Need support

[mhilliard]

Hi there. I have had 6 DMSO cocktails which was seeming to be helping me. This past week I developed a yeast infection, confirmed by teh nurse who did my install. yesterday. This has sent me into a burning flare. I have read on ther posts that yeast infections can cause a nasty flare. I was so hopeful that my treaments were on teh right track. My frequency was much better. While I still had some pain, it was more of an annoyance then anything, but I felt for the first time since the holidays I was on the right track.

I did the Monistat lastnight and that seems to be making my burning worse. I calle dmy nurse (GOd bless her) and they calle din a Diflucan for me to take.

I am so scared! I feel like my options are wearing thin. The nurse told me that the cocktails take time and that it was good that proir to this infection ( I think caused by too many antibiotics) they seemed to be working for me. I have 2 more treatments to go and then they try to space them further apart, like every 3 weeks.....

I stick to the diet. I can not take Elmrion as the side effects were very hard on me. I am scared! I want something to work. My nurse told me they will jsut keep at it and not to give up hope. She said my body needs time to heal and that she has had great success with these treatments with other patients.

I feel like this is taking over my life. So have any of you had the yeast infection and it making your IC flare. I am just a burning mess.

Any support is greatly appreciated. My annivesary is in 2 days and I really want to enjoy it.
Please no horror stories. I can't take anymore!
Thanks.
Melissa

[kadi]

Hi Melissa,
I'm encouraged reading your story, that the DMSO was helping you. It's probably that the yeast infection has caused a setback, but that once it's gone you will feel better again. Monistat definitely causes me a flare, as does Diflucan (but many IC patients are just fine with Diflucan), so the burning you're describing is not surprising & likely temporary.

I did the DMSO cocktails (had a series of 6) in summer of 2004. Most of the improvement from those showed up about 10 days after the last in the series. I had monthly DMSO cocktail instillations as maintenance treatments for a year after that. They enabled me to keep working & improved my daily life. I was then able to wear pants again, work fulltime without many absences, take yoga classes, walk for exercise.

I did decide the next year to try rescue instillations. I had even more success with those & most days am pain free now. I work fulltime fairly easily, wear jeans, exercise at the gym, do yoga, hike, travel modestly, attend church. Basically, life is pretty good again. Though I do still have flareups, they do not dominate my life. And I am mostly pretty happy.

Hang in there, this illness takes time to treat, often takes trying a variety of medicines & dietary adjustments to be well again, what I really want you to know is that it IS possible to be very sick with IC AND then get better, to have a good quality of life again.

[Rivet Kitty]

I'm afraid I've never had a yeast infection, so I can't relate to you there, but man do I feel for you! It's hard when you're just trying to go through daily life without a million and a half things messing it up. I'm sorry you can't take Elmiron, but I've heard the instills can work wonders, and are much faster then Elmiron.

Are you able to take any pain medicine? Maybe if you told them that your anniversary was coming up and you didn't want to be miserable they'd give you enough for a few days? Also, I can't remember if you aren't supposed to bathe with yeats infections, but if you can maybe it would help?

Sorry I don't have much in the way of suggestions, but I hope everything turns out okay. And happy anniversary!

[leelee88]

Melissa,
I am so sorry you are having such a rough time.. But dont let it get you down. IC can be helped by the right cocktail of meds..Oh and I feel for you using the cream for a yeast infection..OMG it puts me on fire!!..But please try to stay positive I will be praying for you and hoping you will have better days ahead

[mhilliard]

Thank you to all of you. It is this support that is helping me get through this. I am trying to be positive and not let this run my life. I have 3 small kids and a wonderful husband that need me. I know some day I will get this down! I just keep telling myself that I have this forever and that is what is really bothering me. I just have this picute in my mind that my life is being ruined. I know this is horrible to even think. With just being dx in Jan. I am still going through all the emotions and anger and asking why me??? Any of you go through that? Did you get over those feelings?

Thanks.
Melisssa

[leelee88]

OH YES!!!!
I had all them feelings and still do.. I have days where I feel like just screaming WHY ME!!!!!!!! So yes its very normal to have all those feelings.. I will say for me it has gotten better with time.. I have just learned this is just the way its going to be for me so I try to make the best of it.. I do know that stress is one of my main triggers of a flare.. So I try not to let things get to me.. I do know that Elavil has helped me sooo much..Well I hope you feel better soon.. If you ever just need to talk you can PM me anytime.

[Sarojini]

You're very newly diagnosed -- of course it is normal to have all of those "why me" feelings! Most of us have gone through that kind of thing after diagnosis. I liken the time just after diagnosis to a grieving period -- essentially you are grieving the loss of your "normal" life, and you can expect to go through all of the stages of grief, like anger, denial, sadness...

However, your life is NOT ruined. Far from it. In fact, it sounds like you have found a treatment that helps you (your DMSO instills)! Yes, you got a yeast infection, and that can definitely cause a flare up -- but realize that once the yeast is gone, the flare will probably go away too. Just because you have symptoms right now does NOT mean you are back to square one. It's quite likely that you will go back for your other treatments and continue to do well once this temporary issue (the yeast) has been resolved.

[mhilliard]

Thank you for your kind words. This morning while my yeast infection feels better I am still having a lot of pressure and frequency, which was getting better for me. I am hoping this is still part of the flare from the yeast infection and that things will calm down in a few days. I want my DMSo's cocktails to continue to make me feel better but I am losing hope now. I feel so alone. My poor kids and husband deserve so much better then I can give them.

I am thinking about talking to my Dr. about the Elival. He had mentioned it before I started the DMSO treatments and said it might help me and maybe calm me down a little. We wanted to see how I did on the DMSO first. Any thoughts on that? It scares me to go on any other meds. but I am just not coping too well at all.
Melissa

[mom_in_ma]

Melissa,
All of your feelings are so normal. We've all been there! That said, stress is a big trigger for me - in fact, it's my main trigger and i think it's what started this whole mess for me years ago. Anyway, Elavil or another antidepressant might help you cope a bit better and give you a bit of a relief from the stress.

Please remember that most of us go back to feeling good at least much of the time. I've been on these boards on and off for years and there are so many people that I remember who have gone off to focus on other areas of their lives after getting their symptoms under control.

As for the yeast infection...I always request a tablet of dulfican. I don't flare from it and it keeps the yeast at bay. Monistat and all of the over the counter creams cause me to flare in a big way.

Take care.

[mhilliard]

Robin-
Thank you for your support. Right now I wish I could handle this better then I am . I just feel so lost and this is so unlike me. It is so hard for me to get to the Dr. without having to shuffle my kids. I only have my parents that live close and my dad is going through chemo. so the last people I want to bother is them. I am beginning to feel like nothing will work. I think I am driving my nurse crazy although she tells me I am not and to call her anytime.

I REALLY need to feel beter about all this. I am falling to pieces and no one understands.

Please keep me in your prayers as I hope that someday I will be much much stronger.
Melissa

[Roxie2007]

HI! Since you can't take Elmiron, have you tried Freeze dried Aloe Vera pills? They are a natural way to help rebuild the mucus lining in the bladder....and it coats the bladder. We have started buying the ones from Desert Harvest (on this site) and they work great! I take 1 pill 3 times a day.
I hope this helps and you get better. I've needed much more Diflucan than one pill......you may need that too if your yeast problem is worse than just a normal yeast problem. (((hugs))) Roxie

[mhilliard]

Roxie-
Thanks. Can you tell me a little more about aloa vera pills? How do I order them? Do they have any side affects? Has it helped with frequency/pain? I see you take a lot of meds. Just wondering how you know htis one is helping and not the Elmiron? Do you know anyone else who has taken them with success? Does your DR. know you take them? What is MSM? Sorry about all the questions. I am new to all this and need lots of help.

Thanks,
Melissa

[ICNDonna]

Elavil can help with pain/discomfort. My husband takes only 10 mg daily and it helps keep his arthritis pain controlled. If you decide to try it, you might ask about just taking a very small dose at first.

Donna

[mhilliard]

Donna-
Thanks, I think I am going to ask my nurse about it next week and see waht she says. I think I need something to take the edge off so that I feel I am in a littel more control.

I read a lot of your posts. You have a lot of good advice.
Melissa

[kadi]

Hi Melissa,
I started out with 10mg of Elavil & within a week went from voiding 60+ times a day down to 20. My pain level dropped significantly & I was able to sleep through the night with only 1-2 wakeups to use the bathroom. Increasing to 20mg, got my voiding down to 10-12 & lowered my pain even more. It's definitely worth checking out, just be sure to watch how much you eat while you're on it, it can cause some weight gain.

Elavil is my #1 treatment & has helped lots of people. If your flare continues, it's definitely worth a conversation with your doctor.

Hang in there--