How do you ask if you a doctor have endometriosis

Hi there

I am 20. So I have been having severe and intense lower pelvic pain and lower right sided pain for over 2.5 years. It's like a stabbing/ tearing/ ripping/ twisting/ cramping pain which is generally constant and intensifies at time. I am in pain every day, and have to take paracetamol and ibuprofen regularly which has generally no effect so I try not to take it. I am often doubled over in pain and have had to leave lectures and work to go to the bathroom and double over to try and ease and massage the pain away.

In total I have had 10 GP appointments with different doctors as doctors left my practice, one appointment at gynecology and one appointment at general surgery both in 2014, who both discharged me saying that at most it was adhesions. I've had 2 ultrasounds and blood work which came back normal.

Since December I have been back to the GP twice and have seen the same doctor each time, now that I feel comfortable with him. He seems to care about how I feel and wants to know what is wrong too as he is stuck with what it could be. He thinks it is adhesions and has been treating me with IBS medication with no effect but I believe it is endometriosis as I fit most of the symptoms: pelvic pain, period pain, upper leg pain, low mood, irregular and heavy periods.

I have an appointment with my GP tomorrow as the medication I am currently on is running out and is having no effect, and to discuss what to do next.

I have mentioned endometriosis in the past to other doctors but they always seemed to brush over the issue. How can I get him to believe that it could be endometriosis?

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  • You doctor would have to be able to give you a reason as to why he thinks you have adhesions as they don't just come out of nowhere. They are the body's response to inflammation or injury as it tries to heal. So if he thinks you have these he has to also think you have something inside causing them and if you have never had any previous surgery then endo has to be suspected, especially with your other symptoms. Endo is often misdiagnosed as IBS but is actually a symptom of endo.

    I suggest you put the ball back in his court and write a letter detailing all your symptoms and saying that you believe these may be caused by endo and want to be investigated for suspected endo. Take it to him and tell him you have sought advice from this support group that is recommended by the NHS. Ask for the letter to be recorded on your record and if he doesn't think it could be endo ask him to record why.

    There is a protocol for suspected endo and the usual course would be to put you on the pill for 3 - 6 months prior to a diagnostic laparoscopy. These may actually give you some relief so it is worth trying but be aware that if taken long term they can mask progression of endo so it is always advisable to get diagnosed sooner rather than later to be sure what you are dealing with. Also be aware that many gynaecologists suggest what we refer to as the menopause injections which can give severe adverse side effects and at your age must not be given. They can affect bone density as they deplete your body of oestrogen and you won't have reached your maximum density yet. The guidelines are not to give them before age 23 but these medications have no long term benefit so I should avoid them and push for a lap after trying contraceptives.

    cks.nice.org.uk/endometrios...

  • They think it is adhesions as I previously had lapascoptic surgery to remove my appendix.

    I was put on the pill at the suggestion of gyni, which had no effect and I have been on it previously before this pain started for pelvic pain which also had no effect.

  • They still can't just assume it's adhesions. Adhesions form quickly after surgery so if your lap was some time ago they won't suddenly appear from that. And contraceptives aren't always effective as it depends on the severity of the endo. I should follow through with the letter as suggested as you need a lap. It's unfortunate that you are in Scotland as you don't have the choice as we do in England to choose a consultant but you do have a right to a second opinion.

  • Thank you for your help. Yeah the surgery was over 5 years ago. I am hoping that he might re refer me to gyni for a second opinion. I am going to mention that i think it is endo tomorrow, to see what he thinks.

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