New to message boards

[sarahlinnc]

I have been reading the message boards for some time now but have not wanted to write as I was hoping IC was not my correct diagnosis. I was diagnosed in Sept 2002 by the potassium test. I have been on and off 10 medications, had bladder instillations, physical therapy, etc. since that time. Just this past week I finally had the hydrodistention and cystoscopy. I think that I have been hoping this entire time that the diagnosis was incorrect but the hydrodistention confirmed it is IC. The good news is that I have the 'mild' form of IC. I feel so bad for anyone with severe IC - I can't even imagine how awful that must be because my 'mild' form is just horrible. I believe that I also might have vulvodynia or something related to that area. The pain and burning with intercourse is most often my worst symptom but I am still not convinced this is part of the IC. Does anyone have experience with that? I am told that that is likely just a part of my set of symptoms. My poor husband doesn't totally understand. I don't want my condition to ruin our sex life so I usually don't let him know the full pain that I am in. :bonk: Thank you so much for this site and for letting me get all of this out. ~Sarah

[Dixiefireball]

:hi: and :welcome: to the ICN family I believe we all at some point go threw not believeing this is happen to me.
Your on the right track finding ways to control it.
please check out www.ic-network.com/handbook that is also a great place to start. are you on the IC diet? you can find a copy of it there at the same web addy.
sending you hugs and prayers
Rhonda

[Sarojini]

Yes, I experience pain and burning with intercourse too -- this is definitely something most ICers complain about. You can reduce it by using a lot of lubrication (my husband and I use one called Liquid Silk), by taking a Pyridium or other urinary anesthetic before sexual contact, by taking a hot bath before and/or after sex to relax the pelvic muscles, and by using a low dose muscle relaxant to help with that as well. In addition, sometimes an ice pack on your vulvar area can help after sex... and many say that lying completely still for a while after the act can help as well :)

Discuss this issue with your doctor if you feel comfortable with him/her. He/she may have other suggestions for you as well.

And, :welcome: to the boards :)

[ICNDonna]

I'd just like to add another :welcome: to the IC Network. There's a chapter in the Patient Handbook at http://www.ic-network.com/handbook that may help you to work towards a better sexual relationship. I second Jen's suggestion that using extra lubricant is a huge help --- open communication with your husband will also help.

Warm welcoming hugs,
Donna

[kelly McC]

Hello and welcome,
I also have burning and sometimes pain with intercourse. That was my first symptom. I have since been diagnosed with PFD,VV and IC.I also find lubrication to be helpful.
Huggs,
Kelly

[sarahlinnc]

Thank you everyone for your responses. It is nice to have this forum to share success stories and to also let out frustrations. I've been trying to get my husband to read up on IC but so far have been unsuccessful. And now, since the Dr. told him my IC is mild I think he believes it to be even less necessary for him to read up on it and become familiar with it. I think in his mind having mild IC is not a big deal - that I should just feel lucky it isn't moderate or severe. And or course, I don't want to seem like a baby so I try not to complain too much or let him know the real pain I have.

[southerngirl]

HI! :welcome:
I just started on the message boards as well. Mine was "Please Help. Need People Who Understand" That was my first one and I had so many replies so quickly that I felt like I'd been signing on forever.
I also have horrible burning and pain with intercourse. My husband and I haven't had intercourse in I don't know how long! We try, but I usually start hurting and we have to stop. My sex drive is down to nothing and my husband has gotten to the point that he doesn't much want to try anymore for fear of hurting me. I'm hoping someday to find something to help with all the pain including the pain with sex, because I want to have children someday. Does anyone have any advice about having children after being diagnosed with IC. Besides trying to become pregnant, I'm really scared about what pregnancy will be like and the thought of giving birth---well, lets just say that if it hurts for something to go in, I can't even imagine what it will be like trying to push something out. Please excuse me if that sounded crude!
Anyway, I had a really hard time getting my husband to learn about IC as well. But lately I've been going through a horrible flare and I told him that if he had read up on IC like I had been asking him to, then maybe he would understand what I'm going through. He is finally starting to read up on it and he is understanding it so much better than he did just by listening to me.
Just keep trying to talk to him, have him check out the website or ask him to look at the website with you.
I hope things get better for you.
I'm glad you decided to join the message boards.
I've found that the message boards have been a godsend, Having others who know exactly what you're going through. :grouphug:
:dance:

[shinana]

Sarah, Welcome. The pain and burning with intercourse has been going on with me for a while and was not sure what it was all about until I was diagnosed. Actually that was one of the first questions my Dr asked me, if I had pain with intercourse.

I also hoped my symptoms were caused from something other than IC, I still cannot believe my DX of IC. It helps alot to have the IC boards to read and relate to. You can rest assure we're here for eachother and there is always a kind word and support to help all of us threw the tough times.

Stay focused on your treatment and stay in touch with the IC boards.

[sarahlinnc]

I also had the pain an burning with intercourse for many years but it has progressively gotten worse as time goes on - more frequently and more intense. I had never put the two together (IC & the pain) until recently - within the past couple years. I always thought that the burning and pain was just 'how it was' and how it was supposed to be. It never even occurred to me to mention to a doctor. I remember the first urologist I went to in 2002 asked if I had discomfort with intercourse and my first reaction was no. After she described what meant I was like, "Oh, I do experience that sometimes." Diana - I noticed you're from Michigan too - where abouts? How has your treatment been for you? Have you found anything to help especially well? I've found warm water rinses right after sex and ice packs to help but have not found anything to prevent it from happening in the first place. Thanks for your response. I hope you are feeling well these days. ~Sarag

[ICLori]

I'm so sorry you are experiencing this too. My husband and I have had to give up intercourse and become close in other ways, because intercourse was just physically too hard on me. I would be in so much pain not only during but for days afterwards. I was willing to just grit my teeth and everything, because I love my husband and want to make him happy, but he can't stand to hurt me, so unless some miracle happens, that part of our life together is over. I have tried all the suggestions, and none work for me because my IC is very severe.

Just wanted to let you know, you aren't alone. This disease takes a lot away from us.

Blessings, Lori

[sarahlinnc]

Lori, I am so sorry to hear you had to give up on intercourse. Aren't there any other treatments out there that might help in this area? I hope you haven't give up on it completely. It sounds like you and your husband have a wonderful relationship. He is so understanding. My husband is also very understanding and loving. I just haven't been 100% honest with him regarding my symptoms and flares. I know how loving he is but at the same time worry this could ruin our relationship (due to lack of sex life). Thank you so much for sharing your experience. It certainly does help to know others in similar situations. I will keep you in my thoughts - don't stop trying different therapies - one day something will work!

[traceann]

Hi Sarah! I'm new here too :) When I was reading up on IC before the doc decided that was my problem, I let my boyfriend read some info I had gotten from here, and when it came to a passage about painful sex, he pointed at it and asked me it that was the case, since I had never said "boo" about it before. At that time, no it wasn't. Then I had my first "real",lol, flare I think I am finally coming down from now, as my period is due anyday (thank god, some relief!) so I haven't had the chance to test out to see how bad or if it will be bad. I have been a bit afraid to broach the subject, it's just been hands-off (he's only home on weekends, works in Detroit and commutes here on weekends), since he could see obviously how miserable I have been. Finally on our way home from Thanksgiving dinner (a 3 hour one-way travel ordeal!) I brought it up. He was sooooo sweet, which, duh, I should have expected in the first place, we have always been really open about sex. He told me he was letting me lead the way, and he figured I would let him know when I was ready and what I was ready for. That took soooo much mental pressure of me, I felt I didn't have to just "grin & bear it", what a relief! I guess I underestimated him, I will not make that mistake ever again. I was afraid, silly sounding yes, but still afraid... since I might not be able to be the girl I was before. Now, that's one less worry on my mind, we have since that chat found "other" just as wonderful intimate alternatives, and what a relief to be able to relax and not be afraid to say "ow"...
Good luck to you too, I completely understand the feeling of being hesitant to be honest, my sweetie is a die-hard "mind over matter" sort, he broke his pinky a week or so ago and is just letting it go on it's own...ugh, so it's kind of hard to feel comfortable expressing when I hurt and what-not...

Take care,
Tracey

[vm]

:welcome: Sarah! Sounds like you have tried a lot of treatments - what do you think you'll try next? Has the hydro helped your symptoms at all?

Some people with IC do find treatments that leave them feeling pretty good most of the time. My husband and I are able to have sex and as long as we stick to a few "safe" positions I have no pain and don't flare. As others have mentioned, lubrication is so important. Even a massage beforehand helps me.

Good luck and ask any questions you have. People here are more than happy to try to help. :)

[sarahlinnc]

Thanks again everyone for your responses. It feels so good to have others to talk to.
Next week I begin weekly bladder instillations again. I tried this previously with not success but now this Dr. thinks it will be beneficial following the hydro.
I am beginning to feel slightly better since the hydro but the pain in my left side persists with no sign of letting up. Will have to try tackling one thing at a time! The best things I have found so far are icing and ultrasound directly to that area. Wish I could buy a portable unit to have at home! Of course, can't sit around icing all the time either! For those in Michigan - is there any sort of support group in Southeast Mich? I know I have found some near Grand Rapids but none so far in my area. Thanks again everyone!

[Katrina]

:welcome:
Pain with intercourse has definatly been a symptom for me. It takes a lot of time to understand this and accept it sometimes for those that have it....so to try to understand it when you don't is close to impossible...hopefully hubby will understand more in time. You said you had mild IC....which usually means no hunners ulcer right? If that is the case your left side pain could be from something other than IC. Have you talked to an gynocologist about it? What type of bladder installation are you doing....most people start with some kind of DMSO. It can take time to have success with it. I have found more success with Heparin alone...so don't give up!

http://www.remedyfind.com/hc-Interstitial-Cystitis.asp there are a lot of treatments for IC and a lot of self help as well.


http://www.ic-network.com/forum/showthread.php?t=7562 this link is a pain managment post. The second page has 4 attachments...the last one is a list of ideas for IC pain.....take a look if pain is problem for you.
:grouphug:

[sarahlinnc]

Hi, yes I believe mild IC means no ulcers. I think since my husband heard 'mild' he immediately thought that 'it can't be that bad.' My first thought was that I can't even imagine how bad it must be for those with moderate & sever IC because the 'mild' form sure isn't fun! I believe the bladder instillations will be some sort of a cocktail. I tried 2 rounds previously with another doctor - one round of a cocktail and then one round with the DMSO (with the stinky RIMSO50). They didn't do a think for me then but I just had my first hyrdrodistention and now this Dr. thinks the instillations will be helpful. Thank you for the links, I will be reading up on everything. I have yet to get my husband to read anything on IC. One day maybe he will understand, he is very patient I just want him to understand more. I was under the care of a gyn for the pain which they thought was due to endometriosis and adenomyosis. I had a hysterectomy Jan 2003 with removal of my left ovary which is entangled in my bowel. I thought 'great' now more pain - that had to be what was causing all the pain - but oh, no, it still persists! I'm also going through physical therapy now for the pelvic floor - something will have to work one of these days! I read your hope story - thank you so much fo sharing. Take care,