Recent Diagnosis - need help!

[bagelgal]

Hello all,

This is my first time writing on here - i am facing a real lack of support and dismissal from healthcare professionals, so was hoping reaching out to people who are familiar with this condition will help.

I was diagnosed with superficial endometriosis back in August this year after a laparoscopy. My surgeon said he was not willing to remove any of the lesions found as it would only superficial and so could make matters worse in the long run. I was sceptical about this but eventually agreed as apparently it can trigger nerve endings?? My only treatment option offered to me was the mirena coil, which i had fitted during surgery. Since then I have bled everyday, i get really painful cramps and ab pain very randomly. I have painful bowel movements and back pain everyday and i am so tired all of the time! I thought it was a number of other conditions (IBD etc) but these have recently been ruled out.

I guess my questions are, where do I go from here? are these symptoms others have experienced? are there other treatment options i can explore and if so who do I speak to?

As i said I feel as though i have been very dismissed by healthcare professionals and i feel very lost and hopeless, any support or advice would be appreciated more than you could imagine

Thank you

Molly

[Chel91]

It is my understanding that in most cases all endometriosis is best to be removed completely through excision if possible. Just leaving it because it is "superficial" is total gaslighting, as even "superficial" or thin layers of endo can cause significant pain, fertility issues and also perhaps could lead to it spreading or getting deeper later on. I would go to your GP with your findings and ask to be referred to a specialist Endo center for the removal of the endo. You can also ask for the coil to be removed in the meantime if you feel this would help. Alternatively, you can also find a dual private and NHS surgeon to pay for just a consult with, and they can write you a letter for referral to get the endo removed if your GP isn't helping. Thirdly, you can also seek private surgery, but this will of course be costly. I had my surgery 2-3 years ago, and now I'm totally pain free. Zero period pain. I refused the coil. All the best x

[Racheyt]

Sorry you’re going through this. I have all those symptoms and a very similar experience in terms of superficial endo. Constant periods, painful bowel movement, back pain, fatigue and more. I had endo excision and removal of adhesions during surgery plus the marina coil fitted. The coil can take 6 months to settle so maybe give it time but I would suggest asking for the endo to be removed. And for it to be excision not ablation. You have every right to request this, you just need to find a surgeon willing.

In the meantime I have found a book called Heal Endo (you can get it on Amazon) very helpful in explaining that endo is a fully body inflammation disease. It explains how you can use an anti inflammatory diet and lifestyle to manage symptoms.

Keep asking for help as living with superficial endometriosis is awful!!!!