Vulvodynia and IBD update

No denying it. The burning is back. And it's insane like where it was for all those months. I've been through PG where i had an 18 cm hole in my leg to the bone.....yes that was also insane pain but it seems like that was easier to control. With this there's nothing that's really helped so far. Unsure why gabapentin stopped working. I'm now on 3000mg of Gaba which I'm told is extremely high. My vision is so blurred.

I am tough but this burning has broken me. I cannot describe it except to say that it's fire or hot coals. It hasn't stopped since last night, which was my biggest fear that it would become 24/7 again. Ironically bowel is behaving but I can't function because of this. Yesterday I ran out of the grocery store because I couldn't wait in line. It's just all consuming. I've just applied nitroglycerin....it hasn't helped but my heart is racing and I have a headache. If I take percocets I won't be able to walk my dog.

I firmly believe that all those doctors were just placating to my needs to get me out of the hospital.

HOWEVER....I managed to get an urgent appointment with gyne for Monday. Just have to hang on . I've set an rather stern and forceful email to the pain clinic and the nurse is calling me today.

I should not be suffering like this. NO one should. I'm terrified it won't go away. I'm terrified of missing the holidays....and even socializing this week. I have a chiropractic appointment tomorrow so I hope that helps. I find I'm holding my breath a lot because of pain.

I've been reading that botox injections are helpful. Treatment is urgently needed.

I don't think it's unreasonable to find out if the pudendal nerve is entrapped by the fistula. If it is maybe surgery could cut it out. NO ONE is answering that question. NO ONE is looking at the actual MRI. I don't understand why. Am I wrong to ask this?

RED---is there any way to connect with your friend? I don't know anyone else with this and maybe she has treatment ideas. Would you mind asking? I'll post my email in my profile.

EWA--I don't read polish....is there a way to translate or would you mind finding out exactly what she used..the dose etc.

SUZY---You're a doll....I've been referred to physio and biofeedback, I just can't afford it. I've read the combination of Gaba and biofeedback is helpful. Thank you so much. I'm truly touched.

I really just need answers....I don't want to cover up, I want to fix.

Regarding my bowel.....I'm now doing 80mg of humira weekly (2 injections). I'm to start imuran again. Tried it twice and it made my hair fall out and it did nothing else. My GI also agreed to hyperbaric oxygen treatment!! Canada Mark sent me an article about a study with 100% success rate at healing fistulas including a RVF. It will take time to set up but he's throwing everything at this to kill the fistulas.

I really want to go to ballet tomorrow. There's no way even if I wear yoga pants and not my leotard. I really, really HATE IBD and what it's done to me.

I'm trying so hard to hang on...to distract myself...to stop crying...I can't sit to watch TV now....I'm standing while typing this. I still haven't had a shower. I'm tired of sponging....

Thank you all again. You guys are my life line.

Hi UB....you are a fighter, and your tenacity will pay off. No one should ever have to suffer fragmented care for such serious crap you are suffering, and it's never wrong to push for what you need. Expecially for a complete diagnosis of your suspicion .

When you talk with the pain clinic, ask if the synthetic thc such as nabilone can be of help. My niece who has excrutiating body pain has had great success with it where the Gaba didn't touch it. There are other ones as well that might help.

I hope the loading doses help....

Im not clear on one thing....have you been diagnosed with a fistula for sure? And is it a tract that is still forming?

Hugs,
q

U.B. - the woman i've told you about hasn't been posting on the uc forum for a long time. In her old posts, i have now read she was taking amitriptiline, neurontin, estrogen creams and was undergoing therapy at dr Świątkiewicz in Sopot who is specializing in this disease. I found the link to this vulvodynia forum in her old posts. You don't have to speak Polish, just write whatever you want in English and there will surely be someone who speaks English. I can always help you with translation if you want. Women on this forum mostly write about doctors specializing in vulvodynia in different countries, not only Poland.

Sounds like you are reenergized, which is great.

There is a small network of physiotherapists who specialize in vulvodynia, as you know, and they will provide pro bono assistance to other women when they have time. Women helping women.

The good ones specialize in dealing with pelvic issues and also dealing with pain. The physio I spoke with often does pro bono work but she is currently booked, so she was going to reach out to others in the community to check on availability. If somebody raises their hand, I hope you will consider it. She seemed very familiar with the issue and positive that physiotherapy can be helpful.

I'll let you know what I hear and then you can take it from there.

Thanks everyone. I've done the same research. As you know I've been alone in this for so long, well except for me and my trust friend Google. There are antidepressants and such but I need someone to prescribe, follow up etc.

However, I see the gyne on Monday....I hope she'll consider botox or a nerve block. The nitroglycerin I used yesterday seemed to help; but I developed the most horrific migraine so I was debilitated by that. I've woken at 5am with no pain...fingers crossed.

So I spoke with nurse from pain clinic....the neurologist is booked for 3 months. Basically she doesn't know what to do and I got the distinct impression she doesn't understand this problem. She did say that the MRN (not MRI) would tell me if the nerve is entrapped. But the wait list for an MRN is very long... Not much help with this world renown pain clinic...

Quincy---yes I have fistulas. 3 including a RVF that's tiny at 2mm which is why I'm passing gas there. The other 2 are branching out. From the pain clinic consult note it reads "There is a fistulous tract from 5 o'clock to the left pudendal cleft." The pudendal cleft is part of the vulva....but what I don't understand is if that means the nerve....if the fistula is somehow touching the nerve. If so can I have surgery to remove the fistula? No one seems to answer that question. Sigh.

As far as Nabilone....I see MJ clinic also on Monday. I'll mention it. I'm so sorry to hear about your niece. I get it.

Poppie--- so sorry about your flare with LS. I have a friend with it too. I'll mention the GF diet to him; but I think his is fairly minor. I'm back to GF after my relapse. Hope I can stick to it. Perhaps that's why I never had any b or m while on IVIG.

I'm a little nervous about the amount of humira I'm now taking. GI also wants me to start another abx...biaxin. Great. That's all I need. But it's one of the Anti-MAP drugs for the RHB-104 trial. Hoping oxygen therapy helps.

Thank you again everyone. EWA- I'll post something on that forum. Thank you for your kindness.

Post Edited (U B Tough) : 12/1/2016 4:44:33 AM (GMT-7)

So sorry to hear you are dealing with this. It sounds absolutely horrific and I can't imagine how tough and resilient you are to continue to press on for answers throughout such an ordeal. I hope you find answers and much relief aoon.

Thank you Suzy---I sent you an email from my private address earlier today.