Hi - I'm new to this

[EmilyAnne]

Hi my name's Emily and I was just diagnosed with IC last Friday (Feb. 18th) when my doctors were doing surgery to look for endometriosis.

I guess I'll share my story first. I have so many questions too! I've had pain in my pelvic area and abdomen since I was in 13 and now I'm 22. I went into the ER when I was 13 for what we thought was appendicitis but instead I had 2 ovarian cysts. Then in highschool I had some pain and went on a gluten free diet for 3 years thinking it had to do with that. Whenever I got pain I just figured I had accidently eaten something with gluten in it. That ended up not being the case. Whenever I ate chocolate my pain got worse, but my parents and I both had no idea why. We didn't think people were normally allergic to chocolate and unfortunately I kept eating it and it has become my comfort food. Then when I started college the pain got worse and has been getting gradually worse every month for the past 4 years. After a while I had to start skipping classes and missing days during my summer job. My job after college suffered as well, there were days when I couldn't go in for a while or I'd have to leave early and a few days when I couldn't even sit in my chair because I was in so much pain so I laid down on my office floor.

I started going to doctors at the beginning of my college career. I went to my doctor and three different gynecologists, they prescribed me 5 different birth control pills (non of which worked) and kept telling me I would just have to find the right one. They thought maybe I had endometriosis or some other gynecological thing and only gave me pills for it, they never really mentioned any other options. 2 of those birth control pills made me go crazy emotionally and I am usually a very calm and even tempered person. My boyfriend (who I have now been with for 3 1/2 years, but then had been with for 1 1/2) really had to put up with a lot during that stretch of time. My gynecologist appointments were really painful as well because I had an imperforate hymen. My doctor thought that extra blood from this imperforate hymen could be what was causing the problem so I had a hymenotomy in 2008. But the pain didn't lessen. Then I went to Dr. Miller, this fantastic renowned gynecologist (specializing in infertility and endometriosis) and he gave me so many more options! IC was one of them but not the first. The first he tested me for was pelvic floor myalgia (sp?), which I also had. They took care of that but the pain still didn't go away. Then he said he was almost sure it was endometriosis because I had all the symptoms and I scheduled a surgery date. During the surgery he also did a cystoscopy with hydrodistension test for IC and definitely diagnosed it as that and not endometriosis.

I'm so glad that after all these years of pain and being shuttled around from doctor to doctor and pill to pill I finally know whats wrong!! But now the real journey starts I guess. I've just started on Elmiron on Saturday and started the food diet then too. Sorry for my extra long story, I understand if you didn't make it through. I'm so glad theres a support network that we can all be a part of. I have a few questions if any one is still reading at this point.

1. I'm taking elmiron now, will I need to take it for the rest of my life or is there a point at which I can stop?

2. My boyfriend and I are talking about getting married and having a family, how will this affect that?

3. Does sex hurt for everyone? most everyone? half? a few? My boyfriend and I are waiting until we're married, but I want to be prepared.

I'm sure I have more but right now I can't think of them. I'm so glad I was able to find this network!

Thanks!

[VickiB]

Hi Emily, to the group!

It sounds like you've been through a lot. I'm glad to hear that you finally have a diagnosis and can now begin to deal with IC head on.

As I'm sure you know we are not doctors so all we can really offer is our own experiences & opinions. That's a wonderful thing though and was really helpful to me when I first came here! That said..............

1. I'm taking elmiron now, will I need to take it for the rest of my life or is there a point at which I can stop?
I believe this med is often taken for life by those for whom it works and can afford it. It's not a fix, more like a help. But not everyone takes it, not everyone is helped by it, and even some of those who are helped don't continue on it for one reason or another. I'm sorry, this isn't much of an answer!

2. My boyfriend and I are talking about getting married and having a family, how will this affect that?
Most of us get better following diagnosis & treatment, and lead fairly normal lives. -Including marriage & children.

3. Does sex hurt for everyone? most everyone? half? a few? My boyfriend and I are waiting until we're married, but I want to be prepared.
I don't know all of the answers to these. I can say from my own experience that no, sex doesn't always hurt for everyone. When I'm in a flare there's no way sex is happening. It would hurt too much and only increase the duration of the flare. But when I'm at my 'borderline IC normal' sex is not a problem for me. I really have no idea as to what the proportions are of people with IC who have pain with sex. You might check out this tread when you have some time: http://www.ic-network.com/forum/showthread.php?t=22522 (Jen's Tips for Great IC Sex)

Again, welcome to the ICN!
Vicki

[cmclien]

Hi and welcome to the board! This is a great place to hang out and get ideas from others who are in the same situation as you. Glad you finally got diagnosed!
I'll do my best at answering your questions:

1) Elmiron, probably you'll have to keep taking it but not for sure. Elmiron helps re-build the bladder lining and they don't know what makes it compromised in the first place. You might go into remission but I don't know if others here who have gone into remission quit taking the elmiron.

2) You can still have a family. ALOT of people here say they totally go into remission during pregnancy and breast feeding. Unfortunately it comes back usually after they are done

3) Sex does not hurt for everyone and I don't know the statistics. It hurts for alot of people though or some people like me are just fine during sex but experience bladder pain the 24-48 hours following. Some ICers here have PFD so that makes sex more painful too. No easy answer on that one.

There are 3 drugs that most ICers start out with, one is Elmiron. Did he only start you on Elmiron or others too? The other drugs are low dose amitriptyline (a tri-cyclic antidepressent) for pain and frequency, this helps ALOT of people. If that one doesn't agree with you there are other tri-cyclics you can take instead. The 2nd is hydroxyzine with is an antihistamine. Did your doctor tell you if he saw mast cells in your bladder? Not everyone needs it but alot of ICers have allergies too. I personally don't. A 4th and less used drug family are the anticholinergenics like vesicare, ditropan etc. These drugs are for frequency and urge, some people get retention from these drugs but some don't. I personally have alot of success with those drugs but many on here do not.

Good luck, hope that helps.

[EmilyAnne]

Thanks to both of you for responding so quickly! It's great to hear from people who have been dealing with this longer than I have.

In answer to Cindi's questions,

Did he only start you on Elmiron or others too?

He only started me on Elmiron. I've been seeing other people post that anti-depressant and antihistamines help as well. I'll have to ask him about those at my post-op appointment.

Did your doctor tell you if he saw mast cells in your bladder?

No, he didn't say anything. I actually only saw my doctor for about 2 minutes before my surgery when he asked me where exactly the pain was. He spoke with my parents and boyfriend afterwards but I didn't see him at all. What would that mean if there were?

Thanks!

[cmclien]

Did your doctor tell you if he saw mast cells in your bladder?

No, he didn't say anything. I actually only saw my doctor for about 2 minutes before my surgery when he asked me where exactly the pain was. He spoke with my parents and boyfriend afterwards but I didn't see him at all. What would that mean if there were?Thanks!

Its just that mast cells show up when allergies are present and people who have them usually respond really well to the antihistamines.

[sailawaygrl]

Hi Emily Anne,
I just wanted to welcome you to the network. I am sorry that you have IC but glad that you found out what was causing you pain without having to live with it until you are 38, like I did! I had the same problems you had at the same age, I have had many laporoscopies, and other tests repeatedly in my life. It wasn't until I was 38 when my IC really starting showing the signs of bladder pain, I had always had lower pelvic pain and pressure, but this was different.
So, in that way I would say you are lucky to have found a good Dr that knew what to look for. Now you can get on a good treatment plan and hopefully not have many problems at all. Not sure if anyone has mentioned this yet but you might want to look into the ic diet, it is a list of foods that have been found ok for us to eat and some that might cause us problems. Many people with IC find that certain foods cause problems so the diet is a great resource for self help. http://www.ic-network.com/diet/ this is the link to the diet, you can print it out and keep it with you for reference.
I wish you the best and good days ahead!
Sandra

[ICNDonna]

I'd just like to add a to the IC Network.

You've already been given good information.

Warm hugs,
Donna