Is my endo back already?

I'll try to keep it brief. After a horrendous 5 years of pelvic pain and many more years before that of horrendous periods along with every other symptom endo comes with. Also after years of being mis diagnosed and ignored! I was finally diagnosed by lap op last November with severe stage 4 endo and frozen pelvis. The 6 months after the diagnosis were the worst of my life. I was so poorly with the endo and the injections they tried me on made me worse. Eventually in May they did the big op to remove the endo. I had a specialist surgeon and colo rectal surgeon operate and they say they removed it all. I had a few rocky weeks after the op recovering and had an infection but after about 6 weeks I felt fantastic. The best I've felt in years. Finally I had my life back. No pain, no pain relief needed. My first period was a breeze! I have been taking the pill loestrin 20 before and since the op but only having a 7 day break every 3 months. So all was great and we had a 2 week holiday to the carribean at beginning of august. No problems at all. Until....... Last Sunday night I felt like I had a trapped nerve like feeling in the same place in my pelvis where I always got the pain before. I didn't worry at first and thought it would pass but it hasn't. It's got worse each day since. Tried paracetamol and ibuprofen but doesn't help. Reached for the naproxen today but that's not helped either. I'm now in a lot of pain in the pelvis and right hip and lying on the sofa. I feel like I did back before the bloody operation!! Surely it's not been able to grow back in the space of 3 months!! That just seems ridiculous. I can't be bothered to call the doctor as all they do is give pain relief and I have that at home plus my GP who knew my whole history has now retired. I see my surgeon for my next check up in November. I can prob contact him before then if needs be but don't want to do that just yet as it's only been a week of pain. I am keeping a pain diary though. Any advice or suggestions? Anyone think it could be my endo returned? Or do you think not. I just don't know what to think. I really don't want to end up back on things like Tramadol and oromorph :-(

7 Replies

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  • Sorry to read this. How dis heartening for you. I'm sorry to say that mine came back within a few months post surgery but thats not to say thats what this is. Great idea to keep a diary of symptoms and pain ect. Are you signed off from your surgeon or do you have any appointments coming up in the future? Xxx

  • Thanks for your reply. Yes I see my surgeon in November. I saw him in July but everything was good back then. I might email him via his secretary if things are still bad in next week or two. I'm pretty convinced it's back it's just too much of a coincidence where the pain is for it to be something else.x

  • Its horrible when you know in your heart. Im glad you have an appointment booked and that you are not stranded without means of contacting your surgeon. Good luck. Xxx

  • Thank you.x

  • Hi, I hope for you that it hasn't come back but I had a lap in January and was told my right ovary was perfectly fine and they had drained the cyst inside, I have had a second lap on Friday and they have told me that it needs to be removed. I suspect this was actually the case a couple of months ago but can't be 100% sure. Good luck x

  • Sorry think I just replied to myself not you! Lol. My reply is just below.x

  • Oh my gosh, poor you. That's the trouble you'll never know if it was bad back then or if it got worse after the lap in jan. My surgeon said he removed all endo and I do really trust him but when he said it'll never grow back I was quite taken aback as it seems to grow back so easily for so many others. Plus how can he 100% say that. It grew in the first place so there's every chance it can grow again. It only takes a tiny bit of endo to cause a lot of pain too. I am hoping I can just get pregnant really quickly, stopped taking my pill now. I have a little boy so one more would be lovely. Then they can take out what they want! Feel like my clock is ticking rapidly!! Best of luck to you with having to have your ovary removed.xx

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