Newbie Post

[armslee]

Howdy all..... another newbie in the house!

Wanted to just ask for some opinions and advice if I could as I haven't gotten my doctor's office to call back yet. I feel very confused and not sure where to turn or what to ask them when they do call!

1- Do many of you have vulvar and vaginal pain as well? Mine has gotten so bad that my DH and I can no longer have intercourse at all and I have had to stop using tampons.
2- Do any of you have problem with incontinence? That is a new one for me which has gone from daytime dribbles to nighttime woes.

Thanks in advance for any replies!

[kittymom]

WELCOME : ) I personally do not have the vulvar pain that some have.so I willl leave that to someone who has that pain.

yep I do have the Incontience The slighest bit of a giggle it drips. I don't take anything for that.

I take Elmerion 100 mlg 3 x aday
Elavil 25mlgs 3 x aday
Atarax 25 mlgs 3 x aday

[ISONormal]

Welcome! I, too have vulvar pain, but no incontinence. My drugs below (especially the Effexor) have helped get rid of the vulvar pain, which was so hard to deal with. There are other alternative drugs, too, that you should look into. I'm sure some posters will mention what they take for it. Good luck. We're here to help!

[Sarojini]

I have occasional vulvar pain and painful intercourse. My painful intercourse stems from pelvic floor dysfunction (PFD) as well as the IC. The PFD causes a "ring of pain" around the opening of the vagina during penetration at first, but I've learned some relaxation exercises through physical therapy so that I can get past that part.

If my IC is acting up, my urethra gets sore during the act and urination burns afterwards. If we are not careful about what position we use, I can feel a deeper pain when he touches my bladder from the inside.

I usually take a Pyridium Plus and sometimes a muscle relaxant like a low dose of Valium before sex to reduce these pains, and of course, I do the relaxation stuff and have him penetrate very slowly! We also use LOTS of extra lube to ease the process.

However, I don't have any incontinence to speak of -- I was incontinent only once in the last few years. I'm sure there are others that can help you with solutions to that problem.

[Katrina]

:welcome: to the ICN! You came to the right place!
- Do many of you have vulvar and vaginal pain as well? Mine has gotten so bad that my DH and I can no longer have intercourse at all and I have had to stop using tampons. Yes, and I was exactly the same way at diagnosis...I knew there was no way I could use a tampon!
2- Do any of you have problem with incontinence? That is a new one for me which has gone from daytime dribbles to nighttime woes. Yes, although it is not extrememly common many of us have had to deal with it at some point. Antispasmodics often help a lot...:grouphug:
http://www.ic-network.com/forum/showthread.php?t=7562 this is thread of pain relief the second page has attachments I believe the last attachment is the list of pain relief ideas.

http://www.ic-network.com/forum/showthread.php?t=11535 This is newbie kit from the oldies to the newbies
Feel free to ask as many questions as you want! :)

[Dixiefireball]

:hi: and :welcome: to the family :grouphug: sorry you have IC, but I'm sure you see you found a great group of caring, understand people here.

When I was frist dx i could use tampons, but notice making love at times became unbearable. when I was first dx i had a modern case. (i'm one of the few who did progress in this disease so please don't let this scare you its only a small percentage this happen too.) anyway a few months down the road I notice I couldn't use tampons any longer. not just because of the pain reason, but Notice they was causing me to have real UTI's also. more yeast infection etc.
I now have had an Hy. May 17th of this year will be one year.
Even some pads could cause me to flare up.
just that time of the month everything for me went wild in a bad way. awful I was bedridden from the pain.
hope you feel better and get the answers you need soon.
sending you hugs and prayers
Rhonda

[armslee]

Thanks to all for your replies!
Wow. It seems that my puzzle of lifetime symptoms are finally starting to fit together. Unfortunately things do seem worse than they ever have for me symptom-wise.
I know this is a long, long road. Thanks again to all for your support! I look forward to getting to know you all more!

[Babs RN]

I have severe incontinence through a shredded urethra. Don't really have the vaginal issues, hubby is in the military and away at school--will let you know, as I don't have periods anymore and don't have to use the tampons.

Hugs,
Barb :grouphug:

[BigFig]

I had extreme vulva pain when I first got sick and for several months (ouchhhhhhhh!). It is under control now (Thank God!) :) . For me several things have helped, Diet, Elavil and HRT vaginal cream (1gm Estrace) at night. Mine was so bad that I use to have to lay down (sitting and walking hurt!) with my legs spread and when I finally got the cream I couldn't get that tiny little tube to insert the medicine in because of the pain! So I know a tampon wouldn't of either. Fortunately I don't have periods any longer.

I have never had incontinence issues. But I have read that several on these board do.

Oh, and :welcome: to the ICN. Glad you found us (sorry you have IC). Have you had a chance to take a look at the patient handbook? There is a link for it at the top of this page. You will find all kinds of great information in it. Check it out!

[ibtracy]

Hi there. :welcome: I too suffer from incontinence - BAD. I pretty much have to wear pads 24/7. I also suffer from some vulvar pain, mostly during intercourse. You've found a wonderful support group filled with alot of information and support. We're all here whenever you need someone. Have you looked into going to a physical therapist that deals with PFD (Pelvic Floor Dysfunction) as Sarojini mentioned? It might be worth asking your MD or urologist about it. You go through a series of exercises to rebuild those muscles down in that area and I've heard from others that their vulvar pain disappeared as well as their incontinence issues.

Welcome to the ICN family. We're all here for you. ;)

Hugs,
Tracy K.

[armslee]

My doctor talked to me about physical therapy last year. That was, of course looking into the future as I wasn't that bad off then. I read up a little about it and got seriously creeped out.
Ok, so anyone who has done PT, what is it actually like?? Be honest please! I am not sure that I could stand for peeps to be touching me! Is that what it is really like?

[TheMoonandBach]

Hello!!! and welcome... I do have vulvar, like most said, esp. during sex, but I just work past it, and i can usually come out on top (no pun intended) haha... anyway, sorry for the reason your here, but good to meet you!!!

[Briza]

I have vulvar pain due to vulvodynia that hit me at the same time the IC symptoms first started. My IC meds help a lot (Elavil, IC, and an occasional painkiller).

Also, a couple ibupofren before sex and a couple more a few hours later help me tremendously with the additional inflammation sex can cause. I can tolerate ibuprofen, but have heard that some IC patients can't.

Also lidocaine, which numbs the burn, if only temporarily.

I also found a really good lubricant...Femglide. I order it at drugstore.com.

No incontinence.

Welcome and best wishes!