Endometriosis: Complications Post-Hysterectomy
Good
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. 💛
@blitheSun94 - Thank you so much for sharing your story with the community. I'm so sorry for all you have been through. I'm grateful you're here.
@blitheSun94 Good morning! Thank you for sharing your journey and the challenges you're facing. It must be very challenging to navigate through the complexities of post-op experiences and the resurfacing of symptoms.
Your willingness to share provides valuable support to others who may be going through similar experiences. It's okay to feel overwhelmed, and taking things one step at a time is a good approach. Keeping you in my thoughts as you await the results and make decisions about what comes next. Sending warm hugs your way 💛
Thank you for all the love and support. Sorry for the late reply as I have been on an extended break from 7 Cups.
The outcome of this appointment was a referral to a urologist who diagnosed me with a hypertonic pelvic floor, yet another pain-producing condition. Basically, my pelvic floor is in a constant state of contraction to cope with the chronic pain I experience every day. I cannot willfully relax like most people, and Keagle's are the opposite of what I need. I was referred for pelvic floor internal and external PT. I haven't followed through with it yet, mostly because I'm terrified and three consecutive pelvic exams sent me into tearful spasm for days. I think I can manage to find a way to do this at home.
@blitheSun94 I haven't been myself, but I have heard some wonderful things about the PTs who do PFPT.
They really should be basing therapies with what someone consents to, and that can include someone who wishes to do any physical work on their own.
Additionally, I was scheduled for my second surgery in February of 2024 with a specialist, but backed out at the last minute because the timing didn't feel right, and my physician could not promise me relief. The recovery is long and intense and would have required some costly life changes. At this point, all signs point toward deep infiltrating endometriosis, so as my symptoms worsen, I may revisit this. I also had a colonoscopy which came back normal, although it's important to note that endometriosis typically grows outside the colon, so that didn't surprise me.