Chronic pain after surgerical removal of endometriosis

Women's health
1

Hi anyone and everyone

I have never been a part of a forum but am at the end of my tether both physically and emotionally. 

I am 24 and have 5 surgeries within 2 years to remove stage 4 severe endo, one of which resulted in the removal of my left ovary. 

After all of this, I still suffer from chronic stomach pain and for the past 12 months chronic leg pain. I have had CT scans, MRI scan, nerve tests, ultrasounds and no one including my surgeon and long term GP have any reasons as to why. 

My daily pain relief currently consists of 8 panadene forte, 4 endone and a norspan patch 30mg (pretty much a high dose of morphine constantly), voltaren 50mg 3 times a day, natural vitamins and a nightly dose of Valium along with antidepressants as my last 3 years have taken a huge toll on my mental health . As I’m sure some would be able to relate, this means I am not able to drive, sleep, concentrate, urinate, etc etc and am doing my best to hold onto a full time job! 

I have exhausted all tests I know of and none if given any hints to why I am still in such chronic pain. I’ve tried actupunture, hydro therapy, zoledex (medical menopause), so on and so forth to try and be able to survive day to day and am not winning!! 

With my surgeon stating the only options (in which no tests show is the correct step to take) is to remove my uterus with no guarantee that the pain will go. At 24, without children that thought breaks my hearts. 

I have read on here people with similar story’s and am hoping, praying that joining this (even though I’m from Australia) might give me some new ideas, options, tests or avenues I could investigate to work out what is wrong with me - I want my life back, more importantly.. I need my life back! 

If anyone has any information, suggestions, ideas, anything - I would be so very grateful as doctors and specialists are calling me a mystery! 

Thanks for reading - I hope to get some replies 🙏🏼

2

Hi! sorry to hear about all your troubles. I am not a Dr or health practitioner so my suggestions are just my opinion and obviously, you will need to consult with trained professionals to determine the best course of action.

I have endo and have a lot of sciatica and leg pain, as well as stomach distress. My thought would be that your endo has not been properly excised, or there are other complications.

I would look up "nancy's nook" on facebook as it has a wealth of endo info and lists of Drs worldwide who are specialists at excision surgery. You can look at the list as see if your surgeon(s) are on there and if not, maybe make an apt with a surgeon on the list, in your area.

There is a centre for endometriosis in Atlanta that apparently treats very complex cases from all over the world. There's more info on nancy's nook about that. The centre's website is quite good, if you google them. They can look at your medical history/charts for free and give you advice/see if they can help.

Those are my suggestions, of where to start......wishing you all the best! xo 

3

Laura, thank you so much for taking the time to read my story and reply - it means so much to me, thank you again!

I have requested to join the Facebook group you mentioned and will be hanging by my phone for aprroval to the group!

In terms of sciatica - I have had nerve ultrasounds in it and the nerve was conducting as normal which was just another test result added to the pile that hasn’t assisted inpin pointing where the pain is coming from. 

I hope I’ll find some useful information and resources from your suggestions and again can’t thank you enough for taking the time to reply!!