Hi Becky, I had a terrible time with cysts and endo. Mine started when I was very young. Like you the first few days of my period where horrible. Then I started running a fever and took to my bed as well. I was always nauseous and just very sick. Now unbeknownst to me at this time, I also had sarcoidosis which is an auto-immune disease similiar to Lupus, RA and Chrohns.
The first two cysts that I had ruptured and both times I was bleeding internally so I had to have surgery. Once I was diagnosed with Endo, they tried me on Lupron which was not fun, I did not tolerate it well. When they did the lap they said I had more Endo then before I started the Lupron so they discontinued it. I was 19 at this point and they asked if I was dating anyone seriosuly and could have a baby. I wasn't and that was not an option. I kind of just dealt with it for awhile then I had another cyst rupture. This time I was rushed into emergency surgery and they had to do a radical hysterectomy.
To be honest, it was the best thing I ever did. I woke up and wasn't in pain. For years I walked sort of bent over because of the pain and it was gone.
Now that I have been diagnosed with Sarc, and I sent back for my old records and a biopsy taken back then clearly shows I had Sarc at the time. They are doing studies to see the relation between Sarc and female problems. I am not a Doc or a medical professional so this is just my gut feeling but I think there is. I have dealt with this disease for 10 years now(well officially 20) and I kind of know its nuances and I believe it played a part in my female problems.
But depending on where you are and how you feel on the children issue, a hysterectomy can be the right choice. I didn't have a choice, but I am so glad that is what happened. For me that was the best solution. Like you said, you are alread dealing with Crohn's, now having Endo to deal with too can be hard and there isn't a lot of options. I don't know how old you are but hormone replacement is something you need to think about. I wasn't allowed to go on HRT right away because it could cause the Endo to grow in the abdomen. I chose to start it about 7 years ago for personal reasons but my doc would prefer me off of them.
As far as questions go, if you do have it, I would just make sure to go over all your options. That way you can go home and think about it before you would have to decide anything concete.