Concerned, curious and dismissive doctors

[bryfents]

So I've not been diagnosed with endometriosis but my auntie suffers with it and recognises some symptoms in me so have joined this site for my own research as I'm finding doctors completely dismissive. After several appointments and some tests on what believed to be bowel-related issues I flagged up endometriosis based on the concerns my auntie flagged in me. The doctor said "well most women associate that pain with their periods...and you haven't mentioned your periods" - to which I replied "well i don't have periods, as I have the contraceptive implant so would I not be experiencing these pains at different times?"

She then failed to answer any questions I had so was wondering if anyone could help me:

Is it possible to suffer with this despite not having periods?

I'm experiencing and have for a while terrible stomach pains and bloating and muscular and joint pain. And subsequently anxiety and just generally feeling hacked off with my body.

I'm 20 years old and have been suffering with these symptoms for a while and am getting increasingly frustrated that no GPs are interested in discussing my concerns with me.

Any information would be really appreciated.

Thank you, ladies

[curlyjo]

Hi bifrents, well done for posting and challenging your doctor. It's a difficult disease to diagnose but the pain has to come from somewhere. The only conclusive proof is surgery and until then they are guessing. If you have Endo in your muscle layer of your womb it's even harder to spot but a trained surgeon can. It's then called adenomyosis. To answer your question, yes, they can shut down your periods and still you can be in pain. The Endo can spread and the pain be fed by hormones in our diet despite being on hormone pills etc. It was in my case. The pain for many of us is persistent. You will need to have a laparoscopy to first remove any existing Endo, then see how that goes. If it removes the pain then no further action is required but if it doesn't they may suggest GnRH drugs or further surgery. In my case I'm still in some pain post surgery but have decided to try the dietary route. Many women on here have chosen the anti inflammatory diet so that any remaining Endo (I have adenomyosis so it's harder to deal with) stays dormant. Endo are patches of scar tissue that are activated by hormones in our body. Diet can have a huge effect on pain in many women suffering from this disease. So that's something to think about down the line; for now you need to find a dr who will refer you to gynaecology for tests. Good luck and I hope you have a good Christmas despite this. You will get answers eventually

[bryfents in reply to curlyjo]

This was so insightful, thank you. What diet are you following? Is there a specific site or book you can recommend?

[curlyjo in reply to bryfents]

Hi bryfents, I'm so sorry I didn't see that you had replied. Normally they come through to my e mail address. I'm seeing a dietician in London called Henrietta Norton and she has written a book called "Take Control of Your Endometriosis" which explains the diet and has loads of recipes in it too. She works at the clinic in London called Grace Clinic, Belgravia. I've been on the anti-inflammatory diet for only 4 months and my pain has halved already. I'm really pleased and hopeful it will completely rid me of my pain. I hope you're doing well and sorry again for this very late reply.

[givemeananswer]

hi bryfents, yes it appears it's the same all over the world. I'm in Canada and the doctors here are very dismissive about this here too.

I agree with curlyjo, you have to be your own advocate, so what you have started doing is great. Research and take all matters into your own hands that you can possibly control. If one doctor gives you an uncaring vibe move on and find one who doesn't.

My daughter, undiagnosed, believes she has a gastrointestinal isssue, she cut out gluten and it gave her her life back. With me it's been a long journey and my pain has returned despite a hysterectomy 11 years ago. Still to determine if the cause of the pain is endo again, I'm to have another lap in March. But the pain is the same as it was in the past. This will be my fifth surgery for this horrible disease. I wish I had known sooner about this endo diet. I am now reading about the inflammatory properties in nightshade vegetables and wonder if I should eliminate those too. I hate complaining but I think a lot of the doctors think it's all in our heads and we are just whiners by nature. Keep up the fight you are not alone.

[bryfents]

Oh goodness - it's just so daunting to think that it could never leave/get better. I really feel for you ladies who have suffered for so long.

I have actually followed a gluten-free diet for most of my life as I've always found it problematic - even from a very young age - so that's interesting that you mentioned that. I also try and limit my dairy intake too as I find that flares me up sometimes too, which like gluten has always been the case for me.

I have left so many doctors crying lately because all they seem to do is look at my record and reiterate the last doctor's notes. So frustrating. I'm going to make an appointment and quite forcefully request a gynecologist.