How to deal with the pain as it gets worse over the years?

[Ssgrlp28]

Hello, I recently found out I’m stage one endometriosis. For the last 3 years I’ve had the worst pains that just get worse over the years. Been too two many doctors and specialists in the past that said I just had cyst, which I do I have several on both ovaries and on top of that they told me to have a baby and maybe the pain would go away. I was 17. I’m now 20 and trying to learn about my diagnosis, the pains I have include headaches , intense sharp stomach and back pains, heat flashes , almost black outs from the pain , vomiting, soreness on my thighs legs , always feeling a numbness sensation through my body. All these doctors says it’s all in my head until one doctors cared , he put time and determination into figuring out why I was in so much pain, he found out I have endometriosis through a camera in my bellybutton. If you have any tips , vitamins I should take to help , recommend diets.

[Aurora20]

Hi, has he suggested you have the op to clean it out?

[Ssgrlp28 in reply to Aurora20]

Hi, No they haven’t what is an op?

[Aurora20 in reply to Ssgrlp28]

I have sent this link it explains what it is - endometriosis-uk.org/your-l... Basically they will clean out all the endo for you, it can come back mine came back after 6 months but now I am on the pill which helps. Have a read of this and hopefully it will give you some answers but I would definitely discuss it with your gyno!

[Ssgrlp28 in reply to Aurora20]

Thank you will look into this

[PurpleSynesthesia]

Good morning,

What awful treatment you've had - I wish they d stop telling people to get pregnant. Sure it might surpress symptoms for while, or not, but it's not a cure by any means - a lot of us on this forum are also mothers.

I agree with the previous reply. You definitely need to have surgery via laparoscopy, with excision removal of the endometriosis, not laser ablation.It would be helpful for them to insert a mirena coil at that appointment to slow down or even prevent regrowth of the endometriosis tissue. But this should be discussed with you.

You need to be treated by a specialist because you actually have a diagnosis and they will have a whole team there to treat all affected areas like bladder, bowel, kidneys etc.

If you're in the UK, use this link to find a specialist near you, show it to your GP and ask for a referral (they cannot refuse, it is your right as a patient).

bsge.org.uk/centre/

Do lots of research, arm yourself, because most people, including medical professionals, are clueless about endo or have false information.

All the best, keep us posted xx

[Ssgrlp28]

Thank you so much for your help and input , you would think a doctor would explain this stuff to me. I’m not in the uk sadly I’m in the us and can’t find maybe doctors who actually care to help

[PurpleSynesthesia in reply to Ssgrlp28]

Could you research specialists in your area? Or even find someone who's not local & travel, or ask for their professional opinion to find someone closer to you? Xx

[Ssgrlp28 in reply to PurpleSynesthesia]

I will definitely look into a specialist, just need someone who can help as possible !