Similar pain here

[Littlebug77]

I’m not sure if I truly have endo anymore I’ve not encountered anyone with similar pain regions as me and I think I’m just making it all up in my head. Recently it’s been more localised at my diaphragm area under near the breast back pelvic and legs and I’m not sure if it’s just stress but it leaves me in bed. Anyones pain follow a similar pattern.

[Tillyfloss]

Hi. Have you been diagnosed with endometriosis or still after answers? I would add hip pain to that as well and it was a constant pain getting worse twice a month. It turned out to be a full frozen pelvis and the pain radiating through me. I also thought I was imagining it/ must have a very low pain threshold until I finally got answers. Do you have medication to take? Xx

[Littlebug77 in reply to Tillyfloss]

Yes I have suspected endometriosis I’m in diplofenac and cocodamol it’s always worse during my cycle but I got the mirena on Jan and the pain has improved but I’m scared it’s really all in my head

[Tillyfloss in reply to Littlebug77]

I was made to feel like it was all in my head, I was seeing gps etc from about 15 and I wasn’t diagnosed until I was 33 and I was constantly told I just had low pain threshold and it was normal until the bsge specialist took a look and said he couldn’t imagine the pain I must have been with my insides like that ( he successfully operated and helped me). My gut instinct was something was wrong and I just kept going back till they finally found it. Have you tried the endo diet? Xx

[Littlebug77 in reply to Tillyfloss]

Yeah I’ve gained a lot of weight due stress and medications and have been trying hard so I can get my op my life is debilitating can’t do anything rn period week feel horrible thank you sm for the reply and advice I appreciate it so muhc

[Kalimaa in reply to Tillyfloss]

What is the Endo diet please?

[Tillyfloss in reply to Kalimaa]

Hi. Hope you are doing ok today.

The endo diet really helped me, it’s eating an anti inflammatory diet, I used a book called something like the enso diet nutritional healing for fertility, it’s science based but I found it really good and it helped me understand why it would help to make the changes and after following it strictly for 6/8 weeks I was feeling much better and then introduced things one a as time so for me I’m fine with caffeine, dairy and alcohol but I can’t even have gluten free pasta it set me off, I have to be really careful with bread, I avoid bought cake and various other things. It does take time but it’s really helped and my flare ups have reduced as I’m much more aware of what I eat . Tx

[nikkimatt2019]

I get all this, I've been diagnosed with 2 double lining endometriosis due for op at some point in so much pain constantly

[Littlebug77 in reply to nikkimatt2019]

Thanks I just feel like it’s all in my head anything helped to make it better

[Avourneen]

Mia thousands of women have pain in these areas. IF the endo grows along your sciatic nerve and your utescaral ligaments it will really give you terrible pain in your back and legs. If ithas grown into your diaphragm it will hurt your ribs and flanks. I have much the same problem. It's definitely not in your head. If your GP says it is see adifferent GP. It is horrible to be gas lighted like this, I think a lot of GPs have read a book by someone called Sarno which is really outdated and scientifically debunked which suggest all back pain is caused by psychological trauma (clearly a ridiculous concept). Someo f them believe this or just don't believe women. Look for a gynae who specialises in endo and get a referrel from a different GP I would go privately as it will be quicker. You deserve to be seen by a proper doctor who knows what they are doing.Do nt deal with any doctor who just fobbs off your concerns or tries to make you feel this is in your head. You are suffering horrible pain and you have every right to be treated properly and taken seriously. You need to stand up for yourself and fight in this situation. Don't let anyone put you down and minimise your pain. Diet will make very little difference you need an MRI and probably an operation. AS the lady below I had frozen pelvis and if you can get surgery it will help.

[Littlebug77 in reply to Avourneen]

I’ve seen various gynos that help with the pain management side they all said it’s 100% my consultant for my operation doesn’t believe it is argh, thank you sm for your reply i really appreciate the time and effort thank you

[Brambledoggy]

I’ve had endo for over 35 years, and had pain in all those areas. Sometimes the pain in my lower back is dragging and dreadful and I get very strange pain in my flank, where I rest my hands on my hips. Especially right hand side where a lot of my endo lesions were. Also down my legs, front and back. Tingling down front of legs etc, sometimes buttocks. You’re not alone. And it’s NOT all in your head. Nina.

[Littlebug77 in reply to Brambledoggy]

Thank you for the reply I really appreciate it

[Dogmad6]

I also get pain in all those areas and have done for many years. I was diagnosed with endometriosis and have had multiple surgeries. It's not all in your head.

Good luck with getting answers. Try to do research online and find someone who specialises in endometriosis and ask for a referral, preferably private if you can afford it. xx

[Littlebug77 in reply to Dogmad6]

I’ve just gained lots of weight due to stress and ongoing issues so I’m trying to get it down so i can have my surgery safely thank you for your reply I really do appreciate it

[claudia_91 Moderator Endometriosis UK]

Hi Littlebug77

As the other amazing members of our community have said, it's not normal to feel pain in these areas and it's very likely that your pain is from endo. It's not in your head, please speak to your GP again if you are suffering. There is fantastic information on Endometriosis UK's website which provides advice on how to approach an appointment with your doctor, including a pain and symptom diary that you can fill out and take with you to your appointment. You can access this here: endometriosis-uk.org/visiti...

I hope you find this useful and that you find some relief soon from the pain. We all understand what you're going through.

Take care,

Claudia