Endometriosis

[livingwith]

I am a 34 year old female, with 2 healthy children from previous normal pregnancies and births. I found out I had Endometriosis during an emergency Laparoscopy, stemming from a ruptured tubal pregnancy. I was to find out later that the endometriosis was the cause to my painful monthly cycles and the largest factor in why I had a tubal pregnancy, v.s. a normal pregnancy. My cycles have grown increasingly painful. My Ob/Gyn and I have discussed multiple options.
My husband and I chose to try for ...Read the full article

[racerchic]

I had 2 surgries just like you are going to have and I didnt ever have any luck. I ended having a total hysterectomy at 20. I never was able to have kids. You will have to keep having surgries if u do not have a hysterectomy. It ruened my life. I had 4 total surgies and never felt like a healthy person till my hysterectomy.

[katy]

I'm a 59 yr old RN....too lazy to re-write this, here is an excerpt from an email I just sent my neice with edno who I am trying to give support and guidance to through the bungling diagnosis and treatments so prevalent in our country for too long now:

The laparoscope is a good idea for diagnostic purposes. Ya just want to agree before hand what they'll do when they get in there without asking. Biopsies are fine and removing any endometriotic materials (glue like webbing adhesions, cysts, that sort of thing) but you don't want to lose your ovaries in the process. It's not necessary and they AND the uterus are necessary for post menopausal health support.

That's the problem I had when I went to a GYN at Mayo clinic back in 1986. I went in and had to suggesst it might be endometriosis because of all the reading I'd been supplied with from what was then a new grass roots group in Wisconsin (otherwise I'm pretty sure they wouldn't have ever gotten to that diagnosis until several procedures had been done - they barely knew anything about the problem then....but there are still pockets of medical areas that remain pretty uneducated about all the signs, symptoms and treatment options.)
Anyway, I went in and they started off saying "we'll need to do surgery - it's definitely not cancer but" but when I started asking them what all they might do if I was under anesthetic the list of possibilities got so long and threatening ("well, we'll just remove anything that looks questionable" that included EVERYTHING if they decided to.)

They refused to treat me with danazol (an anti-hormone that stops your periods and lets all the endo dry up and go away....cycle of hormones to support the periods are what feed and spread and irritate the growth) cuz it was too new a drug and they had no experience with it. I left there in tears 4 hours and several docs had been brought into the room by then to, in the end, convince me I "probably had cancer and might die if I didn't hurry and consent to the surgery." I left in tears of fear maybe they were right....I might die.

I even got a follow-up letter from their legal department to warn me again that I could die and I wasn't making a good decision not to have the surgery. Too many docs don't volunteer much information unless you ask a lot, not even the stuff they know, much less the stuff they just are up to speed on. Take a list with you. Educate yourself about your options for treatments.

They also said they would not give me the treatment I wanted (danazol) because it "couldn't possibly" get rid of such large blood filled cysts. Well, they were totally wrong. A year later everything was all gone in my ultrasound.

There are so many women my age who have had so many unnecessary total hysterectomies just because it was endometriosis 20 years ago. And it's still being treated that way in some areas of the country.
I knew I had to get out of that pocket of medical thinking. That why I went to a GYN in Colorado my sister went to. He wasn't an expert in the field, but he WAS willing to give me the credibility of having done my homework and even said "you have more info on this than I do right now".
However, I still had to work with him to get him to my goal. I had to agree to take birth control pills first (an old method of treating endo that only makes it worse for most women) but called him up in a month and said "it's worse" so he'd go on to my choice of danazol. Even then, the standard dose and period of time to take the stuff was only known to the Endometriosis organization I'd been contacting in Wisconsin. I had to call him a couple of times to get the dose up to the level it needed to be for as extreme a case as I had and I had to talk him into taking it for twice as long as recommended. (In those days it was for only six months)

I was totally cured and of the long list of scary ridiculous "possible side effects" never occurred. I never grew a beard, lowered voice, etc. It's a testosterone anti-hormone type med. The only thing it did was temporarily change tthe text of my hair to more coarse. It took it at a max dose for 14 months........the best months of my life physically! No periods. Wow. Great. Unfortunately, it's only for those that don't plan to have any more children. There might be another product on the market by now. I believe I read about something that's a nasal spray or something, so it's worth a little research that I haven't done in a while.

Anyway, my new doc was just as conservative as the rest but knew I'd come to him for alternative treatment and was willing to listen to me and work with what I wanted. (I'd already had 7 consecutive miscarriages.....I wasn't having any more children even though I wanted more) But I had to be sweetly demure in my suggestions of "well, what I'd really like to try doctor is...." and then I'd just work him up to the next step of my goal as we went along.
I had to compromise, to make him feel safe, a little to get what I knew I needed in the end. Sixteen months later, after 14 mos. of max dose of danazol, my ultra sound showed all cysts gone, all pain gone, pain with constipation that was excruciating gone, periods returned and I never had a bit of pain again. I was in my mid 30's at the time.Didn't stop having periods for the next 15 years. My hair even changed back to it's original texture. That's my story. I never had the laproscope done, never had the biopsies, never had surgery.

Endometriosis is still a misunderstood condition. It takes so long to get the medical community to listen to we grass roots folks but we always turn out to be right. In my lifetime I've seen it (too many cesareans, too many mastectomies, too many mamograms and biopsies unnecessarily and too many protrate surgeries, etc. etc.)
I heard on the news just the other day a movement to get docs to start telling their patients their options for mastectomies that they don't bother to inform the patient - apparently many are done without the possibility of reconstrution.....
something I just took for granted until I heard that.
Katy, RN BA LNC