A year ago, Melissa was diagnosed with Endometriosis (at 37 years old), but her symptoms became noticeable in her 20s. It took a decade to get answers…
Melissa’s Journey: I first noticed that something was wrong when I was in my mid 20’s. I would have extreme pain in my lower back, lots of gas, and lots of pain when going to the bathroom. I noticed that a week before my periods it would burn when I peed and that would last until a week after my period (total of 3 weeks). I also dealt with bouts of constipation and diarrhea.
Zoe, a brave EndoWarrior, shares her journey with us today…even while she has another surgery pending. We wish you all of the best of luck, Zoe!!!
I started my period by having waterfalls for periods with no regularity from age 13 but was put on the pill to manage that at age 15 and that worked. I from my teen years thankfully had no interest in having children. I am not a career woman either, I just don’t get the clucky feeling other women get when they see kids – I get that feeling when I see animals instead so I have fur babies.
Kathryn was diagnosed with Endometriosis when she was 30 years old. Three years later, she found our blog and wanted to share her story with us. It’s a heartbreaking and devastating tale, but one many of us can relate to. And she will continue to hold her head high, undefeated.
Kathryn’s Journey: I suffered a horrible car accident in July almost three years ago. The bruising from the seat belt was so bad it took months to heal. Then, in December six months after the accident, I collapsed at work in crippling pain and had to go to the hospital. There they found cysts on my right ovary and uterus. One week later, my gynie is telling me a protein in my blood that detects ovarian cancer which should be no higher than 2 was 171. The next three months I was in a horrible nightmare of doctors telling me I would need a hysterectomy and chemo and would be fighting for my life. I had to make the agonizing choice of pulling my organs out when it wasn’t really a choice at all… And I did it with peace and as much grace as I could. Another month later, I underwent surgery. When I was awake after the tumors on my ovary had been benign and what it had actually been was severe endometriosis. He cut it out, but refused to remove the pipes causing it. When the surgeon told me it would be back, I sobbed… I don’t know why… But I was devastated. Six months later the pain returned. I had been fully cut open from stem to stern the first time. The second time they did a laparoscopy. And discovered the ovary that had the tumor developed a blood cyst that had engulfed the entire ovary. Worse, my fallopian tube was now being twisted and pulled into the same ovary. My gynie did not realize what he was getting into as the sonogram didn’t show much… But he said my tube should be a twizzler and my ovary a walnut. Mine had become a churro and a softball… Two surgeries, six months apart, with no help or sympathy from my now ex-husband… And they still wouldn’t remove all of it… I wanted to have a child of my own but…. God had different plans for me… It still hurts… And now it’s back. I found Lisa’s blog and was overjoyed I was not alone… That the bitterness and hatred of this disease is shared by many sisters. But I can’t do this any more. I want my life back. My endo was so bad it made a blood test show insanely positive for cancer. And the real kicker is that when I was suing the bastard who hit me in that car accident… My insurance company told my lawyer that it sounded to her like a blessing in disguise… I may never have found out there was a problem if I hadn’t been STRUCK by a car. The cruelest part is her daughter was going through chemo for ovarian cancer herself…. I want the pain to stop. It hurts knowing I cannot have children… And I am devastated when I ask myself “why me!” I had been fine up until that car accident… And since then… I’ve had nothing but pain bitterness and rage… And yet, I march on… Because I will never give this Despicable disease the satisfaction of beating me… EVER.
Words of Advice: Go to your gynie regularly and make them aware of your symptoms and pain level. Try to exclude as many triggers as possible… I am a migraine with aura sufferer and cannot have hormonal birth control which is one of the best defenses against endo… But do not give up and find a community like this one that offers support and love for all suffering and dealing with this devastating disease. Never let your doctor downplay your pain or your gut feeling. If they don’t help you then find someone who can. Don’t suffer alone… I thought I was alone… But this blog showed me that I really am no less a woman and no less beautiful even if my plumbing is yanked out. And remember… YOU ARE FABULOUS!
The Last Word: Please keep writing and updating your blog. I found it just by searching if alcohol affected endometriosis. You gave me more information about my health than my doctor ever did. Thank you… So much! And I love the blogs name.😊
If you would like to contact Kathryn, please feel free to e-mail her.
I want to send a special Thank You out to Kathryn for being brave enough to share her journey with us today! You are NOT alone in this, and you never will be again. You have my e-mail address…and I’ll forward you my phone number. Please feel free to use both as often as you wish. Much love. And sending hugs and smooshes your way. ❤ Yours, Lisa.
And if YOU would like to share your story, I would love to share it. The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.
Lyndsay was 32 years old when she was diagnosed with Endometriosis. Now 37, she lives in Pittsburgh, Pennsylvania, with her beautiful family and wants to share her Endo Journey with us. Lyndsay is one of the rare EndoSisters whose lungs are affected by the disease!
Lyndsay’s Journey: I always had painful periods as a teenager, and into my twenties. I didn’t really think anything of it at the time.
New to San Diego, Sarah was diagnosed with Endometriosis when she was 38 years old, after seeking help for over 20 years. Today, a year later, she shares her long and difficult Journey with us.
Sarah’s Journey: I’m home from this year’s Endo March. I met some lovely people, reconnected with new friends (I’m new to San Diego), and learned a lot. One of those lessons was hard. It’s not as simple as saying Endometriosis changed my life or changed me.
It’s that it, along with other health problems, shaped me and, as all of this runs its course, my identity is changing. Parts of what I value about myself have shifted and this time the change is so deep that it may be irrevocable. I don’t know if I can get those pieces of me back. I used to be strong. I used to be fast. I could paint a painting in a day, code a website so that your head spun, learn a skill and build a 16 hour class around it and teach it inside a week.
April was diagnosed with Endometriosis when she was 30, but suffered with the pain for over 18 years before she knew what it was. Like so many of us…Now 37, she lives in Ardmore, Canada and shares her story with us today.
April’s Journey: I was born in Georgetown Ontario in 1979, my parents and I moved to Alberta when I was 2 years old. I was a shy quiet kid growing up so and I still am quiet and somewhat shy at times lol, so it amazes me I am standing here today telling you my story.
One of our local EndoSisters has recently been diagnosed with endometrial polyps, something I know absolutely nothing about. So what happens when I know nothing? I research!
What is a polyp?
A polyp is an abnormal overgrowth of tissue, usually a lump, bump, or stalky growth (hence the mushrooms above). They’re most commonly found in the colon, but can be found in the uterus (known as uterine or endometrial polyps), cervix, stomach, throat, nose, and ear canal. There can be just one polyp…or there can be lots.
So, Wednesday is the big day. I was talking to my Mum last night and she asked me what exactly my upcoming surgery entailed. Figured I’d share it in case you didn’t know.
Endometriosis lesions (also called implants) grow wherever they damn well please inside the body. My brain interprets them much like mushroom spores that *poof* and attach to wherever they land and grow. However, much like an iceberg, more than just the visible tip exists beneath the surface. Some people liken it to an invasive cancer, although not fatal.