You're welcome and I'm so sorry you're going through that infection. That's terrible! I mean, obviously with your tubes stuck to other organs it's a risk but my goodness. And yes, I understood you that the tubes were scarred on the outside. And for sure, that will affect how they function, as I'm sure you know.

I didn't realize it was tough to get excision surgery in Spain too. Nancy's Nook talks a lot about an excision surgeon in Romania, where a lot of EU citizens have to go. I'm glad you have a supportive doctor. It often feels like that's 90% of the battle, because you can't make progress unless a provider is willing to help you.

Yes, check out those links and let me know if I can help at all. I hope you recover from this infection quickly. Keep us posted, if that's OK with you.

Thank you for your detailed reply!
I have a severe infection, some of the dye they used stayed my tubes, and has become infected. I am on 3 types of antibiotics, 2 oral and 1 internal, anti inflammatories, Tramadol and Paracetamol. If the pain hasn’t eased in 3 days, I have to go back to be given the antibiotics via IV.

The scaring isn’t inside my tubes, it’s outside - glueing them in place. I actually live in Spain and it’s hard here too. I already have private insurance, so luckily get the best and newest pills etc on offer, however excision isn’t an option.
I have just changed gynos, and my new one is super sympathetic and helpful. She is always looking for something to make things better, where as my old one was just happy to keep everything the same.
When I was first diagnosed, I ended up in A&E with severe abdominal pain, they thought it was appendicitis. Turned out to be 2 10cm cysts on my left ovary. I was admitted through A&E - this was when I first met the old gyno. He told me they were indeed endometriosis cysts (Is bee trying to get a diagnosis for 8 years but kept being told there was nothing wrong, 2 doctors told me I 100% didn’t have it via an ultrasound). He told me to come back in 6 months, or if they began to hurt. I had to refuse to leave his office until he agreed to a lap, mainly to remove the cysts, as If been in increasing pain for months and then for a diagnosis. He told me there was no point, as they couldn’t do anything to treat endo via a lap. I was well researched by this point and explained there indeed was something they could do. At this point he said ‘Yes, well sometimes it can help’ When I came round from the op, he greeted me with ‘The endo was worse than WE thought’. I’d know for years it wasn’t good!
I am currently researching through the tonnes of conflicting info with regards to diet, I don’t know which one is for the best. I will take a look at your document!
Thank you so much! Just being able to talk to people is a massive deal.

I have not had that experience, but it sounds to me like the HSG really stirred things up. I'm glad you saw the gyno and that you went to A&E because it's always better to be safe than sorry. Things like ovarian torsions can be incredibly painful.

I would say since your tubes are so scarred you need to have an operation with an excision surgeon. They are the most qualified at identifying and removing endo. I know it can be difficult to get in the UK; I've heard that many EndoWarriors in the UK have to travel to other parts of the EU.

Nancy's Nook on Facebook (https://www.facebook.com/groups/NancysNookEndoEd/) is a good resource. Lots of articles and a list of excision surgeons, including those in the UK.

The gold standard of endo treatment is excision surgery. That's different than ablation, which is most commonly done. Ablation means they burn endo and leave it there. It makes more scar tissue and can increase pain and decrease fertility.

Excision surgery, on the other hand, is when a specially trained surgeon recognizes and removes all the endo. There's only a few hundred surgeons globally who do it, but it's worth it. The majority of people who have it have less pain and increased fertility.

Having a laparoscopy does NOT necessarily mean you had excision surgery. It depends on whether the surgeon who did the operation is an excision surgeon, which means they ONLY do excision. NOT a combination of excision and ablation. That does not count. Also, for me, I said "why bother having surgery just to diagnose; I want the surgeon who knows excision to just do it while I'm under anesthesia!"

Excision vs. Ablation Surgery. WARNING graphic surgical photos. https://www.endometriosisaustralia.org/post/201...

I’m 97% pain free since my two excision surgeries, so I’m a huge fan. I did have a hysterectomy (entire uterus, including cervix removed) but kept my ovaries. In my case, that was for horrible adenomyosis. I’m not saying it’s a cure, but it is the gold standard of treatment and helps the majority of EndoWarriors who have it. I also needed lots of pelvic floor physical therapy and diet changes. Many of us need multiple therapies for healing.

I’ll leave a resource list I made of stuff about endo I've found helpful over the years. Other users have said it helped too. It covers things from endo basics to excision surgery to diet and wellness. Let me know if I can do anything. Happy to help however I can.

https://www.myendometriosisteam.com/users/5d1ab...