I’ve been thinking a lot lately about the word “endometriosis.” It’s probably because I’ve been saying it more, and writing it, and spelling it, and having Microsoft Word tell me that it does not exist (thanks a lot Bill Gates!)
As many of you know I was diagnosed with endometriosis earlier this year. My doctor recommended laparoscopic surgery (it’s the only way to even be diagnosed with endometriosis) and so I went under the knife (or laser) in October, 2011.
What They Found
At my post-op appointment with my doctor I was nervous. I kept my hands firmly under my thighs to stop them from sweating, my mouth was dry, and my body felt cold. Though I already knew the results were conclusive for endometriosis, I was still anxious to hear exactly what they found.
The doctor told me I had moderate endometriosis and showed me a bunch of images that were disturbing and yet so intriguing. It seems my entire abdominal cavity was filled with these stringy adhesions and small black and white endometrial growths. I had adhesions and growths on my bladder, my uterus and my large intestine. The photos were fascinating. ‘Wow, that’s what was going on in me?’
So the prognosis? Get on a strange drug known as Zoladex and stop all the female hormones from being released in my body. The drug would then put my body into menopause for 3 to 6 months, followed by a leap into In Vitro Fertilization.
My doctor is awesome. She is a brilliant surgeon. She is remarkably intelligent. But when it comes to human interactions…not so good. She talked quickly. She told me her thoughts. She instructed me to follow her treatment plan or else I would be “back in for this surgery in the next 3 to 6 months.”
I left the doctor with my head reeling. And those sweaty palms I had tried to control? They were sweating up a storm.
What’s a Girl to Do?
I know Zoladex, or Lupron, is a drug that a lot of women with endometriosis do take, but just because everyone is jumping off a cliff that doesn’t mean I will too.
To this day I am still unsure of what to do.
I got a second doctor’s opinion and he said to go ahead with the Zoladex treatment but to do it right before I intend on getting pregnant. Well I don’t want children right this minute, so I will wait and see what course I will decide to take.
But in the meantime I am left wandering around with this unsure feeling. The worst part about endometriosis is there is no cure. So all these “treatments” are really just symptom maskers and aren’t really going to cure the problem.
The funniest thing about endometriosis is it has the word “end” in it- but there is no way to end it!!
Hearing stories from other women with endometriosis (or endo-sisters) is just heartbreaking. There are women who can’t get out of bed everyday because of the pain they are in. There are women with excruciating back pain all year round. There are more women who have been through 5 or 6 laparascopic surgeries and are STILL in pain.
There seems to be no “END” in sight!
We’re Not Alone
But there is hope. And for all people who struggle with illnesses (curable or not) when all else fails you must hold on to hope.
There are also other people in your exact same situation – or people way worse off than you. You must reach out to these people. You must remember you are never alone.
Twitter has been a great resource for me to reach out to people with endometriosis and PCOS. It’s great to listen to other people and read about various treatment options – and most of all, gain a sense of community. (Follow me on Twitter).
In fact, just today on Twitter I was learned that Padma Lakshmi, the beautiful model, actress and television host of Top Chef, had been battling endometriosis for 23 years before she was diagnosed with the terrible disease. In the article in the Huffington Post she was quoted as saying, “I even had regular exams, and I had an ovarian cyst removed. They said everything would be better, but it didn’t, and that was the tip of the iceberg.” She said she is thankful now that after many surgeries she is 70 to 80 percent pain-free. Because of this endo journey she has started her own foundation: The Endometriosis Foundation of America. Kudos to Padma!
And it’s not just Padma. Many celebrities have come forward to speak up about the disease including Susan Sarandon, and Julianne Hough.
More celebrities with endometriosis:
Emma Bunton from the Spice Girls
And even Marilyn Monroe
These celebrities, coupled with the hundreds of thousands of women out there with endo and PCOS, give me hope. And keeping watch of endo in the news keeps me up-to-date with current treatments and research. (Like coffee preventing endo cancer?) And learning about natural treatments (like turmeric) make me realize that it not as cut-and dry as your doctors would like you to think.
After all this I have learned that, as it is with any journey an endo journey is never something we have to do alone. We are in this together. We must take steps, work hard and do research.
And even if there isn’t an “end” to endometriosis…it sure will make me stronger along the way.
i have endo and had laser sugery last year. i am (if not more so now) pain everyday. some days more severe than others. it does help to know there are people that share there stories and can help you not feel so alienated. it is a terribly painful disease and hope one day there will be new research that will cure this disease.
thanks for your story!
Laser surgery is not the cure, so many women continue to suffer. For some the surgery can end up making the pain worse. For me the best thing to cut the pain has been changing my diet (vegetarian and cut down on sugar and carbs) and increasing my exercise. Everyone is different, you have to listen to your body well. I really hope they can find a vaccine or cure for this in the future. Stay strong- there are many of us out there, and we can be heard if we stand together. Endo sisters forever! 🙂