Can endo suddenly get worse?

[ebrown729]

I have had endometriosis for about 20 years. It gets worse around my period, I have had 1 laparoscopic laser treatment, an IUD, hormone treatment and was even sent to physical therapy to try and help. Nothing has helped, but it has been livable for the most part, just around my period it is very, VERY painful. In the last 3-4 months, however, it has gotten to where it is painful all day. Some days it s so painful I can barely walk and I have pain in my leg as well. It is also effecting my bathroom habits. I have to pee all the time, but like when I have been pregnant, I feel as though I have a full bladder, but only a little comes out. I am either constipated or have to go several times a day with no in between. Sex has become very painful, but it is actually more painful after sex (this is new) and can last until the next day. My headaches have increased in intensity and number as well. In the last week, it seems to have intensified again, almost doubling. I have seen a specialist and am scheduled for a complete hysterectomy because she says there is no other treatment option for me at this point. I believe her and she could cut my legs off if it will help. She warned me I could have bowel involvement and need to be prepared that she may have to go from laparoscopic to full incision if that is the case. I don't actually know anyone else who has this for me to talk to, am not on FB. I just want to know if anyone else has had this happen to them? I feel very alone, very scared. I am only 40. I am worried this will happen to my daughter, who at 15 already has very heavy periods and lots of pain with them. I am just looking for support, for advice, for anything. Please help.

[ticked]

Please do not go and have a hysterectomy because this doctor has said so. Let me know where you live and I can get you a better endo specialist that knows how to do a proper surgery. Most say they are specialists but they are not and it takes years and years of training to excise the disease from the root rather than ablation which only gets the surface of the disease. You might not have felt pain for a while because you were on different meds for hormones. Please take my advice very seriously

1) be your own advocate
2) make sure you take all the results of your tests that are being done, always keep a copy
3 Do not have a regular OBGYN operate on you under any circumstance if you want relief. I will help you find that doctor that could help you alot.

I am 3 yrs post hysterectomy and it has been a nghtmare with no signs of ending.