Endometriosis Support Group
Endometriosis is a common medical condition where the tissue lining the uterus is found outside of the uterus, typically affecting other organs in the pelvis. The condition can lead to serious health problems, primarily pain and infertility. A major symptom of endometriosis is pain, mostly in the lower abdomen, lower back, and pelvic area.
So I will try to make a long story short...
I was diagnosed with endo in 2006 after two years of symptoms. Since then I have tried BC, lupron, and norethindrone. The norethindrone was working great for me until they had to take me off of it. They did this because all the years of hormone treatments caused me to develop benign tumors on my liver. So since February, I have been off of all endo treatment for the first time in like, 7 ish years. So I'm now dealing with my period for the first time since I was a teenager. Back then, it was totally awful. I bled for about 20 days every month, very heavy and awful, debilitating pain. Fats forward to now. When I stopped treatment, my period started off not so bad. Next month was a bit worse but tolerable, the following month a bit worse. All came at different times. Now, I have it this month and the pain is escalating more and is becoming more debilitating and I am bleeding through a tampon AND a pad every three hours or so. I feel like things are slowly progressing back to where they used to be, and I don't know if this is just what I have to deal with or if I should be worried. I feel like it might mean that my endo is growing back, which I'm really not okay with.... the tumors are shrinking so being off hormones is helping that, but hurting my endo..... I'm not sure what I am asking, but I guess basically:
1. Do you think I should be concerned? Is this pretty standard or not so much?
2. Any tips on dealing with an awful/heavy/painful/irregular period with a big girl job? Before I was in high school so I could just go to the nurse or stay home but I start a real job tomorrow..... I don't even know how to deal with dressing because my period has been suppressed for almost a decade....
Any suggestions or advice? I'm lost. Thank you xoxo
I was diagnosed with endo in 2006 after two years of symptoms. Since then I have tried BC, lupron, and norethindrone. The norethindrone was working great for me until they had to take me off of it. They did this because all the years of hormone treatments caused me to develop benign tumors on my liver. So since February, I have been off of all endo treatment for the first time in like, 7 ish years. So I'm now dealing with my period for the first time since I was a teenager. Back then, it was totally awful. I bled for about 20 days every month, very heavy and awful, debilitating pain. Fats forward to now. When I stopped treatment, my period started off not so bad. Next month was a bit worse but tolerable, the following month a bit worse. All came at different times. Now, I have it this month and the pain is escalating more and is becoming more debilitating and I am bleeding through a tampon AND a pad every three hours or so. I feel like things are slowly progressing back to where they used to be, and I don't know if this is just what I have to deal with or if I should be worried. I feel like it might mean that my endo is growing back, which I'm really not okay with.... the tumors are shrinking so being off hormones is helping that, but hurting my endo..... I'm not sure what I am asking, but I guess basically:
1. Do you think I should be concerned? Is this pretty standard or not so much?
2. Any tips on dealing with an awful/heavy/painful/irregular period with a big girl job? Before I was in high school so I could just go to the nurse or stay home but I start a real job tomorrow..... I don't even know how to deal with dressing because my period has been suppressed for almost a decade....
Any suggestions or advice? I'm lost. Thank you xoxo
It is possible that your endo is coming back, especially if it was ablated.
My suggestion would be to looking into seeing an excision specialist, not just someone who can do excision, but one who sees many endo patients on a consistent basis and experienced in excising endo.
With the type of tumors that you have it doesn't sound like you will be able to have too many options with hormones. An endo expert will be able to remove the endo with a much lower chance or re-occurrence. I think some of the experts are reporting reoccurrence as low as 5-15%, and this is without the use of hormones after surgery.
Some of the top endo specialist that come mind are Dr Robbins in ME, Dr SInervo in GA, Dr Koh in WI, Dr Cook in CA. There are few more, (some in NY, one in WA, another in TX) but that's what mind is coming up with right now. Some even offer free case reviews and depending on your insurance you may be able to get a surgery covered with them as in-network.
Im sure you are wondering why I would say surgery as my advice to you, but with an experienced endo surgeon that is your best bet with treating endo, especially since you can no longer use hormones.
Im sorry you are having a hard time with your period. :-( Best of luck with your new job!