Recurring endo?

Hi! I'm 31 and just had a TAH/BSO on April 1, 2003. Am on Esclim HRT. I've heard that endo can reoccur even after a hyst. Does anyone know how that can happen since the urterus is gone, and also what is the treatment if it does come back after a TAH?

Hi Carrie Ann
I'm sure some other sisters will be along as this is a topic of much conversation in the message boards. I suggest that you re post the message under the Road Less Travelled forum as that deals with long term problems after hystreectomies.

Endo needn't necessarily 'come back' but it can. I had a Hyst a year ago and the doc honestly said that he wasn't able to remove all the lesions - it was everywhere and too dangerous. Anyway I do have some relatively minor symptoms and an endometrial cyst on my ovary . The doc has suggested removal of my last ovary and no HRT as the endo feeds on estrogen. I'm not going to have anything done at the moment as the 'cure' seems worse than the symptoms.Do you have ovaries? I assume not if you are taking HRT.

Here's hoping that you don't have to concern yourself about reoccurence.


Diana

Hi Carrie Ann,

The docs really don't know for sure what causes endo ... retrograde bleeding is just one theory ... if that were the definite cause, then a hyst would eliminate the problem. Unfortunately, some ladies do have endo recurrances even after a hyst.

Some other theories include the possibility that endo is an autoimmune disorder or that perhaps you are born with endometrial cells outside your uterus.

As for treatments for recurring endo ... since estrogen is known to stimulate endo growth, removal of ERT is one option. The use of megace or another progestin to suppress endo is another possiblity, as is additional lap surgery to excise the endo.

I truly hope that you will be endo free forever and not have to worry about further treatments. Like you, I had my TAH/BSO primarily due to stage 4 endo and my prayer is that it never comes back.

Sending hugs your way.

Beth

Hi Carrie Ann,
I also had a TAH/BSO recently for endo and I refused estrogen because I was afraid of a recurrence. As stated above there are doctors who prescribe progesterone to speed up the process of eliminating the endo growths. This may change, but at the moment I am trying natural alternatives to hormonal treatments. I just had my hyst so I cannot give you any feedback on how it is for me. I can tell you that so far I have not had any endo pains. I suggest also visiting the No Hormone Desert Oasis because there are lots of endo sisters posting there.
Good Luck,
Elizabeth.

Hi Carrie Ann:

I can only offer you my own experiences. I had SAH/BSO in January 03 for endometriosis and have been having a terrible time with the HRT. I started on patch which was too strong and some of the endo pains came back within weeks. Then I developed rashes and had to stop patch. Am now taking estropipate .625 pills, which started the same problems, so I'm now taking half pills. I am going to give this a few weeks to see if the symptoms subsibe, and if not, I'll have to try and wing it with nothing. The insomnia and hot flashes have been pretty intense which is why I'm hoping that things level off.

Sometimes it is impossible to remove all remnants of endo, which is my case also. Some women have no further symptoms, and some do.

I know this doesn't answer your question, but everyone is different. Only you and your doctor can decide what is right for you. My Dr wants me to give the HRT a chance at the lowest dose possible due to osteoporosis issues in my family, so I'm hanging in there as long as I can.