You poor thing, I'm sorry you have been suffering for so long.

The good thing here is that you've finally got a diagnosis and are on an appropriate treatment pathway. Hopefully that means the worst is over (or soon will be).

Research into endo seems to have been very lacking until recently, but it is now getting taken more seriously and there are new and more effective treatments.

I do wish you the very best. And I hope you'll always feel you can vent/seek support here rather than feel alone.

So sorry you're going through this. Sometimes they're able to shrink ovarian cysts with medication, so fingers crossed they can do that for you. But a close friend had to have surgery to get one removed that was the size of a grapefruit, and she had a wonderful surgeon who took extra time to save her ovaries. So if you do have to have surgery, I'm hoping you have a wonderful, careful and caring surgeon as well. Please do whatever you can to take care of and be good to yourself. Regardless of the treatment, getting yourself into a positive frame of mind is paramount and can be hard when you feel alone and scared. So first, let yourself cry and feel the fear. Baths are great for that (or showers if you need to muffle sound). Then, make lists of things that bring you joy or help you be calm and prioritize those things. No matter what, your well being is worth it. Best wishes.

Im sorry to hear you are going through this right now. I hope what I say here can give you some comfort. Hopefully they can reduce the cysts by either surgery or medication. I can imagine how it must hurt having so many large cysts…it is good that they finally diagnosed what is going on now though. With your ovaries being stuck together and with so many cysts, I’d be more concerned about a possible torsion. In your case, both ovaries could flip since they’re stuck together. I know you are scared right now, but if they can help you reduce your cysts via this surgery, it could prevent a possible torsion in the future, meaning less pain long term. I wish I knew more about endo myself to give more comfort, but I sadly know very little, except that the lining can overgrow again if not monitored correctly.

I pray you heal well and that it’ll be a beneficial help for you.

I had bilateral blood-filled ovarian cysts due to endometriosis, huge on one side and smaller on the other. This was before laparotomy so I had open surgery. I was 33. The cysts were removed. On the side with the huge cyst, which was wrapped all around the ovary, much of the ovary had to be removed.

I was so glad I had it done. No more massive bleeding during and between periods.

Anyone would feel scared by all that. <3 Definitely encourage you to be vulnerable with your doctor about how alone you feel in this. Ask about a support group and please go. It's hard to do but so worth it I promise.

I’m so sorry :( this sounds completely awful and painful. I don’t really have much advice but my friend had surgery relating to her endo and since then she’s felt much better - periods are relatively less painful and less debilitating/heavy - hopefully it will be the same for you.

The only advice I can offer is to take each day at a time and be kind to yourself 💚

Don’t worry too much about surgery. If you’re young and healthy you’ll be okay. I’ve had two (one was to diagnose my own endometriosis when I was 15).

I’m in kind of the same boat as you, though. I have endo and PCOS and a recent ultrasound showed that my right ovary has stuck itself to my uterus and my left ovary has a dermoid cyst. I honestly think I screwed myself over when I opted to go to a regular gynecologist instead of seeing a specialist when I aged out of the children’s hospital adolescent gynecology program. It’s taken me over a decade to realize it but this woman knows pretty much nothing about PCOS or endo. I should have just gone to the Chief of adolescent gynecology’s adult practice.

I’m sorry to hear about your scary medical situation, but you’re going to woman up and take care of it like the fiercesome woman you are!