Still no diagnosis :(

Hey ladies

I'm at my wits end here struggling with this everyday. I've always had painful periods since I started at 11, they got progressively worse as the years went on. Over the past year I've been experiencing pain during intercourse, reoccurring infections, constant nausea, excruciating periods, stabbing pain in pelvic area, back pain, leg pain, and headaches. Over the past month slowly I've become extremely tired everyday, pain spread to bowel area and bladder which is making me pee every hour!! Visited A&E last week because of the pain, doctors were useless and treated me like I was wasting their time. They did a urine test and showed no infections in kidneys or anywhere else I was getting pain. Basically told me to go home and put up with it. Been fobbed off by doctors and told by at least 5 that it most likely endometriosis but they don't want to do a lap because I'm too slim which adds more risk. I had a transvaginal and ultrasound and both showed my right ovary was fine but my left was hidden and seeing as that's the side I was getting pain it made no sense they didn't want to pursue it any further. I have been off work for nearly a week now and risk losing my job if I don't have any medical proof of anything wrong. I have another docs appointment in a couple of days, but I'm starting to give up any hope of being taken seriously. The pain is awful and every other symptom is agony. This is no life for a 20 year old. I cant live like this any more.

11 Replies

  • Sorry to read about your struggle. I think we've all been there, going forward and backward with doctors. Go back to your GP and insist to be referred to an Endometriosis centre as they suspect it can be that.

    I am thin as well and I had a laparoscopic surgery without any problem. I think they are just trying to find an excuse. Don't put up with it.

    Please let us know what your doctor says at your next appointment.

  • I will let you know, hopefully it'll get sorted soon and at least I'll know what the problem is then.

  • You should be pushing for a lap if scan couldn't visualise your ovary especially that is the side u have pain, it's suggest it's being held down possibly with adhesions

  • I have been, unfortunately even Gyno specialists have shown no interest in helping. My GP I am seeing on Tuesday though is usually very understanding and pushes for things.

  • Most medical professionals dont know or understand endometriosis. Push for a referral to the endo centre. Its not right to have all these sypmtoms. I've got a brilliant GP who is understanding and willing to help. He's the only one I go to see in the practice.

    Hope you get sorted out quickly x

  • Hello,

    I've just had my date through for a diagnostic lap after months and months of perseverance. The way that I finally got to this stage was to go through sexual health - I went there to change my pill after the GPs got fed up with me. I would keep a diary of your pain, symptoms and the type of pain. For most Dr's just saying you have 'period pain' doesn't cut it, despite it being unlike any other pain any of us can describe! I kept going back to sexual health and they referred me to gyne. The other thing that helped me was taking my mum with me. I was much more confident to say all the things that were wrong and to push for a diagnostic lap with her to back me. I think you get to a stage where you start thinking it's all in your head!

    Just don't back down.

    Good luck x

  • Hi - you have all the symptoms of endometriosis. It is an autoimmune disease so as well as pelvic symptoms you are describing typical immune system symptoms such as recurring infections. Allergies and chemical hypersensitivity are common so you or other family members may have such symptoms along with other autoimmune diseases perhaps.

    We now have procedures to get you to proper care and you must get a referral to an endo specialist. Please can you click on my name and read my post on Pouch of Douglas endo and the one on how to find a specialist. Where are you in the UK?

  • Your post was very interesting and had a lot of points I will bring up with my GP today, thanks. I'm in Nuneaton in the UK.

  • Hi - as you are in England you have access to NHS Choices so can see anyone you wish anywhere in the country for any condition under consideration and Good Medical Practice confirms you have a right to see a specialist. Tell you GP that it is well recognised now that when adolescents are left to struggle on with abnormally painful periods for years they most usually present in their 20s with Pouch of Douglas endo that has spread from the ovary, of which you have all the symptoms. If you have time before you go I should print off my post on POD endo and the BSGE list of specialists. x

  • I have had a look for specialists and there is a centre not too far from me. But seeing as Docs aren't taking it seriously would I be able to make an appointment at a specialist centre without a referral from a doctor do you think?


  • Hi - I will get back later as there are ways we can make your GP give you a referral as they have suspected that you have endo. The NHS has clear protocol to be followed for both suspected and confirmed endo. You would need a referral on the NHS but how some get round it is to pay for a private consultation then transfer with that consultant to NHS treatment. x

You may also like...