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Endometriosis - anyone else?

post #1 of 48
Thread Starter 
Hi. I had pain and problems about a year ago and an ultrasound showed I had a complex cyst on my ovary that looked suspicious. So I had a laparoscopy in April and it ended up being endometriosis in BOTH ovaries - ouch! It was removed, and noted that I had a fibroid in my uterus (3cm). In the last few months, I have been having pain, just like before, which is steadily getting worse. I have heard endo can return, and maybe never cured. EEEK, this scares me as the pain is pretty bad sometimes. It occurs after my period (sorry, details) strangely enough, not as much during.

So I guess I am looking for others that have had this problem, and if they managed to eradicate it. I am seeing a doctor later in the week, and will request another ultrasound, but I am afraid it will be incorrect like last time.
post #2 of 48
I have endo. I have my endo-story and some helpful tips and great links at my website. http://pages.ivillage.com/stafl/id6.html
What worked best for me was to find a surgeon who specializes in lap surgery to remove endo.
I notice a huge difference in how I feel depending on what I'm eating. I have to cut dairy and sugar from my diet, or I'm in terrible pain. Anyway, I think I have a link or two about the endo diet (it's very similar to the candida diet).

Endo that is excised, completely removed, will not re-grow at that same spot. But, any endo left behind, even microscopic implants that can't be seen during surgery, can and usually will continue to grow. Also, any abdominal surgery carries the risk of adhesions forming. Those of us with endo tend to have more trouble with adhesions than other people. These reasons are why it is very important to find a surgeon who specializes in removing endo laparoscopically instead of letting some regular ob/gyn attempt to treat us.
Endo will not usually show up on ultrasound. It is the same density as the surrounding tissue. I had very severe Stage IV endo that never once showed up on ultrasound (my entire peritoneum was covered with lumps of endo). Why pay (or have your insurance pay) for a diagnostic tool that doesn't work? Maybe you need to find a new doctor.

That your pain is now getting worse leads me to wonder if all the endo was removed, or if you might have adhesions as a result of the surgery itself. ((((HUGS)))) I hope you feel better soon. feel free to ask me any questions you might have.
post #3 of 48
Thread Starter 
Oh, what a great site! Thank you sooo much. I am going to go and do some more reading there now....
post #4 of 48
sending you hugs and healing vibes...

Just wanted to drop a book recommendation, too: Women's Bodies, Women's Wisdom by Dr. Christiane Northrup. She has a website, too: www.drnorthrup.com She also recommends Louise Hay's books and teachings and Caroline Myss' books _Why People Don't Heal and How They Can_ and _Anatomy of the Spirit_, which might be appropriate and interesting to you.

warmly,
claudia
post #5 of 48
i'm sorry for your pain...i know it all too well


stacy has given you some great advice. i must say that my endo also showed up on a U/S but only because of the TYPE of cyst i had...endometriomas CAN show up on u/s (but don't always)...they also call them "chocolate cysts" and i', assuming that's what was found on your u/s last time. i feel that u/s is one of many tools that should be used to diagnose endo. on the one hand, it is no def. indicator and actually isn't that great of a tool, if you rely soley on it. but, if you have some unknown pain and an u/s is ordered, if you have the type of cyst i mentioned and its found, i feel that is a positive thing. just understand that if you have another u/s and the doc says "no endo...you're fine" that this in not necessarily true. i have a friend who's mom and aunt both have endo...she has had symptoms for years. her doc "felt" around (some experienced docs CAN feel what they think are large endo growths, but again, this is not definitive) and declared her endo free! i told her (nicely) that i wouldn't trust that and to seek a second opinion but she liked her doc. for the past year, her and her DH have been trying to get PG w/no luck. coincidently (or maybe not...read on) she just had to have her appendix removed and afterwards the doc asked, "were you aware you have endo? we found it on your appendix..." (FYI, i also had to have my app. removed 4 years ago but no one mentioned finding endo even though i am quite sure i have had it for 10 or more years). my point in all of this is you need proper diagnostic tools to even begin to try and treat endo successfully. going with an endo specialist is SO important...i can't stress that enough. and do research so you canmake informed choices on your treatment options. later, i will try and post some book titles i bought and have found useful. basically, there is no cure, but "better" methods of treatment. i wish you luck in your journey!
post #6 of 48

book recommendations

The Endo Sourcebook by Mary Lou Ballweg
Endometriosis: A Key to Healing Through Nutrition by Dian Shepperson Mills


Okay, really any books sold at the Endo Assn. website
http://www.endometriosisassn.org/cart_book.html
post #7 of 48
I have it but not as bad as some of the mamas here. Just very painful periods and had a hard time getting pg with Abi. The best cure for me was pregnancy, and after my last pregnancy I went on the pill. I allow myself a period every 3 mos and they are a lot better on the pill (very light and no cramping).

Darshani
post #8 of 48
Thread Starter 
Ok, thought of my first question. Can adhesions appear (the pain from them) months or years after surgery? My daughter was born via emergency c section two and a half years ago, so there is another thing for me to consider. The surgery was a rough and ready one, as we were both dying (baby and me), and the cut took 21 staples to close, (leaving a very long scar, may I add!). It was also not a very "tidy" looking cut, and healed with a thick bit in the middle of it. So adhesions can take their pick of me where to form *sigh*.

The pain is very left ovary in location, both back and front, with the pain very great all across the top of my butt/lower back and in the site of the c-scar, and actually extends down my thighs. I have IBS symptoms (man, can it get worse, sorry for the whining). I also have pain all through my belly, probably due to the irritable bowel thing.

Thanks for the recommendations of reading, I am going to have a look later today at the sites and other things online. thanks everyone, nice to know I'm not alone - no one I know IRL has this problem.
post #9 of 48
yes, adhesions can start forming immediately after surgery, but in my case, it was usually about five or six months after surgery that they started really bothering me (after my first lap, and again after my c/section). www.adhesions.org is a great place for more info.
For me, adhesion pain is a very sharp, tugging, pulling, tearing sort of sensation that comes on suddenly when I move the wrong way. Feels somewhat like when I sprained my ankle, except in my abdomen.

From your description, it really sounds like you have endo in the cul-de-sac, that area behind the vagina and uterus where is very hard for less-skilled doctors to remove endo, but which is a very common place for endo implants to be found. do you have your post op reports, or a video of your last surgery? They can be very illuminating.
post #10 of 48
oh man,
i could write a book on endo.
i have a loose ds so i'll post more later.
post #11 of 48
Thread Starter 
Aha! I just had an epiphany. My first (only) U/S showed cystic ovary with "fluid in the cul-de-sac". This is what prompted the surgery because it all pointed to cancer. I have photos of my insides, but no video. And the fibroid is quite big in the photo, but the doc said it wasn't big, "women have much bigger" *sigh*. So I still have that also. But the cul-de-sac wasn't mentioned, it was sort of avoided in conversations. I have a feeling it is all coming back, all the endo tissue is growing again. Bummer. More reading....off I go...

Thank you Stacy, you are my rock at the moment.
post #12 of 48
((((Calm)))) first work on your diet, and see if that helps with your pain levels. It's amazing the difference I experience from just eating one candy bar or one can of soda. Sugar for me is the worst offender (followed by dairy and eggs), but I know other women who find that red meat and/or wheat affect them more. I also feel better when I drink tons and tons of water every day.

If you need some help finding a specialist in your area, let me know where you live and I might be able to help. It is my opinion and personal experience that surgery is the best, most effective treatment option available to us right now.
There are lots of online support groups for women with endo, they have been my lifeline at times, especially when the pain was at its worst before I found my surgeon and had the endo effectively removed. I don't know how many nights I stayed up all night long, chatting on ICQ or IM with other women around the world who were going through the same thing I was. I'm so glad I've been of some help to you.
post #13 of 48
I also have endometriosis. I had my laparoscopy in 2000, and luckily my doc was a specialist. She removed it from both my ovaries. She took pics for me. Pretty amazing. Anyway, I haven't had much problem since. I still get bad cramping and heavy bleeding, but it was so much worse before...plus I used to have pain during ovulation and that doesn't happen now. I know it has only been four years and I've been pregnant 3 times since (which helps temporarily), but I feel hopeful. I've changed my diet and eliminated a large amount of toxins from my home/life. Hopefully it will remain dormant. The best thing for me is this: My doc told me at the time I may not be able to get pregnant due to scar tissue. I have since had 2 beautiful little girls and couldn't ask for more! I refused any hormone therapy, and don't plan to have a hysterectomy, but if it ever gets to that point, at least I have my babies.
post #14 of 48
I skimmed your other responces so sorry if I'm repeating.

I have endo. I had it removed in 2001 by a surgeon who specalizes in excision. After the surgery I had even worse pain. My body really hates having to heal from anything and extensive lap sugery was just too much for it. After months and months of physical therapy and various natural therapies I got feeling much better.

If I had it to do all over again I would go the natural route before surgical. What made a huge difference for me was Natural Progesterone Cream. I used the method described at www.natural-progesterone-advisory-network.com in their e-book (totally worth the price IMO) I already didn't eat sugar or red meat so I knew that those dietary changes wouldn't help me. Also homeopathic mag phos helped a ton when I would have acute pain. And taking cod liver oil every day helped as well. I only had pain when af came but sometimes it would confine me to my bed. I also wound up in the er from it once.

Pregnancy is not a cure, even though that myth continues to be perpetuated by many Dr's and others. Many women who previously had not had endo have been dx'ed with it after a c-section and it is found in the c-section scar. Since endo is just the normal uterine lining tissue growing in the wrong place that makes sense.

My best advice to you is to do a ton of research on it. Read everything you can get your hands on. You will read a ton of conflicting information. I don't know how to tell you to find the truth, other than to go with your gut and with your experiences. The best advice I can give it to try the least invasive cures first. Ones like diet changes and exercises that can't have adverse effect. Work your way up from there. I paniced (I was a newlywed and discovered that sex was excruciating, I thought I needed an immediate cure) and went for surgery. I now would never do that. Thankfully I found people to help me recover from it. (I was unable to work for 6 months it was so bad.)

I personally will never use lupron or take birth control pills to control my endo. Based on my research I beleive that it makes endo worse in the long run and carries risks that I am not comfortable with.
post #15 of 48
Thread Starter 
I'm back to say that I have been pain free for a week. Just little niggles now and again, but it is mid-month for me, and this often happens. I have written down lots of stuff from this thread (thank you all) and I am off to battle my diet and check out the progesterone creams. Don't be surprised if this thread is resurrected next month with an update of how I fare.

Stacy, (or anyone else) how is coffee for the problem, is tea better, or are both just bad? I have been meaning to get off the caffeine (both tea and coffee - naughty girl) for ages, even though I only have two cups a day, I put three sugars in each! I have also gone right into looking into a macrobiotic diet, buying all the seaweeds and organics and such to start on that.
Off she goes...
post #16 of 48

Hormone Disrupters

I read an interesting article in this month's "E (The Enviironmental Magazine)" about chemicals in our daily lives that are known as hormone disrupters. They cause many problems for women and unborn infants, and are linked with endometriosis. Dioxin, which is caused by the chlorine in the bleaching process, is a contributing factor. How many bleached paper products do we use every day where these chemicals can be absorbed into our bodies? Coffee filters, tampons, to name a couple. You might want to do a search on this, to find more info. Check the library for the current issue of E, and read the article (or maybe you can access it online...haven't tried). Interesting, and makes more sense than I care to admit.
post #17 of 48
Just subscribing to this thread

Im not sure if I have endo, I asked my dr to check for it last year but she said that they don't check for endo when you have been pregnant in the last 5 years... which it has now been 6 years and Im off to find a new dr.

I'm not sure if I have endo since the main symptom seems to be painful periods and although I have a day of cramps ranging from mildly uncomfortable to quite painful, they can be relieved with a hot water bottle.

What makes me think I may have it is:
-my mom had it and had a hysterectomy at 28, I am 30
-I have been ttc for almost 2 years
-I have 4-6 days of premenstrual spotting
-I have cramps when I pee from when my period ends until ovulation. This is a weird one, and I have been checked numerous times for bladder infections and never have had one... I have been taking Vitex and it has helped a bit with this symptom.

I'm a little nervous about going in for a laparoscopy but I believe that is the only way to find out for sure.

Calm, definitely let us know how you are doing next month.
post #18 of 48
Astrid- Sounds like you may have endo on your bladder. Not fun although not exactly uncommon. Most Dr's aren't skilled enough to remove it from there so if you do decide to get a lap get it with one who is skilled enough to excise it from your bladder (not laser or electroquagluation or however that is spelled). You do need a lap for a definative dx but remember that a lap is surgery and you will have to recover from it and it comes with all the risks of surgery (adhesions, anestesia, infection etc) It is relatively minor surgery but mine put me in the hospital overnight and out of work for 6 months. No one could have predicted that (I expected to be back to work in a week at most). I went for a second opinion after the surgery and another specalist basically said the my surgeon is the best one he knows and he is glad that he didn't touch me if I reacted so badly when she did.

Like I said before I would try less invasive things first, diet, exercises, herbal remedies, etc before going for a lap or taking any drugs. (other than pain killers) I feel like I learned that the hard way and like for others to fully consider the risks before jumping in to a lap.

Patty
post #19 of 48
Thread Starter 
"I asked my dr to check for it last year but she said that they don't check for endo when you have been pregnant in the last 5 years... "

Astrid, may I be so rude as to say.....WHAT A RIDICULOUS THING TO SAY! The doc, not you I mean. I never had any problems before I had my baby. Then within a year, I was riddled with problems. Five years?! I can't believe a doctor would not check something for so long (for any length of time to be honest) based on such flimsy reasoning.

I am glad to hear you are going to a new doc. I hope you don't have it, yet I also hope you find something there so you can be rid of it. I think the only thing worse than pain is not knowing why you have it. We weren't meant to have pain, and it occurs as an important signal for us to follow. Good luck and keep us posted.
With love.
post #20 of 48
Calm, what you said wasn't at all rude, it was true!! I should have known to disregard her advice because when I went to her a couple years before for an abnormal amount of headaches I was having she told me to 'just take motrin'

Patty, Im sorry you had to go through that. A lap is definitely not something I would do without a lot of thought. I have a 6 year old Im with full time and I can't be out out of commission for too long. I've been taking Vitex and every month Im noticing less pain - I had read that it may also referse some of the damage done by endo. Im going to check out the endo diet stafl referred to since it can't hurt

Thanks for your replies and please keep us informed on how you are doing Calm.
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