Increased Pain After Ganglion Impar Block

[GwenR]

Hello,
I recently had a ganglion impar block on 7/25/17 and am having increased sharp pain in the right side of anus, internally in the right side of vagina and right vulva and the right groin. Has anyone else experienced this? I've had chronic pelvic pain since 1984 which got a lot worse at the end of 2014 (severe burning inside rectum, sides of anus, vagina, vulva, groin, buttocks, hips, radiating down both legs). I've tried pudendal nerve blocks, pelvic physical therapy, acupuncture, chiropractic, TENS unit, myofascial release with balls and foam roller, stretching, gabapentin and amitriptyline, dilator inside rectum and vagina, biofeedback, cognitive behavioral therapy, meditation, etc. I've been unable to work since the end of 2014 and don't have any income other than my husband's social security (he's retired now). I'm 56 years old. I live in southeastern Wisconsin. I'd like to find other people here in southeastern Wisconsin for a local support group because we don't have much here in the way of doctors who know about this condition (pudendal neuralgia/neuropathic pelvic pain) or are able to effectively treat it. Thank you.

[Violet M]

Gwen, I'm sending you a private message.

I have not had a ganglion impar block but I would guess that like any nerve block you can have a flare-up afterward. Hopefully it will calm down for you soon.

Violet

[GwenR]

Hi Violet,

Thank you for getting back to me.

I don't think this block will work, but I gave it a try. I think after pelvic pain of 40 years' duration, there isn't much I can do to impact the constant, high intensity burning in my pelvis. The urologist and neurologist said they believe there is a strong central sensitization component to the pain. I think the groves in the pain pathways are pretty deep. I'm trying not to give up, but maybe I need to come to a point of acceptance. I don't know how to do that.

Thanks again for responding.

GwenR

[Violet M]

Gwen, you do have a number of other options that it looks like maybe you haven't tried yet but sometimes you get burned out on trying more things. Sometimes I get carried away brainstorming ideas though. Just let me know if you want me to list some of them.

Violet

[GwenR]

Violet,

Sure, I'm always open to new ideas. No rush on this; you can get back to me whenever it's convenient. The one thing I've been wanting to try is cold laser therapy, but I can't find anyone here in southeastern Wisconsin who will do this on external pelvic region (in the butt crack area).

Thanks much.

GwenR

[GwenR]

Hi Violet,

I would be interested in hearing whatever other options you think might help.

A short history is I had sharp groin pain in 1984, had a laparotomy for endometriosis in 1984, pelvic pain continued, had follow up laparoscopy in 1985 where gynecologist said no endo, but so many adhesions in the pelvis it looked like cobwebs. Pain kept progressing until it got so much worse at the end of 2014, including burning in tailbone region, inside rectum, sides of anus, inside vagina, both sides of vulva, throughout buttocks, groin, hips, radiating down both legs. I'm starting to understand from reading various posts that maybe some of this (hip, groin, leg burning) is something other than pudendal neuralgia. I think I have multifactorial issues contributing to the pain, for example, vaginal atrophy, many falls throughout lifetime, weekly bike riding for 16 years ignoring the progressing pain, long term chlamydia infection from late 1970s to mid 1980s, etc., etc.

Thanks for whatever ideas you can give me.

GwenR

[Violet M]

Hi Gwen,

Adhesions can be very difficult to treat/deal with. I'm not sure what would be the best option for you but since your adhesions are already a problem, surgery isn't necessarily that answer for that since more adhesions might form. You might want to do a search on LottaNerve's most recent posts and how she achieved pain relief with an intrathecal pain pump. Other people have had good results with a neurostimulator. There are various types so you might want to research them before deciding on a particular type. I know these are just ways to mask the pain but they can significantly improve the quality of life for some people.

You could also consider cryoablation and amniotic stem cell injections but it seems like your pain is rather widespread so I'm not sure how effective these options might be.

Violet

[GwenR]

Hi Violet,

Thank you so much for the info. I will take a look at LottaNerve's posts.

Thank you for your commitment to this organization and all your thoughtful responses. I just found out today that my health insurance is denying payment for my ganglion impar block because they said it wasn't preapproved. The provider said it didn't require preapproval. So this leaves me in the middle with the responsibility for a $4,000 bill which is tough since I haven't been able to work since 2014. And I haven't had any improvement in the pain levels since the block. Oh well. Nothing is permanent. I keep repeating this to myself because one day I won't be here any longer and then this struggle will be over.

Thank you, again.

Gwen R

[Violet M]

Gwen, maybe you can appeal this to your insurance company since your provider gave you inaccurate information. But since they made that error, maybe they will work with you on writing off a significant portion of the bill. It certainly wouldn't hurt to ask. They must have had some reason for saying it was covered. Maybe they can do a little more research on why you were told that.

I understand how the fight against pain can be exhausting and it's even more difficult when it becomes financially draining. I hope you can get this sorted out and move on to a treatment that is effective for you.

Violet

[Violet M]

Hey Gwen, I heard back from a friend who recommends these PT's in Southeast Wisconsin. Here is the link to their website: http://www.pelvicwellness.com/gpage1.html They might be able to tell you if there is a support group too.

Violet