Enodometriosis - Any thoughts please?

Hello Everyone,

I was hoping that I could get any help or thoughts regarding this disease. For the past few weeks my wonderful girlfriend has been experiencing abdominal pain and general discomfort. She visited a doctor last week and was awaiting test results when then pain became severe. After a visit to the emergency room, the doctors believed her problem to be an ovarian cyst. However that was dismissed after a sonogram yesterday, and now the favored prognosis is Endometriosis. The chances of this disease, the doctors said, are high due to surgery to remove a cyst 3 years previous. After another appointment this morning, they have decided to schedule minor surgery to find the extent of the disease.

As of yesterday I've been researching the disease on WebMD, as well as the Endometriosis Assn's website. If this is something that she may be going through then I want to be as informed as possible so that we can deal with it together. And the more I understand about this hopefully means I will be able to offer more support. So far I have learned the basics of the disease, what they think may cause it, treatment options (although it is uncurable), and so forth. I'm trying to be careful, taking the info I get with a little grain of salt though. I realize that researching illnesses on the net can sometimes lead to expectations of the worst due to the blunt nature of the information. I may also search for some communities or message groups dealing with the subject, but wanted to ask for any thoughts or comments here first. From what I have gathered this disease, unfortunately, is not uncommon and affects roughly 10 % of women.

If anyone has any thoughts or experiences with this disease and is willing to share, I (we) could use any information we can come by. It is a bit scary for her, (well, both of us), especially with thoughts of possible children in the future. If that should change I'd reckon that we'd make it in the long run.

Oh well. Thanks for your time and letting me speak.

Peace,
Robby

 

This site seems to have some decent information...
I thought I recalled someone mentioning that depo-provera was a method of treatment for endometriosis, but it isn't mentioned on here nor on the depo website so, um, I think I'm wrong. Anyways...

They say surgery is usually the recommended method, unless it's quite mild endometriosis, which your gal's doesn't sound like.

I hope it turns out ok for her!


http://www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/pages/Endometriosis_treatment_options?open

 

Alot of the women in my family have it. My stepsister also has it. I've never taken much time to read up on it, but based on the people I know, it's not a terrible thing, unpleasant maybe, but not life-threatening. It hurts really bad when you're on your period and makes concieving children a little more tricky, but not impossible. It doesn't seem to affect my family members very much though, except for the pain.

I'm sorry if that's not much help. i guess in a few situations it can be bad, but as far as I've seen it's not that big of a deal.

 

My mother had it, and her uterus was removed in the mid 70s, when she was only 35.

I was dxed with it about 7 years ago. I had an endoscopic procedure, they removed several "implantrs" (as the growths are called) and then put me on Depo. I felt horrible from the Depo, I gained 40 lbs (and I only weighed a little over 100 at the time of the first shot) got depressed, and didn't get a period for 6 months after the last shot. When I finally DID get a period it was as bad as the ones before the treatment! The OBGYE who takes care of me when I am pregnant says he never uses Depo anymore, and uses endoscopy and other drugs. Getting pregnant again actually was the best treatment for my endo. I still get some bad periods, but nothing like before. I also am in perimenopause, so my periods are lighter than before anyway.

Don't let her let ANYONE talk her into having a hystorectomy! Some doctors are just so causual about this most important organ. It is not just for periods and baby carrying, it plays an important part in sexual response and even manufactures female hormones on it's own. Keep it, unless you have something in it that will kill you, like cancer, and endo is rarely cancerous.

I hope she can get an empathic doctor who will treat her well during this ordeal.

 

riiight, that's how I heard about Depo and endometriosis - my previous manager had endo when she was younger and was started on Depo for it. She hasn't had any problems, but like Maggie says, some people react quite badly too it. My manager also only had a case of it slightly worse than mild, it certainly wasn't severe enough to warrant surgery without exhausting all other possibilities.

Anyways, make sure your girls knows about sideaffects too! Some can turn out really awful for women. I know the moodiness I get from Depo can be awful, but it only lasts for a day or two after I get my shot.

 

I have it. Ouch!

 

My mommy had it...Thats why should couldent have kids and thats how she got me...( I was adopted) I asked her about it...She said she was in pain...and her
hysterectomy(sp) was the only option they gave her.

 

I also suffer from Stage 4 Endometriosis..and I also suffer from ovarian cysts that are 7 or more cm bigger..
So, i can definitely relate to your girlfriend very much..
If you would like you or your girlfriend feel free to pm me or email me anytime. With anything, questions, or just to talk to someone..
~kayla

 

Sorry it took so long...

But thank you all for your responses. Every little thing helps tremendously in trying to understand this disease. Thankfully we're becoming more informed and things don't seem as bad as they first did. She will be going in tomorrow for an endoscopic procedure to determine the extent of the endometriosis and (for lack of the medical terms) use a laser to remove the affected cells. It's still a little scary, especially for her, but at least she now has an idea of what to expect.

Once again, thank you all for your help. You guys rock.

Robby

 

I wish her luck...
Is it the laparscopy, where they go through the belly button?

 

I have Endo also, i was diagnosed with it only recently after having suffered with it for years with them telling me it ws only period pains and to get on with my life it is severe now due to years of mis diagnosis and my chances of having chldren are slim - they offered my a hysterectomy but one day i would at least want the chance to have children of my own s i'm holding out in hope it hasnt made me totally incapable of carrying children!!


your other half is very lucky to have had surgery to look into it so quickly, and i wish her all the luck in recoving and whatever treatment she has

 

that is exactly what happened to me. Cann you believe those shitty ass doctors, they make you feel like you are crazy, and that its all you. And mean while you are in agony and everything. What abunch of asses, am I right..
Makes you just want to scream and yell, and want someone to just help you cause you know, its your body, you know something isnt right..

 

Thanks.

Yes, it was the laproscopic procedure. Luckily they diagnosed it in it's early stage and found only one small affected area. It was amazing how they were able to show us the pictures of the surgery minutes after they were finished. They removed the one small red spot by removing the layer of tissue that surrounded it. The doctor also severed two nerves that he said would alleviate the pain caused by the disease in years to come.

All in all, things went extremely well, she was back home the same day, and the effects of the endo were minimal. She's obviously in some pain, which is being managed with meds, but considering she went through surgery just yesterday she's able to function quite well. There are some very good things to be said for advancements in medicine over the years.

Thanks again

 

I am really glad that things went well and that she is doing better

 

Robby, can I just say that your gf is lucky to have such a supportive partner? I've had endo since (we're assuming) I was about 14, although they finally realized that's what it was about 2 years ago. I too went through the "you're just a wimp, periods are supposed to hurt" which is totally bullshit... and why I don't have male doctors anymore. Endo isn't just a bitch on your body, it's a bitch on your emotions, too. Nothing is worse, at least to me, then feeling so badly abnormal. When it flares up, it flares up with gusto, and leaves me both physically and emotionally drained. Every time it hurts, it makes me wonder if I'll be able to have children... but that's another story. I'm glad your gf was able to have the scope, I hope it wasn't too bad for her. Some people react to anisthetic differently than others - I have a friend who violently vomits from it... ewww. Anyway it's wonderful that you're reaching out to her... I'm going to suggest one thing, from a girlfriend's point of view... there are going to be times when it flares up on her, and she's going to need you. Just be there for her, hold her hand, rub her back, whatever she needs... and don't make her feel like she's putting you out. I have a wonderfully supportive boyfriend too, but there were other boyfriends before him that made me feel like garbage just because sometimes the pain was too much and I had to spend the evening on the couch watching tv or something. If you want to PM me, feel free, I'm totally into talking about endo. Good for you for wanting to know more.

 

I had my last baby after delayed diagnosis and treatment for endo. I didn't even have to try. Unless your tubes are blocked (and that doesn't happen until the disease is really progressed, I probaby had it for 20 years....and five pregnancies) you should be able to have babies.

Good luck. My OBGYN is a man and is very empathic towards womyn. I have found womyn doctors actually more likely to call you a wimp for "letting the pain get in your way." Personally, I prefer male doctors, but that is me.