Undiagnosed Chronic pelvic pain

[Normie-Orms]

In 2019 I had my gallstones removed in surgery and afterwards back on the ward my pelvic floor started throbbing and it hasn't stopped since. I've had every specialist and scan available except for CT which the doc refused to do. Now I'm bedridden with it and am going out of my mind over it as its been nearly 4 years! Anybody able to help out there would be much appreciated? Many thanks, Norma

[Buuldog]

I have no solution for you because i am going through the same myself, most cases of pelvic floor pain is muscular and then because of the duration the nerves go into hypersensitivity The muscle spasm can also close around the nerves and this creates further pain.

This is not an illness that the medical community seem to understand and they will send you up many blind alleys, this is very frustrating for us and the only advice that I can offer is to look for an answer outside of the regular medical route because they do not have any tools. I am currently in touch with a male pelvic pain specialist who has had some success. Best of luck never give up there must be a solution somewhere.

[Normie-Orms in reply to Buuldog]

Oh wow, thanks for responding. Sorry to hear you are a fellow sufferer. I know what you mean about the mainstream medical route, useless. I kept being told 'its a mystery'. I'm going to a Reiki master every week and releasing a load of trauma from my body. Naturopath for body health. I've not long had 3 nerve block injections in my pelvic floor. Phew talk about painful. Nothing has changed yet but will wait and see. Thanks again. Norma

[Karenellen in reply to Normie-Orms]

Here in Massachusetts there are more and more people trained in pelvic floor rehabilitation. Over the last 20 years I went through 2 two-year treatments of internal physical therapy to release the spasming muscles, and both times successfully. It can get better!Karen

[Normie-Orms in reply to Karenellen]

Oh thanks for that! Its good news. Part of the problem is losing hope and that is debilitating in itself. Will find a practitioner nearby. Do that would be a physiotherapist? Norma

[Karenellen in reply to Normie-Orms]

Yes, but must be trained in pelvic floor rehabilitation. Here in the US that means digital pressure on involved muscles, either through vagina or rectum. The relief from pain is worth it.Karen

[pizon]

All I can say is the more the medical profession practiced on me the worse i felt..try finding a herbalist and maybe chiropractic care also read the book “Healing Pelvic Pain” by Amy Stein also yoga 🧘‍♀️ the dvd by Dustine Miller “Your Pace Yoga Releaving Pelvic Pain”..these were the only things that have helped me…I hope they can help you as well

[Normie-Orms in reply to pizon]

Thanks for these leads as well. I'm desperate so will try anything.

[Jasper1002]

Would you mind letting me know what your symptoms are...I've been diagnosed 2x by urologists with interstitial cystitis.....I had bladder repair surgery on Feb 9 2018. I've been in constant pain ever since. I've taken all the drugs ....nothing helps except THC and kratom. THC seems to stop what I thought was bladder/urethra spasms and helps me sleep. Kratom works like oxycontin for me so I take it when nothing works. I feel bloated when I'm in a lot of pain. I feel like my bladder is too full causing a terrible ache and burn but it's not full. I can't do legals....makes the pain worse. I've used the pelvic wand that physio uses but I made it worse. Just wondering if you have the same symptoms...thanks.

[Karen1954 in reply to Jasper1002]

Hi!!!! What kind of kratom do u use? NOTHING has worked for me!!!!! How much thc is in your pot? Mine isn’t working yet!!!! I’ll try ANYTHING!!!!!!!!!! Thank u!!!!!!

[Normie-Orms in reply to Jasper1002]

Hi Jasper, my symptoms are different and they don't include bladder or kidneys. Mine is all about burning and stabbing pulses in my pelvic floor and pubic bone. They diagnosed pubic symphysis arthritis do went fir steroid injection into pubic bone. It got worse and has stayed that way. That was another waste of money.

[Jasper1002 in reply to Normie-Orms]

That sounds awful! I have rheumatoid in my tailbone....had 3 pain blocks. Still bad. I'm not sure if my bladder pain is actually my bladder. Where do you feel the pain....I'm Christine...Jasper is my dog. I have no idea why I set up as Jasper... lol

[Normie-Orms in reply to Jasper1002]

Hi Christine, my pain is centred around the pubic bone and radiates out into pelvic floor and out towards my thighs. My feet also throb to the same beat. Norma

[Dondonsm23 in reply to Normie-Orms]

Hi Norma I can relate to your symptoms mine are the same with the pain from my pelvis right down to my feet throbbing my pain management doc said it is nerves but also said chronic pelvic pain the oain does Not continue down to your feetBut it certainly does I haven't been back as of yet waiting on the waiting list for a follow up My point is the doctors are not sure either but I wish they would listen to us pelvic pain at times can extend to the feet the meds I was given do not work too I stopped taking them pregablin x

[Normie-Orms in reply to Dondonsm23]

They don't listen i feel. My feet throb to the same beat! So they are connected. They are just ignorant of it. What can you do. Here in Australia I'm being sent yet another internal ultrasound and a pelvic pain specialist but does he really know???

[Karen1954 in reply to Jasper1002]

Hi jasper! I texted or emailed u yesterday so I’m sorry to bother u but I’m interested in kratom but don’t know which one to try! I need help obviously with pelvic pain and nerve pain. Which one would help me? I emailed the company but they can’t offer help in that regard so I’m hoping u can! My email is [e-mail]. I would love to hear from u!!!! I can’t take much more!!!! Thank u!!!!!

[Karen1954 in reply to Karen1954]

Hi Christine!!! I’ve written to your dog twice! Lol. I was wondering what kind of kratom u use? I’ve been on norco and oxycodone for years and does nothing! Fentanyl did nothing!!!! I’m in more excruciating pain now after having a treatment for depression and I’m now HOUSEBOUND!!!!!!! Could u PLEASE let me know what kind of kratom u use? I’d be very thankful! Did it help your pain? I’m at my end so any help would be appreciated!!!! Thank u!!!!

[svaillantkenn]

My pain also appeared right after gallbladder surgery and has endured for ten years but I am able to manage it much better. I highly recommend getting an internal suppository that combines diazepam and gabapentin. That has helped me more than oral meds, which I stopped taking as they were causing constipation, which itself irritates the pelvic floor. The other thing I highly recommend is a good physical therapist. Once a month she releases my hip rotator muscles and the rest of the month I both stretch and strengthen them.

[cafebomaes]

You have pelvic syndrome. You have to search on Google, close to your place of residence) for a therapist who specializes in pelvic floor and who works with tecar therapy (tecartherapy.com/)

[Normie-Orms in reply to cafebomaes]

I think I've found a great physio who has given me a cancellation appointment for next Monday. So relieved as I would have had to wait until 19th Dec.

[Normie-Orms]

Since writing my post I have discovered there is as anxiety level which then ramps up the pain. Interesting eh. The more worried and traumatised I get and think about the future with fear the stronger the throbbing. So have to think Happy thoughts and focus my attention the the now. Norma

[cafebomaes in reply to Normie-Orms]

🫰👍

[cafebomaes in reply to Normie-Orms]

Of course! Pelvic syndrome and other musculoskeletal syndromes are caused by myofascial tension. Fascia is a thin casing of connective tissue that surrounds and holds every organ, blood vessel, bone, nerve fiber and muscle in place. The tissue does more than provide internal structure; fascia has nerves that make it almost as sensitive as skin. When stressed, it tightens up.

en.wikipedia.org/wiki/Fascia

[Normie-Orms in reply to cafebomaes]

Sometimes the skin on my legs tingle like they're ultra sensitive

[cafebomaes in reply to cafebomaes]

Exactly. I went through it all and, unfortunately, I'm still going through it, but I'm incomparably better!👍

[Normie-Orms in reply to cafebomaes]

hi maybe I missed your thread so how are you better if you don't mind asking. Norma

[cafebomaes in reply to Normie-Orms]

healthunlocked.com/pelvicpa...

[Normie-Orms in reply to cafebomaes]

I also has thought that there coild be a psychosomatic part to pelvic pain and with me it could be lilinked to my sexual abuse at age 7. Am looking into that covering all my bases. I'd be interested to hear if this could be a common denominator for chronic pelvic pain norma and why scans and painkillers don't work.

[Normie-Orms in reply to Normie-Orms]

My thought exactly and I was 7 too. I'm looking into psychologists now. I've definitely got stuff from childhood guiding my choices in life. Norma

[SouthernSally in reply to Normie-Orms]

Check out Dan Buglio/Pain Free You on YouTube. He is not a health professional but has relieved his own years of chronic back pain. He is within the TMS/MindBody space but that community does NOT believe the pain is unreal, but that your brain and nervous system perpetuate symptoms. Dan is real chill. You might like him.

[Normie-Orms]

Thanks for that but no-one seems sure of what it is

[alansommer in reply to Normie-Orms]

The same happened to my sister! They will know! They are amazing! It is a life saver. Just give them a call. It is a phone call. Try! Dont give up!!!! My sister was in pain for 5 years in her bed.... Just do it!

[Normie-Orms]

You gave out all that address information but didn't sat what your sister underwent so can you tell us please? Thanks Norma

[alansommer in reply to Normie-Orms]

My sister had a simple laparoscopy and during the surgery they made a grave mistake and affected (cut) some of her nerves in the abdominal pelvic area. She was in a bed with unbearable pain for 5 years.... Taking huge amounts of painkillers and opioid such as fentanyl....

So, an UK amazing doctor refered her to that Dutch team. It saved her life!!!! Now she can walk and yet she is still talking medicines, so she is not 100% but at least 60% better which is a huge improvement. That dutch team of doctors are using technology developed in the Netherlands. Give them a call! Or an email! Again.... this info it is gold! We were waiting for someone to help my sister for 5 years!!! Now you should put your hand on the phone and call! I am trying to help you but only you can do the move! Do it! It could change your life!

All the best!

Alan

[Normie-Orms in reply to alansommer]

Amazing!! What treat ment did they give her for that?

[Normie-Orms in reply to alansommer]

I was just looking at this again after having an ultrasound to find anything there but they couldn't. So did your sister have an ultrasound that missed the damage? Thanks Norma

[alansommer]

My sister went through a surgery and got 50 to 70% cured!J ust call the meds in The Netherlands!

[Normie-Orms in reply to alansommer]

I wouldn't have the money to go there so I'll have to rely on the aussie docs here

[Normie-Orms in reply to alansommer]

I'm going into Somatic experience which gently releases past trauma and the emotion attached to it. Going to give it a go.

[Puzzlelover54]

Sorry to hear about your pelvic pain. I have suffered with pelvic pain for over 25 years, and it is absolutely the worst. You'll be in my prayers. Have you considered the fact that you might have a condition called, "Pudendal Neuropathy or Pudendal Neuralgia." It is a horrible condition. This is what I suffer from. I hope that it is not PN but it might be something for you to explore. Peace!

[Normie-Orms in reply to Puzzlelover54]

I havent really been diagnosed only they say pelvic congestion. They say it's not physically made but psychological damage and trauma. I have complex PTSD and fight or flight syndrome as well as unresolved childhood sexual abuse issues. Going into Peter Levines modality of Somatic experience do hopefully will rap into and release stuck emotions. Honestly? I've lived my whole life from my wounded inner child and I now need to awaken and feel! Norma