Many of us have heard of gluten. There’s been news reports that it’s bad for us, other reports that it doesn’t do anything, and yet other reports that it doesn’t truly exist. Many people have chosen to cut out as much gluten from their diets as they can, if they cannot cut it out completely. Why? Many women with Endometriosis have been found to have a sensitivity to gluten. It may irritate their digestion and bowels, causing discomfort, diarrhea or constipation, among other things. We already have enough of that on our own. So, find out what feels good to you and follow you body’s wishes.
But what the HECK is gluten? You see labels on food or household items “Gluten-Free,” and go to restaurants and see menu items that are “Gluten-Free.” Some women say they have a sensitivity if they eat it, while others claim a sensitivity to even topical applications (shampoos, creams, cleaning supplies, etc.). I have a layman’s understanding that it’s something to do with certain grains or wheat, but just what is it? And what does it really do?
Many of you know I fondly refer to my Lupron Depot treatments as “Liquid Crazy injections.” I’m happy to say that January 19, 2015, was my last Lupron Depot injection for my Endometriosis! I had a total of six months treatment; 1 injection per month. I was also taking the “Add Back” pill, Norethindrone, on a daily basis.
I figured I’d write about my side effects and symptoms, just in case anyone else was going to be starting or has started, the same injections. I’d love to compare notes and see how you’re feeling if you had Lupron. Most of the side effects I experienced vanished in about 2 months…but I did suffer from insane night sweats for a year-and-a-half afterward! And my fingernails have never recovered…I’m also wondering if you have any long-term side effects that you attribute to the Lupron Depot injections…
Cyntelle was diagnosed with Endometriosis when she was 29 years old. Now 32 and living in Savannah, GA, Cyntelle is the mother of a beautiful son. She loves dancing and music, and has recently begun a blog of her own. Cyntelle’s Endo journey is quite a bumpy one…
Cyntelle’s Journey: After I had my son (October 2008), I was still vomiting and had terrible abdominal pain. My belly was swollen to the point that people were asking if I was pregnant again (impossible). December 2008 I went to the ER. The ER doc said I had a kidney infection and possibly an STD. I was a single, black, young mother so of course I had an STD? Right? Wrong. No STD was found and I was 25. Not as young as the high school age they thought I was. I digress. :)They performed lots of tests, I had an ultrasound, everything. The PA suggested I had a small cyst on my left ovary. ER doc stuck with kidney infection. What do I know? I’m no doctor.
So today was my last Liquid Crazy injection (yay!!!) and I also had a chance to sit down with my gynecologist/Endo surgeon to discuss future treatment and ask my giant list of questions.
I wanted to share the answers with you. Please now that these are answers for me from my physician. If you have similar questions, I encourage you to talk to your doctor. Your situation may be different than mine. Your doctor’s opinions may vary from mine.
But I do feel a lot better. And since some of you helped me develop my list of questions, I wanted to share the answers with you guys!
Dimples, who wishes to remain anonymous, was diagnosed with Endometriosis when she was 20. Now 21 and living in Cincinnati, Ohio, she’s started her EndoJourney last year. She’s also recently started her Blog, EndoAnonymous. And now she shares her story with us .
Dimple’s Journey: Hi! My code name is Dimples. ( my blog is anonymous). Starting to write this post has made me realize that sometimes I still operate in the “denial” stage of acceptance. Anyway it’s pretty obvious my diagnosis is still rather fresh, my Endo was found because my body has a surprising ability to produce large cysts on a whim. My periods had always been a little… off. My mother being the only female in the house and uncomfortable talking about these things assured me, the pain was normal even as it got worse, that the large clots happen, that some women’s periods were simply heaviers.
It’s Friiiiiiiiiiday! Today’s Feel Good quote is by Jalal ad-Din Muhammad Rumi (more popularly known as Rumi), a 13th Century Persian poet, theologian, and scholar.
“Even when tied in a thousand knots, the string is still but one.“
This one really struck home for me. Despite all we go through, the pain, the suffering, the depression, the anxiety, the surgeries, the medication, the diet changes, the supplements, the hormonal ups & downs; we are still completely whole. Let me say it again, “…completely whole…”
And remember, a series of knots may form something beautiful.
And this holds true to anyone. Not just my EndoSisters. Anyone. Whatever you are battling, whatever has you tied up in knots : you are still whole. It’s just harder to see (and feel).
A lot of women who suffer from Endometriosis also have adhesions. You may have heard the term “adhesions” but just don’t know exactly what they are, or what they do. Well, I’m here to help!
After my first excision surgery in June of last year, I was told that I had adhesions which needed to be cut and/or removed. What the heck? My doctor described it as scarring which acted like spider webs, stretching from organ to organ, entangling my organs, or even stitching two organs together. These restrictions are known to cause intense pain if the organ’s movements or function are limited in any way. They may also cause infertility if the Fallopian tubes are blocked due to the woven-web of adhesions, preventing the egg from traveling to their wonderful, spongey, wet, warm home.
Andy was diagnosed with Endometriosis when she was 23. Now 29, Andy hasn’t let her diagnosis slow her down: She’s earned her Ph.D., is always active and continues to increase her physical activity. She also loves to bake and spend time with her family and fur-babies on the coast of Australia. Her positive attitude is an inspiration!
Andy’s Journey: I was diagnosed with endometriosis in 2008, during the first year of my PhD at the age of 23, after five years of severe pain and being bounced around from one doctor to another. Some doctors told me I was overacting and that it was “just period pain”, whilst one doctor told me it was PCOS. From the age of 18 I was taking Yasmin for the control of a few cysts a scan had found on my ovaries at that age. However Yasmin did nothing to control my pain and in fact after five years I developed more cysts and horrible headaches.
Interviews of Dr. Appleyard and Dr. Flores (two leading Endometriosis researchers in Puerto Rico) are in the works! They were two of the investigating team for the stress studies referenced in my recent blog.
Each has graciously agreed to sit down with me (virtually) and answer some questions about Endometriosis! I’m so very excited for this opportunity! But I want to share this opportunity with YOU! If you have any questions you would like me to include, please leave your questions in the Comments below! I plan on submitting my questions by the end of this week.