New here and desperate for help

[JeanneJ]

Hi,
I've had IC for almost 40 years, that was controlled with diet. I also get frequent UTI's which really inflame things. A year and half ago I started pelvic PT for the first time. I had about 12-18 sessions and after that I started having perineum pain when sitting. I also had 6 bladder installations. The pain improved a little and was tolerable. I've tried Vaginal Suppositories. I can't tolerate Amitriptyline. Now, my Urologist is on maternity leave. I am using Gabapentin/ Baclofen suppositories. I just had a UTI that took 2 rounds of antibiotics to clear. The pain is so much worse. I almost went to the ER a few days ago. The PA ordered a MRI of my pelvis and the Dr wants to do a nerve block when she returns. I take CBD gummies to sleep and have 2 cushions. I am at my wits end. Does anyone have any other suggestions? Does Acupuncture help? Unfortunately, my work involves sitting. Thanks. I am getting anxiety and hopelessness.

[Violet M]

Hi Jeanne,

Sorry to hear about your increase in pain. As far as pain management, if you can find a doctor who will prescribe buprenorphine, it is a narcotic that is less likely to cause a tolerance than other narcotics. There is a gal with username Cora who used to post on this forum who used it successfully for a long time. I didn't have much luck with gabapentin. A lot of people seem to feel a related drug, pregabalin, works better for them. I didn't ever try it for PN because it wasn't available yet back then but I know other people have used it successfully. If you are having urinary burning, you could try an SSRI antidepressant such as lexapro, or an SSRI antidepressant such as duloxetine for urinary symptoms. They are a different type of antidepressant than amitriptyline. The thing to keep in mind with pregabalin, SSRI's, and SNRI's, is that when you quit taking them, you have to wean off slowly.

You could try heat or ice, or alternating heat and ice for temporary pain relief. A roho cushion could be helpful for sitting at work. That's the cushion I had the best luck with.

I didn't get much pain relief with acupuncture but if your insurance covers it, maybe it's worth a try.

I would be interested to hear how your MRI turns out.

Violet

[JeanneJ]

Thanks for answering. My Urologist is on Maternity leave and I have been dealing with her PA. Nobody has prescribed anything except the suppositories. I am waiting for a nerve block to be scheduled , which will be done by an Intervention Radiologist. Are there other Drs I should see? I generally like my Urologist, who I have been seeing for IC. I am desperate for help. Do NSAIDS generally help? I've tried some Naproxen and it may take the edge off. Thank you.

[Violet M]

Hi Jeanne,

If you are able, yes, I think it would be good to see a pudendal neuralgia specialist. I don't know who your urologist is, so I don't know how knowledgeable they are about PN. If they are very knowledgeable and will be back from maternity leave soon, it might make sense to just wait and see your current urologist. But if it's going to be awhile til they are back you can check out the list of doctors that we know about at the following link: https://www.pudendalhope.info/list-of-doctors-2/
You can click on the country you live in.

I did not have any pain relief from pudendal neuralgia with NSAIDS and to my knowledge, most people with PN don't get relief from NSAIDS, but it's certainly worth a try because we are all different.

Violet

[JeanneJ]

Thank you Violet. I tried to find Physicians on this site and only saw PTs listed. I live in Los Angeles. There are 2 Neurologists listed, who look like they offer surgery.
I am seeing a new urologist today for a second opinion who is "Integrative". I generally like my Urologist. I've struggled with IC for 35 years. This PN is relatively new for me. How rare is it? Do most Urologists treat it or do you really need a specialist? Are there any support groups for it? Thanks

[Violet M]

Hi Jeanne,

That's a good question - how rare is pudendal neuralgia? I don't know for sure because I talk to people all the time on this forum who have it, but there are many doctors who know very little, if anything, about it. Whether or not you can get treatment from a urologist would depend on whether they know how to treat it and what is the root cause of your pain. And it would depend on whether they know how to diagnose it. They can certainly prescribe medications, some might possibly give nerve blocks or inject botox, but if you were to have a nerve entrapment that required surgical release, they would need to be a PNE specialist.

Two doctors (Atashroo and Filler) on the list in California are still treating patients with pudendal neuralgia but I don't think the other 2 are. There may be more doctors in California who treat PN but I don't know who they are. You could check with PT's in your area and they might know of more doctors. https://www.pudendalhope.info/usa-physical-therapists/
Stephanie Prendergast and Julie Sarton on that PT list have been around for a long time and they might be able to give you advice on where to pursue treatment in California. They might even be able to help you with treatment. I don't know of a support group in your area but one of those PT's might know of one.

Violet

[RazorCarrie]

For me, it sounds incredibly tough to manage, especially with the added perineum pain and recent exacerbation. It's good that your medical team is exploring different options, like the nerve block. Acupuncture might be worth considering as some find it helpful for managing chronic pain conditions. In addition to your current treatments, exploring alternatives like medical cannabis uk could offer additional relief. It's important to prioritize your well-being and keep advocating for yourself with your healthcare providers.