Hello - new here and pretty desperate for help

[happyATtheOCEAN]

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[donstore]

Hi Dee,
Many of us have been exactly where you are now. You need to be evaluated by a PN specialist. Are your current doctors aware of PN ? A good summary is provided by the info sheet for medical providers and Dr. Michael Hibner's 2010 paper available on this site. Was your pain are numbed at all by the injections, even for a few hours ? Does sitting make your pain worse ? That can indicate a diagnosis of entrapment. Physical therapy has provided pain relief for some if you can get access to a PT that is PN knowledgable. Check the listings of PN doctors on this site. There are other drugs to try. Botox injections have worked for some. Valium has helped many sufferers. There are stonger opiates that can help you get on top of the pain. Controlling your pain will help your mental outlook considerably. Surgery is an option. Dr. Michael Hibner in Phoenix and Dr. Lee Ansell in Houston seem to be the most popular choices. You are not alone. We all know how you feel. Hang in there.

Don

[HerMajesty]

Hi Dee,

Don't worry you haven't really done anything yet. I think most people here have had nerve blocks without success and lived on narcotics for a bit. There really is soooo much more to be done. I remember being daunted by the sheer amount of information. Eventually you take it all in and will be able to make informed decisions for your health care.
If you go to the main page for pudendalhope.info and look at "find a Doctor" and "find a PT" on the main menu, hopefully somebody is going to be close to you. I had no Doc closer than 6 hours from me, but there was one PT listed in my area and going to her got me hooked in to other practitioners in my area who could help me. I have gone out of the area for care as well and will need to do so more, but that takes research, planning, and often wait times so meanwhile it is best to tap every local resource available to you.
I am a strong believer in letting underlying pathology drive your treatment. 2 ways to get information about what is causing this, are specialized imaging (see MRI /MRN section), and hands-on PT evaluation. These modalities compliment each other, one is not a substitute for the other. I did both and got different kinds of helpful info from both.
You have to be your own self advocate and the head of / most informed member of your health care team. Pain hurts but depression comes from feeling helpless. You are not helpless: educating yourself and taking charge of the direction of your treatment will have a big impact on your recovery. There is a search feature for this board which can get you information about others' experiences with any option you are looking into. It will save you a fortune on stuff like those supplements...there are plenty of scams to get people in chronic pain to part with their money.

[happyATtheOCEAN]

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[Celeste]

I think you should start investigating which PN doctors might take your insurance so you can plan a consult. SW VA...you are going to have to travel, so that will have to be figured out as well. I know it's daunting, but all of us have been there.

Best of luck to you as you decide your next step. There is help available, so please don't give up.

[HerMajesty]

sounds like you're going to have to learn the intricacies of the world of insurance appeals.
If you need a specific service, such as a pudendal decompression surgery, that is not offered by any provider in your HMO, you can usually appeal for some kind of waiver to have a provider of that service be considered in-network for you. You can check with whatever Insurance regulatory body is in place in your state, but in my experience if you play your cards right, an insurance company cannot deny you a standard / accepted modality of care based on the fact that no one in their network provides that modality. They will have to let you go out of network for in-network prices. The problem is they will make you jump through paperwork hoops to get the coverage, hoping you will give up. I was quite aggressive in my written insurance appeals, which discouraged them from playing games with me. They haven't turned me down in quite awhile. If they can't make you go away they will usually pay.

[Violet M]

Hi Dee,

Frequent hard falls could have caused a pelvic misalignment and you might benefit from at least having an evaluation by a good PT who is knowledgeable about PNE and mechanics of the pelvis/SI areas.

Your sister is very misinformed. You are not a drug seeker. You are taking medication for pain, not to get high, so hold your ground and don't let anyone try to make you feel guilty. I love your mom -- we all need someone like her who believes in us.

Ice is a great pain-killer too so you may want to keep some gel ice packs on hand as well as your heating pad.

At some point you may want to look into applying for disability because then your healthcare needs would also be covered. I think you have to be disabled for 12 months in order to be eligible and I'm not sure if you can apply before the 12 months are over based on a diagnosis from your doctor -- maybe some of the other forum members can answer this. You wouldn't have to think of it as a permanent thing but the PNE journey requires some time for recovery -- it's not going to be a quick fix but many of us do get better and get our lives back. So, keep your courage up, keep fighting, and you will get through this.

[Lernica]

Dear Happy,

Re: Going on disability

I agree with Violet that you may want to consider applying for disability since there are no quick fixes for our condition. I have been off work for four months and this has allowed me to concentrate on getting better -- PT, therapeutic massage, exercises, testing, swimming and hot tubbing (great for relaxing the pelvic floor). I would not be able to do all this if I were working. Plus, stress does make the pain worse, and working while in pain can be very stressful.

I wish you the best of luck in your recovery. You will feel better over time, but you do have to focus on your recovery.

Regards,

Lernica

[Robyn]

I am in Southwest Virginia

I am also in Southwest, VA.

Send me a PM and I'll reply with my email so we can talk.

Hope to hear from you soon.

Robyn

[Robyn]

Dear Happy,

I've tried to contact you but have had trouble................

I've tried twice, but apparently you have "PM'S" blocked, so I can't reach you that way.

When I try your email address that you sent to me by PM,,,,,,,,,,,,,,,,it comes back saying it is no good. I tried again today......maybe I'll get luckiy

I am hopng you read this and can send me another PM that will have your phone number.

I will be happy to call and talk about your expierences and plans at this point.

Sincerely,
Robyn