A Little Update After Seeing my GP Today....

Hey y'all.
I am a bit confused on this topic. With my very limited knowledge of endo and hormones, I have a few concerns/questions about relieving pain by going off your hrt.

Ok, what I was explained about endo is that, estrogen is the "fuel" for the growth of it. So hence, more estrogen, the more endo grows.
Ok, so then you have growth of endo on your organs that cause pain and adhesions similar to having cancer growing.

Here's where I get confused. If you've already been taking hrt and think that its possible that you've regrown your endo due to it, how could going off the hrt help with the pain, other than prevent more from growing?

Does this make sense to anyone but me? I mean, if the stuff is already formed on your organs and is/has causing adhesions, coming off hrt at this point cant make the damage already done go away, can it?

One other thing that concerns me is that the hrt is suppose to help with our bones. Personally, I'd just be a bit worried to go off it and cause myself other problems in that area w/o having proof that endo is actually regrown due to it.

I aint no Dr that's for sure Just my thoughts on this, or more my questions.

The problem with Endo is that there are so many 'unknowns.' For me...it's a bit of an experiment, in hopes of avoiding more sugery. I didn't want to part with my HRT....and who knows I may go back on it...it's too soon for me to say.

What you say is very true...."estrogen is the "fuel" for the growth of it. So hence, more estrogen, the more endo grows." And for whatever reason some women who have a hyst., and go on HRT never have a problem again There are also theories that any Endo left behind can produce its own estrogen....all by itself without estrogen/ovaries.

There is also a theory that going off of estrogen or say going on a drug like Lupron...will stop the growth of Endo...and that it perhaps may shrink and go away...or at the least be less painful.

This is sort of a last ditch effort for me. I am worried about my bones too...and I am adding a lot of Calcium into my diet.

I never really got rid of the Endo....had many laps before the hyst., tried Lupron. Had the hyst., stayed away from HRT for 3 months...but you know that has never really gone away

This 'experiment' may or may not be permanent. It may tell me if I have an ovarian remnant....that perhaps has been my problem all along...or it may help any of the 'active' Endo to shrink or go away. It is really a gamble....so we'll see. I'm feeling a little foggy today, so I hope this makes some sort of sense LOL!

Audrey, I'm glad you are seeing some improvement! No, for now I am not taking any Progesterone. I will though, down the road.

S to all of you...and thanks for taking the time to share with me....it helps so very much I have to run now...DH is awake (works the night shift).

Jude:

I have to tell you, I think going off the Vivelle is working for me. The pain has diminished in this last week, and I'm feeling better (more cheerful, for one thing!) overall.

Since progesterone can inhibit endometrium production, I would certainly ask your doctor for it. My GYN and I discussed upping the Prometrium if going off estrogen wasn't quite enough, and I may still go that route.

Imalith: I have to look at the dietary issue with soy. We are a dairy-free somewhat vegetarian household, and I do eat some source of soy daily in my regular diet. I'm hoping that getting off the estrogen is enough for me right now. And I'm debating resuming the black cohosh (for right now, the hot flashes/dry eyes aren't too bad, yet). But I think that I get some protection from the Prometrium.

(((((Jude))))). I know you're one of those people who really liked your estrogen (I find that my body doesn't seem to, for whatever reason). I do hope that this time you'll be able to have more minimal symptoms. I'll be interested to hear how your hormone levels turn out!



Audrey

Charity-I'll try to explain how going off the estrogen helped me. I'm not a doctor so I might not be accurate.

Back when I had a uterus I used to have pain for about a week before my period started and then during the first couple days that my period started. Then it seemed to go away. It was like that for years. I also had frequency of urination, during the days prior to starting my period. Sometimes I would get up every 20 minutes for about 2 hours.

After my period was over all those symptoms would go away. I believe those symptoms were the endo being fueled up and growing and intesifying. After my period was over it was diminish and go away. Of course the last month or two before my emergency surgery I had pain all the time.

I believe that being on HRT was what it was like when my period was going to start. It was fueling the endo. Without the HRT the endo adhesions shrink away.

I do not know if it is like this for everyone. This is just my experience. I really hope it works for others. That is why I still hang around on the boards. I want to make sure that my endo sisters are aware of this course of action and let them make an informed choice. It seems that many doctors are not really up on Endo.

Thanks for the info. I wasn't ever given lupron or even told about any other alternative treatment for endo.
Maybe because I had my tubes tied and was certain child bearing?? Who knows.

I am crampy this morning for the first time in weeks. I was about to share with everyone that I skipped the colonoscopy due to the oral surgery and right after the oral surgery, I had a bowel movement that was something to write home about. I went painfree since, till this morning. :

Maybe just maybe, I've narrowed down the problem, like an adhesion that causes part of my bowel to twist at times and block up some, till it passes? For now, I am going Dr Free and sticking with my better eating plan.

Seem to feel better since I made that choice as well, due to no stress with Dr's and such.

Wish me luck.

Please promise us though...if you start having really bad pain that you will go to the dr's....Okay?!

I know that my bowel is involved somehow too...having a BM is so very painful Geesh....things people take for granted eh

I met with the Nurse at the Pain Clinic today...and she was amazing. We talked for over an hour. This place gives me really good vibes. I won't know about treatment until after I see the head guy towards the end of the month. This clinic has all the specialists right there....so I am hopeful that they will be able to help me!

((((Audrey)))) I'm so happy you are feeling a difference. You know...I haven't noticed a difference in the pain level since I stopped taking my HRT....but I am feeling as you say 'more cheerful.' Very interesting....

S to all of my sisters on the road....

Jude good to hear that the pain clinic is going well and you're getting a "good feel" from it.....being comfortable with your treatment and your dr's is half the battle I think!!!

Charity.....I had to comment on your post.....in the last 6 mths or so I have been having even more pain with my BM and as you say when they do happen (every couple days now) it is something to write home about....I think one sister called them "mondo movements".....I can't imagine where all this stuff gets stored but the GS told me that maybe what was happening was that I was having intermittent blockages.....won't know until they have a look see but it makes sense to me.....please watch your pain and if it gets bad do go to the doc like Jude said ok??

Audrey, interesting about going off the estrogen......I wish I could be that brave but I am pretty much a vegetable without my estrogen I don't think I could even remember my own name but since my pain follows a definite cycle despite the lack of ovaries I"m sure I still have endo in there and I guess my bcp is feeding that Let us know how it continues to go!!

(((((Jude))))) That pain clinic sounds.... idealic . Seriously, it does sound like they take you, and your pain, seriously and that they are all set to help you off this Road. I'm so happy that you feel better, being off the HRT. Hopefully, you'll notice the pain going down real soon

((((Charity))))) I'm happy that you're feeling better. However, I'll chime in with Jude and Gidge, and beg of you that you do go to the doctor if your pain gets really bad. If you're dealing with blockage, you really don't want to risk it getting worse

(((Audrey))) I'm happy that you're feeling better now that you're off the estrogen. You girls sure are brave women.

((((Gidge))) Thinking of you as you head towards your surgery.

{{{Judy}}}
It sounds like you may finally be getting some real I am so happy for you. I will continue to that relief will soon be yours.

Thanks Sisters

I am looking forward to that next appointment that's for sure!

I may not be around the next couple of days as DH is not feeling well.


S