Bl**dy Endo causing so many problems!

Hi all,

Firstly I'd like to apologise for the rambles your about to read but I'm in desperate need of some help and advice. I can't take much more.

I was diagnosed in 2011 with stage 4 Endometriosis by a laparoscopy aged 21. It was pretty much everywhere and the surgeon said it was hard to get rid of, but she had managed to burn it all away. I had to go back a few month later to see her as the pain got worse, she said it couldn't of been my endo causing the pain as it had gone so must of been old PID that was also found that has left everything permanently swollen. She said there was nothing else that could be done and told me to go back and see her after my children and she'd give me a hysterectomy!!!

Everything was good for a while, then I moved in 2014 and I was struggling with pain again. I pushed for a referral to the gynecologist as they have a specialist endometriosis clinic where I live now. I saw her in November last year and she agreed I need another laparoscopy, although she wants to do a diagnostic one first before treatment so they can decide the best treatment plan. That's booked for 4 weeks time but I just can't wait anymore.

I'm currently writting this in agony with tears running down my face. I have never in the 4 years since I've been diagnosed been in this much pain. It's constant cramping, nothing numbs or dulls the pain and it drains me completely, this has been going on for 3 weeks now and it hasn't stopped.

I went to the drs Friday where she gave me antibiotics for a suspected bout of PID again, as well as tabkets for my ibs incase it was a flare up of that. I had to go back Monday as I had severe side effects to the tablets. Again, I was crying to the drs as I have been everyday for the past 3 weeks. She referred me to the hospital for scans and blood tests ect. After 5 hours all came back fine and I was told by a "lovely" man Dr that I had to just keep going with pain relief until my operation in 4 weeks. I left the hospital in tears feeling completely helpless and weak.

Does any one have any idea what could be going on? Obviously my endo is back but why is the pain so bad? It's immobilising! I really can't take this anymore and I wish I was listened too. I'm at work now wondering how I'm going to make it through the rest of the day without taking my trousers off because of the pain I'm in.

I'm so sorry to rant. Please help.

7 Replies

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  • Oh Hun i really feel for you and I'm so sorry you are suffering like this. Can I ask what pain relief you are taking?

  • Only co-codomol atm which isn't working but helps me sleep at night. I've left a message with my dr to see what else she can prescribe me. I have to be careful with what I take because I'm a nanny so need to be alert all the time unfortunately, I also have a very weak tummy when it comes to tablets!

    The only way I can describe the pain is to say it's like the worst period pain I've ever had but it doesn't go away and I'm not having a period!

  • Yeah see if they can give you something else Hun you shouldn't have to put up with this pain.

  • Hiya,

    Sorry you're in so much pain, there's nothing worse! I'm afraid I can't help much with regards to why it is so bad, the same as you I have been told in many a condescending tone "well it's just your endo love" - you could call PALS (patient advise and liaison service) if your hospital has this service, they have been very helpful for me and at times I have managed to get dates pulled forward.

    If you visit your GP they should be able to trial different methods of pain management, you can also request a referral to a pain management clinic. My GP was able to bring forward an OP apt for me by faxing over an urgent request to the hospital, not sure if you will have much luck with surgery though.

    Hope you're felling better soon

    A x

  • Thank you for your reply. I'm going to try and phone all the people you've recommend tomorrow and hope another visit with my dr will shed some light!

    The only reason I'm so concerned is I've never had pain like this in the 4 years. It's so strange.

    Thank you again, it's nice to hear from people who are in the same boat, makes you feel less lonely. X

  • I feel exactly the same way, it is a very isolating illness I think, it's good to know theres others that can really understand. I have some wonderful friends, that do their best but they still don't really get it sometimes.

    Best of luck for your calls tomorrow

    A x

  • You are not crazy...I understand. I recently purchased a tns unit from Amazon.This is portable and soes relieve some stmptoms.I'm stafe 4 too.Although stage 4 sounds like the worst,some women at this stage experience nothing. You mentioned PID, I gad that too....debilitating. Endo trumps any pain I've ever felt including the c section and natural births .I also have used accupuncture, this is also helpful.Did Lupron...I would not recommend....horrid side effects. Change in diet exercise...psychologist...psychiatrist. I'm sorry. to say its an ongoing battle.You have to find whats best for you.Dont give up.

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