help..

[emzy_m_c]

Last year I was diagnosed with endo.. it took five weeks seven doctors as well as being told it was all in my head, it's just period pain among other things to get ref to a specialist.after I had surgery I was told it was wide spread including on my bladder liver and bowel and that I couldn't have the laser surgery to remove it as it was to dangerous. I it depression because I feel like I can't do anything now my bad days of pain are more the my good. I'm only 25.. the doctors recently told me to go see an ivf specialist as it may be my only option but my partner and I haven't even started trying yet we plan to this year.this doesn't sound normal to me?? I feel alone like nobody understands. Everyone just tells me to get over it that there is worse I could have.. I just want someone who understands to talk to.. sorry it's so long

[ticked]

My friend just had surgery for liver and diaphragm endo. Please take all your records from the surgeon who did you surgery and listen to ipurr2 and let her know where you live as there are top surgeons that can do this surgery and its not something that can't be done. You want the best of the best. I know it can be depressing I completely understand 100%. If you look through my journals on my profile you will see you are not alone :) hugs xoxox

[ipurr2]

first know you are not alone and many of us unfortunately have walked in your shoes!  It took me 13 years to figure out what was wrong with me and I then went in and had it confirmed with laproscopic surgery...unfortunately, I did not see an endometriosis specialist because I did not know...so mine was deeply infiltrated stage 4 disease and they took my uterus, cervix, tubes, ovaries...but this did not cure the disease because the only chance at cure is to actually cut (excise) the disease out and there are only about 100 or so true endometriosis specialist in the world...so you may even need to travel to get the care you need and deserve! Because of the mismanagement of my disease I lost my ability to ever have a baby, was thrown into instant and harsh menopause (VERY unnecessary) and then still had the disease...I have since had two excision surgeries by specialist to cut out the missed disease and fix problems caused by the unskilled dr. damage...so it's so much better to see the specialist from the beginning rather then finding yourself on the same road I have been on...over 20 years and I am finally seeing a sparkle of light at the end of the tunnel, but some of the damage is done and so I have to make the best of that...so PLEASE see an endometriosis specialist...if you would like to share your city/state I will do my best to find a specialist as close as possible to get you on the road to take your life back! The only true cure is excision surgery...and this can only be done by a true endometriosis excision specialist!

[LadyMorJ]

You are experiencing what a lot of women experience with people who just don't understand. It's horrible! But you are definitely not alone! In fact, it's national endometriosis awareness month and there will be marches all over the country. There may be one near you if you want to meet other women with the disease who can share their experiences with doctors and treatments.

My family friend who is an OBGYN also suggested a fertility specialist but it's because they know more about hormones and treatments. Because many women go to them who have endo and can't conceive, they are far more specialized in dealing with it. If you look at the websites for fertility specialists, you'll often see a section for endometriosis. I agree that you might want to see one, because maybe over the next year they can help you control your endo in the best way that will allow you to get pregnant when you want to.

And when you do get pregnant, it will go away! Yay!

You do have options of treatment, like progesterone birth control pills that you skip the placeebos for that will stop your ovulation for example, and you can use what you eat and how much you exercise to combat it too. It sounds like it wouldn't work but it really can help a lot. Start looking up foods that increase endo and you will find some. Then you can avoid them.

I am so so sorry that you have it in all those places and can't imagine how painful it is. But there is hope. You just have to be aggressive and try some different things until you find something that helps you.

Hugs and good luck!