The suppression scan this morning showed that I now have an endometrioma on both ovaries. I didn't have them in August - or if I did, no one mentioned them. So they've appeared since my last medicated cycle. According to the doc there is good ovarian tissue surrounding them, with plenty of antral follicles, but she needs to see the consultant (Dr Candour) to see if that tissue will be accessible for egg retrieval. It could be that the endometrioma gets in the way and then they are afraid of puncturing it during egg retrieval.
So I'm feeling rather upset. First, that in less than six months of my laparoscopy, I have developed endometriomas on both ovaries. After 20 years or so with no treatment, in May I only had one endometrioma. How did I get two in five months? What does that bode for future disease progression? Second, of course the fear that they'll cancel this cycle and tell me I need another lap. Which would really make me sad and frustrated.
Third, it re-awakens the fear I had when I first realised what having endometriosis meant (bizarrely, I don't seem to have blogged about this). The fear that I will never have biological children. After our visit to Dr Candour after the lap (linked above) I did a lot of research on endo and saw data that suggests that the average lifetime fertility of a woman with endometriosis is 42%. That's less than half a chance to have a baby in my lifetime. Since then I've managed to push this fear away by thinking about all the good news on my fertility - my hormone results, H's sperm count, etc. But today I'm freaking out again. Even if we do get pregnant, there's the risk of miscarriage.
I'm wondering what else I can do to help me get and stay pregnant despite this disease. Have any of you tried diet to treat your endo? To any effect? I've found websites saying no dairy, meat, wheat, sugar etc. but isn't this just what modern alternative medicine ppl say as soon as you have any kind of disease? What's the evidence? Of course it's worth it if I can have a baby, but will it really help? And these suggestions raise other issues. Some websites say drink soy instead of milk, but since soy is a phytoestrogen, isn't that the worst thing you can do? And where do you get calcium from if you give up dairy?
Any advice much appreciated. I'll update with the doctor's call later.
No advice here, just stopping by to say that I feel for you. Hope you get some answers soon, and I hope they're good ones.
Posted by: pixi | Tuesday, 18 October 2005 at 11:56
Oh Thalia! We're having similar weeks, aren't we? I'm sorry. When do you see Dr Candour? At least he's wonderful.
They found mild endo after my lap- I did some research on it, but concluded that it is still essentially a mystery to the medical community.
There are drugs you can take to supress it, so you might not have to have another lap, if you need to get rid of it at all.
The other bit of advice I got was from my acupuncturist, and I think it's mostly hocus pocus, but I'll pass it on for what it's worth. There is a theory that too much estrogen in our diet and in the environment contribute to the endo. She recommended eating all organic, especially meat and dairy, to avoid the hormones that are sometimes added. She said red meat was especially bad. She also said that estrogen is found in plastics and petroleum (Really? I thought it was kind of weird, but-) and that I shouldn't drink water out of plastic bottles or use any kind of lipstick or lip balm that had petroleum.
I personally think there is no end to food superstitions (and other mythologies) these days. They can get us so twisted with guilt that sometimes I think they do more harm than good. Basically, they don't know what causes endo. They just have ideas. Those stats are the same thing- they may or may not apply to you. Don't go assuming your chances have been cut that badly. Go to Dr Candour, and remember we're here for you.
Posted by: fisher queen | Tuesday, 18 October 2005 at 13:53
No advice, but I just wanted to say how sorry I am for the bad news. I hope you're able to get some answers soon about what this means for your cycle and for everything else.
Posted by: Lindy | Tuesday, 18 October 2005 at 14:29
Oh, Thalia, I'm so sorry about your news. I too have endo and for a while embraced the no wheat, no dairy, no meat diet. I don't know if it made a difference, but I do know it made me miss some of my favorite things. I eventually felt like I was depriving myself too much and relaxed a bit. I hope your doctor says you can continue.
Thinking of you.
Posted by: zhl | Tuesday, 18 October 2005 at 14:43
I wish I had advice. I'm so sorry you're having to deal with this.
Posted by: Amanda | Tuesday, 18 October 2005 at 14:55
No advice here either, but hoping for good news for the retrieval and no more surgery.
Posted by: Lisa P. | Tuesday, 18 October 2005 at 14:57
I had a brief flirtation with the food mythologists, and ended up finding the whole thing completely unconvincing and boring. But, during my little ride on that bandwagon, I did learn some things that can help with your questions if you do want to start cutting stuff out. Instead of soy milk, almond milk (which has calcium) and other nut and grain milks are a good option. I've got to like hazelnut milk so much that I won't have anything else on my cereal any more, as a matter of free choice unconstrained by silly diet stuff. And an excellent source of calcium is dark green leafy vegetables. Kale, collard greens, bok choy, etc.
The other thing I learned is gluten-free bread is AWFUL. There is just no way around that one.
I wish you so much good luck.
Posted by: reprogirl | Tuesday, 18 October 2005 at 17:56
I'm so sorry to hear your news! What a shock it must have been.
I don't have any research to back up my beliefs on soy, but to me the warnings about phytoestrogens in soy affecting fertility doesn't make much sense to me given the fact that soy is a huge part of most Asian diets. And no Asian country that I know of, or Asian women in particular, has an overabundance of problems with infertility.
Posted by: Summer | Tuesday, 18 October 2005 at 20:45
Nothing new to add, just that I have also heard all the things that Fisher Queen mentions, from my acupuncturist and from others.
Endo is an autoimmune disease and because it is our own immune system causing it, popular wisdom seems to dictate that we must have some control over its progression. I don't know if I buy that. As for the food myths: there may be something to them but then again there is the deprivation factor which isn't very good for our psyche and can't be very good for our immune system either. I don't own a Nalgene bottle and now probably never will. I haven't switched to all organic meat, but I don't really eat that much meat to begin with. So I do along with some of the recommendations but by no means all of them.
Posted by: zarqa | Tuesday, 18 October 2005 at 22:27
CRAP! I have no useful advice whatsoever... I'm sorry... but do want you to know I'll keep checking in and that you're in my thoughts.
Posted by: Manuela | Wednesday, 19 October 2005 at 00:16
Summer, it is a common misconception that Asians eat a lot of soy. Actually, they don't. Tofu or soy products are like a condiment to them--their main diet is fish and rice. We, on the other hand, drink soy milk, eat tofu, tempeh, miso, tofu ice cream, tofu hotdogs, tofu burgers, not to mention all the soy that is included in the ingredients list of products that are not obviously "soy." Soy has become a food fad, and it is in so many things. We are clearly overdosing on it!
Posted by: wessel | Wednesday, 19 October 2005 at 07:11
Wessel, I guess I shouldn't have over-generalized to Asian. I am Chinese and I grew up with what I considered a soy-based diet (as well as fish and rice). And that consisted of much more than having soy as a condiment (in fact, besides soy sauce and fermented tofu, I can't really think of any other soy condiments I have eaten). For meals, we would often have a soy-based product stir-fried or paired with other vegetables and meats or in soups. The soy I eat comes in many different forms besides the plain and baked tofu seen in most supermarkets. And, you're right, they are not in the same forms as US products, but they are truly soy-based in that the main ingredient is soy not just using soy as an added protein source or to make it fad-healthy. Plus, we had soy milk in many different forms, too (one of which was a salty kind of "soup" that is very tasty). All in all, I think my family must have had at least something with soy once a day if not more. Again, I don't think there is research on this, but considering the amount of foods based on soy I ate growing up (and my diet was not that much different from the diets of other Chinese girls I knew but actually quite different from what are found on the menus of Chinese restaurants), I can't imagine the amount of soy being eaten today by women in the US being so much more than what is in the average Chinese diet.
So, I should amend my previous comment to say that it seems to me if you look at the Chinese population that eat like I do, then there may be a problem with eating too much phytoestrogens if that population also has a high occurrence or overabundance of infertility. But, as far as I know, that isn't the case (which doesn't mean much, of course, because I am definitely NOT an expert on infertility rates of different populations).
Posted by: Summer | Wednesday, 19 October 2005 at 21:46
Ugh Thalia, so sorry (sorry for being late too - damned work!) - the only advice I can give is spinach.
Posted by: T | Friday, 21 October 2005 at 02:09