RE: So uncomfortable

[Guest guest]

I'm so very sorry. I know you are in tremendous pain, but your surgery and subsequent stitch issues are very recent. These have probably set up a severe flare. Your tissues need time to reorganize and heal. So, as hard as it is, give yourself some time yet.

For the itching, have you tried taking Benadryl by mouth (ask your doctor if it will conflict with any other meds you're on) and/or using Benadryl cream on your vaginal area? I used both of these and they did help me. Also, I read that others have tried Vicks Vaporub (Ora mixes Vicks and Vaseline... 1:3 or 1:4 ratio, I believe). It's to be used on the outer skin, not inner. I tried that too in the beginning and Ora is right... it does help.

I was on the Vivelle dot for awhile, but have taken myself off of it. The Vivelle dot is a bio-identical estradiol made from soy and wild yams, and while it's an excellent product, soy is one of the things that worsens my vulvodynia because it is high in oxalates. (I've done really well on the low-oxalate diet plus various supplements.)

, we're all in this with you, so you're not alone! Talk to us anytime!!!!!

Subject: So uncomfortableTo: VulvarDisorders Date: Wednesday, September 10, 2008, 1:02 PM

I am new to this site. I would like to share my story.I am almost 50 and for the last several years at least 6, I have had terrible pain while having sex. It has felt like someone was stabbing, tearing my tissue while my husband was entering me. I have been to several doctors and no one really seemed to be too concerned. About 4 years ago I had a hysterectomy ( my ovaries were not taken) and my doctor at the time did try to excise and correct tisse where my epesiotomy site was. That seemed to be my main problem. I did great with the hysterectomy but the tissue that was another story. I was given lidocain to help when I had sex. I just endured the pain. It would bleed, swell, throb and would take a good week or so to feel better. Luckily my husband doesn't have the strongest sex drive. We didn't have sex much. Fast forward to earlier this year. I had been going to a female gyn and really loved her. She did

a biopsy on my tissue because she said it didn't look right. I had been having alot of cycst coming up on my ovaries which I had never had before. The last 2 times going to see my gyn she acted weird like she was confused on what I was there for, what what bothering me. I thought that is it I am not coming to see her anymore. She referred me to a pelvic pain specialist (the best thing she ever did for me!!!!!!) When I finally went to see him I explained everything to him. He listened and then did his exam. He finally diagnosed me with interstitial cystitis, vulvodynia and pelvic congestion syndrome. Finally!!!! a diagnosis. I finally felt validated. He has helped me tremendously. He started giving me trigger point injections(no fun but well worth it) He also prescribed some testosterone 2% lanolin cream that I would run on my tissue morning and night. I finally wanted to have sex again plus the injections

finally helped and for the first time in years it did not hurt when my husband entered me!! I couldn't beleive it. I was actually asking for sex!1 LoL!! It would still hurt though towards the end of sex but the pain was not near as bad as it had been but it was still there. I was still having cycst pop up on my ovaries. the decision was made to go ahead and remove my ovaries, look in my bladder and then do a surgical excision of the minor vestibular glands with a posterior perineoplasty to excise the posterior web. It took a while to get all the insurance stuff together but I finally had my surgery on the 11th of August and spent one night in the hospital. He also found that I had hernias behind my ovaries. I was put on vivelle- dot 0.05mg. I was scheduled for a 2 week post op and 6 week post op. After 1 1/2 weeks something was wrong. I went back to the doctor and he was disappointed because the stitches had

pulled out. He had to numb me up and place 3 new stitchess (ouch). Went back the following monday and 1 stitch had pulled loose but he thought it would be ok. Because of the pain he prescribed me some numbing cream. I have consistenly done the sitz baths and am trying all kinds of things to help with the awful itching on the outside of my vagina! It is unbearable. I am also having the same pain as before as far and wher my ovaries were. My legs are aching so much I can't stand it. Thank God I go in today at 3. I am so disappointed. I want to cry. I haven't taken any pain medicine because I am scared I will become dependent on it. I try not to complain about it because who wants to hear it, I could understand how this could cause you to go over the edge and lose your mind. I just want to have sex and have no pain. anyway that is my story and I am so grateful to have found this website. I have tried and

tried to research all my issues and thre is just not much info out there and unless you are living this no one can really understand what you are going through. Thanks for taking the time to read and offer help.

[Guest guest]

: God Bless You. i understand what you are saying. I have lived

some of it tho not as bad as you. I had complete hyster in ninetysix.

Please allow yourself to take pain med. I do only as needed and very rarely

as I too do not want to be dependent. I take tramadol for pain.

Do not give up. Find a female who specializes in vulvodynia. To say you

hurt is NOT complaining. It is what it is. I dont tell very many women

acquaintances of my issue either. Forget friends. NO ONE has time to be

FRIENDS...how sad.

They are just women who I play maj jong and bunco with....hugs, ml

Let us not become weary in doing good, for at the proper time we

will reap a harvest if we do not give up.

Galatians 6:9, New International Version