Am I Going Mad ?

To cut a long story short

1. Had a Laprascopic Sterillization in 2002

2. After Op went back to work after 3 days (not a sit down job either) had an infection was rushed to hospital and had to be "flushed out " ?

3. Was in pain after and finally got diagnosed with a cyst in 2005 even though i felt like my gynae and doctors thought i was making the pain up. Even just before op he said the cyst could of shrunk. duh had op and found it was a dermoid cyst and after googling found out dermoid cysts just don't shrink.

4. Had a year semi without pain few twinges the finally pain back but slightly different this time through family history Mum Dad and Sister I knew i had gallstones although doctor was highly skeptical and after a year of extreme pain finally had operation to remove gallbladder and many gallstones ! Felt like taking them to that doctor and saying " I told you so " !

5. 2012 still having pain went doctors referred to same gynae as cyst experience so wasn't very hopeful although didn't see consultant saw understudy and was put on Zoladex for 6 months then back to consultant who said i should of been on Zoladex and HRT so yet again for another 6 months pumped full off drugs while getting no real relief. Finally in January of 2014 I finally got a Hysterectomy and they found I had Endometriosis. Recovery was a long process and got a Haematoma which was awful.

6. It's now December 2014 and still in pain. Been back to consultant last week and he did a Transvaginal scan and basically said @Look NO WOMB NO CERVIX NO REOCCURRING ENDO NO OVARIES and basically come off Tramadol go to the gym do reflexology ! i am not a give up sit down person i walk half hour to work each day ( and not an office job) then walk home do half hour on treadmill Taking Tramadol helps.

Feel like they think i'm crazy. Even more so today as decided I wouldn't take the Tramadol and pain was awful by 5 pm so took a couple pain eased after an hour :)

All I really want is not too be fobbed off and made to feel crazy.

From what i have read THE ENDO COULD OF RETURNED/ IT COULD BE OVARIAN REMNANT SYNDROME

What will happen at the pain clinic, really worried i'm going to be fobbed off again and going to stop the tramadol which is the only thing that relieves the pain so i can at least go about things semi normal

Any advice or support would be lovely

2 Replies

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  • Hi there. That all sounds pretty horrendous, you poor thing!

    Unfortunately, endometriosis is usually an ongoing condition unless it is all removed, and is not only found in the uterine area. For example, I have patches of endo on my bladder and bowel, and it has also caused my uterus to be stuck to my bowel. A full hysterectomy doesn't necessarily mean that all the endo has gone, because as said it has been known to exist outside the "usual" places. It may be worth discussing this with your doctor to totally discount any undetected endo.

    Incidentally I've had 6 months of Zoladex in the past without HRT as it was such a short time, and was told that being on it for longer can affect bone density so I'm surprised they put you on another course straight after.

    I hope you find a resolution to your pain quickly x

  • Hi,

    did they remove your other ovary, or just the uterus?

    If they removed the other ovary, and you are not on any hrt the endo should shrink as there are no hormones to feed it even if there is some left.

    it is entirely possible the pain you are getting is secondary to a problem caused by either the endo itself or the surgery such as nerve pain or adhesions. Unfortunately neither of these are really fixable, but are problems you need to deal with long term. Sometimes for nerve pain gabapentin can work well, or amitriptyline. For adhesions they can operate and try and break them down but my experience during my endo ops is that they reform within days.

    I am currently 30w pregnant and unlike in my previous pregnancy have had no improvement in pain this time. This is likely linked to adhesions and nerve pain as the pregnancy shpuld have dampened down the endo.

    good luck getting things sorted.

    x x

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