Endo seen on ultrasound - does this mean it's severe?

[kittiwakes]

Hello. My husband and I tried to conceive for 3 months and I felt like something wasn't right. I'm 34 years old and have mostly brown blood and clots during my period and generalized cramping that lasts longer than it should. So I went to my Gyno and she sent me for a transvaginal ultrasound. Earlier today she left a voicemail telling me it showed signs of endometriosis and that she is referring me to a specialist.

I'm absolutely devastated and terrified. I've read what endo does to fertility and since I'm 34 I'm extremely worried and haven't been able to stop crying. My husband is trying to calm me down but I'm thinking since she was able to see it on the ultrasound it must be really bad. I've read it normally isn't seen on ultrasounds. Am I right to believe it must be stage 3/4 in order for it to show up on an ultrasound?

I called the doctor's office back and wasn't able to stop from crying on the phone so they said they would have a nurse call me to speak with me but they never called. My appt with the specialist is in two weeks and I don't know how I'm going to make it. I keep thinking I'll never have a child and I can't stop crying. Please give me any advice you have to help get me through this. Thank you!

[ticked]

I as you went through the same ordeal. Pain started at 13 with my first period and by 15 I was diagnosed with IBS which I refused to believe. By 17 Fibromyalgia, Aura/cluster migraines, by 25 Complicated migraines and finally after child birth 4 yrs later an 10 cm Endometrioma grew which is the only reason why I have a diagnoses. I went to 40+ doctors and specialist who made me feel like I was a hypochondriac I was completely let down by everyone.

In the end it was not IBS but a rectovaginal cyst that was missed for 12yrs!!!!!

I went to an Endo specialist once the Endometrioma was found and within 2 seconds and a rectal exam he found it. You have no idea the amount of stress and pain was lifted off my shoulders. I knew I had stage IV I didn't even have to ask.

Please if you do anything find an Endo specialist to do this surgery. I will help you. You really should not have this done by anyone who isnt the best of the best or you will regret it later. There are only a handful of surgeons around the world and I am crossing my fingers you are close to one.

I sent you a message please message me your location so I can find you a good surgeon

[kittiwakes]

Thank you so much! Koko, I'm encouraged by your aunt's age and ability to go on to have another child. And thank you so much Ticked for your remarks that the doctor/ultrasound technician must be good. I've had these same symptoms for many years and this isn't my first ultrasound, but it was the first one where they told me the cysts they saw were due to endo and not "normal" cysts. I've also been told I had IBS but that appears now to be misdiagnosed. I'm having deep feelings of betrayal and mistrust toward the medical profession for their ineptitude and the fact that my fertility may be compromised.

I called to try and bump up my appt and finally a nurse called me back and went over the ultrasound report. I have endometriomas in both ovaries. The biggest is 3x3x3cm. The nurse said the next step is laparoscopy to really see how bad it is and what my plans for having children should be. The current insurance I have will cover 4 rounds of ivf! But I'm leaving it in August when my husband gets a new job, but we're not sure where that job will be and if it will cover ivf so I really need to get going on this. Thanks again for your support!

[ticked]

It depends on what she saw. An Endometrioma is an indicator of moderate to severe disease and you are in good hands if that doctor can tell by looking at a scan because most can not. Or maybe it was the person who reads the results. Also Fluid in the cul de sac is an indicator as well.

I know many women who are infertile with Endo as well as fertile. Endometriosis is like roulette. You will never know until you try and it doesn't matter what stage you are at. I was stage IV and conceived but I know others with minimal Endo and cannot.

I also know women who have had surgery and conceived right away.

Your best option is to find the best Endo surgeon to operate.

Please do not lose hope, try to breathe.

I will inbox you some information to find the best surgeon, Facebook pages, twitter etc. There are millions of us out there and everyones story is different.

[koko1988102]

I was diagnosed via transvaginal ultrasound with endometriosis at 19 I had surgery to correct it and I have recently had my first child. This is a family problem on my mom's side my aunt was diagnosed at 36 and had surgery to correct it and was able to have her final child at 38. Don't think as this a you can't have any children I know this is the most annoying thing to hear but try to not think about it because until you are told you can't have kids you can!!! Good luck I'm hoping for the best for you!