I'm new here and I am really scared..

[PaperLantern]

I am really scared about my current situation and really don't know where to turn or how to proceed next, in order to best investigate what is currently going on with me. I appologize in advance for the long post.

I went in July to a pelvic pain clinic for help in managing my PFD, pain with intercourse, and IC pain. I had not been formally diagnosed with any other disorders prior to this visit. I could walk, sit, and ride in the car with no pain. I had a series of exams over a 2 day period and on the second day, the doctor told me that I had Vulvodynia and Vestibulitis. He diagnosed that with the dreaded Q-tip test. He then told me that he recommended I get a pudendal nerve block to help with my pelvic pain. I was already in so much pain from the internal exam he just did, and the q-tip test that I couldn't think clearly. My husband was with me and saw how much pain I was in, and never questioned this doctor. (I might add, that these were done in a regular doctor office with no imaging and no consent was ever signed explaining the procedure to me.) So, he just said to me "OK, take a deep breath" and proceeded to give me the first injection into the pudendal nerve via my vagina. I thought I was going to pass out. He then did another one right after that internally and proceeded to give me a bladder instillation when finished. These blocks contained a steroid and a numbing agent. They also took cultures to check for any infections.I was also started on the Nuva-ring(for suspected endo), and a cream.

I immediately had severe feelings of pain in my vaginal area after these blocks. I thought it was the nuva ring and took it out. It didn't stop. I then thought it was the cream and stopped it. The pain didn't stop. I called the office and told the nurse practitioner and she told me I had BV, so I thought once it clears up it will stop. It didn't stop hurting. I went back 2 weeks later and he did another block with marcaine in the pudendal nerve, and did a ileoinguinal block on the right side near my hip. No anesthesia, right in his office. I thought I was again going to pass out. The pain didn't go away with these blocks. I go back 2 weeks later and he does a bilateral pudendal block with steroid and marcaine vaginally, and a bilateral ileoinguinal block with no anesthesia or pain medicine. I told him it hurt a lot. He said it usually does, but it will get better. It got worse. I can't sit without severe pain and numbness in my butt and groin. I get electric shocks at times in the perenium area that I never had before I went down there. I never had pudendal nerve pain before, and now I have it constant. What kind of testing or doctor is appropriate to see to have this "new" pain evaluated? Sorry for the long post. I'm just at a loss andreally quite frightened.

[Violet M]

Wow, I can understand why you would be frightened but it's not unusual to have some temporary worsening of symptoms after nerve blocks because the steroid can flare things up. (Some people do seem to have a bad reaction to the steroids.) Hopefully your new pain will go away soon but I think you are smart to be proactive.

One option would be to see a good pelvic floor PT -- one who has been trained in treating patients with pudendal neuralgia. There is a list of them on the homepage but if you don't mind saying where you live, someone here might be able to direct you to a good one. In the meantime, maybe your GP would prescribe some medications to help calm things down pain-wise. Ice gel packs can also be very helpful.

Another option is to have some non-invasive imaging done such as the 3T MRI from Hollis Potter in NYC or an MRN to see if there is anything abnormal that shows up.

If you can read through the diagnosis page and FAQ pages on the pudendalhope website that might answer some of your questions too.

If the pain continues, check out the list of PNE docs on our website but keep in mind that any doc who is licensed can be on that list so you may want to ask questions of patients here before making any decisions on where to go.

Best,

Violet

[helenlegs 11]

Hi Paper lantern.
I can't really add anything to what Violet has already said, all good advise. Do you have any medication in place at the moment, obviously that would be a good place to start and help the pain (as well as ice if you have burning pain)
I hope things calm down soon. As you are now probably aware it is much better to have these nerve blocks with at least ultrasound guidance but just for a better diagnostic result, a reaction to a steroid would happen regardless of course.
Welcome to the forum and let us know how you are, the effects of the injections will hopefully diminish quickly.
I really can't remember if I signed a consent form for an injection before?? but then it may be different in the UK.
Take care,
Helen

[beverley]

Paper lantern: how are you doing? I also recently had an injection that wasn't guided (not that i think it would have made a difference)-- and am having a terrible flare. My doctor, who is Debra Coady's partner, both well known pelvic pain specialists in New York City, said that she rarely has anyone flare and has never had anyone get worse long term from an injection?? Furthermore, my pelvic floor physical therapist Stacey Futterman, also well known, said she had never heard of anyone getting worse from an injection. Am I in the Twilight Zone? Their comments are so different from what i am reading on this site? i believed them and went ahead with the injection. I pray this is temporary and not a permanent state and nothing is touching the pain.

[mary jane]

good luck, paperlantern!

[chrissy]

Beverley and paper lantern. I too had a bad flare which has so far lasted Nearly 3 weeks but is calming down a bit today. I am due another injection Fri. My Dr is also well known he said some of his patients have flared up to a few months worse case scenario although there are risks involved.
I'm not really sure what is the benefit of the injections are as they don't seem to offer a cure.... I intend to ask before I go ahead on Friday. I know they are diagnostic but I have a diagnosis now so why have more?