This is a guest post from Jeanne (real name), whose pelvic pain has responded positively to alpha interferon injections. After relocating from New Jersey to Chicago, Jeanne had to stop the interferon treatment because she couldn't find a doctor who would administer it.
As always, if you'd like to write a guest post about your experience with pelvic pain, please email me at madpeachblog AT gmail.
Previous guest post: Hannah's Story: Success with Yeast Treatment
Jeanne's Story
Hello all who are suffering this hell, I am sitting here with the worst burning I have felt in years. I have seen at least nine doctors so far here in Chicago, and they all just want to "refer" me to someone or something...else!! This time, because my husband and I attempted intercourse after many weeks of abstinence - the typical burning after turned to deep burning and sticking way into my pelvis - I think it may be a UTI or IC. By the way, I have had vestibulitis since childhood, when I could not insert a tampon because of the pain.
I was fortunate enough to have a wonderful ob/gyn in New Jersey who suggested I try alpha interferon injections around the vestibule...don't cringe, they weren't really painful at all - and I had MIRACULOUS results, so much so that we sent him a box of cigars the following week. I knew it worked when I was able to wash the vulva in the shower, I was always terrified to touch the area, but I noticed it felt no pain, almost numb - I was overjoyed!! Now don't get me wrong, these aren't suggested for everyone with vulvar vestibulitis, but since mine was secondary to an HPV infection (though I never had warts), the doctor believed that my pain was from VIRAL causes - similar to Hannah's story...oh, interesting too that I was also diagnosed with fibromyalgia since the diagnosis of v v.
The relief lasted for at least 6 years, though I still had entry issues due to vaginismus, but no burning at all...I want you all to know that there ARE some treatments that do work - please read the articles on interferon and vestibulitis. It is very promising - and I am living proof that it does work, and hardly any side effects at all....they have actually found out that women with vestibulitis are insufficiently producing their own interferon (anti-viral), therefore, the dosing of alpha interferon is a viable treatment.
My problem is NO ONE will even "touch" interferon out here....they keep prescribing lidocaine and antidepressants - but I know better. Ladies - the interferon was helping - it offered UNBELIEVABLE relief. I am actually considering flying back to New Jersey just to have another course of injections.
Thank you Esther, for your blog, and god bless everyone of the brave women who are suffering from this awful disease. We must keep on sharing our own information with each other, so we can help each other get better.
Have a wonderful day! I need to get an ice pack and some anti-inflammatories...
Jeanne's Story
Hello all who are suffering this hell, I am sitting here with the worst burning I have felt in years. I have seen at least nine doctors so far here in Chicago, and they all just want to "refer" me to someone or something...else!! This time, because my husband and I attempted intercourse after many weeks of abstinence - the typical burning after turned to deep burning and sticking way into my pelvis - I think it may be a UTI or IC. By the way, I have had vestibulitis since childhood, when I could not insert a tampon because of the pain.
I was fortunate enough to have a wonderful ob/gyn in New Jersey who suggested I try alpha interferon injections around the vestibule...don't cringe, they weren't really painful at all - and I had MIRACULOUS results, so much so that we sent him a box of cigars the following week. I knew it worked when I was able to wash the vulva in the shower, I was always terrified to touch the area, but I noticed it felt no pain, almost numb - I was overjoyed!! Now don't get me wrong, these aren't suggested for everyone with vulvar vestibulitis, but since mine was secondary to an HPV infection (though I never had warts), the doctor believed that my pain was from VIRAL causes - similar to Hannah's story...oh, interesting too that I was also diagnosed with fibromyalgia since the diagnosis of v v.
The relief lasted for at least 6 years, though I still had entry issues due to vaginismus, but no burning at all...I want you all to know that there ARE some treatments that do work - please read the articles on interferon and vestibulitis. It is very promising - and I am living proof that it does work, and hardly any side effects at all....they have actually found out that women with vestibulitis are insufficiently producing their own interferon (anti-viral), therefore, the dosing of alpha interferon is a viable treatment.
My problem is NO ONE will even "touch" interferon out here....they keep prescribing lidocaine and antidepressants - but I know better. Ladies - the interferon was helping - it offered UNBELIEVABLE relief. I am actually considering flying back to New Jersey just to have another course of injections.
Thank you Esther, for your blog, and god bless everyone of the brave women who are suffering from this awful disease. We must keep on sharing our own information with each other, so we can help each other get better.
Have a wonderful day! I need to get an ice pack and some anti-inflammatories...
Thank you so much, Esther, for posting this!! My name is Jeanne, though, not Diane!! I am going to the vulvar pain clinic at Northwestern Univ.Hospital dept. of dermatology - they have a successful program for vvs - botox injections around the lower 6 and 8 areas of the vestibule. Lots of success stories. I will keep letting you all know if it works. God bless everyone who is suffering today.....Jeanne
ReplyDeleteJeanne, I have some questions to ask you about inteferon injections. Can you email me - shejots(at)gmail.com? Thanks!
DeleteJeanne,
DeleteI suffer from vulvodynia, vvs and gv, I also have narcolepsy. I was on amitriptyline but the fatigue was too great. I am hypersensitive to most drugs. I finally landed on gabapentin, with topical premarin (estrogen) and lidocaine for pain. The fatigue, confusion and dizziness had been very.difficult but I dealt with it bc it was working. Well it's not anymore and the pain is killing me. I live in NJ, my doctor seems fine but I need an expert. Could you tell me your doctor's name? Thanks! Erin erin.kristoff at yahoo
Jeanne, I posted this anonymously for you -- I didn't realize you wanted your name on it! I've updated it.
ReplyDeleteI should drop you an email to see how Northwestern went. Botox always sounds like it would permanently douse my libido, but maybe it has long-term benefits?
Thanks again!
Dear Jeanne
ReplyDeleteI know it's a long time since you posted this, but I read about your Interferon injections and I'm very interested in the topic. For my vulvodynia, Aldara-cream (against HPV, it stimulates the body to produce interferon alpha), was the only thing which helped until now. I only used the cream for 4 months and unfortunately, the pain came back afterwards. No doctor will prescribe me the cream and as it only works for damaged skin (which I don't have anymoore), so I think the injectioncs or even interferon in a cream would help. I think it would be interesting to discuss the topic and I'd like to hear more about your experience. I live in Switzerland, so far away from your place. But if you read this post (or anyone else who has experience with Interferon) it woulc be very nice hearing from you.
Greetings
C.