Endometriosis - anyone else? - Page 3

[Calm]

I'm still here. I will definitely think of you and meditate for you on that day - be sure to post a reminder. I am sure it will all go well, and I will send all the healing light I can gather! I haven't posted here as my last cycle was pain free! I don't know what happened, or if it was a fluke, but I am totally hoping it is gone. Do you get months where all goes normally? Tell me you don't, please? Then I can positive think myself into delusion. :LOL.

Blessings, mama.

[stafl]

Calm, pain free is great!!! Delude yourself all you want, it can't hurt a thing
It has been many, many years (at least twelve or so) since I have had a painfree cycle (not counting the first two postpartum cycles after my oldest DD was born). Tell us what you did differently! Was it diet? exercise? acupuncture? wishful thinking?

[Calm]

How did you go, Stacy? I totally forgot on the 3rd, but I did think of you right before and right after! Does that count?:LOL

Actually, I have been eating a lot of soy products, as I found out about the Japanese and how they generally have easy menopause and periods because of their high estrogen diets. I eat tofu, soy sauce as sauce for everything, tempeh, you name it. I especially like soybeans boiled in the pod with heaps of salt and then eating them out of the pod. I am also drinking more water. I haven't quit coffee. Ooops. But another month went past, and no pain, and to add to that, only 3 days long! Still clotty, but WOW! So that is two pain free months in a row. I am also meditating and bringing in the light into my crown chakra a lot, at least once a day - for what that's worth. My husband does hands on healing for my headaches, and I told him to do them on my belly - so maybe they are helping, too. A friend also told me she shrunk an ovarian cyst by seeing "the cyst as cheese, and sending mice in to eat the cheese" Ok, so some of these therapies are off the wall :LOL. But her doctor was quite impressed (and of course attributed it to "one of those spontaneous healings", not to her hard visualisation efforts).

So, yeah, a bit of wishful thinking, a bit of estrogen, lotsa light! I could be a monkey's uncle next month, so I won't bring out the band just yet, but I am celebrating this Christmas, lemme tell ya! I will find the link that does a questionairre about whether you could be low or high estrogen, or/and low/high progesterone. If you are high estrogen, a soy diet would make it worse, I would imagine.

[stafl]

I have extremely high estrogen levels, but phytoestrogens help me. Doc says that they bind up the estrogen receptors, so my body makes less of its own estrogen. whatever. I use wild yam cream with really good results. Like everything else, it helps some and for others it makes things worse.

Surgery went well. I had way more endo in there than anyone expected, considering I had it all removed five years ago, and have had two babies and breastfed both of them since then. I did have adhesions that were sticking both of my ovaries in the wrong places, which he cut through. Major gobs of endo in the cul-de-sac, which he removed. I'm still very upset at my doc's lack of a bedside manner, when he was so sweet and compassionate the last time. He didn't even come talk to me! Nurses told me he wanted me to stay overnight, but wouldn't tell me why, only that doc would come talk to me, which he never did. His assistant finally came to see me and said "I hear you're going home today" and I said "Nobody told me!" He seemed suprised that Dr. Liu didn't bother to talk to me before he left the hospital, but he did answer my questions. He also told me that my uterus is enlarged to the size of a six week pregnancy, which is a sign of adenomyosis (endo growing inside the uterine wall) and didn't deny it when I said the only treatment for that is hysterectomy... ugh! Anyway, I have some things to tell that doctor when I see him in six weeks. But all in all, I'm glad I had the surgery when I did. I can only hope it's five more years before I have to go through this all over again.

[Calm]

Oh, sheesh, Stacy! I hope you are healing ok . Be sure to stretch about when you can move a little, like we do for a caesar to keep the fibres stretched etc. Do your doctors use talc (titanium dioxide) in their gloves? It has been stopped in Australia because talc from surgery gloves causes organs and blood to stick together which is, of course, adhesions. There have been much less reports of adhesions since this was removed from practise.

I am sure your doc was feeling overwhelmed or something, since he was so good last time. Although, it would have been a diff experience I am sure if he had connected with you somewhat.

I have a fibroid in my uterine wall, and was offered this specialised op where they go in through a leg vein and into the uterus and inject something and it dries itself up. But that is a fibroid, not endo, so it is probably different.

I am thinking of you!

[stafl]

My surgery was done laparoscopically, his hands never went inside me. He made six little incisions (usually it's only three or four) that the instruments went in and did all the work while watching it on a tv screen over head.

after a little online searching, I found a doc who treats adenomyosis using MRI to find the bad spots, and cuts them out while leaving the rest of the uterus there. Of course, you can't get pregnant after that procedure, but to me it sounds much preferable than a hysterectomy. We aren't planning on having any more kids anyway. I'm still hoping maybe there's some other explanation for my uterus to be enlarged, but not finding anything.

[Calm]

Just resurrecting this to update (and to purge my day). I had my U.S scan and everything is a mess. I am changing my diet a little late by the looks. I haven't got the results yet, but because of all the problems, the room filled with a few people and I got to see and overhear.

The cyst on my spleen has at least doubled (like everything else I will know for sure the scale on my doc visit);
my uterus is bulky and the fibroid is bigger;
my ovary is caught behind my bowel, and is very enlarged and hypoechoic;
cysts have formed on my caesarian site;
there is fluid all over the place (probably the endo);
it looks like I miscarried last month (didn't know I was pregnant);
there was something else that was discussed that I hadn't heard of before, and still don't know what they were talking about.

As I said, this is all I could understand and see on the monitor. They aren't allowed to tell you anything or hand the results to you (had it done in the hospital), you have to go to your doc. So, wishing my appointment was sooner than next week, but feeling generally ok. Didn't expect it to look this messy though, must admit.
Thanks for listening.

[stafl]

(((((Calm))))) I'm so sorry about all that!! None of my endo ever showed up on ultrasound, and I had it really bad. Just make absolutely sure, that if you do decide to have surgery, that you have the most highly skilled lap surgeon within a reasonable driving distance. Honest, it makes that much difference. Most docs just aren't skilled enough to excise (totally remove) all the endo, no matter where it might be located. http://www.womenssurgerygroup.com go to the endo section, then to FAQs. There's a list of questions to ask your doctor - I very highly recommend you bring those questions to your next appointment!

I don't know if you saw it, here's my most recent thread. After reading your thread about diet, several other people that same day, even, said the same thing to me, so I am definitely going to work on what I eat. I don't believe it's a cure, but I know for a fact that it helps with my pain levels, and "at my age" maybe I can manage the pain well enough that I won't need another surgery again.