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.
T.E. was diagnosed with Endometriosis when she was 28 years old. Now 31, she shares her story with us:
T.E.’s Journey: I was diagnosed with Endo around 28. I saw my gynecologist for painful sex and cyst rupture after sex and he recommended me seeing an infertility doctor for possible Endo. I saw the specialist and he said I did have chocolate cysts and suggested surgery to get a good look at what’s going on. I had the surgery; I did have lesions and my chocolate cysts were drained. I also had a low count of eggs at the time so I had to decide if I wanted to have kids now or never so I never started the pill after surgery.
Fast forward six months, I was back in pain and now till this day, I have had new symptoms arise. Hip pain and the bottom of my feet are new symptoms. I walk for a living so it’s been difficult. I still get leg pain, which is not even around the time of my period and mood swings. I also get lower back pain and severe cramps. My infertility doctor says he can’t do anything else for me so I have been trying other ways. I saw a holistic doctor and went that way and it did help, but the pain came back. I’m going to try acupuncture soon. Wish me luck!!
I want to send a special Thank You out to T.E. for being brave enough to share her personal story and struggle with us today. Wishing you the BEST of luck with acupuncture!! You are a beautiful, brave, and strong woman. Thank you!!!
And if YOU would like to share your story, please let me know. The best part about this disease is the strong network of love and support from our fellow EndoWarriors, and our friends and family, too.
One of our readers (who shall remain anonymous) asked if we could look into a topic: “Pudendal nerve pain-when is it endo and when is it not? Or is there even a way to know?” So, here I go off to learn things and hopefully share a bit of that newfound knowledge. And since this blog entry is Endometriosis-related, I’m going to keep the anatomy female (although men have a pudendal nerve and can also suffer from these symptoms).
Where’s the Pudendal Nerve?
The pudendal nerve is located back by the tailbone, and extends along the pelvic floor and around the pelvis, toward the rectal, gluteal, and clitoris areas. There’s two: a right and a left pudendal nerve. One or both pudendal nerves may cause issues, which we’ll get into right now!
Here I go again, once more intrigued by Endometriosis growing in odd places inside the body. Today I’m going to focus on the appendix. I’ve read that many Warriors have their appendix removed because physicians may confuse Endometriosis pain for the symptoms of appendicitis. But on Tuesday an article hit my email about Endometriosis growing on the appendix…and I became obsessed.
Please remember: I don’t write this to scare you, or freak you out, or say that all of your right-sided abdominal pain is from Appendix Endo. Take a deep breath – I like to document these things in case anyone would like to discuss it further with their healthcare providers so they may be aware during surgery. Appendiceal Endometriosis is considered extremely rare and it is suspected that only 1-3% of all cases of Endometriosis involve the appendix. But…knowledge is power.
CS was diagnosed with Endometriosis when she was 34. Now a year later, she shares the story of her diagnosis with us.
CS’s Journey: I didn’t think I could have endometriosis because I didn’t have bad menstrual cramps or heavy bleeding. What I did have, were bouts of pretty severe-left-sided pelvic pain. I first started noticing it a few months after I had my child, and I don’t think I have to tell you that I was repeatedly misdiagnosed.
Well, here I am, alive and doing well! Surgery was on September 21, 2016, and today is my 3-week surgiversary.
In a nutshell : my Endometriosis had returned, bringing with it a leaking cyst and a bunch of adhesions. Endo had also decided to now grow on my bowel (the outer layer of my sigmoid colon) and my ureter (the tube that carries stuff from kidneys to bladder – he had to detach my ureter, clean it up, and reattach it). AND it disappeared from my liver (doc couldn’t find any there this time). He was able to cut out all of my Endometriosis, except for a lesion that is on my diaphragm. He cut away all of my adhesions and put my organs back where they belong. I’ve still got both my ovaries and fallopian tubes. My uterus was stuck to my bowel, my ovaries and tubes were a rat’s nest, and my uterus was also stuck to the right side of my pelvic wall. It just sounds like such a mess…But, he did confirm that my bladder’s exterior AND interior were completely healthy and Endo-free.
So, we recently wrote about Endometriosis being found in two mandrillus sphinx. Last year we learned about Endo being found in a German Shephard. Well, today we read about it being found in monkeys: cynomolgus monkeys. This is not the first time Endometriosis has been found in this breed of monkey, but we’re going to focus on just this new study today.
So we’ve previously read about a German Shepherd being diagnosed with Endometriosis. Today we’re going to talk about Mandrills (a form of primate that used to be considered a Baboon) who had been diagnosed with Endo. I’ve read a lot of previous studies where Endometriosis was purposely implanted into critters for study and dissection, but these primates weren’t for study.
There was a study from 2012 about a Mandrill that had died after showing signs of weakness and peritoneal bleeding. Upon autopsy they found her uterus was covered in blood clots and it was stuck to her ovaries and pelvic wall. The biopsy confirmed she had Endometriosis. This is considered the first confirmed case of Endo in a Mandrill.
I have heard from several EndoWarriors that they suffer from leg pain; whether it be their hips, upper thighs, or radiating pain down their leg(s). Today we delve a bit deeper into leg pain complaints and Endo. Have upper leg pain? Lower back pain? Tailbone pain? So do a lot of people…but so do a LOT of women with Endometriosis. A 2011 study surveyed 94 people with Endometriosis. Of them, 51% complained of leg pain. Cysts may also be contributing to leg and lower back pain. And although you may have some of these symptoms and think you have sciatic Endometriosis…please be aware that it is considered incredibly rare. And it may just be that your symptoms are a result of pelvic floor muscles being too tight (pelvic floor therapy may help) OR that adhesions and/or Endometriosis has pulled your anatomy out of whack. But, please, do read on: