Return of Endo???

Hi All,

Well it has been about 5 years since my total hysterectomy and I think the endometriosis has returned. I had endo all my adult life and had it removed by laser. Anyway, because of the endo is why I had the hysterectomy to begin with. Lately I have been having all the classic symptoms. The most prominent being pain in my groin. I had this same exact pain after my hysterectomy and my OB/GYN said there had been an old endometrial implant she had to remove. Well, once again, the pain is in the same exact place. My OB/GYN suggested the Combipatch but I have problems with it in that it causes such muscle pain in my legs. Actually, any form of progesterone/progestin causes muscle pain. So, I am going to call my OB/GYN today and see what can be done. Anyway, it could also be adhesions. So, I was wondering if any of you had a return of endo and what your doctor did to rid you of it. I know my doctor will probably suggest another lap which I am hesistant to do with the neck issues I have. But then again, I would rather have a lap then to try to rid myself of it with progestin. Thanks!

I'm sorry to hear your endo came back.I think a lap is best so you can be pain free.What stage of endo did you have?Did you do hrt right away?

Hi,

I am not sure what stage of endo I had. I do know that it was always spots scattered here and there. And my doctor told me it was slight. BUT...it did cause SEVERE pain. I always knew when it had come back as I would have severe cramps, break out in a sweat and just lie down until the pain had passed. And, each and every time I went back to the doctor to let her know, I was always right. She would tell me after every lap that I was right...it was back and in different places. Yes, I went on HRT right after my hysterectomy but she put me on the Combipatch for about 3-6 months. Then after that I was on the Vivelle dot .05 and have been on that ever since. Oh, I almost forgot, she also gave me a Lupron injection PRIOR to my hysterectomy so that I would go through artificial menopause first and so that the transition to HRT would not be difficult. The Lupron timeframe (3 months) was horrendous; with hot flashes, migraines and terrible leg pain. But, after the hysterectomy I was fine. It is odd that I cannot seem to use the Combipatch now. I have also tried the natural progesterone...but the leg pain comes back with a vengeance. I will say that when I increase my estrogen a little the leg pain goes away. But I am so fearful of increasing it due to suspected endo. So, I called this morning and cannot get in to see her until the end of November. In the meantime I think I will just stick with the low dose of estrogen and a pain med here and there; if need be an anti-inflammatory as well. I am almost certain that she will want to do a lap which is fine, they will just have to be careful with my neck when I am intubated. The intubation from my hysterectomy is what aggravated the arthritis in my neck and I went through 3 years of grief trying to get that straightened out. Anyway, I will just have to hang in there until I do see her. Thanks!

Thanks for all your info with you & endo.I haven't went on hrt yet & i've been okay.A few warm flashes/mini night sweats, biggest complaint loss of sleep but doc gave lunesta,that lil does bring you great sleep.I hope you feel better soon. I also took 1 dose of Lupron but lost hearing for a month among other side effects not a big fan of it. Here's wishing you continued better health.

I'm on a low dose of estrogen too because I'm scared the endo will come back and I can't tolerate much in the way of progesterone. I would hate to have to go through all this for nothing. I took Aygestin for three months after my surgery to "burn out" any remaining endo. I have had a few twinges of pain here and there that were very reminiscent of my endo pain. I hope it is nothing. My body wants more estrogen so bad but I'm trying to get by on as little as possible and I really want to get off it altogether as soon as I can. Good luck and I hope you can find a solution without more surgery.

Has anyone had this test before? I will be meeting with a Doc at compounding pharm, he may suggest getting it done, and I'm having a hard time tracking down a procedure code to see if my insurance will cover it. Has anyone had a difficult time getting it covered by Insurance? How does this test compare to a blood test?
Thanks Esty

I haven't had the saliva test. But my regular MD mentioned it to me the other day. Supposedly, you can go to salivatest.com and order the kit. I guess you spit in a tube and send it back! I am going to look at the website here shortly and see what it is all about.

Kathi