Probable endometriosis, symptoms but no proof - I'm new here, any advice?

Hi all, in my 20s, had ongoing symptoms of: fatigue affecting everyday tasks and work, erratic heavy periods, light headedness, left sided heavy pelvic pain and tender, abdominal pain, pain on bleeding and intercourse, lower back and top of thigh pain. I have been on pill for over 5 years, cycle always been light, relatively pain free and regular until 6 months ago.

Blood tests, vaginal swabs, vaginal exam, ultrasounds - all normal

Gynae doctor reports probable endometriosis and now advised to take pill for 6 months with no break and monitor. If worsens or no changes, contraception alternatives to be tried or laparoscopy.

Anyone been in a similar situation? any advice?

11 Replies

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  • I'm in a similar situation myself.

    What pill did they tell you to try? I got told to take norethisterone for 6 months, no break and see how i go. I've had to get my gp to tell the gyne i need to be seen sooner than the 6months as my pain is getting worse and affecting my bowels and I'm struggling to walk certain distances.

    When i go back, i think the next step was the operation.

  • Thanks for replying, sorry to hear you're suffering too.

    The pill I have is Cilest (combined ethinylestradiol and norgestimate) and only just started the 6 month 'trial' and no break.

    I hope it gets sorted for you. They did mention its best to try conservatively first to manage and laparoscopy as a later resort.

  • Hi, I think the forum is a good source of information and support too. The only way I am aware of to get a diagnosis for endometriosis is to get a laproscopy. This seems to be more of a drawn out process with lack of diagnosis still going on. I hope your gynae will listen if you want to get checked out with laproscopy. 6 months does seem like a long time to try a pill for.

    On your clear test- I had many clear ultrasounds before having large sections of deep infiltrating endometriosis removed from utero sacral ligaments years ago. I have found user 'Lindle' pages of interest to learn more about endometriosis and if your in UK I believe there is relevant info for ladies there too.

    Good luck with it

  • Thank you for your reply. I thought it was a long time too and worry things will be 10x worse when I then do have a break. I suppose I will just have to monitor as it's early days and get back to gynae team if needed. Thanks for your information, hope all is well with you.

  • Bless u. I'm in the same position too. But my gynie said if the pain doesn't go away with me taking the pill for 6 months then it is not endometriosis, which then she will put it down to nerve pain. Which baffles me, how can she actually know without considering a laproscopy.

  • Hi there, thanks for your reply and sorry to here you're suffering. Hmm that's interesting, I would have thought laparoscopy would confirm as this is the only way to diagnose? how long have you tried the pill for? has it helped with pain?

  • I tried microgynon for about a week but I was feeling so sick I literally couldn't bare to take it anymore. So gynie put me on yasmin and I've been on it for just over a month. She seems to think the pill will 100% stop the pain.

  • I hope it does help with your pain and any other symptoms you may have. Be sure to keep gynae informed though if not. Positive thoughts and take care!

  • Hey hun,

    I was in microgynon for about 2 years before I got diagnosed with endometriosis. I personally think it's utter bullshit what your gynae is saying to you! Try to get a second opinion!xx

  • Really. Bless. How r u now? How can endo still affect you when your on the pill n having no periods X

  • Bless u. Did u have a lap and have it removed? X

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