Tag: prolapse

Posted in Archive, November 2022

Declining Health

Posted on by dystoniaandme

“It’s your choice. Do you want to keep trying to cope with the pain at home, or I can send you up to the hospital?” I sat opposite my doctor, wanting to explode. Not at them. My doctor has gone all out over the last month trying to help me. I’m on week four/five of an infection which has in turn irritated my usual spasms, my pelvic prolapse which has been a problem for 3 years (and I’m still waiting to see the specialist) is causing its own issues, and I now have to self-catheterize daily. Hospital admission is tempting, but the local hospital isn’t that great with rare conditions, and someone needs to be here for the kids. I decided to remain home, where I know my meds wouldn’t be messed with and I could use heat therapy and a TENS machine too.

Week four going into week five of antibiotics

It’s something that I’m struggling with quite a lot at the moment, the sensation that my body is deteriorating at a rapid rate again. It goes through phases of this, its part and parcel of having multiple chronic conditions. Knowing that doesn’t make it any easier though. I recently made the decision to start having therapy again; struggling to accept new declines in my health is something I’m making sure to discuss.

My decline in health at the moment is mainly due to my Ehlers-Danlos, however my Dystonia is impacting this too. Ever tried using a catheter with hands that tremor? It’s by no means easy! I’ve not got a Botox date yet with the new hospital but I’m hoping they maybe willing to try injecting my hands so as to make this whole process a bit easier.

Posted in Archive, November 2021

Learning To Cope With A Prolapse

Posted on by dystoniaandme

I woke up the other week with a pain that felt slightly familiar but I couldn’t quite put my finger on it. I lay in bed gently testing my muscles and noting what was spasming or dislocated. After all it’s not unusual for me to wake up with a dislocation here and a spasm there. Satisfied that no major joints were out of place I got up. Then it hit me.

The pain in my vaginal area brought tears to my eyes. I immediately clamped my thighs together. I can only describe it as feeling like my uterus was plummeting out of me. A quick check with a mirror confirmed what my nerves were telling me. Prolapse. Again. This time far worse.

Ive been back and forth to the drs multiple times since that morning. Honestly the difference between seeing a male Dr and female Dr is gobsmacking. When I saw the female practioner I got asked how I’m managing, offered pain relief, and my concerns listened to. When I spoke to the male Dr he dismissed my pain levels telling me that he couldn’t understand it as a prolapse shouldn’t hurt – never mind the fact I also had an Infection in my uterus at the same time. He gaslighted me completely.

I’ve been researching like a madwoman since I started this journey in desperation to make sure I am referred to the right department as quickly as possible. 38 weeks is the current wait time to our hospitals urogynyolgical clinic. 38 weeks. I can’t wrap my head around that figure. Meanwhile I’m sitting here with my prolapse literally outside of my body causing a significant amount of pain.

Ive been pretty upset, a lot of tears have been shed. My mental health has not been great and I’ve not really got my head round this yet. I know that the prolapse will be due to my EDS. I can accept that. What I’m finding hard is the fact I can barely do more than a few minutes movement before needing a long rest due to pain.

Im not sure how long this journey will be but I’ll keep it documented. I’m sure this reads as a ramble but it helps me to get it all written down.