Need insights and comfort regarding possible IC

[Nan2468]

There is confusion among my doctors if I have IC...
My primary doctor suspects I do...

My urologist did a cystoscopy (not the one with anesthesia) and said my bladder/urethra looked fine...

There was talk maybe my vaginal wall was thinning and I was given premarim cream which seemed to irritate the urethra..

My OBGYN did an ultra sound...I have fibroids but not as large as they use to be due to a procedure I had done as an alternative to hysterectomy called uterine artery embolization...The fibroids are still there, just smaller...

One GYN said that one fibroid is postioned on top of the bladder...

It was suggested I rule out GI problems..I will see a GI this week...

Is my slightly enlarged (11 cm) uterus with four small to medium fibroids causing the pain...

My bladder is constantly feeling tense, pressured...My urethra feels at times like there is a cathedar in it...I do get frequent UTI's but sometimes it just feels like a UTI and it's not,thus the IC diagnosis...

I'm in tears because of the constant pressure/pain...My OBGYN isn't sure it's IC...Can anyone here help me or give me their experiences? I would be so grateful...

Not sure if it is IC...In the past however, it would die down, and then come back..I don't wear tight jeans, my husband and I rarely have sex because it seems to stir up the problem afterwards...

Does Elmiron really work if I do have IC?

Should I think more about a hysterectomy?

Thanks for anyone's time...

[ICNDonna]

First of all, interstitial cystitis will not necessarily show during an office cystoscopy. It's only when the bladder is stretched during a hydrodistention with anesthesia that the IC shows itself.

The Patient Handbook will help you learn more about how IC is diagnosed, as well as the possible treatment options. Not everyone is helped by elmiron or any other single treatment. The unfortunate thing is that we are all so different.

One thing you can do while you are undergoing testing is to put yourself on an IC diet to see if that helps.

Warm healing thoughts,
Donna

[NancyB]

Dear Nan -

I am sorry you are going through a tough time.

I assume that you are either perimenopausal or menopausal, since you mentioned trying the Premarin cream. Don't give up on the estrogen cream yet. (I was diagnosed with IC during perimenopause at age 47 via a cysto-hydro and appear to have had an estrogen problem only!) A lot of women cannot use Premarin. You might want to try estradiol - patch, pills or cream. Be aware that the cream can cause abdominal pain as one of the side effects. I would suggest talking to your doctor about using the estradiol. If it helps you you will notice it rather quickly and be able to tell if you have an estrogen problem or IC (or something else). It is possible to have all those things at the same time, however. But, it is worth it to try the estradiol. Ask your gynecologist if he/she will let you try the estrogen patch or pills (not Premarin) without progesterone for a 6 week try. (I used the patch, because my system couldn't tolerate the pills.). Then, if the estrogen works for you, you can ask your doctor if he/she will let you use it unopposed and watch you for signs of endometrial hyperplasia. I eventually had to have a hysterectomy because of uterine bleeding. Or just try the estradiol cream for a few months and see if you improve. It is my understanding that you don't have to worry about taking progesterone or watching your uterus with that route of administration.

The above treatment is not for all ICers!!!! My case it probably the exception rather than the norm.

Good luck and let us know how you do. If you have more specific questions about my experience with estrogen, please feel free to PM me.

NancyB:)

[leelee88]

Nan, Donna is right IC does not always show during a Cysto. And I totally agree about trying the IC diet and seeing if that settles anything down.

Are you having any of the other typical signs of IC? Urgency, Frequency? Just asking because I know that PFD (Pelvic Floor Dysfuntion) can mimic IC in a lot of ways. Also another thing you really want to rule out is Endometriosis.
So I would suggest that before you go and have a Hydro/Cysto you have those ruled out.. Good luck and please keep me upated..

[Nan2468]

I have a slightly enlarged uterus...I wondered it the fibroid sitting atop my bladder was causing this...My OBGYN wasn't sure and directed me to an GI..

I will see the GI on Thursday..

Meanwhile my urologist did squeeze me in today to talk with him about options...One was DMSO...The other hydrodistention...

I'm a little confused..and tired because the ditropan I took last night kept me up...I won't take it again...I am having stress in my life...

What test did you have to determine IC? The office cysto said I was fine...

[ICNDonna]

I was diagnosed by hydrodistention and biopsies, after ruling out other potential problems.

Donna

[Nan2468]

Donna,

I guess the hydrodistention is the way to go...The DMSO doens't set right with me...I will talk with my urologist today at 1:30...

I am overwhelmed...

I wonder if I could just take MSM/Glu and be done with it...

[Nan2468]

Donna,

I guess the hydrodistention is the way to go...The DMSO doens't set right with me...I will talk with my urologist today at 1:30...

I am overwhelmed...

I wonder if I could just take MSM/Glu and be done with it...

[leelee88]

Nan, I take Glucosamine/MSM and while it helps it does not rid me of my problems. IF You do have IC then there are many things you might have to do to get things under control. I wish it was as easy as just taking Glucosamine.

If You feel awkward about the DMSO then go with your gut! I always tell people it is your body and you do what you are comfortable with! BUT if you ever decide to do DMSO ONLY let them do the 25% solution and not the 50%.

If you are just ready to find out for sure and want answers to confirm IC or not then you can ask for the Hydro/Cysto, but also tell them you want a biopsy to check for mass cells and to check for anything else. And please make sure you have a good relationship with the Dr who is doing this proceedure or you feel comfortable with him/her..

[noble1]

NancyB,

I'm confused by your post which said you where Dx'd with IC and yet you had an estrogen problem only? So you do or don't have IC? I had a hyst back in fall of '07 and just lately (the past 2 mos.) started having symptoms of IC (pain, frequency/urgency, going at night (last night 4 times) and the pressure in the pelvic area as well as low back pain. I had a pretty severe case of endo and even suggested to my GYN that the endo was back. She didn't seem to think so but suggested IC based on my symptoms. Could mine be an estrogen issue too? I also take aygestin (progesterone) to balance out the effects of the estrogen because I had/have endo and wear an .05 vivelle dot patch. My GYN thinks its IC because I have pain with a full bladder and w/out a full bladder. The pressure to "go" is awfully extreme at times but yet I only go a bit. She put me on an antispasm med for my bladder and it helps for part of the day but not the whole day. Honestly, I think I need to see a Uro. Your thoughts are welcome.

Trish

[Becky Boo]

Hi nan, sorry you're feeling so confused & over whelmed with all your symptoms :o( - The worst times are always the times of the un-known whilst you're waiting on answers! Donna is rite, we are all different & what works for one may not necessarily work for another! I know many ladies on this site, including myself, have found a lot of relief by following the IC diet! I also use prelief, which helps to take the acid out of food & drink. Following the diet is always a good place to start - even if you find out you do not have IC it will do you no harm to try, just in case :) Anythings worth a try when you're in pain ay! I was diagnosed with IC & PFD in May of this year. I had the cystoscopy & hydro done & at the same time biopsies were also taken. I was uncomfortable for a short while after this procedure, but once diagnosed I was started on treatments that helped to make me more comfortable.
I hope you find some answers soon, keep us posted on your progress!
Big healing hugs,
xx

[NancyB]

Dear Noble -

I did have a cysto-hydro and was dx as having a mild case of IC at 47. I had pain, urgency, pressure, etc. I thought it was a problem with low estrogen. I asked my gynecologist for the estrogen patch and tried it. It worked for me. As long as my estrogen was ok, my bladder was ok. However, I still had my uterus and had to be watched closely for endometrial hyperplasia, since I didn't take any progesterone. I eventually had to have a hysterectomy for bleeding.

I don't know if you have an estrogen problem or not. I would suggest that you talk with your gynecologist about this and the endo, since using estrogen is often contraindicated when one has had endo.

If you have question, feel free to PM me.

NancyB:)

[Nan2468]

I do like knowing that hydrodistention was the true confirming way of knowing...I don't like going under an anesthetic...I will talk today with my urologist...

Meanwhile, I do wonder about the estrogen part of this whole matter...It never occured to me that maybe my painful bladder had to do with estrogen...I wear a climara patch each week, and take a progesteron pill...

I went off the Primarim cream because it seemed to be irritating my urethra area...

I feel a little hypochondriacy...Is that a word? I just need answers after so long...I'm more aware of patterns as times goes by...IC has been mentioned by half the doctors, while the others don't know for sure...

[noble1]

NancyB,
My GYN is carefully monitoring my endo and symptoms. That is why she has me on a low dose estrogen/progesterone combination right now. She did mention at the office visit last week that she wants to wean me off of the estrogen soon. Um, hello! I am just 40 and need the estrogen or I'll be a wreck! I was a nightmare to be around when she had me on the smallest possible dose and was biting everyone's heads off! I sure hope she wasn't serious about that!

Anyway, I guess I'll have to place another follow-up call to my GYN if I don't hear from them today. I left a message on Friday to let her know that the urinalysis that my GP did for me came back negative for blood in the urine and asked if she still wanted me to see the Uro since she suspects I have IC. But its already going on 1pm Monday and I have heard nothing back.

How often is too often to be calling and asking for advice and referrals to a Uro?

[SharonA]

Nan...

I totally understand how confusing things are to you right now. Everything is brand new and you don't have concrete answers. I remember when the urologist, who I went to see when I began having symptoms, mentioned that I could have IC. Since I had no idea what in the world IC was, I was in a state of complete confusion and had so many questions. He mentioned that the way to get a definite diagnoses would be via cystoscopy/hydrodistention under anesthesia. I needed to know for sure what was causing the pain I was having, so I said I would do it. I really am glad I did because, after the procedure, I knew for sure that IC is what I have. You, with your doctor's help, are the only one who can decide if you should take that step.

Not all doctors agree that the cysto/hydro is necessary to diagnose IC. The Patient Handbook has information about the other ways that are being used to diagnose. Not all doctors agree on types of treatments/meds are the right ones. The Patient Handbook has information about these. You have to take the time to get informed so you can become a very important member of your health care team. It really does help if you are well informed when you see doctors regarding your symptoms.

Take the time to read the Patient Handbook. There is so much information in it and it really will help answer a lot of the questions you are having about IC.

Take the time to read the information about the IC Diet. That one thing could very possibly help you with some of your symptoms.

If you will scroll down to the bottom part of my signature, you will find links to both of these excellent resources that are available to you here on the ICN.

:):):):):):)

[Nan2468]

Sharon A,

Thank you for your kind words also...I am a praying gal and have a hunch God lead me to all of you...

I am glad to be able to see my urologist today as I was told on Friday I couldn't see him until the end of September...He called me this morning and fit me in...

I too want to know definitely if it's IC or not...I'm okay if it's not...I don't need it to be IC...I'm going through the ilimination process...If you read my previous posts you'll see the details...Thank you for anything else to have to share...

I will take a look at the patient handbook too...