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I was doing really good for a long time. No more pelvic pain and pressure. Then I started feeling more itching. One day recently, I had been feeling so good for a while, that I actually could stop concentrating on my symptoms. My pelvic floor dysfunction had pretty much gone away. I could pee normally. And I worked outside in my yard and was just enjoying the day and being active, not thinking about food constantly, not depressed. The next day, I had a flare.
It only lasted a few hours. But it was the first one I have experienced really in months. That took it's toll on me. That made me so depressed that right now I am in the depths of despair. I am trying to work and keep it together, but I am so sad and depressed and scared right now. I'm scared to eat again. I feel weak all the time. When I eat the wrong thing, I feel clitorial itching, and yesterday, it was bad.
I then have a habit, when I get scared, of reading the blogs on the Internet. I am afraid I have nerve damage and nerve entrapment because of the vulvadynia, clitoradynia itching I feel. It seems like other people I google on the internet experience this, but everyone just says it's a yeast infection, and it can't be for this long.
I am seeing a counselor today, but I have already been in two outpatient programs and in the hospital for my nerves, which made my nerves worse because the medicine they gave me made me hurt more. I have been so low lately that I have considered not being in the world anymore because this is all too difficult.
I don't feel like I eat enough to get enough nutrients. I can't make my family understand how difficult this is for me, and I need my insurance at work. They have been really good to me, but it is so difficult for me to concentrate. I want to just say to them, if you want to save me, you will let me come home and live with you for a while, but I don't think they understand how mentally bad off I am at the moment. I need help, and I am not finding it from anyone. Not the doctors here. Not anyone. I cry at work every day. I am not strong enough to handle this and deal with these constant symptoms. I was so hopeful when the pain began to decrease, but the other symptoms have jumped in my face.
I was out of fight or flight and panic for quite a while, and now I am back in it, and can't remove myself from it. I look at all the healthy people around me, and I am so envious of them. It's hard for me to read Facebook or hear people laugh because I am in such despair. I wish I had a million dollars so that I would not have to worry about work and could tend to my needs right now. I look for every bit of hope I can find and try to cling to it and put my mind in a better place, but it is not working. And living by myself is not helping.
I am scared and alone and I can't find help anywhere. Never even knew anything like this existed before the doctor suggested that I had it.
HOPE
Please don't despair. Try to think of this situation as TEMPORARY. You CAN get better, you WILL get better. Are u a patient of Matia? Have u got any friends or family that can help? Its completely understandable that you feel depressed - IC is a depressing illness to have. The fact that u were "doing really good for a long time" shows that improvement is possible. Try not to eat the wrong thing. Are u on list 1?
Try to FOCUS ON RECOVERY and not on the illness. (This really helped me). Only read positive stuff on the internet, avoid the negative stuff.
sadness
I am not a patient of hers, but I have followed her diet for a long time. I had been getting better and better. A lot of my symptoms disappeared. Then the itching became louder when the pain disappeared. Then I had the flare recently when I thought I was doing well. I know other people heal. That is what I cling to. I know my emotions have so much to do with all of this, but the itching is terrible for me. Without it, I could eat more things.
I had bad itching when I
I had bad itching when I first started the treatment; it disappeared pretty fast only to return 8 months later, when I thought I was getting close to the finish line. And then, the pain came back. I even thought about dropping out of treatment out of despair. I thought about it and decided that I don't have any other alternative than to keep doing what I've been doing. I am getting used to the limitations and they don't bother me as much. I had appointment with Matia 2 months after and she put me on the protocol that got my itching under control. I am almost back to the time when I thought the itching is gone for good. I know that I added too many foods too fast and my old symptoms came back. Cheeses and coffee are my biggest offenders. I don't know when/if I will be able to eat variety of foods in the future. But all I know, today I feel better.
It is good you are under the care of counselor. Don't worry about your family, don't spend your energy trying to prove something to them. Take care of yourself first and foremost. Take one day at the time.
What protocol do you follow? What herbs did you take with your MD/herbal provider?
you're not alone
Hi Me,
I feel really, really concerned for you. I hope you're telling your counselor what you're telling us here. If you are considering not being in the world anymore, please let someone know that you're feeling that bad. There are people who care and are there to help.
In terms of logistics, can you take a leave of absence from work? I was able to do that and continue my medical coverage. Or you may also be able to get social security disability if it is too much for you to be working due to your pain. The IC-network site has info on that (not that I'm a big advocate of that site, but it does explain how to apply for disability). Maybe you could also write your family a letter explaining how extreme the situation has become and that you need more help than you've been getting. They may not know the extent of your turmoil.
I'm glad you reached out to us here, but please try to reach out to those who know you and are around. You don't have to do this alone and there are resources to support you.
Herbs
I don't have anyone who administers herbs. Is there an herb to take for itching?
Sorry you are having such a
Sorry you are having such a hard time with all this! I too suffer from itching. I am Lilith you, how could this seriously be a yeast infection with starving it for so long!? I don't have any suggestions as far as herbs to stop the itching, but have you tried yoghurt? It at least helps soothe the itching irritated area! Take care of yourself! I agree you need to be telling your counsler about your thoughts.
Itching
I have read hat he itching old be due o pelvic floor dysfunction. Funny hat when I was in terrible pain, I isn't notice it, but now hat I am not having much pelvic pain I do. For me, it feels like a skin crawling feeling primarily on my left labia. But when I eat something my body reacts to, it is terrible on my clitoris and itches on the other side as well. The itching to me is worse Han the pain, I think. I really thought that my pelvic floor dysfunction has gotten a lot better so if this is it I'm not sure why. My whole problem started with a small itch on one side of my clitoris and a deep tissue labia itch that later became painful when eating certain foods like soda. Most of the time the itching only lasts a few minutes when I eat but yesterday it seemed to o on all day. It also seems to help slightly when I stand up. It is the current symptom that is making me lose my mind. Is there anyone out here who experienced a trauma to he vaginal area when their IC started? I also wonder if it is hormonal. I am a few dys past ovulation and it seems worse. Usually I don't notice it as much when on my period.
Rashes
Before all this happened, I also had a rash in my face that I had dealt with for years that made my face red in certain areas. One doctor told me once that it was yeast that had gotten into my face. Another said it was bacterial. I was treated with antibiotics for it for a while many years ago. It remained in my face but became almost unnoticeable. It kind of moved around to different places. Sometimes it would be red here and there, kind of like rosacea. Right before a
Right before all this happened, I had also developed a red rash under my breasts.
When I started to itch badly initially, my face broke out in little bumps that were also very itchy when I ate. Most of the time this happened when I ate potatoes, but potatoes haven't bothered me too much below.
My face also developed small bumps around my lips that went away quickly. I thought they might be herpes, but I have had blood tests for both kinds and I don't have it.
Just trying to provide more information in case this is relatable to someone.