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Hello ladies,
Just wondering if anyone else can relate to the pain I'm going through now and maybe offer some advice or hope that it will go and not come back! Lately I have been experiencing soreness and constant awareness of my lady parts below. Im so scared to wipe every time I go to the loo because it either hurts or I don't want to aggravate it. Sometimes it's so sore/uncomfortable that I can't sit because it puts pressure on that area and that does not go down well!! When it gets that bad, I also find it uncomfortable to walk because it feels like something's poking me in between my legs, the same sort of feeling when I sit. It will also feel very raw, like salt on a wound feeling, constantly
It used to come and go but now it feels like it doesn't go completely just is dormant until something aggravates it, even then aggravation can spontaneously come on, I don't necessarily have to have eaten something to bring it on. I'm just so fed up of this soreness. When it feels itchy I'm too scared to itch because it will again, aggravate the soreness. I can't quite locate where it feels sore, sometimes it feels like around the urethral opening, sometimes vag opening and other times all over/inner labia.
Has anyone felt something similar? I think this is vulvodynia?! Whatever it is, it's so horrible and really disheartening. I'm trying to keep positive but hard to do so when I feel this all the time without having done anything wrong :(
So sorry you are in so much
So sorry you are in so much pain. I have had all this but not to the degree you are. Uncomfortable to wear pants and sitting. When I'n that uncomfortable with it I try to sit on a soft pillow or lay down as much as possible. Some ice packs might help with the soreness. Have you mentioned it to the Dr. Yet? They might have some other suggestions as well. Sorry :(
Thanks Patty. I have been
Thanks Patty. I have been emailing Dr B about it and we have been making adjustments to the protocol. It is better than before but I can still feel it mildly and I'm sure it won't take much to aggravate the pain to a high level...still quite fragile.
Did you go through a phase of this or is it something that comes and goes now and then? I can't wear trousers/jeans. I've been living in tights or leggings for over a year! I've been lying down a lot too which does help until I have to sit up to eat or something.
Keep me in your prayers xx
I had horrible symptoms
I had horrible symptoms several years before treatment. Could only wear dresses. When I first started treatment I went through a stage of it got worse before it got better but Boaz has been so good at improving things. Even though they are not treating our symptoms he has really worked at making me as comfortable as he can while not comprimising the goal. I have recently had a change in protocol and I seem to react to those changes every time but my body usually adjusts to it. It might be some die-off for you. Its strange how we are all so different. Some suffer continually with bladder pain and others suffer with pain in other ways and other areas. I know these symptoms are so life altering :( but hang in there and continue to keep the doctor informed. I WILL be praying for you.
I can totally relate to you.
I can totally relate to you. My pain is so bad these days, that I can't sit and I haven't been able to for several months. Standing is very difficult, but I try to walk a little bit everyday because it seems to help. I wear skirts that are very loose around the middle because even my abdomen is tender. I was doing better a year ago, but the pain gradually got worse until I finally resorted to medications. But the medications haven't really helped much so I am slowly getting off of them. I am having some blood and stool tests done, and I will probably be getting an MRI very soon because I need to see if there is something else causing all this. It really is miserable, but Dr. M is helping the best she can while I get all these tests done. Hang in there! It will get better!
Thank you ladies, really
Thank you ladies, really appreciate your messages. Patty, I hope this is die-off - maybe I'll convince myself it is and then I'll start feeling better! :)
Rachel Ann, I understand when you say having to wear loose clothing. I am the same, my abdomen is also tender - another reason why I don't wear jeans/trousers. Sometimes the car seat belt also feels uncomfortable for me, I end up holding it rather that let it rest on me. I really hope you start feeling better very soon, I understand your pain.
May we continue to be strong and regain health xx
Yes Rachel. I so hope you get
Yes Rachel. I so hope you get some much needed answers and that they can start treating the under lying problem of what all is going on. You have been so strong through everything. You are long over-do for some relief. I will be praying for you as well. Hugs to you both.