Need advice please think I've been misdiagnosed!

Hi people, so basically I have been diagnosed with functional abdominal pain syndrome. I've had horrible pain for well over 3 years now and I get really bad period pains, heavy bleeding and pain during and after sex. Its gotten so bad that I'm actually afraid of having sex. And so anyway they diagnosed me with FAPS but I believe it might be endometriosis can I request that they do a lap? Genuinely don't know what to do. Any advice would be much appreciated. Thank you

10 Replies

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  • Hi Jimjam989

    Below is information on getting a diagnosis , visiting your doctor and also it might be worth filling in the pain diary as this assists doctors in being able to diagnose what's going on.

    endometriosis-uk.org/sites/...

    endometriosis-uk.org/sites/...

    endometriosis-uk.org/visiti...

    If you need someone to talk it through with we have a team of people on our helpline who would be happy to have a chat.

    endometriosis-uk.org/helpline

    Louise

    Endometriosis UK

  • Hi, so sorry for your pain and suffering. I would suggest you ask for a transvaginal ultrasound. This way they can see what, if anything is going on with your ovaries for a start. Also whether your womb is enlarged or not. So many ladies believe that they need to have a lap straight away. A lap is the ultimate and concrete way to confirm diagnosis, but symptoms and then visible signs and evidence, in the form of ultrasounds can be the precursor to the actual diagnosis. If you suffer with extreme pain after inter course and it's causing you distress you could always visit your local family planning clinic, which I believe is now called Sexual Well Being Clinic, these are walk in centres and you could say you are concerned about pain upon inter course and would appreciate someone taking a look.

    Good luck and keep us posted.

    Love and hugs

    Joanne xx💖❤ 👍🏻

  • Hi Joanne I've had ultrasound and internals done, they just completely decided it wasn't endometriosis. But my symptoms fit a lot better than what I've been diagnosed with. It just doesn't make much sense to me.

    Thank you for your reply.

    Jamie

  • Hi,

    I've had a similar experience to you. Ever since the age of 13 I've had heavy and extremely painful periods, with irregular bleeding and cysts on my ovaries. I have PCOS and they performed a laparoscopy about 3 years ago, where they found an enormous amount of adhesions on my abdomen but said they was no endometriosis and my problems should go away now. However 3 years on I experience pain in some form every day, I have problems with my ovaries, bladder and bowel as well as migraines and shoulder pain. I have finally been referred back to gynaecologists after numerous doctors appointments and scans. I am certain I have endo as my symptoms are so like those. All I can say is don't give up, trust your instincts and be forceful wth the doctors (they may be the professionals, but you know your body)

    Hope you get somewhere x

  • Hi

    Sorry you’re going through this.

    Just thought I’d add that in my experience ultra sounds are of very little use.

    An MRI will give a much better picture and a diagnostic lap (if done by an endometriosis specialist) would be very helpful too. Don’t let them fob you off.

  • I've booked an appointment with my doctor and I'm going to ask that review it properly. My pain has gotten much worse in the last week since having my implant out and its just getting so bad.

    I'm having to take tablets and then try to sleep. That is the only way I can cope with it. I'm a law student and I can't really attend any lectures because it cripples me and its just ruining my life. I really want answers.

    Thank you for your reply, will hopefully get somewhere soon.

  • You may think that if you become ill you just go the doctor and they give you a drug to take away the illness

    What if your Endometriosis is caused by things that you eat, or don't eat ?

    Here are some questions to ask your doctors about Endometriosis

    * What causes it ?

    * How will looking at it and scraping it help me get better ?

    * Could my illness be caused by things that I eat, or don't eat ?

    * What can I change about my diet and lifestyle to help my body repair itself ?

    These are easy questions to ask, but very difficult for doctors to answer as they know very little about Nutrition.

    It may be worth asking them to refer you to a Dietitian or a Nutritional Therapist, as they specialise in Nutrition.

    If your doctor won't do this, try a search for BANT at bant.org.uk/bant/jsp/practi... and interview 10 local Nutritional Therapists who have had success advising about Endometriosis before choosing which one to work with

    Here are 3 well-proven natural ways to reduce the Inflammation that causes the pain of Endometriosis

    * Increase your Vitamin D

    * Increase your Omega-3

    * Reduce your Omega-6

    Here are some relevant references that may be useful to you:

    vitamindwiki.com/Endometrio...

    authoritynutrition.com/opti...

    chriskresser.com/how-much-o...

    greenvits.eu/blogs/news/900...

    expertomega3.com/omega-3-st...

    Some people have reported that eating specific foods like meat or dairy gives them an instant flare-up

    Which foods make your Endometriosis worse and which help ?

    .

  • Thank you for your reply, it is definitely something to look into. I'm not sure which foods if any aggravate it but it is something I will monitor.

    Thanks

  • Hi I have had every test done possible, I've had ultrasounds, CT scan, mri, x rays, and 2 laparoscopy's. It was only my recent laparoscopy 2 weeks ago that found I had endometriosis, all the other tests over the past two years have been completely clear! I've also had all the bowel tests including a colonoscopy and finally now have a diagnosis of endo, don't give up if you believe you have it as it has taken a lot of people telling me there's nothing wrong to finally find out!

  • Wow! Becky that's awful :/ I hope they can give you something to help with the pain. They are honestly awful. My first doctor told me to have more sex, that was his answer. One told me it was because of my weight and another told me it was psychological. They've got no idea whatsoever.

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