Chronic pelvic pain (neuropathy)

I have been suffering from chronic pain since about 2010. The pain started off as a something that would happen every so often and the pain would be manageable. But it has slowly increased in severity and has become daily. The pain feels like the most severe diarreah cramps or labor pains and for the past year and a half I have not had pain under a 5 out of 10. And a few times a week my pain can go up to a 10/10. I was wrongly diagnosed with i.b.s for about 3 years and was left untreated in excruciating pain. I have been seeing a gynecologist and pelvic pain specialist and have had nerve blockers and have taken everything from gabapentin to lyric to Cymbalta and anti depressents (which I am on now). I have no energy my body feels ravaged and I am in alot of pain. I cannot bend down Clean very well or even have sex with my husband because it's too painful and I swell shut. I have a daughter who is 5 years old and who deserves a healthy mommy I try my best but I would like to do and enjoy more with her. It's hard for people to understand even some of my family because I look like a healthy 22 year old but on the inside my body is wrecked. I need to know if anyone's going through the same thing. I need to know how to keep my head above water and not give up.

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  • Yes I have this. Google pudendal hope.org they also have a closed Facebook group. A Tap block has helped me the most. I'm under the care of Dr Shar Hashemi with the Nerve Bone Joint Institute in DC. Google Dr Lee Dellon and read his free chapters on his website in regards to pain. Get a sacrum MRI to rule out any nerve root cysts in the scarum. Google Forest Tennant pain guide and follow some of what you think can help you. Stop all exhaustive exercises and just do low impact, like swimming, walking, gentle yoga. Destress. Compounded suppositories with Valium, lidocaine and gabapentin help me a lot.

  • Thank you I will definitely read up on it

  • I suffer from positively the same thing ...it's kinda like a bad toothache but in your pelvic area but have no idea what it is. ..I also have had a historectomy....6 years ago and just in the say last month 1/2 it's getting really bad ...I feel a bit better when I'm standing. ...anyways hopefully we both find answers. ...:))

  • Me too I'm terribly sorry you have to go through this pain

  • To both of you: It really sounds like pudendal nerve pain. Look up on Google Images "pudendal nerve" and see if your pain is in most of those areas. If so, that is probably your diagnosis.

  • Been to the Dr and yes this is most of my symptoms as you said Dr gave me pain killers till I see a gynecologist. ..thanks so much for the info

  • I just looked it up and it sounds like some of the symptoms I've been having but I get some serious pelvic pain to the point where I can't even move

  • Have you seen a women's physical therapist who does manual pelvic floor muscle treatment? It sounds to me that those muscles are in bad spasm. Yes, they get worse as time goes on if you are not treating the muscles. Ive had the terrible cramping feeling, too. If you havent seen a pelvic floor PT, I'd do that as soon as you can. You can find one near you by going to apta.org and clicking on Find a PT and choosing Women's Health.

    Also, even if it turned out to be something else besides muscle and nerve pain, they look for what else it might be during the first day evaluation. You would need an order from your doctor to begin therapy.

  • Does the painget worse throughout the day, as you've been on your feet? Better in the morning? I was diagnosed with pudendal neuralgia but also with pelvic congestion. A varicose vein or veins internal causes blood to pool in the pelvis causing pain. I found some relief from that street having the veins embolized. Make sure your not missing that because that is a very hard one to diagnose. There are almost no doctors who do catch it.

  • No pain constantly and gets worse when I'm arroused got bad after I had a uti about 2 months ago going to see a specialist soon for it I also had a historectomy 6 years ago with complications after surgery. I can't even feel my pelvic area. .pain gets better when standing up.

  • In my experience the arousal pain was fixed with botox. That was the most recent thing I did. The only thing to ever touch that severe pain. Now it's almost completely gone. Sounds like you have some muscles spasm in the pelvic floor which can cause urinary issues and pain with sitting, sex etc.

    All of the other issues like uti or surgery can cause the muscles to go into spasm because they want to protect the area.

  • Ok I got something on pudendal nerve pain or pne...pudendal nerve entrapment.

    Pain resembles this.

  • Yep. Same here. I had a surgery but I'd recommend trying to get relief from physical therapy and botox first. It's a hard surgery. Your pelvic floor could be spasmed causing a compression of the nerves. I'd try to get the pelvic floor healthy first. If I could have done botox way back when I had the surgery it might have kept me from needing it. I don't know.

  • Ok thanks for the info will mention that to the specialist when I see her thanks so much.

  • You bet. Good luck.

  • Do you know if you have endometriosis? Did you by any chance have a c section?

  • No c section but a historectomy.

  • I got a laprascopy to see if I did have endometriosis but my doc didn't find any signs of endo but he did find chronic bleeding and inflammation around my pelvic area they have also recently found that the lymph nodes in my pelvic area are inflamed. I had a natural pretty normal birth except for a pretty bad tear but my pregnancy was rough I had a lot of pre term contractions and was put on bed rest for the last two months if that matters

  • I'd look more into the lymph nodes. Is that a common thing? I've never heard of that in the pelvis. Make sure you rule out all other things outside of the"chronic pelvic pain conditions"

    The bleeding is curious too. Something I've not heard of.

    Research pelvic congestion as well.

    Good luck.

  • This sounds like Pudendal Nerve Damage to me. I too have had increasing pain, starting of with mild symptoms, which have gradually got worse over the last two years since having my son. His birth was a cascade of interventions resulting in me sustaining an episiotomy which tore into the vaginal walls and my bottom.

    I am fighting to get pudendal nerve damage diagnosed as I have been consistently fobbed off and told my symptoms are in my head etc. I fully sympathise with you as I know how debilitating these symptoms are. Do you also have prolapse? The feeling you describe also sounds similar.

  • Find a pt to work the scar tissue of you can get an mrn it might show where the nerve is trapped

  • You also may need to travel a bit to a doctor who specializes in diagnosing and "trying" to treat pudendal neuralgia. Regular docs won't be able to diagnose. Look for a pelvic pain specialist or urogynocologyst.

  • If muscles spasm seems to be a factor, botox injections plus PT have helped me tremendously. Sex with my husband used to be a9 on the pain scale. Now, post botox, maybe a .5. Amazing results for me.

  • I have looked up this pudendal nerve damage and my symptoms are exactly alike.

  • If you have ruled out everything else.. Cancer, fibroids etc....pudendal neuralgia is something to start looking at. Attack it from a multidisciplinary approach. You want to try to find it and relieve it before your whole nervous system starts to go crazy. It's hard to do and takes a lot of work.

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