Dear Friends,

I need to apologize for this very long overdue email.

Serenity Now, Suzy Q, Vercasault, Deb.....and many others....you guys have been such a support and I truly appreciate it. I'll never forget that day when I forcefully demanded to see a gyne; I know you guys were routing me on.

I couldn't write sooner even though I tried because it would have been more of the same and I was physically and emotionally exhausted to the point of being overwhelmed. I really wanted to write. I really wish you guys were here and are here because I'm so tired and lost. I'm tired of fighting and begging for help. I've burnt out my only support person with a burning vag.

Remember when I wrote that I was worried this is my new normal? Well, sadly it is. I am so sad. I'm just so sad for me, for what has happened, for what has become of me. I'm sobbing right now because I JUST WANT TO HAVE A SHOWER and I can't. I'm still unable too. It's been almost 5 months. I desperately want to stand under a hot shower and wash my hair at the same time, like you guys. I want to wear underwear and pants without pain. I want to use a menstral cup instead of pads, which hurt. I just want this to GO AWAY.

I did see a gyne (once) and she put me on gabapentin. It helped for a while. I had periods throughout the day when I didn't burn. I got irritated with clothes etc but it passed. I had stopped the percocets. I went to one ballet class and my teacher cried when she saw me.

Everything has changed again....I'm burning. I've increased gabapentin to 2700mg/day. Maximum is 3400mg.

I went to a pain clinic (once). The neurologist diagnosed vulvodynia due to crohns. I THINK a fistula is pressing against the pudendal nerve. I've asked for a nerve block 3 times. I've asked if the nerve is entrapped. I get no response. This pain clinic is supposed to be the best of the best. I think they just appeased me to get me out of the hospital and now have abandoned me. I need a solution and I don't know who can help.

The recommended pelvic physio. to help with incontenience and vulvodynia. I cannot afford it. At all. I'm beyond broke. My once nice, classy wardrobe is now old, worn and too big. I have no clothes and struggle to find things to wear that don't irritate.

That gov't approved retraining course that took a year to get into to....is now over. My plan to re-train so I could work from home with IBD is now over. Funny thing is it's not my bowel but my vag that's preventing this as I can't sit. I also can't concentrate, read a book and I can barely watch TV. Gabapentin has made this graduate degree holder utterly stupid. I have trouble spelling, finding words.....IF I ever get back to "normal" I need to re-apply and go through the year long process of approval again. I always worked, sometimes 2 jobs, I had savings, I had a life. Now my life is contingient on my bowel and vag. I'm one of "those" people that no one wants to become. I cannot afford supplements, diapers, clothes, xmas gifts....I feel so sad. I'm out of foundation and don't know how I'm going to afford more. I firmly believe in doing ones hair/makeup even if one feels like crap. I always went to treatment dressed as if I wasn't a patient....that's changed.

My disease is in the lower sigmoid/rectum. I have a RVF that's 2mm. Thankfully, still no stool passing through but I burn when I fart. (So I have internal burning from fistula and extrenal from pudendal nerve).

I have 2 other fistulas. My butt hurts. My vag burns. I'm sad that Humira hasn't closed the fistulas like others here have reported. As a result, I did the 4 loading doses again this past Thurs. I also had IVIG on Monday.
I guess the sharp stabbing butt pains are the fistulas. I have no idea.

As far as my bowel....it's hard to say how I'm doing on Humira vs IVIG. Prior to June 2nd (triple abx start and subsequent failure). My bowel was more predictable with IVIG. With humira I may go 2-5 times a day (sometimes more) but I never know when or how many times and I only have seconds to get to the bathroom. I'm still isolated. Wearing diapers hurts my vag.

As far as ballet and returning....unlikely.

I have socialized a bit...gone out to stores....felt the wind on my face when I could. But now the burning is back with a vengence that I'm scared. I'm scared of returning to that dark place, that was never really far behind. I'm scared of the pain. I'm just plain scared.

I'm sorry for the typos and long overdue message. I truly wish you guys were here. I've reached out the the CCFC and they have been absolutely, 100% useless. (that's a whole other story).

I don't understand why this freaky thing has happened to me and I'm alone in it.

But most of all, right at this moment, I really just want a shower.

Oh no!! I was hoping your absence meant you were busy finally getting everything rectified. So sorry to hear that isn't the case. Like iPoop, I wish I could come up with something to help you. This breaks my heart.

I am so sorry to read this. I hope something changed for you for the better. Sending hugs.

there's one woman on the Polish uc forum suffering from vulvodynia and as far as i remember she once posted that she had been successfully cured from it (btw all treatments in e.g. Poland or Czech Republic are very cheap compared to the States). I also remember that she was on a low oxalate diet and was applying estrogen creams to her vag. I've just clicked on her last posts and read she has posted that there is a Polish forum on vulvodynia where women exchange info on good doctors in Europe https://vulvodynia.pl/forum/czesc/leczenie-i-lekarze/

Please don't give up, you got this. Each day will get better and better, slowly. You choose the name U B TOUGH, now it's time to eat those words. You can make it.
Watch something that makes you laugh., over and over if you have to, get your mind into a happy place a few times a day.

I'm praying for you !!!! I have been through hell too with this disease. We are here for you to talk to, keep writing to us please.

Hugs and smiles

My own best friend is dealing with vulvodynia. And even tho I don't have this myself, I can only imagine this on top of IBD. I'm sorry you are having to deal with this as well. :(

UB tough...it's difficult and heartbreaking and extremely maddening to hear that the doctors aren't able to help you and that you are still in dire straights.

Please don't stop pushing for further possible treatments and connections as others have mentioned. Medications such as the tricyclics can help you cope and lessen some of the pain.

Huge hugs,
q

Thank you everyone. I'm touched.

I did have some relief for about 3 weeks where I didn't have that all consuming, fire/acid burning 24/7 when the gabapentin kicked in at 1500mg. I was grateful and relieved. Everything I did was like I was tip toeing so as not to trigger it again. I wasn't 100% but there were significant periods where I actually didn't feel my vag. I was tearful when viewing the super moon, at the changing leaves, playing with my dog, even when I was able to grocery shop without pain. Sounds silly. But it was pure gratitude for every tiny thing.

Over the last week things have changed. The burning started to build. Then on Friday it felt like it was falling out....like something was growing between my legs....kinda like I was growing a penis!!:) I went grocery shopping, went for tea and window shopped. I tried to keep busy and not sit down. I was visibly tearful at times, this time out of fear for the pain I was writing about in Aug/Sept/Oct.

I had a brake down last night (obviously). I was able to attend a party Sat night and I saw my darling nephews on Sun after not seeing them for months. I played on the floor, did puzzles, told silly jokes, talked about Santa etc. I cried on my way home....I realized how much energy it took to do that while sick. I cried because I was grateful for the party in which I laughed like I haven't done in a long time. I cried because this shouldn't be happening that I've suffered enough with PG and this is ridiculous. I cried because when I looked at the pictures from the party i realized that I actually look ill when I thought I looked pretty when I looked in the mirror. Then of course I sobbed because I really, really want a shower. I cried all night because I want to shower. In fact as I write I'm crying . What a surprise.

Then the intense all consuming burning pain returned. I'm absolutely terrified of it. I'm terrified of going back to that dark place, of isolating myself, of sobbing and pacing all day because there's no relief. I'm sure I have PTSD. So far today it's coming and going but not & not that intense.

Ewa--- you're so kind. i will look at the link. I've tried most lotions and potions which I found tended to make things worse.

I've been referred to a medical MJ clinic. I use it but have to be careful because it tends to exacerbate my depression.

I tried a couple of anti depressants earlier in the summer but both were stopped because I was more depressed and suicidal.


I'm incredibly disappointed in the pain clinic, especially the nurse. She held my hand when I was in the hospital and said she'd be with me, answer my questions etc. I have had no further support. I have no answers to basic questions about entrapment, nerve blocks, if the fistula is actually touching my nerve. This lady works with the neurologist who is supposed to help. I don't want to be on gabapentin the rest of my life. My vision is so blurred now, I'm dizzy and shake. I want to resolve not just cover this up.

Poppie---I don't ask for help (other than medical). I have a roof and food. I just don't know what else to cut to get by. Only other thing left is my dog insurance, but I couldn't afford vet care should anything happen to her. My debt load is now insurmountable. I've never had debt before. I don't have the $ to buy gifts for my nephews or pay my dog sitter when I was in hospital. I hope something comes up though. I'm not on social media---I'm private and humble and don't believe in begging so crowd funding isn't my thing. Thank you for caring all the way from CR!!

I keep going. I keep asking questions but I don't know what else to do. I just hope and pray Humira will kill the fistulas. Since the 4 loading dose on Thurs I've been going 1-2 times a day. Mush though. I'm out of fibre so it will have to do.

Since my release from hosptial, I haven't followed my GF diet. My neighbours were sending over the most delicious food like lasagna (which I haven't had in years) and now I just can't get back to any diet. I'm eating whatever...from healthy to junk, even fruit which was forbidden before. OMG cake with gluten is beyond delicious!! I think I'm so depressed and fed up with no real head way that I just don't care anymore. I actually think I'm still in shock and just so sad. I feel like I have no identity and I don't even feel like a woman.

I'm sorry again for the length and typos. IT's hard to see through the tears. I really appreciate each and every one of you. Thank you so much for caring.

I have no words of wisdom, but wanted to let you know that your story touched me. I am working on being a kinder and less judgmental person, and perhaps your story has helped another...me.
Keep trying to get answers- a person should not have to live like you are. Different SSRI, different biologic, different pain meds, different docs? Keep fighting. Hugs.