LAVH: Treatment after Hysterectomy? (endo and adeno, cannot do hormones. Options?)

I have Adenomyosis and Endometriosis and my hysterectomy is for the adeno. My doctor told me I'll probably need treatment later as keeping my ovaries will cause it to get worse over time. I know the hysterectomy doesn't help endo. So I just wanted to ask, I cannot handle any kind of hormones at all. I've tried the patch, shots, nuva ring, the pill basically everything and always had reactions that left me unable to function. So hormones are not an option. My OB made it sound like hormones were the only option. Is there anyone else that can't handle hormones with endo? How do you have it treated? Just thinking ahead, thanks!

Hi Nimtherial -

I am sorry you are dealing with both adeno and endo. And you are correct that a hysterectomy does cure endo. The only way it can be cured is for an expert to remove the disease.

I wish I could answer your question regarding options having endo, and not taking any hormone treatments, but I cannot.

We do have lots of women on this site. Hopefully someone with similar issues will see this post and respond.

Thanks so much, I am guessing I'll need surgery every few years to keep removing it when it becomes bothersome, I just really can't handle hormones, the only time I endured it was with my 4th pregnancy to give myself weekly shots of progesterone to maintain the pregnancy for 20 weeks. But I was sick the entire time, could hardly get out of bed and as soon as I was cleared to stop I felt drastically better.

(((Nimerthal))),

Your outlook is not as bleak as you make it sound. I had adeno and really nasty stage IV endo. I couldn't do hormones pre-hysterectomy. I did do Depo provera, and that really made me feel bad. No estrogen, nothing. But things can change.

A hysterectomy will cure the adenomyosis and bleeding, but you need a different treatment for the endo. You need to go see an endometriosis specialist. There are only a few true specialists in the US, but there is a good one in Washington. While many ob/gyns or gyn surgeons have handled hundreds of cases of endo, that doesn't make them specialists. Specialists have specialized training in how to excise all of the endo implants so that the disease goes away or is diminished to the point that it no longer rules your life. Ob/gyns and some other doctors just don't have that specialized training or the resources to do a proper excision surgery. That's why many women keep having laps every few years. Definitely keep those ovaries if they are healthy. We have members with ovaries who have had successful excisions and no return of symptom even many years later. The endo destroyed mine and I do HRT. I haven't had a return of endo yet, even with the estrogen, and it no longer makes me sick. The difference is that HRT is very different from adding estrogen to what your ovaries are already making. I'm hoping though that since you are keeping your ovaries, you won't need any hormones. I'm not sure what hormones your ob wants you to take and why. If it's a progestin, they often make women sick because they suppress the estrogen the ovaries make. Are you menopausal?

I highly recommend that you see the endo specialist. So many doctors just don't understand how to treat this disease. If you want I can PM you the name of the specialist in Washington. It can make all the difference.