Endo Treatment w/ continuous BC

[jgreen13]

Hi everyone,

I'm new to this community. I'm a 22 year old college student and was diagnosed with Endo in 2011 after a pelvic lap for constant uterine pain, heavy bleeding and blackouts. I never had any pain during sex or other symptoms. However, for 6 months after the surgery and still occasionally now I get very strong painful cramps when I'm becoming aroused and when orgasming. My doctor prescribed me Ovcon birth control to take continuous for the next 5 years without ever getting a period. I get some breakthrough "bleeding" and cramping occasionally. I also have a lot of IBS problems- not sure if it is related though. The endo really still gets the best of me more than I would like, and I have no way of knowing if anything has grown back.

I guess my question is just if anyone has been advised on this strict BC treatment- if so, has it helped keep the endo away? What other treatment options did you use? Should I try to convince my doctor that I need another Lap or change of treatment? I would like to have a family within the next 5-10 years so I don't want to risk losing or hindering that ability. Any advice is much appreciated- the frustration of this illness has been getting the best of me lately. Thank you!

[Leolau]

Hi, I feel you're pain, I was in my late 20's when after seeing a chiropractor since I was 13 he said I should look into the Endo thing he thought that was my back, pelvic, IBS, Migraines, etc and after arguing with my OBYGN to do the lapo to see it was confirmed that I had it all over inside and outside my utereus.  
Anyway, I was offered Lupron, birthcontrol, or surgery to remove everything.  I elected to try the Depo Shot birth control.  It stopped periods all together alittle spotting in the first year but that stopped 90% of the pain so I stayed on it for 9years, I still had IBS issues and migraines but the pelvic pain and intercourse pain was much more bearable. So, I tried after 9year getting off Depo and things were worse, so they finally put me on a low dose of birth control which helps again 90%, I watch my diet, and get massages and do yoga and don't have the migraines either anymore.  So, I would stay on the BC or try the depo shot they are the least of the problems and less side effects if you ask me?  Just remember you're not alone.  Best wishes and many blessings to you and your health!!

[ticked]

I had my surgery 7 yrs ago for Stage IV Deep infiltrating Endometriosis. I was put on Lupron right after for 3 months with Add back therapy as well as 2 other 3 month sessions throughout the 7 yrs. When not being on the Lupron I was on Marvelon21 BCP continuously and it has worked for me. Everyones body is different and respond to different meds. I hated Lupron and will never go back on it again because the joint/muscle and depression it caused me.

My surgery was excision mainly with some laser. Excision is very important as well as being on something to suppress the Endo.  What was yours?

I have tried Visanne as well and it is like Lupron but in pill form. I had to come off it after 3 months due to the fact it put me into a severe depression. Better now thank God. Marvelon has been my key therapy as well as body rolling as it breaks up scar tissue.

I am having another surgery in 11 days due to a badly untreated PID I got in 2010 which I was not given the proper amount of meds and should have been sent to the hospital, it was as if the surgery never happened and it upset me greatly.

Key is to find an Endometriosis specialist and have the Endo and scar tissue Excised to completely! Very Important as well as being on something continuous to suppress it like I said earlier in the post.

[Trixx123]

Hi, I was diagnosed with endo in 2010 after a pelvic lap that was for diagnoses and removal of endo. I totally understand your frustration as the pain from this disease can be debilatating. After my lap in 2010, I was taking BCP (Alesse) continuously for three months and then in July 2011 I was advised by my doc to take it continuously without stop. The BCP only slows down the progression of the growths and unfortunately, due to my increase in pain level, I'm sure it has grown some since my surgery. :(
I think surgery is a rather radical option but if you are in extreme pain than it could be considered. I would try other hormone meds and pain meds first to see if it helps.

There is a new med called Visanne (progestin-only pill) that my doc advised me to start soon, it is supposed to help with endo pain. Definitely talk to your doc again about your med options before considering surgery.