Help/advice
So I’ve recently had ultrasounds and an mri, I got my results back and it says I have deep endometriosis with multiple endometrioma cysts and kissing ovaries can anyone who has been through something similar please explain this better? Also I’m worried about fertility.. does anyone know how likely that is to be affected? Has anyone whose has the same thing gone on and had a pregnancy? Any help massively appreciated 🙂
First, let me say I'm so sorry that you're going through this. I'm glad you came here to ask questions. I'll try to explain as best I can from my own experience, with the caveat that I'm not a doctor.
I also had "kissing ovaries" and endometriomas and was diagnosed with Stage 4 endo. Basically, once your ovaries have such large endometriomas, it often means that they become heavy and adhered to one another behind your uterus. Sometimes they are also adhered to your uterus. Having kissing ovaries is a sign of advanced disease. Has your doctor recommended surgery? If it were me, I would want to find an expert surgeon trained in excision surgery, which is the gold standard of care. Nancy's Nook is a good place to look for a surgeon: https://nancysnookendo.com/find-a-doctor/
I can't answer your fertility questions, because I did not want children, so I was not concerned about how pregnancy might be affected.
Once I was diagnosed with Stage 4, I had two excision surgeries. During the first, I lost my right ovary because I'd had an endometrioma rupture and the surgeon couldn't save my ovary. During the second, I agreed to have the surgeon remove my left ovary because it was my fourth surgery overall and my ovaries just kept on growing endometriomas. I didn't want to go through the pain anymore. I'm a year out from that surgery and doing much better, with very little pain. Menopause has been interesting, but manageable. You may be in a different enough situation that you'll be able to retain your ovaries and fertility. A doctor well-versed in endo will be able to help answer your questions about that.
I hope someone else will weigh in here about the fertility piece. Please feel free to ask more questions and keep us posted on how things go for you. I know how scary this can be. ~Katrina, Endometriosis.net AdvocateThankyou for your help. It’s nice to speak to someone going through the same thing, the weirdest thing is since I had my copper coil out I’ve had absolutely no pain! I get occasional hip pain and back pain but that’s it my periods are so light it’s really really weird. I wasn’t going to go to all my scans as I just thought it must of been the coil causing all the pain. Then I did and all this showed up. They did mention surgery and u do have an appointment to discuss it. I’m just worried as I don’t know much about it and untill I can speak to someone that does it’s just causing loads of anxiety 
I haven't had experience with kissing ovaries, but I do have a lot of ovary issues. I am so sorry you are dealing with this. I know how overwhelming and scary it all seems. especially when you just don't know much about it. I think like Katrina said above, the best bet would be to seek an endometriosis specialist to ask all your questions. I feel they would definitely be able to put your mind at ease a bit better and give you loads of advice on what to do next/best course of action. Also, I do know many women who have had trouble with their ovaries and advance endometriosis, etc.- and they did still get pregnant. Of course, it wasn't easy but, it did happen. I think everyones body is just so different that it is just really hard to tell you yes or no. Again, this could be something an endometriosis specialist can better examine and give you a better answer. Sorry, I know this wasn't helpful. But I did just truly want to say, we are thinking of you and sending you all the good thoughts that you do find relief, answers, and a better understanding of what's going on. You can keep on reaching out to us whenever you need. We are here for you. And do keep us posted along the way on how you are doing, too! <3 -Kimberli (team member)
Thankyou so much, it’s definitely re assuring you know people have managed to conceive. It’s now what me and my partner want yet or even for a few years we’re still only in our early twenties so we still have loads of time. But I definitely don’t want the choice taken away. I think once I’ve had an appointment with a specialist I’ll feel a lot better it’s the not knowing that’s freaking me out! absolutely understand that! The unknowns are always so scary! I have a lot of faith and hope for you and your partner though dear warrior. That when the time is right, when you are ready, it will happen. I truly think you will feel so much better speaking to a specialist too. I find them to be way more helpful than a regular doctor who may suggest certain treatments that may not be necessary! (in my personal experience at least). I haven't tried to conceive yet, but like I said, I have read so many miracle stories. Stay strong. Hugs <3 -Kimberli (team member)
