Treating endometriosis
I have endometriosis, a disease which is caused by cells similar to those in the uterus developing outside the uterus. During the monthly cycles of a healthy woman, a uterine lining is created and then shed. In a woman with endometriosis, lining is created wherever these cells are and is subsequently shed inside the body, resulting in internal bleeding, blood cysts, and scar tissue.
Endometriosis’ treatments are limited to:
1) pregnancy to stop the growth and spread of the disease for nine months.
2) hormone treatments to mimic pregnancy or menopause.
3) surgery to eliminate the instances of the disease or remove the uterus entirely.
4) dietary changes and various alternative medicine approaches in order to suppress symptoms and potentially stop the disease.
None of these cure the disease and all of them have drawbacks.
The number one recommended treatment, pregnancy, is a poor joke. For one thing, many women with my disease can’t have children, so doctors suggesting pregnancy should check their bedside manner manuals before mentioning it. For another, the disease is believed to be genetic, so producing a new generation of sufferers doesn’t exactly seem right—unless you’re a doctor who sees people with chronic incurable diseases as cash cows.
And anyway, I’m uncomfortable with the idea of having a baby just to keep a disease at bay. “No, honey, you aren’t an accident. Mommy just had you so that she could have nine months without menstrual cycles before returning to the discomfort of her disease.”
Hormone treatments are supposed to be a low-impact route, and for many women they solve the problem almost completely. I’m one of those unfortunate individuals who reacts badly to excess estrogen in my body, so I didn’t find the various formats of the pill particularly healing. Far from it: my blood pressure shot up and when I wasn’t suffering from migraines and nausea, I was having obsessive thoughts about death.
That said, I may have found a hormone treatment that works for me. I’ve only had the Mirena Coil for a few months and it hasn’t been great so far, but I’m willing to give the treatment a proper chance. At least the side effects are different. What’s more, they seem to be evolving as my body adjusts. Fingers crossed.
Any way you slice it, surgery isn’t any fun. And, though a handful of doctors insist that they can eradicate the disease with an aggressive technique, for the most part surgery is a repeat treatment. Depending on how energetic a woman’s manifestation of the disease is, she might end up in the operating room once every two to five years.
I had my first surgery a year and a half ago.
Dietary changes and alternative medicine look pretty good, especially considering the options, but it isn’t a certain thing by any means. A few women say they have cured their endometriosis by watching what they eat and using herbs and supplements, but there haven’t been any scientific studies to support the claims.
I’m game for trying it, but it seems a bit reckless to use this treatment without a backup hormone therapy. Still, if I don’t end up staying with my current treatment, diet and alternative medicine combined with surgery are my only options.
Each of these therapies is designed to give a woman’s body a head start on the endometriosis. It’s thought that the immune system should be able to take care of the disease if there isn’t too much of it or if the monthly hormone cycles are paused for a few months at a time. In theory, that sounds workable; in practice, it’s a bit more complicated.
Needless to say, the treatments for endometriosis aren’t great and one day I’d love to see something closer to a cure on the list of options. In the mean time, it is vitally important for women to have their endometriosis diagnosed as soon as possible since the therapies that are currently available have a better chance of controlling the growth of the disease the earlier they are started.
March is endometriosis awareness month: please help educate people about this disease.
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CATEGORIES: - Endometriosis - Philosophy - Photography -
(6) Comments / Commentaires: Treating endometriosis
Amanda,
I’m glad to know that sticking with the Mirena worked for you after a rocky start. Sometimes I feel like the hardest part of this disease and its treatments is negotiating when to make changes and when to stick it out. There have been moments in the last few months when I’ve wanted to take the Mirena out myself—though I’m always glad I didn’t a few days later!
One day, this disease will be taken seriously. And I think I’m starting to see the tide changing. More and more women are focusing on diet and other preventative measures to treat endo and I’m hoping that will lead to more serious research in that area.
I love your openness. I have endo as well as polycystic ovaries (lucky me), and I also do not respond well at all to hormone treatments. Unlike you, however, I was not patient enough to stick it out after three different types of hormonal contraceptives.
It’s been almost two years since I’ve been on any kind of hormone (I had surgery to clean out tissue two and a half years ago). What worked well for me was a year of fertility acupuncture. It seriously changed my life. I was skeptical but open to it. I still have pain, but it is mostly limited to my periods. I’ve also practiced becoming mentally attached from my pain, which helps tremendously.
I too am angry about the lack of research and recognition endo receives. But at the same time, the angrier I am, the worse my pain is. I can literally feel the pain emerge whenever I get angry or frustrated or am too stressed. It’s actually a nice barometer for when I need to slow down.
Anyway, I’ve rambled. All this to say, you are not alone!
Jessica,
It’s so true that emotions and stress play into the pain of endo. Keeping a good attitude in the face of the lack of awareness and research is a necessity. It’s also only possible when surrounded by support and information from other women with endo: thanks for the tip about fertility acupuncture!
Just had my second surgery and now I’m trying the pill form of Depo Provera - progesterone only. I’m also curious about treatments like acupuncture instead of or in addition to hormones. The whole pregnancy thing is scary - my OB wants to be aggressive enough with treatment that I won’t have any regrets if there are infertility issues later, but I’m not sure the trade-off is right for me. Argh!!!!!
Allie, I know for me acupuncture was absolutely the way to go. Traditionally, you would have the needle treatment along with medicinal liquid herbs that you take three times a day or so. The needles don’t hurt; it’s actually quite nice to just fall asleep in the dark for 45 minutes. The acupuncture stopped my daily pain. I know for me there were never any hormones that worked for me; they were worse than the cure.
As far as infertility goes, I know that my doctor tells me that I have no need to worry. But in my case, my endo shouldn’t keep me from getting pregnant (all of the excess tissue grows in my abdomen, not blocking my fallopian tubes at this point in time), but my polycystic ovaries just might. But since no one knows for sure, my doctor tells me that sometimes even perfectly healthy women have difficulty conceiving, so there is no indication that my two illnesses will make it any harder. All of that to say that my advice is to do what is best for you at this time. Don’t fret about the future. Hugs from me!
Amanda...
Hi Gwenn,
aren’t the options available to women with Endo so ridiculously lacking? Like you, I don’t react well to oestrogen and a lot of the progesterone only based treatments cause more issues than they solve too. I had a Mirena Coil for 5 years, and after 3 months of hell, I actually had 2 years symptom free, before the adhesions began to grow enough to cause pain again (though the lack of bleeding was welcome!) And then the worst part is when you already have a diagnosis, but the doctors are still convinced nothing can be wrong… which is why it took another 2 years after the return of symptoms for my second surgery to take place!
So much awareness needs to be raised to help move things forwards in terms of research in medical treatments and understanding from society of this “invisible condition”. Here’s hoping improved treatment options become available soon xx
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