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Oh, it feels like I'm putting so many posts out there?! I have so many questions. I hope you all don't mind!
It is scary to feel that you are alone in this awful situation and by asking you guys on symtoms, I might not feel that alone anymore.
So, I have this horrible rectum pain. How can I describe it. It feels that my muscles are tight, and it also feels like the tissue inside the rectum feels gritty. The feeling starts accually above the anus and rectum in my very lower back, and moving al the way to my vigina. All this tissues feels dry and just really unconfortable. My tailbone area also hurts!
Has anyone experienced this symtoms? Still have them or have you gotten rid of them while in treatment?!
Sorry for all my questions. I'm so thankful I have found this webpage!
Bizarre pains
Hi Kristina,
I've never had the exact pain you describe, but people have all sorts of strange pains and discomfort associated with IC. I've had clitoral pain and tingling (not in a good way!), vaginal itching and vaginal pain during sex. I know that is common for a lot of women. The bottom line is that this is just another sign that everything in your body is interconnected, and unfortunately unbalanced at present. As your body gets healthier, all of the bizarre symptoms go away. A lot of my strange pains have anyhow.
Lauren
Unfortunately I know what you
Unfortunately I know what you are talking about!:( The tightness/cramping in the rectum has thankfully subsided for the most part. Still get a couple times per month, but definitely improved! The burning and itching in rectum and vaginal area still fairly frequent occurrence for me, but at least not constant anymore. The tailbone still pretty tender depending on how much i am sitting and what type of surface I am sitting on. Yes, I do believe this will continue to improve as I continue to heal. I had a severe case of yeast overgrowth when I started treatment, so am very thankful for the periods of relief I am now experiencing. Btw I am a year into treatment.
Candida?
How did she tell that you had a lot of candida?
Have you been allowed to eat carbs?
Thanks cprince!!!
Candida
I know that I had candida overgrowth because I had an upper endoscopy performed before I decided to see Matia due to severe reflux issues and my GI doctor found candida in my esophagus!:( Not very common from what I understand. Matia had told me she had never had someone actually show anything when the scope in performed, so often tells patients not to have the test performed. I had also been suffering from chronic vaginal yeast infections for basically 3 full years before this and nothing seemed to relieve my symptoms. I was miserable and made me very anxious! I am pleased to say though after a year of treatment my reflux issues are getting better, I now have periods of time between eating I have very little discomfort and vaginal symptoms are also less frequent, a couple hours per day at most I struggle with the annoying itching and burning. My system was obviously very out of balance, but making slow progress, and am very thankful for that!:)
Carbs
I relized I forgot to answer your carb question. I originally started the diet gluten free, trying to limit rice and potatoes. I was still having a hard time with indigestion and reflux, and just about three weeks ago I have gone completely grain less and limited potatoes, and this has significantly helped with my pain. I think Dr B kept me on grains and potatoes initially to limit other cravings when on such a strict diet, as well as maintaining weight. I don't know how long I will need to stay off grains, but hopefully not too long!
Thank you very much for your
Thank you very much for your reply. I have soo many questions, it is bizarre...
I'm just so nervous. I have so many strange symtoms all over my body it is crazy, and I'm nervous about the whole thing. What if Matia can not help me, what if I don't respond well to her treatment. And the thing is, I'm totally crazy, going ALL the way from Sweden to L.A. Expensive like crazy... and then it might not help me.
But I figure, what have I to loose!?
I'm sorry to hear that you had candida overgrowth. But it is also something that can be taking care of, so that is a positive thing! Once you get that under control, I'm sure you will feel better!
I have done several tests, gastroscopy (camera down the throat to the stomach), colonoscopy (camera through the rectum into the intestines) x-rays of stomach, ultrasound of liver etc. (not yet answers on this though)
I have done MRI on pelvic area. And non of the exams have showed anything.
The only thing, low ferritin (iron storage) and low D-vitamins! Thats it!
But I have a lot of pain on my right side on my stomach. I can feel the inside moving, and then cramping, and when I touch it, (press down) it hurts. It is like a swollen place!
That is ofcourse not my only symtom. I have horrible vaginal pain. Mostly now it is the urethra pain. Like something is stuck inside it. Feels like someone is twisting it and pressing it and it feels really swollen. The vaginal tissues also hurts. Can tell anything on the skin though...looks just fine!
Neck pain, shoulder pain. Tingling a long the spine and legs, feet. Electrical shooting down my legs and feet. My ears feels swollen and they hurt!
Horrible goin pain, specially on my right side!
My bladder also hurt. Feels heavy and inflammed. I can hold it in pretty well though, and I don't have to go pee all the time. I sleep through the night ok! But when I really really have to pee, the urin comes out really slow.
But I defenetely have bladder pain, it feels like I have to pee, but I know that I don't have to...
Oh well... I pray that Matia can help me.
Christina, when I first got
Christina, when I first got sick I had what felt like a pipe cleaner (those bristtley sticks used for crafts) stuck up my urethra, it was awful. I also had numbness and tingling in my feel and ankles. I know how scarey it is to feel like your body is breaking down on you. That is why I got on a plane a flew across the US to see Matia. Those symptoms were the first to go for me. I really think you are making the right decision in seeing her!
Hej C!
Hej C!
You have been a great support to me, also had email contact with you!
Guess what - I'm having my first appointment with Dr.B in the beggining of May. I am exchited but also scared ofcourse.
It is very expensive to go to L.A all the way from Sweden and a huge thing for me!
What helps me right now is reading about others similar symptoms and that the treatment is helping people. (Don't care so much about the other stories....:)
It feels great knowing that you are not alone in this, and all the woman here are so supportive and helpful.
Thank you very very much.
Kristina,
I am so glad you are coming from Sweden to get help from Dr. B. I don't think you will regret it, and I believe she will help you to heal. I think you are very wise and courageous. :) My daugher just had her first appointment with Dr. B, and she was so thankful to have her help. She kept telling me how kind she was. You will be on the road to recovery soon. :)
Symptoms
Hello again,
When I first started my ear canal was so swollen it was nearly closed at the end - I now have ear canals again! I had irregular pap smears-they were SURE it would turn into cervical cancer. It has all been norml for the last year and a half. I no longer need reading glasses to read something like a perscription bottle - still need them if I read more than that - About a year into treatment my eyes gushed for two days and I could see so much better. I no longer feel like I have a urinary tract infection all of the time - for the most part sex no longer hurts. It is true that in the last week I've had fairly minimal bladder pain and urgency - something that I haven't experienced for a good six months. However, inbetween the discomfort, my body has gotten rid of some rather nasty things from various openings - I'll limit the details. I've had pain on my right side, on my left side, they felt swollen - and now under my left shoulder blade. This is only to mention a few. Oh, my favorite - a hug swollen clitoris - yes, I said that word. Which reminds me, I didn't know what that meant until I was 14. Cany you tell me how that's even possible? (sorry - side tracked) Anyway, it has now retracted back to a normal range maybe I'll hold a party : )
The thing that I try to hang onto - is every time this condition causes some sort of wierd flair, I'm a bit better afterwards.
So, what I"m really trying to say by talking so much about myself - is that all your crazy weird symptoms are pretty normal around here. Some of us, occasionally, manage to come up with something new and exciting. So, try not to be scared that any one of these things is going to kill you - it seems, like myself, you've had them pretty much checked out and all the normal specialists are just shaking their heads. Too bad they aren't willing to learn anything by hanging out here for awhile.
Take Care,
Denise, you are
Denise, you are funny!!
Please don't spare any details for me, but perhaps for others on this forum :)
Funny you write about the ears... my ears hurts, it is like they are swollen and itchy at the same time. It also feels like there is something stuck in my throat on the sides...
I have also noticed that my eyesight is worsend as well. Crazy! My eys hurts so much when I try to roll them or just move them in different directions.
I have so many symtoms. Have not read about anyone having as many symtoms as I do.
It is so great to hear that people are doing better on this treatment. I just wish that I will too. I'm going all the way to Sweden to do this!
Thanks!
Kristina
Thanks for appreciating my humor - You will get better and you should be proud, that like most of the rest of us, you are just crazy enough to take this leap of faith - I assure you - you won't regret it.
I don't think your symptoms are worse than a lot of people on here. If you start way back at the beginning of this site, and track certain people - alot of them have been horribly sick and have gotten better - you will too.
I have that too
Yes, I have had exactly that same pain you describe. I just had surgery for it last week. A gastroenterologist gave me a sigmoidoscopy in which he gave me four botox shots to cure the pain.
The injections take about 14 days to get to the full effect, so I am still waiting to see if this worked. I feel better than before surgery, but I still have the pain - just not as intense.
I have also gotten a prednisone shot deep in my vagina to get this same nerve from the other side. This worked to cure this pain, however, a doctor put his finger in my rectum to check my uterus and messed it up again.
It would hurt constantly and worse when I sit. Also, it would be severe when I had a bowel movement, which also made my bladder hurt sharply too.
You're definetely NOT alone.....
Thank you all for your great
Thank you all for your great support in answering my posts!
We are all facing a lot of different symptoms, that is for sure! Honestlt, I feel sorry for all of us. I know my mom always told me not to feel sorry for myself. But sometimes I just do! :) and I tell myself that is ok, for a while at least!