Endometriosis - anyone else? - Page 2 - Mothering Forums

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#31 of 48 Old 10-30-2004, 02:28 PM
 
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to be honest, the women ob/gyns that I've seen were way worse than the male ones. It's like if they don't have crippling pain with their periods, they think I just have a low pain threshold, or am exaggerating, or something.

Finding the right doc is very important. It took me many tries before I found my surgeon, and I found him over the internet! Just lucky that he happens to live here where I do (but has another practice in Manhatten). I was also told that I'd never have any kids, and two docs actually said that I should have a hysterectomy!

The *only* way to dx endo is with lap surgery. Sorry. And, if you're going to have the lap, make sure the doc doing it is skilled enough to completely remove (excise) any and all endo he might find. Most docs aren't able to do that, so it's very important to find one who can. There are no other tests, though the ca125 test will have elevated numbers for women with endo (or cancer). Endo usually doesn't show up on ultrasound, either, though many docs still try to find it that way. I'd like to give them credit, and think maybe they are just trying to rule out other problems, but I really think they are just trying to make that bill go as high as possible before you wise up and find a doc who can actually help.

Kelly - for your problems, I would go see a reproductive endocrinologist. It definitely sounds hormonal to me, but you are right, the pain could be endo. Have you ever had your hormone levels tested? An RE would be my second choice for lap surgery, as they see more women with endo than a regular ob/gyn does, and have more practice in treating it.
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#32 of 48 Old 10-30-2004, 02:37 PM
 
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Oh, and since this is turning into a sort of tribal thread...
thought I'd share with you what's going on with me.

af came back. Now I have no more excuses to put off surgery any longer, and I called my surgeon. My last lap was five years ago, and I am going back to that same doc. www.womenssurgerygroup.com is his website. I see him Nov 18 (the day before my baby's first birthday) and if it's anything like last time, surgery will be within the next few weeks after that.
I just can't function and take care of my family like I should, with this pain. I think most of it is adhesions from the cesarean, since the pain didn't go away during my pregnancy like it did the first time. Anyway, I know this doc is the best I can see. He really knows his stuff, and he helped me before. But I'm still terrified of having to go back to that hospital where Jenny was born (it was very traumatic experience for me). *sigh*
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#33 of 48 Old 10-31-2004, 05:49 AM
 
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Awww...Stacy...
Surgery before Christmas? Will it be the outpatient kind?
If it's any consolation, you'll probably be in a different part of the hospital from where you had the C-section...In some hospitals, one area can be awful, and the others great...
Might even have different colored rooms and everything...lol...maybe once you were in you could pretend it wasn't even the same place...

Hmmm..can I ask you all a kind of gross question?
Is it normal to have, in addition to goopy black, brown, and plum clots...actual decent sized.....flesh come with AF?
I'm not sure I have endo, as I said before....but I always have lots of cloting...like Calm described...never just bright red blood...dark, thick red at best...and sometimes...err...what must be fairly large pieces of uterus...
What's a "normal period", and what's a sign of endo?
Sorry this was so gross....
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#34 of 48 Old 10-31-2004, 05:56 AM - Thread Starter
 
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And don't forget to check out Stacy's site on the first page here, my fellow sufferers.

Sorry to hear its coming back, Stacy. I know in my heart I have to face surgery again, too. Was the traumatic birth the c-section? I still have issues about my own I think. Yours was a general anaesthetic? That is what did my head in. Freaky, disillusioning experience all round that I am still working through myself.

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#35 of 48 Old 10-31-2004, 01:16 PM
 
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Stacy, Im so sorry you have to return to a place that causes such horrible memories for you.

Calm, I Stacy's site, I have been reading through it as often as I can.
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#36 of 48 Old 10-31-2004, 02:55 PM
 
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thanks everyone
yeah, it's where I had my cesarean (that story is also at my website, too), but also where I had my second lap, which was a totally positive wonderful experience (well, except for it being a hospital and full of doctors and all). I've always had a problem with anxiety when it comes to doctors. Probably a direct result of going over twenty years and never having my pain taken seriously.

Kelly, believe it or not, "normal" period should be thin red blood. The only time I've ever had one like that was my first AF after Jenny was born. I totally freaked out! Called my doctor on a Sunday in hysterics, I thought I was going to bleed to death, since the blood was like what comes from a cut. He laughed at me and said that's what periods are supposed to be like, that every other period I'd ever had, (thick, dark, clumpy, sometimes with huge clots) was not normal, and was probably due to the endo. There are other conditions that would cause periods like that too, I think fibroids is one. (((Hugs)))
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#37 of 48 Old 10-31-2004, 03:05 PM
 
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I also suffer from the beast.
1 ab. laparotomy
3 laser laparoscopies

down to 1 tube/ovary.

I feel it was a miracle I got pg with DS @ 42 yrs old.

My Mom had severe Endo & I/m worried about MY adult DD b/c she's showing signs of endo :

Me & DH hug2.gif , adult DD lips.gif & 7 yo DS guitar.gif . 2 GSDs, 6 rescue kitties, 4 birds & a gerbil.
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#38 of 48 Old 10-31-2004, 11:59 PM
 
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Stacy- I know you! Hi! I'm so sorry you are feeling so bad again. Adhesions are the worst. Have you gotten deep tissue massage on your abdomen to try to deal with them? That made a huge difference for me with the pain that I assume was caused by adhesions. It was so bad that I couldn't stand up straight. I had minimal adhesions at the time of my lap but just a short time later they were horrible (if you can go by symptoms). My lap was an aweful experience and I will do anything and everything to avoid another one.

I had my surgery dec 13th. It made for an interesting first christmas with my IL's, me all hopped up on pain killers and all.

to all of you. I know just what you are going through. For me the real answer has been through diet changes and progesterone cream. It doesn't work for everyone. Please do consider surgery to be a last resort and search for other ways to treat this. You never know when you will react badly to a surgery and get way more than you barganed for from it. I'm not saying that it is never a good idea, just make sure you know what your risks are and weigh your options fully. Most ob's don't know much about endo (even ones who call themselves specalists or are listed on some web sites as specalists, learned that the hard way). Get all the info you can and just keep searching for more answers. One thing that endo taught me was to not put my well being into the hands of Dr's. They just don't have the vested interest that I have and only I can make an informed choice.

Patty wife to Jason Mama to Wisteria (6) and Junia (2)
our family is <>< and :
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#39 of 48 Old 11-01-2004, 01:34 PM
 
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Hi Patty!
Yes, I do totally agree with everything you said! The doc who did my first lap called himself an endo specialist, only took patients who complained of abdominal pain, and was a total quack. My surgeon fixed the adhesions and other damage caused by my first lap as well as removed the endo that first doc said couldn't be removed, and I am very confident that he can fix the damage caused by my cesarean as well. I don't think I'd need to see him again yet, and it's been five years ago, if it weren't for the cesarean. As much as I hate doctors, I honestly trust this one. He's so different than any other doctor I've ever seen. AND he helped me before, when nobody else could.

Diet definitely helps, but it's just gotten past the point where I can function properly. As a SAHM, I can't just call in sick and lay on the couch a few days out of each month like I used to do. I have to get the problem taken care of.
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#40 of 48 Old 11-18-2004, 07:10 PM
 
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anybody still subscribed to this thread?


....



....




well, my surgery is scheduled for Dec 3, that's the Friday after thanksgiving. It's the same doc that did my last surgery, five years ago, and whose website I'm sure I've linked to dozens of times anyway, just wanted to ask that maybe you all would think of me that day. I don't do well with doctors and hospitals, uh, I kind of have some serious issues with doctors and hospitals as a matter of fact, but I know this doc is so nice and so talented with excising endo or I wouldn't even consider it! anyway, it will be nice to be rid of the pain, even if I do have to go back in five more years.
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#41 of 48 Old 11-18-2004, 08:24 PM - Thread Starter
 
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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.

Hunger is political.  Wherever there is widespread hunger, it is because people with guns are preventing other people from bringing in food.  
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#42 of 48 Old 11-18-2004, 09:51 PM
 
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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?
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#43 of 48 Old 12-06-2004, 07:35 PM - Thread Starter
 
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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.

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#44 of 48 Old 12-07-2004, 01:38 PM
 
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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.
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#45 of 48 Old 12-07-2004, 06:29 PM - Thread Starter
 
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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!

Hunger is political.  Wherever there is widespread hunger, it is because people with guns are preventing other people from bringing in food.  
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#46 of 48 Old 12-08-2004, 09:29 PM
 
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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.
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#47 of 48 Old 01-20-2005, 08:54 AM - Thread Starter
 
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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.

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#48 of 48 Old 01-20-2005, 01:16 PM
 
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(((((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.
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