hello i'm new here


This is my first post. I have had painful period pains since I was 11. Episodes includes feeling nauseated, stabbing like pain in my abdomen that extends to my hips. I have been to the GP several times but not taken seriously. Infact I was not aware of endometriosis until a few months ago.

I hope to share my experiences, get support from here



5 Replies

  • Hi Trilobite and welcome! I find that this is a very supportive and inclusive community and hope you'll feel the same way. People here are from all over but are as supportive as any group of people I know in person; I'm actually in the United States (San Diego, CA) and haven't had the luck of finding a physical support group but am happy to see the quick responses to blogs and questions posted.

    You mentioned that you were recently diagnosed. Did they remove the endometriosis during a laproscopy? I have had two surgeries done; both times I had a few months of relief, followed by the return of the disease. I was recently told my a new doctor, though, that these surgeries should be followed by what is here called Lupron or a similar kind of medication (largely those that temporarily send you into menopause) to prevent the quick return of the disease. I really wish I had known this as it may have made the surgeries significantly more useful beyond the initial diagnosis. It's also helpful to be on continuous birth control; though this did not prevent my endo from returning and growing or from being painful, I found--when I stopped taking it while trying to conceive--that it is better than having horrible periods each month (especially if the pain is limited to periods).

    Anyway, I'm sure others will ask you for more details too. Obviously we respect your choice to share as much or as little information about your condition with us, but the more we know, the more we can share similar stories, tips, and generally empathize with you. I hope your pain isn't too bad at the moment and look forward to hearing more from you in the future.



  • Hey honey I'm not quite sure if you have received a diagnosis or not from your post, but regardless, welcome!

    If you haven't had a diagnosis yet try writing all your details down (symptoms, dates etc) and book another appointment. The standard procedure should be swabs, smear, ultrasound, and blood tests. If all that comes back clear they need to refer you on.

    If you have had a diagnosis have you got an "action plan"?

    Welcome and good luck x

  • Hi there and welcome aboard the ship of all us endo sufferers. I've had endo for 14 years but I've only recently found this site....every one on here is great, full of useful advise and always there for you. Wishing you luck x

  • Hi there!

    I too have only been diagnosed this year but I think my symptoms had been masked as i had been on the pill for 10 years. At first they thought I just had an ovarian cyst but during a laporoscopy they found more endo. Despite being on prostap for 7 months, Im now waiting for an urgent laporotomy because i have another huge cyst (14cm!!). This site is amazing becuae it helps you realise youre not alone and that all sorts of symptoms which youve probably been having for years, are all part of the endo. Just coming on here and reading people's stories helps you realise youre not going crazy.

    Lots of love and luck,


  • Yes I agree with leanne1982 it does help to m ow others have experienced what u are going through. I was diagnosed in feb this year. Been having problems for years but the last year has been debilitating and just gone back to work today after 6 months off, although only part time. Ihave been prescribed zoladex and Livial, I'm 50, and due to see gynae again in June. Pain still bad although my last period was just a 'show' but I feel better in myself, not so lifeless and exhausted as I was. I'm not sure if the pain should have subsided but I spoke to someone at work today who had endo and a hysterectomy ten years ago and just talking to someone who explained her symptoms and how awful it was made me feel so much better and that no it wasn't just a case of pulling myself together. I came straight on this site when I got home to impart my 'wisdom' and to be further encouraged. Sometimes we just need to talk, maybe someone can't make it all better but understanding goes a long way. Good luck to us all x

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