normal?

    Thanks.

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  • leelee88
    replied
    Yes try again April, We were having some problems, but I think its all fixed now..

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  • tigger_gal
    replied
    give it another try, if you can't get in email Jill. If you signed up during the upgrade it might have gotten intercepted. I was in there posting when it went down, and none of my posts were there after..

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  • ICNDonna
    replied
    Jill recently posted that there is a problem with the sex hurts site. That could be the problem.

    Your current issue could be from irritation from the catheter. The extra lubrication can help.

    Donna

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  • aprilchen
    replied
    Hey tigger_gal,

    I did go over to the whensexhurts web site and tried posting, but it only let me view messages and not post them. I registered for the site and then confirmed my registry through my email. However, after completion of that, a message that I received said the moderators would approve my use of the site soon. I posted here because I obviously don't have permissions on the when sex hurts site.

    Did I do something wrong?

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  • tigger_gal
    replied
    I would guess that is why you are having pain.. We use lots of astroglide and fore play.. Plese go over the whensexhurts.com and check out our topics.

    Leave a comment:

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