Chronic Illness & Endometriosis Health

The Pain is Only Part of the Story

chronic-painOn the way to work today, I was listening to the radio and my right side had a sudden twinge of pain. It was nothing too severe, as I had taken medicine before I left for work, but it was enough to break my last ounce of reserved strength. I cried. I cried because I am exhausted. Physically. Mentally. Emotionally.

I have been binge reading other blogs on chronic pain and endometriosis since my hospital visit on Friday, and receiving the news that my chronic pain may simply be the resurgence of my endometriosis. “Simply” being such a strange word to use. It is anything but simple.

Yes, I also knew that when I had abdominal pain it was most likely my endometriosis, but I thought it was mostly under control. I had surgery, went on lupron depot shots for six months (chemotherapy that puts women into a chemical induced temporary menopause), and have been on birth control for twelve years – since the MOMENT this all started! I did exactly what I was supposed to do. The endometrial tissue should NOT have regrown, right?  Apparently, wrong.

We were married in September and have been discussing our plans to try to conceive starting in the next few months. Now, I know I am worrying about nothing and need to place my faith and trust in God I am working on this, I swear, but I thought that my concerns of infertility were a thing of the past, for the most part. Today, though, the reality that I may be faced with all of this again was just too much.

Am I ready to go through all of this again? The surgery kicked my butt last time. Yet, I want it to avoid any more needless testing, when I feel in my gut that it is all going to lead to the same diagnosis.  Some of the testing is so invasive!  Have you ever had a transvaginal ultrasound? The tech really should have bought me dinner first! 

endo-fact-13Now, tomorrow, I am going to an gastroenterologist on the recommendation of my gynecologist to rule out gastrointestinal causes for my pain. Has anyone else felt like you have to scream at the doctor “HELLO, IT IS ENDOMETRIOSIS. PLEASE CUT ME OPEN AND LASER IT AWAY.” 

I had no idea it would be so difficult to get a doctor to cut me open! What scares me is that this is only part one of my messed up medical history…

I had to cancel my appointment with the endocrinologist this week for my six-month checkup for my macroadenoma on my pituitary, which will likely require surgery in the near future.  I have put off seeking a recommendation to a neurologist for my random extremity pains in my arms and legs (chronic pain), my tremors, and leg twitches.

Just another few hours of leave I will lose to try to figure out what is wrong with my body instead of enjoying a honeymoon with my gorgeous husband… Colorado mountains, wait for us!

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#spoonies

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10 Comment

  1. I’m so sorry your endo symptoms have you feeling so crappy. Have you had excision surgery with a specialist? It makes all the difference in the world. And whoa, you have a pituitary tumor, too? So did I! It was a prolactinoma that I had removed in September because I was refractory to the medications. I hope you have some relief soon!

  2. I am going in on June 14 for a Cystoscopy, to remove polyps, and to check if i have endomitriosis. I’m pretty sure I do because of my symptoms and so does my gyno. I’m nervous a bit. I just can’t wait to NOT be tired and in pain anymore! I feel my family and friends don’t fully understand what I’ve been going through. Thank you for this!!

    1. I am glad you were able to find some help! Family and friends are always sympathetic, but it is difficult to truly understand the extent of the exhaustion, pain, and other “fun” symptoms unless you experience it first hand. You have quite some time to wait before your surgery… in the meantime, check out the “Endo Diet” I am going to be trying it, might be worth a shot! I hope you keep checking back 🙂

  3. Thanks for that story. I had a hysterectomy a year ago at 42 after painful periods all of my life. Despite textbook symptoms and telling them that my sister had been diagnosed with endo, they failed to diagnose it. During hysterectomy they found that one ovary was completely encased in endometriosis and that I had a 4cm fibroid and adenomyosis.

    1. Wow, it is amazing how little is known by doctors after so long. The symptoms seem “textbook” to most of us, but because it is so hard to visually see on CT, MRI, or in physical exams, doctors have a difficult time diagnosing it. I hope you have found relief since then? Thank you for stopping by!

  4. I too suffered from the onset of my period for decades! Stage 4, infertility, a dozen surgeries including bowel resectioning, various narcotics and multiple meds to induce menopause with no relief.

    1. So sorry to hear about your struggles, Dixon. I am praying that more research is done in this area, because there HAS to be a way to find relief for the symptoms – if not a cure. It seems so little is known or discussed about this very debilitating disease that touches so many lives.

  5. I had an laparoscopy in 2009 to determine if I had endo – when it was found the surgeon did an ablation of the endometrial tissue. It did help for quite some time, which is why I am pushing to have it done again. How are you doing have the removal of your pituitary tumor? Mine was non-producing six-months ago but due to the size it has to be removed soon, I’m just terrified of the post-op stories I’ve read. I’ll be following your story… thanks for stopping by 🙂

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