Two weeks with the interstim

[itsabaddream]

WEll guys and girls its been three weeks since my interstim implant and I am not feeling any better. I have my period so myIC may be worse this week but I havent felt much improvement. So I have a few questions.

They started me on Toviaz also. Does anyone take this? and notice that it takes a LONG time to get the flow started.I swear I sit on the toilet five minutes before anything comes out. I think I might want to stop taking it.

does anyone have the interstim and maybe it helps with the frequency minorly like you dont have to run to the bathroom every second more like every 20 minutes but you still feel that horibble constant pressure and pain pushing on your bladder like a little evil ball of fire??
I know I am jumping from topic to topic but you guys help me to feel better sometimes andoffer some good advice.

Does anyone think that maybe the Elmiron just needed more time to work in my body? does anyone know the success rate of this medication. I am willing to try ANYTHING.
Also what about herbal rememdies??? Anyone know any that can help with the pain and pressure? Anything over the counter?

I know alot of you dont know my whole story Iwill have to set up one of those lil profiles that says the meds I am taking. but basically I have the interstim, tried elmiron for 2 1/2 months, vesicar, toviaz, detrol LA, amtitripiline, had a hydrodistention, had a lapraoscopy (to rule out endometriosis) am currently on lexapro and I wouldnt be able to live without taking percocet everyday (which I hate the stereotype that goes along with that) I am under the care of a Uro atYale and also a pain doc. I have done EVERYTHING by thebook and I am going to see Dr. Moldwin (the IC hero) in October.

I dont have any diet issues. I do not follow the IC diet but my flares do get worse if I eat tomato sauce or drink BEER! thats a killer one sip and i am done. but nothing else. Its not that I dont believe in the IC diet, I do, it just didnt work for me. I am in a CONSTANT flare.it NEVER goes away and I cry about 6 days out ofa seven day week. Not only am I in pain in my body, my soul and faith has taken a real beating since I started getting sick in Aug of 08.

love to all, Prayers and hope are sent to all of you struggling. let us stick together and fight this. Knowlege is key!

Love and Understanding,
Angela

[motherof4]

Have you been checked for a PFD it can give you that same pressure feeling on the bladder that never goes away believe me I have it and wasn't diagnosed for 10 years.I have been to physical therapy for a year now and have been told it is the worst she's ever seen I have even been her case study and my case has been shared with other doctors.Good luck I hope that you find relief.

[itsabaddream]

would you please send me some more information about it? It sounds like something I might have. Thank you for that.

[HopeWithin]

IC definitely is rough...actually thats an UNDERstatement its more like a living...you know what.

But i'm going to be honest here, Interstim was never intended to help pain, atleast that is what I was told. And there was a part of me that wanted to believe the people who said it would, but...again a HUGE let down. I live and breathe pain every day...

and right now I am having issues myself with the device. Its not helping my frequency at all. I could have it on and it does not nothing, still making trips to the ladies room like no other.

It sounds like you got the interstim way early, usually its a last resort thing.

Tried elavil? Neurontin? Instills? Physical therapy? Any anti-spasmodics?

Wish you the best. Hang in there.

[motherof4]

I pasted some signs of PFD I was finally diagnosed by my GYN my urologist was not helpful at all I switched doctors many times before my GYN finally helped me and sent me to therepy.I also tried the interstim but only the five day trial it made me feel worse so I didn't have the surgery.If you google pelvic floor dysorder you will find alot of info.



I Urinary frequency (need to urinate more than once every two hours)
Urinary urgency (hard to hold urination once urge occurs)
Discomfort or pain in the rectum (feels like a “golf ball” in the rectum)
Sitting is uncomfortable or painful
Pain or discomfort during or after sexual activity or orgasm
Vaginal discomfort or pain (at the opening or internally)
Pubic bone or bladder discomfort or pain (suprapubic pain)
Perineum discomfort or pain (area between the vagina and anus)
Tailbone discomfort or pain (coccygeal pain)
Low back discomfort or pain (on one side or both)
Groin discomfort or pain (on one side or both)
Pain or burning during or after urination (dysuria)
Pain or discomfort with alcohol, caffeine and spicy foods
Frequent night time urination (nocturia)
Reduced urinary stream
Sense of incomplete urination
Hesitancy before or during urination or difficulty starting urination
Reduced sex drive and anxiety about having sex (reduced libido)
Discomfort or relief after a bowel movement
Anxiety and pessimism about condition
Depression
Social withdrawal and impairment of intimate relations
Loss of self-confidence
Hot bath, shower or heat temporarily helps alleviate symptoms
Valium, Xanax, Ativan, Clonipin, Ambien (benzodiazepines) temporarily can reduce symptoms (but are not recommended as any long term treatment)

[motherof4]

Hi,just wanted to also say that I see that you are going to see D.Moldwin who is wonderful,but does not always have appointments or doesn't take all insurances I have seen him many years ago.I did find another doctor by North Shore Hospital he is a pelvic floor specialists and a URO/GYN and his name is
Dr.Lawrence Lind # 516 622-5114 I hope you find relief keep me posted.

[sissygirl]

Motherof4--

Thanks so much for posting the symptom list...very interesting as I have many of those symptoms tho I am very fortunate my symptoms are mild. Where there seems to be so much overlap, how did your doc distinguish between IC and PFD? or do you have both?

[motherof4]

Well I've had 2 hydro's one 10 years ago and the doc said that I had IC I had another one about 1 1//2 years ago and was told that my bladder looked normal very confusing since I never had enough Elmiron only about a 2 weeks worth of it and I stopped because I felt worse.I was diagnosed last year by my GYN it was all internal the exam I have very strong tight muscles that never relax thank god for him that I am finally getting help.My therapy now is almost all internal therapy and stretching my shortened muscles it has helped alot I can now function again I take a low dose of valium if I need it at night.I highly recommend getting checked by your GYNO because almost all of the urologist I have seen only 1 has ever given me an internal they only went with what symptoms I was telling them.I have found a great URO/GYNO who is wonderful and if it wasn't for my Gyno recommending him and therapy I would be in a fetal position crying right now.Good luck to you keep me posted!!

[itsabaddream]

thank you for the info. I will def look into PFD and ask the doctor about it.

Also thank you for the ref. for the doctor. I actually dont live on Long Island Anymore even though I grew up there my husband got transfered to west point in the army so now we live upstate in the hudson valley. I go to Yale for treatment and see a doctor named DR harris foster and he has been very patient and has really taken initiative in treating my disease.
I cannot wait to see Dr. Moldwin. I am hoping that he will be my god send

[Jereme]

Have your tried any of the antiepileptic drugs such as Lyrica or Neurontin. What about Atarax. Why did you decide to stop the Elmiron so soon. Most studies show that it works better the longer you take it. Keep in mind there is no cure for IC and many times treatment doesn't make symptoms go away completely. However, there are lots of options that can help get symptoms to a manageable level. I would also suggest mindfulness meditation. Practicing that helps accept what is without judgment. Pain is just pain. It's the judgements and thoughts of wanting it to go away or wanting it to be different that causes the suffering. Learning to wake up and be with unpleasant emotions or body sensations with acceptance is a very good skill to have and one that can be cultivated through mindfulness practice. Jon Kabitt-Zinn has some very good mindfulness CDs and books.

Good luck.

[NCIC]

Itsabaddream,
So much advice and support for you here.
Hope you will find some relief soon.

I have had an Interstim for 8 years.
They are treatment for frequency, not pain

If yours is not controlling your frequency, it needs to be reprogrammed at your doctors office...it may take several times and trial and error to get this right.

When it works, you will know....I could always tell in less than 12 hours if it was working right or wrong for me.
Hope this helps.
Hugs to you.

[NCIC]

As per your Elmiron question.

Keep trying it for several more months if you can, and do not have side effects, and can afford it. It can take months for it to be effective. Have seen even 1-2 year figures. And if it works, need to stay on it.

It does not work for everyone; actually a low percentage of those who try it stay on it....due to a multitude of reasons including it's effectiveness.

Like any treatment for IC.....it is great if it works for you!!! LOL

You are not alone.
You can and will get better with the right treatments for you.
And the IC community is always here with help, support, advice.
Hugs

[ebwrite]

I need advice. I have also been to Dr. Moldwin. I was told I have pfd and some IC. My main symptom is just urge and pressure. Also, pain with sex. I have tried detrol and all that type of stuff but since my symptom is mostly urge, detrol and its kind just dry me out and make it worse. My gyn just gave me gelnique which is a patch rather than a pill and supposedly has less side effects. I was thinking about going back to Dr. Moldwin or maybe someone else, like Dr. Lind, who I went to a long time ago. I don't remember liking Dr. Lind in terms of bedside manner. Also, I went to Marilyn Freedman for PT and she is wonderful but unaffordable because my insurance refuses to cover her. Any other docs/pts you recommend? To the lady who went to Dr. Lind, what is he doing for you and how is he different than Moldwin? Advice/suggestions will be appreciated. I also want to say that my gyn has not been all that supportive- because she seems to minimize it and not take it all that seriously. Is Lind the urogyn mother of 4 is referring to? Moldwin is very nice but he has some impractical suggestions and he also prevented me from starting PT, which was a great help but unaffordable.

[motherof4]

Hi,I have been going to Dr.Lind for over a year I find him to be very nice and have never had a problem with him.I have the same problems as you pressure,painful sex,PFD etc...See if you can get an appointment with Dr.Moldwin if you want but I do know that he is not taking many insurances if not try Dr.Lind again.I for one haven't had any luck with meds other then a very small dose of valium and I only take it at night I am in physical therapy and have been for over a year and that has helped me the most.I got my prescription for PT from Dr.Lind........

[ebwrite]

I was hoping you would respond. Do you mind telling me who you go to for PT? I stopped going because it was unaffordable. Also, my gyn gave me a prescription for vaginal valium, which I get from a compounding pharmacy and this way, I am not taking it orally and it doesn't seem to tire or otherwise affect me. Do you prefer Dr. Lind over Moldwin or is it just an insurance issue? Would you otherwise be using Moldwin?

[motherof4]

Hi,I go to

BODY IN BALANCE
611 Old Willets Path
Hauppauge
631-232-5350

I see Melissa she specializes in PFD and is so great she has become a really great friend to me as well.I wanted to go back to Dr.Moldwin ,but when I called a few months ago he was no longer taking insurance.I found out about Dr.Lind from my Gyn they went to school together and he is the one that sent me for PT.Where on LI do you live???

[ebwrite]

I live in East Northport. Does Melissa do internal as well as external PT? my email is ebwrite@aol.com

[motherof4]

Ebwrite I just sent you an e-mail..