Help!

[blackcatgirl89]

This is the letter I received after my MRI scan and I can’t really make sense of the medical jargon. I’m really nervous about having a laparoscopy and questioning whether it’s even worth putting myself through if they don’t find anything. Please could people give me some advice on what this letter might mean and if it’s likely I have endometriosis?

[Tangoandmax]

I believe the decision to have a laparoscopy should be based on on your level of symptoms and how much they’re effecting your day to day life. I had no choice due to severity of daily pain and basically being left with no standard of living. It really does depend on what how you’re feeling with symptoms. The MRI are usually better at picking up endo (when reviewed by the right people). I was provisionally diagnosed using an MRI, and have since had a lap which confirmed findings.

Has the MRI been done/reviewed by a general gyne consultant or specialist? Either way, if you have organ involvement I would request referral to a endometriosis BSGE centre rather than having surgery with a general gynaecologist, of course if you’re not already with one.

You can absolutely not decide to have the lap, but it’s best you’re on the waitlist whilst you decide given the horrendous waiting time.

[Sunset-lady]

The bands they refer to will possibly be scar lesions from endometriosis. I wish they would be clearer when they write these. You have no endometrioma cysts which is good. It depends on your level of pain and quality of life. Back in the 90s nobody ever offered surgery so we pushed forward and now, at 52, I have stage 4 endometriosis and endometrioma and need a complex hysterectomy. It's a disease that doesn't go away and you need to decide whether to have surgery to loosen it all now but cause more scarring or leave it and try to use diet, exercise, supplements and lifestyle choices to try to manage the symptoms. I might be go for surgery then try everything to try to keep on top of it after that. Most of my damage was done in my 20s and 30s according to my consultant with no "new" endo. You can (at least some people can) work to manage this disease. There are some good books out there to support you. Good luck x

[Washington1]

In this instance I would call the hospital and ask to speak to a gynae nurse, asking them to explain the jargon to you. If there is an endometriosis nurse in your area, even better. Then the other advice is good here, helping you decide whether to go ahead or not.

[scooby24]

Endometriosis UK and Endometriosis Foundation both offer a free service where you can speak to a specialist endometriosis nurse. They might be able to help you understand the jargon and talk through your concerns about laparoscopy.