Finally…

[Purplehaze01]

Finally got an appointment at gynae for my ongoing battle with endo. Ongoing pain, bleeding after sex, headaches and heavy pain all the way through every month. Three laps and coil not working anymore. Any advice on further treatments would be great. Could I ask for an MRI to diagnose where the endo is instead of lap to start with? Bearing in mind my last lap came back with no endo just constipation!! The surgeon who did this procedure was very rude shouting out to the rest of the ward my results!!

[coldwaterlove]

Hey,

So sorry that you are going through this, I had suspected endo for reaching 10 years before finally any action was taken so I understand how disheartening and frustrating it can be. Are you saying you have had 3 laparoscopy’s without any endo found or removed? Or that they removed it but you are still getting symptoms/pain??

I had a pre laparoscopy MRI scan that did detect some endo but not in the area they were expecting. I had my lap last week and it turned out to be not as bad as anticipated as nowhere near my bowls. This was done in a private hospital with an endo specialist gynaecologist so it does show how an MRI isn’t always totally accurate (in my case for the better!).

It sounds like your experiences have been really bad, I can’t believe how unprofessional the surgeon would be. I would complain about that personally… you’ve been through enough!! xx

[Purplehaze01 in reply to coldwaterlove]

thank you for your reply. The first 2 laps endo was found and removed it was the third when he said he couldn’t see any but tbh after when I looked into the surgeon he was not a specialist. It’s so disheartening when I have to explain to the pharmacy every time I order painkillers that it’s not just when I am on a period the pain appears, it’s all the time. I am just sick of fighting for the right treatment x

[coldwaterlove in reply to Purplehaze01]

I’m sorry to hear that, I can totally understand how disheartening that would be 😞

Have you tried any of the (very boring) lifestyle and diet changes recommended for endo? In the months leading up to my op I have been really strict and I have actually noticed a drastic improvement (before my endo was removed). I already did a lot of the things anyway (vegan diet, don’t drink or smoke) but I added in going gluten free along with doing loads of research into supplements that have been proven to help reduce pain. High strength tumeric capsuals, daily cbd oil and litres of home made ginger and tumeric tea! Reducing refined sugar. It’s not a total cure but I was surprised how much impact some of these things can have, it is trial and error though and different for everyone but some of it might be worth a try in the meantime. I really hope you can see a specialist soon and get some answers xx