Please tell me this can get better

After 8yrs of pain and suffering I’m just about at my wits wend. I feel I have missed so much with my husband and put him through so much. The lack of sex is killing my sex drive and we have been robbed of so many special nights including engagement dn wedding. Now it’s stopping us trying for a baby when all my fiends are on number one or two and the family who are in the dark are getting suspicious. I don’t no who to turn to and the pain today has as good as had me in tears. I feel like all the options lead to a dead end and I don’t no what to do anymore. I cannot get any help through the Doctors and feel totally lost and alone.

Please do not feel discouraged. Know that you’re not alone and many of us can empathize with you. I found during my toughest times that counting my blessings helped to keep my psyche in check. If you dwell too much on the pain, it can take over you.

I will pray that you find relief from the pain. Please don’t give up. There were times when I hated my life because of the pain. However, today I am better and I’m glad I didn’t give up. Please know that better days are ahead.

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You will make it out just fine! I understand the discouragement, but know that YOU are better than this shit disease. Stronger too!

I'm so sorry you're going through this. Don't lose hope! I am cured and I battled it for 15 years. (It doesn't take that long to heal). Once I figured out the cause and did the protocol, I was fine. Literally fine. I can have lovely sex and it's great. So now I troll the internet trying to help others. Here's my blog. Read through it.

http://myvulvodyniacure.blogspot.com/2016/12/if-you-are-in-pain.html

Lately, I've been talking to women over the phone to help them come up with a plan and place to start, since there is so much to do. I just did this alone for years and I just want to help.

Please read and if you want to talk, just email me. My email address is on the bottom of the blog.

Sarah

Hi,
I am so, so sorry for the pain you're experiencing (both physical and mental/emotional!). What types of treatment are you doing? My symptoms started improving dramatically after finding the right drug combination and an amazing physical therapist. In PT I don't just do exercise, but we use a combination of dry needling, trigger point therapy, and guided exercises. I highly recommend finding someone who has expertise in pelvic floor physical therapy. What part of the world are you in?

Hi everyone,

I wanted to share a free resource with all of you that's been hugely helpful to me in healing!

http://saygoodbyetopelvicpain.com

It's a free webinar that I participated in about a year ago and then signed up for Lorraine's course, which has been very beneficial.

If nothing else, listen in to the webinar - you'll feel heard and understood and most definitely not alone. It's free, and I told her I wanted to share it here because I feel so many of you would benefit from it.

Alicia

Ladies!!!
I am trying to get the word OUT!!! 20 years of “vulvadynia”, ic, vestibulitis. Whatever the docs want to calll it. It’s been beyond depressing and has made me feel downright crazy at times. Incredibly painful, living in silent pain, going to doctor after doctor just to hear that “my mind is causing my vestibular area to flare up”.
PLEASE INSIST ON GETTING TESTED FOR A MICROORGANISM BACTERIA CALLED UREAPLASMA!!!!!!!!!!!!!!!!!
It’s a VERY hard bacteria to find!! Does NOT show up in urine cultures!! There’s a very specific test to find it and you MUST insist on being tested!!!! PLEASE BELIEVE ME!!! After 20 years of this craziness I FINALLY was diagnosed with this bacterial uti and THIS is what has caused the vulvadynia!!!
Doctors don’t even know about this. My new primary care tested me after showing up with a Walgreens uti rest showing positive leukocytes. The urine culture came back negative as usual. She had a sad talk with me about vulvadynia.
I don’t know what came over her to send the urine off to a lab and get it checked for ureaplasma, but she did. I am SO grateful. I am FINALLY HEALING quickly!!
Ueraplasma only responds to certain antibiotics. I’m on doxycycline. 14 days and it may take several rounds. This is a serious bacteria and it can kill you.
Some doctors will dismiss this test and bacteria and say it’s part of our flora. NO-INSIST. If it shows up as an infection because it’s colonized, it IS the cause of vulvadynia.
GET TO THE BOTTOM OF THIS VULVADYNIA LADIES!!! DO NOT BACK DOWN!! FIND A DOC WHO WILL TEST YOU for UREAPLASMA!!! DO NOT WASTE 20 YEARS OF YOUR LIFE GOING THROUGH THIS HELL LIKE I DID.
I’ve been through biofeedback, neurontin, creams, specialist after specialist.
I’ve found small handful of other ladies on the internet who have posted the SAME about their ureaplasma diagnosis. They are doing cartwheels like I am!!!
I am really trying to get to word out!!! I promise you ladies!!!! There is a CURE!!!
DO NOT GIVE UP!!!!! Trying to reply to as many women as I can!

Alana3 wrote:You will make it out just fine! I understand the discouragement, but know that YOU are better than this shit disease.  Stronger too!

I have had vulvodynia for 28 years. There was no google, or social media to turn to for help. I went from doctor to doctor. Some said "I had to get used to it." Then, someone recommended a gyno to me. He didn't know the treatment, but sent me to a dermatologist at Emory, Dr. McKay. She put me on 85mg. of amitriptyline, and it totally worked. I have been on it for 28 years, and I'm pain free. So, you can be helped.