Endometeriosis?

Hey all,

Is anyone here diagnosed with or familiar with endometriosis? I've been struggling with chronic fatigue and chronic pain for several years. I have been diagnosed with fibro and chronic fatigue about four years ago, and was recently diagnosed with hypermobility syndrome (and potential Ehlers-danlos) as well as dysautonomia. Even though I think that the hypermobility and dysautonomia explains my symptoms in part, I don't think its the whole picture, either.

I recently read about endometriosis and seriously suspect that I have it. I have lower back pain and nerve pain in my legs and fatigue (which doctors cannot explain), all of which get really bad for a week and a half leading up to my period, and slightly less bad for the week during my period, and then my symptoms reduce drastically for about two weeks after my period but are not gone all together. Sex or any sort of penetration (like inserting a tampon) is generally really painful during and after, especially around my period. Sometimes its almost unbearable. I have really painful cramping during my periods, though they aren't exceptionally heavy. I also been having insane mood swings a week before my period unlike anything I've ever experienced before.

Anyone have any experience with this, and advice they can give me? What kind of doctor should I ask to go see?

I'm on birth control now and it seems to help (apri) but am considering asking my doc to get the shot that keeps you from having your period all together (forget what its called), would that help?

Thanks so much for reading!

Thanks Sherrine

I thought it'd be a gyne that I'd have to see. Right now I'm an apri, do you know what your daughter is on?

I was put on a medication for suspected endometriosis several years ago, one which stopped my periods (sorry I don't remember which med). Whatever it was, it was horrible! I actually lost some hair just above my forehead, it dried out my voice somehow, and I still struggle somewhat from those effects, and seemed to cause cramping muscle pain, mainly in my legs. I stopped it fast!

Turns out my problem was more colon-related than anything to do with endometriosis. I didn't take any more treatments after that--it was not fun, to say the least. This was in the mid-90s, and I would hope there are better treatments by now for endo.

I hope you get the endo under control soon. Best wishes!

Ok, 1~ yup, gyno is who you need to see..

2~ What you may have may not be endometriosis, but adanomyosis (sorry, can't spell).. and the difference is basically: instead of spider web like growing IN the uterus (endo), I had spider web like things growing on the OUTSIDE of the uterus (adno)..and had to have a hysterectomy.

I did take the depro shots for years, and USUALLY with bigger women, they don't get their period, but smaller women get it all the time. At least that is what our doc found out in a questionaire in her office. And from talking to others, that is what seems to happen. Just some FYI there...

And if you have migraines, you can't take any birth control. :( So that wiped them out for me altogether anyway..
Hope you feel better nad get some answers soon..let us know what happens!

Luvzminis, You might have been given Lupron. It works well for some women but it can have horrendous, permanent side effects. It can actually cause chronic pain and tooth loss. I know a few women that believe Lupron triggered their fibro.

A total hysterectomy helps some women but it is no guarantee who it will help. Some women end up with all the problems related to a hysterectomy (hot flashes, bone loss, etc) and still have the same, or worse, pain. Removal of the ovaries can help because endo thrives on estrogen but some women continue to have endo pain even without ovaries. Plus, if you take hormones to ease the menopausal symptoms, you may end up back where you started. Far too many doctors believe that hysterectomy cures endo and many desperate women listen. I know too many women that have had a hysterectomy and still suffer from endo.

Birth control pills can help some women. The constant dose pills work better than the varying dose pills. Many women take the pills continuously, skipping the placebos, so they don't get a period. You might want to try this before you try Depo-Provera.

The most effective treatment for endo is surgical removal of all of the endometriosis. This requires a specialist. Do a lot of research before you agree to any surgery. Ask if the surgeon plans to remove all of the endo at once. Do not agree to "diagnostic" surgery where they say they will look and then you will need another surgery later to remove the endo.

Adenomyosis can be extremely painful. Hysterectomy is the most effective treatment. You can have Adeno with or without endo.

There is no single best treatment, some things work well for one woman and make it worse for another. Do a lot of research BEFORE you try anything.