another endo post . . .

Has anyone had continued pain from endometriosis in spite of being on no hormones?

I had tah/bso May 13, 2002 for severe endometriosis. I lasted about five months with 1 mg Estrace, then the endo came back. I kept reducing my dose until I finally decided to stop altogether (agreed with dr.). For me, it seemed even the vaginal Estrace stimulated endo growth (though many women find it does not). I've been off estrogen completely for a couple months (I started taking Effexor), but I've become achy again . . . lower back, abdomen, reflected pain to the shoulder blades (yeah, I know it sounds strange . . . that was worse for me after surgery than the abdominal pain!) - all of which are typical symptoms for me. Is there anyone out there who can comisserate with me and help me find treatment ideas to discuss with my gyn?

It's a tricky beast!

Thanks, and I hope you're all having a great week so far!

-Christie in Arizona

Hi Christie I haven't had endo myself, but your post caught my attention. I'm wondering, has your DR checked your hormone levels since you've been off the Estrace a while now? The reason I'm asking is that it's possible for your body to make its own estrone in your abdominal fat cells (and if you have as many of those as I do these days, it could be enough estrone to aggravate your endo).

Have you tried using some form of progestogen (either natural progesterone or a progestin) to discourage that endo re-growth? Or have you tried using estriol as your estrogen? Estriol appears to oppose estradiol and estrone by occupying the same estrogen receptors, and it doesn't encourage re-growth of endo, yet helps with menopausal symptoms. It might be worth a try... ask your DR. Let us know what he/she says, OK?

s,
-Linda

Christie:

I currently am possibly dealing with endo regrowth, too. One thing I am finding helps somewhat with the pain is just to make changes in diet, etc, to reduce as much inflammation as I can. So much of endo is auto-immune, and inflammatory, that anything I can do to strengthen my immune system (trying to reduce stress , eating little to no refined sugars or other products, etc.) does seem to help in incremental ways.

These aches and pains you describe can also be signs of estrogen deprivation and/or intestinal issues. It may not be active endo at this time, but scarring from old disease -- and would give you the same symptoms, particularly that specific shoulder pain. And there are many who report aching with low estrogen levels (although, that's usually aching of joints, but muscle aches are not uncommon).

Does your doctor have you on any progesterone/progestin source? If you're dealing with active endo, that can help suppress it. But endo does also leave scarring, and I'm not ever sure I could differentiate which pain is "active" endo vs. adhesion formation (something I have aplenty!).

I've done somewhat better by avoiding most caffeine and refined sugar (although I still allow myself one single sugar source, a cookie or a bit of ice cream, per day...nothing like my previous consumption!). Reducing stress is more difficult, though...

Good luck with all this. Before I give up and admit that my endo is newly active, though, I know that I'm having a few things investigated...intestinal symptoms from scar tissue can look suspiciously like endo's return, be devilishly difficult to detect...but in fact not be due to active disease. In the meanwhile, I do plan to try the estriol cream myself...luckily my doctor is ready and willing to work with her local compounding pharmacy, and I've been able to get what I need.



Audrey

Thanks so much to both of you for the comments. Both I and my doctor are somewhat stymied about what steps we should take next. When I saw him last, going off all hormones for a few months completely was the best, but most uncomfortable and drastic, step to take. Now I'm wondering if it's even working.

>I haven't had endo myself, but your post caught my attention. >I'm wondering, has your DR checked your hormone levels since >you've been off the Estrace a while now? The reason I'm asking >is that it's possible for your body to make its own estrone in >your abdominal fat cells (and if you have as many of those as I >do these days, it could be enough estrone to aggravate your >endo).

Good question, Linda - no, he hasn't checked my hormone levels since I've been off hormones. It's been a month since I've seen him and I just started having achiness again this past week. With all the hot flashes I've been having and how severe they are (especially in an Arizona summer - ack!), I'd be surprised if I am producing any. I'm also pretty slim, so I probably have fewer fat cells, right? I have been wondering more and more if I'm reacting to hormones in food (especially meats, dairy, eggs, etc.) or pesticides or some other thing that acts like estrogen. It's a good idea to check my levels - thank you for that suggestion. And, Audrey, it's a good idea to watch what I eat, too . . . I am not a super healthy eater (though I'm not overweight). I tend to enjoy sugar and snack foods, and though I don't consume much caffeine regularly, I recently went on vacation and relaxed my standards a bit . . .

>Have you tried using some form of progestogen (either natural >progesterone or a progestin) to discourage that endo re->growth? Or have you tried using estriol as your estrogen?

I used natural progesterone cream throughout my pre-surgery struggle with endometriosis. When I had to go off oral Estrace, I took a progestin to combat the endo for about four months. I gained 10 pounds pretty quickly (significant, since I was 120 to begin with) and was having weird shakiness symptoms (all these symptoms went away when I stopped taking the progestin). When I went off hormones altogether (two-three months ago), I didn't want to use even natural progesterone because I read it can be changed into estrogen by the body and cause continued difficulty. I'm taking Effexor to help with hot flashes and mood swings, and I know it helps, but boy, I'm still uncomfortable a lot of the time!

Audrey, on the adhesions front, I wonder about that, too. I would think this was all adhesions if not for the fact that it isn't there all the time. Every time I've lowered my estrogen dosage, it all goes away for a few months. Then it slowly starts to come back, starting as fatigue, then the shoulder stuff and abdominal achiness. It seems to me that adhesions wouldn't respond in that way. My doctor (who was also my surgeon) said adhesions typically feel different to him (when pressing on the abdomen) than endo implants. More like thick scar tisssue and less like regular tissue, I guess. In addition, one of the tell-tale signs of my endo has been a large hard mass in the cul-de-sac region between my vagina and rectum. That's what he's following to gauge shrinkage/growth. He couldn't get it all out, but when it's less firm, that's good news. I guess I'll find out when he checks that mass on August 8 (my next appt).

You mentioned, Audrey, that scar tissue can cause "that specific shoulder pain". Is it common with endo/scar tissue to have shoulder pain? I don't think it's mentioned in the material I've read, though a surgeon once mentioned to me that ovarian pain can radiate in that way to the shoulders. Of course now I don't have any ovaries! It really seems strange that it would hurt more between my shoulder blades than it does in my abdomen sometimes. (I wondered if some of that's because some nerves were cut in my abdomen during surgery and haven't come back, so I feel the shoulder stuff more).

>Estriol appears to oppose estradiol and estrone by occupying >the same estrogen receptors, and it doesn't encourage re->growth of endo, yet helps with menopausal symptoms. It might >be worth a try... ask your DR. Let us know what he/she says, >OK?

If things don't get drastically worse, I'm going to wait to talk to my doctor until my August 8 appt, at which time I'll bring this up. I'd like to wait as long as possible to make further decisions to see if maybe it will go away on its own. Though it does seem dangerous for me to take anything starting with "est", looking back at my track record of taking hormones!

Thanks again for your comments - if you think of anything else after reading my responses, please let me know!

Have a great day,

-Christie

Sorry about how my quotations came out in that last post. I didn't preview it . . . !