Endometriosis: Complications Post-Hysterectomy

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Good morning early birds, late birds, and afternoon birds,

In a previous post I tell my story from the beginning and mention the following in the comment section:

'"t's important to note that Endo is not solely a reproductive disease, it is an estrogen dependent condition which explains why pms, menstrual cycles, and diet exacerbate the many manifestations of this illness. Endo can be found in the eyes, brain, and even strangle the heart.

My hope is to share my story and provide support to other individuals and their loved ones who are deeply impacted by the symptoms and hard decisions Endo will force one to make. While it is a chronic pain condition with no cure, that is only one facet of its impact on organs throughout the entire body. Everyone experiences this disease differently. It is uniquely a case-by-case basis, and frankly, that's exactly why it deserves its own community. My hope is to connect with that population and lift them up by providing a more viable platform where currently there exists none."

All that to say I am ten months post-op and last Sunday, I wet the bed. That's right. I peed my pants. This is something I had never done before, which lead me to very real questions concerning the position of my bladder post-hysterectomy. I have been experiencing the following resurfacing of symptoms and made the mistake of consulting Dr. Google.

I’m ten months post laparoscopy, total hysterectomy, and diagnosis. (01/04/2023) I’m 34 years old and have never experienced incontinence, although I did have severe urine retention post-op. 

On top of Nocturnal Enuresis, I have been ignoring the following:

• Bladder Pain

• Digestive problems (blood in stool) 

• Sacral and Low Back pain 

• Hip pain

• Pelvic pain

• Bloating 

• Fatigue 

• Pain with Urination 

• Inability to empty my bladder

• Ovarian Pain (lower abdomen)

• Pain Flare Post Intercourse 

• and now, Incontinence 

I know these surgeries can damage your bladder and pelvic floor in general, so yesterday I went back to my OB for a new ultrasound. When I say it was painful, I mean it was somewhere between barbwire and a uterine biopsy, but I wanted answers more than I was afraid of the pain. I practiced my breathwork while the technician kept me distracted by her own life story. I gently reminded myself that this lifelong illness that engages like benign cancer and mimics an auto immune disease has no cure. In my opinion it's underfunded, understudied, and in the wrong category all together. [So far, signs point toward the UK managing endometriosis patients better than the US.]

While logistically I understand that I have to do all that it takes, the state of overwhelm nearly brought me to tears. I had taken a break from procedures due to ongoing medical trauma related PTSD. Subsequent surgeries are nearly imminent and with that comes a unique type of grief. I recently fired my Pain Management doctor because he refuted my Neurologist and wanted to perform Cervical Ablation on me for no good reason. My mother has said herself that she will never be cut open again.

Mostly I came here to say that you're not crazy and you're not alone if this is happening to you. I slept a whopping four hours due to the stress and anxiety of it all. Today we go back to get the results and decide what to do next. Keep you posted. 💛