Who can you trust when it comes to doctors?

Hello my fellow sufferers. Yes it's me again. Deb. Well here it is my next complaint and now it's not so much about pain. Just recently I went for a procedure. I can tell you this I have learned from the past to always have someone in the room with you when you are going to see a new doctor. So, I'm up for my medical review with my disability and requested my notes from this office. I can tell you this. I basically know why the procedure didn't work. My chief complaint on the notes was back pain with radicular symptoms to bilateral lower extremities and pelvic pain secondary. No mention of pudendal neuralgia and also my burning pain was intermittent and I got relief on the toilet bowl and only had pain with sitting. I hate it when doctors are always in a rush and listen with a deaf ear. Not to mention this doctor had all my other notes from past procedures I had done. I didn't go in there complaining of back pain. I went in there complaining about what we all complain about on a daily basis. No wonder why the procedure didn't work. Any words of advice on this one. So, very upset. Thanks Deb 😔

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  • What type of procedure did you have Deb? I know what you mean about feeling rushed with doctors!

  • Hello Anne,

    I had a trial of a stimulater done. I was wondering why it didn't work as well as I know it had worked for others. I know now why it didn't. I'm very frustrated about everything and my pain got worse with it. It's like the never ending flare not to mention that while I had it yes my legs and back felt better but now everything is out of control in pain my vulva and rectum are extremely worse and for the last 2 weeks my legs and back pain have caught up to that pain. So stressed out because of this. I follow up with this doctor on Tuesday. I really don't know what to say to him. Thanks for listening Deb 😔

  • Is this stimulator an implanted devise? Why do you think it didn't work? I have chronic pain in the vulva and rectum also. Since I had the botox injections ( which did not help with the pain at all), I can't tell whether I have to pass gas or have a bm;( It is frustrating and I have no quality of life. If you hear of any good doctors ANYWHERE pls keep us posted!

  • Ann, it didn't work because this doctor didn't do a DRG stimulater on me. He put a stimulater in for back pain which made my pain in the vulva and rectum flare up so bad that I can't get it back to my baseline Pain of 7/10. It is and has been far worse since the stimulater. The doctor who put the stimulater his explanation for this was that all the pain concentrated to that site the vulva and rectum rather then helping it because it was helping the back, hip and leg pain. By the night of day 3 of the trial I wanted to rip it out of my back. The levels he did were T8-T12. I guess it is also my fault as well. I should have questioned him more. I realize now that I got a copy of the notes why he did this. I use to work in the medical field and I would be lying if I said I didn't often see my co workers doing this as well. Listening to there patients with a deaf ear and using the templates they created on the computer for each diagnosis they had to save time at work. It's really sad. I would stay 2 hours after work to get the notes done on the computer and then commute an hour and half home. I felt every detail my patients told me was important and everyone was different. You can't have a template for everyone. My coworkers would laugh at me. I also never got audited by any insurance company. The way the medical world is run today is sad. I think they should all go back to pen and paper. At least then notes were written and forced you to listen. Just saying. Thank you for listening. I'll keep you posted on my next move on what I'm doing. Not stopping till I find something to help us all. Can't live like this anymore and I know we all can't anymore. I promise. Deb🙏👍🌹

  • Wow, I am so sorry Deb! How awful:( I will be praying for you! It is sad how the medical world is run today. I always feel like they are typing your info. on their computer and only listen to half of what you are trying to convey to them. What city did you seek treatment? I hope that I am making the right decision to travel from Greenville, SC to Phoenix, AZ!

  • It was in New York. I may be traveling out to Atlanta Georgia next step if I don't do another stimulater or going into New Jersey. Thank you. I will be praying for you too. Deb🙏

  • I'm new on here so sorry if I get it wrong. I've recently been having severe vulva and rectum pain also. I've had ibs for about 15 years now with constant diorhrea. For the last year I have been having new symptoms. Constipation with lower left abdominal pain. Which was resolved when having a huge BM. Not this time though. This last few weeks have been absolute torture. Again severe constipation but not hard stools just having difficulty passing it out. Absolutely excruciating lower back pain that I almost feel as If i cant Feel anything down there. Can't pass any gas and horrible bloating. What have you been diagnosed with ? Maybe I can get some suggestion passed to my doc who is completely useless at listening. She actually interrupts me while I'm trying to explain what's been happening to me. I have been given a number to a new doc who I will be calling for a consultation very soon. I will let you know if he's any good.

  • I initially went to a Colorectal specialist in IN who diagnosed me with Levator Ani Syndrome. He made it sound like "no big Deal" and said it would probably go away on its own. For 2 years I have been trying to find answers. I have seen 3 Urogynecologists, a Gastrenterologist (who diagnosed me with a moderately prolapsed rectocele), 3 Urogynecologists as well as a physical therapist who specializes in pelvic floor dysfunction. After I had hope for this condition, I went to a Neurologist and had Botox injections in early December. It did not help the pain whatsoever, so I believe that I was misdiagnosed. After researching pudendal neuralgia (PN) extensively, I believe that this might be what I really have, Many of the symptoms of LS and PN overlap, and it is very hard to diagnose. I am going to see a doctor in Phoenix, AZ in March who is supposedly one of the best for PN. In the mean tie I pray a lot and sit on a heating pad a lot! Best of luck to you on your journey:)

  • Hey Anne,

    I will tell you this. It took me a long time to get officially diagnosed. It wasn't till this year after many years of suffering and being misdiagnosed several times and doing several procedures that made me worse because I wasn't with the right diagnosis. My advice to you is make sure you research the doctors and make sure they hear you. Listen to you. I learned my lesson. Also, something my doctor that I do love and trust see if they are willing to work with you if they don't take insurance. That will be your choice if you still want to see them. I have spent plenty of money with MD's who didn't take insurance who's techniques didn't help me. Be wise out there. Good luck and like I said I will keep this group informed on what I'm doing next. I did just go for the ganglion impar block. It took coccyx bone pain away and rectal pain for 16 hours but flare went right back to where I was before it. Iike I said I can't get my baseline Pain back to where it was before that stimulater. Good luck Anne on your journey to. Deb. 🌹

  • Hello Catherine,

    I have pudendal neuralgia. I have had it for far too long. 16 years+. My only advice to you would be at this point is to find a very good specialized gastrointestinal doctor. You can look up pudendal neuralgia at pudendalassociation.org they have very good information on pudendal neuralgia and a video you can watch about it. I hope that helps. I would be willing to answer any questions about pudendal neuralgia as I'm sure anyone on this site will. Good luck. 🙏 Deb.

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