I have endo was diagnosed in July after years of feeling unwell. I take norethisterone. Got bloods done as had symptoms and was diagnosed with PCOS two weeks ago. I called specialist and was told just to continue on norethisterone and that's it. I feel I need something else. Can anyone help. I'm not back at hospital until April and disappointed that I had to co tact the hospital and they didn't seem that bothered that I hadn't been told I had the condition xx

2 Replies

  • Hi Laurab82.

    I'm really sorry to hear you're having such a horrible experience. My advice would e to research and find another Dr who specialises in endometriosis and get a second opinion. Just because one Dr says that's all that can be done doesn't mean it's true. I was told by one Dr that nothing more could be done for me, got a second opinion and had the endo surgically removed that month. I know second opinions can be expensive if you pay for them but they are so worth it.x

  • I've had this for 25 yrs, just now getting an experienced doctor to help. This doesn't just go away and what ur taking will only mask the problem. I took high progesterone b.c. pills for years. It keeps it at bay. My endo has progressively proliferated from my bladder into my bowels. I don't want to c that happen to you. The shit grows and spreads. I personally believe u can die from secondary causes related to endo as I had twice not been able to urinate and had to drive myself to the E.R. and beg them to catherize me. The endo is either on a ureter or pushing on my bladder inabling me to urinate. I'm lucky to not have died from kidney problems. Just trying to make a point. Go to any doctor and demand an M.R.I. with contrast and make sure its coded for endometriosis. This will show exactly where ur endo is. My name is freyjunet on twitter and if u scroll through my posts u will see the contrast shows a huge white nodule. This has been pushing on my bladder for yrs. But did any doctor ever order me one. Hell no! U can't rely on them to tell u what to do. I had to give up my carrer as a hairdresser to get a job with health insurance because M.R.I.s are quite expensive. This is my 4th surgery. Dont wait be proactive, as I've learned it only gets worse unless your treated by an experienced gyno that I thought I had. U don't want it to get in ur bowels. Once it's there u need an endo center or a cancer center to treat u. Some require a referal but u can get a general doctor to give u one it doesnt have to b a gyno. Call the cancer center ask if they treat endometriosis.Do research but remember just bcuz a doc has interest in treating endo doesn't mean he's qualified to treat it on the bowel or bladder. U must b knowledgeable when your talking to these doctors. Do research about your condition so they know u know what's going on with your disease. Read as much as u can on endometriosis. Google how it looks on an M.R.I. best of luck sweetheart!

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