Some people go in for a routine laparoscopy and find out they have endometriosis. For some of these women, they feel great after surgery and never have issues again. Then there are those of us who are back to square one (or worse) after six months. This particular post is geared more towards the second group, although anybody who is seeking treatment for it could benefit from it.

My RE is a sort of endometriosis expert, I guess you could say. Which is the second reason I chose her (first is that she's the only one in a 100 mile radius that does IVF). I've been blessed to have her oversee my case for the last four months. ANYway... back in March of this year, I had a laparoscopy and had stage 3-4 endometriosis cleaned out. I did two regular treatment cycles afterward and one agressive treatment cycle that was supposed to include IUI (a different story explains why that didn't actually happen). After that, we were on a five month "break" but not by choice. During those five months, I had increasing pain in my abdomen - and not just the lower part. The last two months, most times I ate, I'd end up doubled over in pain for several hours. Sometimes, I'd turn just a little differently, or stretch a little further than usual, and it would result in excruciating pain.

My new RE ordered an HSG to check for any issues prior to beginning the IVF process. There were two small polyps, so we scheduled the hysteroscopy, and another laparoscopy just to clean out any regrowth of the endometriosis.

The hysteroscopy took 20 minutes. The laparoscopy took 5 hours and 40 minutes. The endometriosis was "the worst" the doctor had ever seen - after only eight months. Now I get to the part of this story that can benefit you (or someone you know).

After I finally got some-what recovered, we discussed further treatment options - in over five hours, she wasn't able to remove everything. She'd done some major work - the pain after eating was caused because the endometriosis on my intestine and ovary had caused enough adhesions that my small intestine wrapped around my ovary and got stuck down very firmly with adhesions. My uterus was completely to the left of my midline, being pulled by adhesions. Large intestine was stuck completely on one side to my abdominal wall AND uterus. You get the idea...

Needless to say, some form of aggressive treatment needed to be tried on me. The endometriosis was to the point of not only causing a lot of pain, but also causing serious health issues. My RE and I sat down for an hour, and I got educated. Here is what I learned, in a nutshell.

Endometriosis has always been thought to simply be uterine lining tissue that grows in other places in the body (which it shouldn't do). When a woman begins her menstrual cycle, not only does the uterine lining shed, but the endometriosis begins bleeding as well, which causes pain, inflammation, and scarring. Treatment has traditionally included hormonal birth control, surgery to remove adhesions and endometriosis implants, and hysterectomy/ovectomy. Many physicians and patients used to (and some still do) believe that pregnancy was a "cure" for endometriosis. All of this has been proven only semi-correct, in the last six months or so.

Researches have recently figured out how to grow endometriosis in a lab setting, and have been surprised. Firstly, while the tissue IS similar to the lining of the uterus, it is NOT the same. Secondly, endometriosis thrives on estrogen (not synthetic, but the real deal that our bodies can produce). Without estrogen available, it would cease to grow and eventually the cells would die. This second fact has been known for a while, which is why hysterectomy/ovectomy, pregnancy and birth control have both been effective ways of at least controlling symptoms. HOWEVER, the third fact, shows us that these treatments aren't fully effective: endometriosis is able to produce it's own estrogen supply. It DOES use the estrogen produced by the ovaries, but it does NOT require it. Which is why women who've had hysterectomies and ovectomies and are on birth control may experience a lessening of symptoms, but it's temporary (maybe lasting for years in the case of hysterectomy, but it WILL come back) and partial. Even with the removal of other estrogen production, the endometriosis can still thrive. Fourth fact: A drug that was originally developed to treat breast cancer in post menapausal women, and in recent years, has been used off-label to induce ovulation, works by stopping every cell in the body from producing estrogen. It does this on a molecular level - the final acid synthesis cannot take place. When this happens over extended periods (Say, three months or so) breast cancer is less likely to re-grow. When it happens over a five day period (as in fertility treatments) the body begins producing follicle stimulating hormone. The sudden surge of estrogen at the end of the treatment course causes the follicles to begin the maturing process. Now comes the fun, wonderful news... when this medication is present in consistent concentrations over a period of at least three months, endometriosis begins to die. It is unable to produce any estrogen when this drug is present, and therefor, in essence, starves. :-D As some of you have figured out, this drug is letrazole, known by it's brand name Femara. It is in the process of being approved for post-surgical treatment of endometriosis, although it could be a while before that happens. In the treatment of endometriosis, it is taken once a day, generally at the 2.5 mg dosage. It is used concurrently with continuous hormonal birth control (no breaks for periods). The synthetic estrogen in the birth control, which does NOT feed the endometriosis, prevents the hot flashes and dryness that go with no circulating estrogen. Calcium needs to be diligently consumed, whether in food or by supplement, as the lack of estrogen can cause calcium to leech out of your bones. Obviously, the treatment isn't without risk. But it's a HUGE breakthrough. It's only recommended for AFTER as much of the endometriosis as possible has been removed surgically. But this is the FIRST time that anything has been shown to actually kill the endometriosis (other than vaporizing it with a laser, which, well... yeah).

SO... if you or someone you know is fighting endometriosis, PLEASE ask your doctor about this. If they don't know anything about it, or say it's too early to be a treatment that can be recommended, push the issue. Find a new doctor if you have to. In the 14 days I've been taking it, I've already noticed an effect - the continual progression of pain has stopped. The areas that were already sore still are, but no more new ones. Which is a big deal to me. I don't ovulate and I DO have high estrogen levels naturally, and for the initial time period after surgery, before I started the femara, I could feel certain areas of pain that were spreading, and new areas were popping up, every few days. I've had very, VERY minimal side effects - I DO get mild hot flashes, but even that is diminishing as my body adjusts. The endometrioma inside my ovary is already beginning to shrink.

ANYway - I am not a doctor. I have no guarantee that this is the final answer - but I DO know that this is at the very least a very positive step in the right direction. My doctor has several patients who have completed the course of treatment, and have NO pain, NO evidence of endometriosis, and those who have been undergoing fertility treatments have since gotten pregnant (within three months of ending treatment). To me, that's the really appealing part. I know it won't be that way for EVERYone - even a perfect couple with NO issues can take up to 13 cycles to get pregnant without it being considered abnormal.

I thought I'd share this, as I do know that there are quite a few ladies here who are dealing with endometriosis.