Chronic Pain Syndrome

[DAML8]

Has anyone here been diagnosed or have any experience with ‘chronic pain syndrome’?

If so, I’d like to know more about it. For example:

*How is it diagnosed?

*How is it treated?

*How do you know if your pain is CPS or Endometriosis?

Any information would be greatly appreciated.

[endostudent]

This probably isn't much help but before corona, I had been going to the doctor regarding 'unexplained pain'. It is very hard to diagnose as everything else has to be ruled out so if blood tests and scans all come back clear, they may refer you to the physiotherapist to rule out any issues there which is what happened to me. Unfortunately, my referral has been held up due to everything going on so I don't know what the next steps are but that was my experience with getting the diagnosis process underway.

[DAML8 in reply to endostudent]

Any info is helpful so thank you very much. I had excision surgery and extensive Endometriosis removed in feb 2020. My pains have not eased at all. My consultant is adamant that my endo could not have returned so quickly...but it has always returned within weeks after all my previous surgeries but my consultant is having none of it and isn’t willing to investigate my pains any further.

I feel very deflated and worried, if it really isn’t Endometriosis pain what is it? Or if it is endo pain why is he not willing to help me?!

[endostudent in reply to DAML8]

Is it possible for you to see another doctor and get a second opinion. I also feel like within a month or two of having my surgery my symptoms were back, also mine were lasered rather than excised so I'm not sure how much of a difference that makes. Honestly finding a doctor that will listen to your concerns is very difficult but if yours is not willing to investigate, it is best to see if you can get another professional opinion. If you are in pain, they cannot deny that fact and if they believe it isn't endo then they should help you get to the root. I'm sorry it has been so difficult, I really hope you get answers soon!!

[DAML8 in reply to endostudent]

Thank you...Ive had 6 surgeries...some laser, some ablations, a total hysterectomy and excision surgery and they all followed the same pattern of the pain returning very quickly. I am going to ask if I can see another dr for a second opinion but it’s just tricky atm with covid etc. I was just so shocked at my consultant saying he would do no more for me and wasn’t even willing to entertain the chance of the endo returning, it took me a good few days to process what he said. I’ve never heard of, or experienced a dr refusing to help someone in so much pain before. The more i think about it and go over the conversation in my head the more gutted i feel about it all.

[Moon_maiden in reply to DAML8]

Similar position, everyday. Gynaecologist bought forward MRI to check how extensive the deep endo is, I had this today. At the next multidisciplinary team meeting, it’ll be discussed. He thinks it’s the deep endo causing the issues, or at least some of them.

The GP also referred to gastro, had one test, now have to have a CT scan.

I’m pretty sure it’s endo related.

Go see GP, make sure you’ve got symptoms sure in your head or notes. I’m keeping notes. Good luck

[DAML8 in reply to Moon_maiden]

Thank you for your advice. Yes i do keep notes from all of my appointments and track my symptoms....if i dont write it down, i forget so i love a list lol.

I had gastro checked and ruled out before my hysterectomy.

It always ends up being Endometriosis, every single time. Every dr says it’s not possible for it to return so quickly but every time they open me up there has always been extensive endo, it spreads further every time too! Then the same thing happens...the pain returns within 6 weeks post op and i have to start the process/battle/cycle all over again.

[IndigoMoon1234]

This may or may not be relevant but I was diagnosed with fibromyalgia last year. I have pain all over and increased sensitivity to pain, ie things that shouldn't hurt do like using a pair of scissors. I know of several women who have both endo and fibro.

[DAML8 in reply to IndigoMoon1234]

Thank you, any information is helpful to me. I have seen quite a few people say that there can be a link between endo and fibro. I have looked up and researched a bit about fibro and the symptoms. I had all bar 1 of the 18 symptoms on the list!

I have a few questions if you don’t mind?...

*Is it easy to diagnose/prove?

*If so how?

*Is it easy to treat?

*Is it curable?

Thanks again for your help x

[IndigoMoon1234 in reply to DAML8]

To the best of my knowledge:

- there is no specific test for fibro. It is diagnosed by eliminating all other causes for your set of symptoms

- there are specific drugs that can help manage the symptoms but I chose to try the natural route first (weight loss, light exercise etc)

- there is no cure at present