feeling really sad

[tannisc]

Hi there,

I have been on Elmiron for three months now with 0 improvement. My urination has actually almost doubled in frequency, and I have horrible constipation. None of my doctors seem to think I have IC and I am not so sure either. I do think I have urethral syndrome though. My family doctor thinks I have nerve entrapment syndrome as the pain shoots down my thigh and I have really bad sciatica and a bad lower back anyway. I asked her the other day what I could do for that. She said nothing...to lose weight (which I am already doing) and that she wouldn't refer me to a pain clinic again as it wouldn't help me and won't refer me to a chiropractor as it likely wouldn't help. She is not willing to do anything, and just sent me away saying that the pain was because I was overweight. I am very frustated by this, and feel totally hopeless. I just am lost right now, and don't know what to do anymore. I can't stop crying anymore, and don't feel like ever going to a doctor again. Just had to let out some tears.

Tannis

[Sarojini]

:grouphug: :grouphug:

I am so sorry your doctor has told you this. That is absolutely untrue that simply losing weight can help the pain -- of course, it's good for you in other ways, but I am not sure it is the cure for what you have. Even if you do have pudendal nerve entrapment, there are treatments for that as well. Try to research it on the Internet and see what you come up with and then take it to your doctor. If she still doesn't listen, perhaps it's time to find another doctor who will.

You will find some help, I promise :grouphug:

[HollyS]

I am depressed also. I have been on Elmiron for 2 months with 0 improvement. In fact, I am worse. I have not been able to leave the house for 2 weeks now becuase I feel like I am going to pee my pants every time I get up and move around. I hate this. I wish I were dying of cancer. At least I know it would be over soon. I ordered the Cystoprotek 10 days ago and still have not received it. How long does it take to get to Michigan from Florida????????? I am sorry I am not much comfort to you, but you are not alone in this. There are lots of us suffering. Hope you feel better soon.

[July]

I'm so sorry you are feeling so terrible. I hope that you can find treatment that helps very soon. I will keep you in my prayers.

[Vicki]

Tannis and Holly- I am so sorry you both are having such a hard time. I wish I could make it better for both of you as well as everyone else with this awful disease. My experience living with disease for about ten years is that it tends to wax and wane. Usually, when I am at my wits end for some reason it gets bearable again. I pray this is the case for the both of you. Don't give up.

[ICNDonna]

:grouphug: I'm so sorry you're having such a difficult time.

Elmiron can take six months or longer to help so hang in there.

Sending healing thoughts,
Donna

[tannisc]

Thank you all for your kind words. I have done a little research, and it looks like there are alot of different treatments for nerve entrapment. This really does sound like what I have. I had a C-section and I also have had two other big abdominal surgeries. But, after my c-section my whole tummy was numb for almost 1.5 years. Once the numbness went away and the feeling came back, the pain started. It is possible that there is scar tissue in that area that is around one of the nerves. I found it really intersting that alot of women with IC actually get misdiagnosed with IC when it is actually this that is causing the pain (as the nerves connect with the bladder, vagina, rectum, etc...). Who knows! All, I know is that I really want the pain to go away. My doctor has completely given up on me,,,so unfortuntely I have to find another one. I just don't feel like I have the strength to do this anymore. I know that I have to do it for my son (he's 2 and doesn't understand why mommy is always so sore). It is hard when I am so scared to hear again that I am just crazy, and that people have functional pain and they need to just shut up and live with it. I absolutely agree that losing weight will totally help, and am doing so. Unfortauntely, the pain is getting worse (even though I have already lost almost 25 lbs). I will hang in there with the Elmiron. I know it takes a long time unfortunately. I just wish it didn't make my symptoms worse.

Holly,

I am so sorry you are feeling so sad too and that Elmiron is making things worse for your too. I agree, sometimes I wish I had something like cancer because it would be tangible, people would understand, and people would care about your pain because they wouldn't just write you off as crazy. Don't get me wrong. I am absolutely relieved that I do not have anything like that, but this chronic pain without any relief and no support is in some ways almost worse. I actually thought yesterday how easy it would be to drive off a bridge. I didn't even feel like going on anymore. But, I need to be here for my son. I would never do anything, but just feel so helpless. I am so sorry you feel that same. I wish there was something I could do for you. Take care.

Tannis

[ihurttoo]

Please dont give up hope! There ARE treatments out there! A pain clinic would be your best bet. They can do a pudential nerve block, that might help with the pain. Also, it is possible that you have pelvic adhesions from the multiple abdomial surgeries. That could also account for much of the pain. A gyno is the one to see for that. They can do laproscopic surgery to find out. They can also check to see if you have endo, or any pelvic abnormalities while they are in there. I would go see the gyno first. Also find yourself a new dr to refer you to a pain clinic. (The gyn might give you a referral, after the lapro. Mine did the lapro and I did have adhesions. He also referred me to a pain clinic for the IC, nerve entrapment, etc.) There are also several meds for nerve related pain. Lyrica has helped many, also there's Keppra and Neurontin. I take Neurontin and also an antidepressant called Cymbalta that works for neuropathic pain. Please persue this, and dont take "We cant help you" for an answer. You know your body. You know that it is not normal to feel this way. You are not asking for anything that every other person out there isnt.....to be pain free. You have a right to have your pain treated.
Hope you get help soon! Hugs, Amy

[tannisc]

Thank you all once again for your support. I HAVE HOPE!!!!!!! :) I called a doctor here in edmonton who deals with chronic pain and such issues, and he was wonderful. He had me fill out a questionnaire about my pain, and he said that actually they see tons of women who had C-sections develop severe pelvic pain a year or so post C-section. Amazingly, in many cases they can inject the C-section scar with some medication and it will dull the nerve (or something like that) and the woman has no more pain. Hey....at this point I am willing to try anything!!!! He said he will also refer me to the best doctor in the city for chronic pain (as he was actually a sufferer himself and this is his personal doctor). I am so relieved. He actually listened and said that he understands what it is like to hear you are crazy. He said they would do everything they could to help me and he would try and get me in as quickly as possible (even though there is a waiting list).

I have HOPE....and that is all that matters right now. Thank you all!

Tannis

[ICLori]

Wow, that's great! I'm so glad you found a doctor who believes you and who wants to try to help you!

Good to hear!

Blessings,
Lori