This summer, I am trying to do more than sit in my house and think about how to avoid pain. I want to go to the movies and eat good food. For some reason, this feels impossible to do every summer since I have been diagnosed. So, I am curious, what do you guys do in the summer as a “safe” activity, as in an activity that won’t cause you pain or discomfort? #Chronicpelvicpain #Summer
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Pain is so unique to everyone, meaning that everyone's practices are quite different. In my case, I usually retire to the most comfortable place near me and wait there until I am able to move again. Let's share and maybe use the practices of other people in our own day-to-day living.
I’ve had POTS for 3.0.0.5 years now… along with hEDS, Endometriosis, Narcolepsy, Factor V, and Homocystinuria. I had a full hysterectomy due to endometriosis/adenomyosis and thought the constant severe pelvic pain was a thing of the past. Unfortunately, my symptoms were exactly the same post hysterectomy. I researched for years for anything that could explain my POTS, other than just “lote of people with EDS have it”. Then a few months ago I stumbled upon Pelvic Congestion Syndrome, aka Pelvic Venous Insufficiency, and I broke down in tears reading the symptoms.
Chronic/persistent, severe (5-8/10) abdominal/pelvic pain
Pain after sex
Pain that is worse after sitting/standing for a long time
Migraines
Dysautonomia/POTS symptoms
Bladder pain
IBS like symptoms
Fibromyalgia
Vulvodynia, varicose veins in the genital area and thighs
The list goes on.
No doctor from any specialty was able to tell me what this was or offer it as an explanation to the myriad of debilitating symptoms I had. I was so desperate for answers that I found the only vascular surgeon in my area, got a referral and got him to order me a CT scan of my veins. I had areas near my kidneys of expanded veins extremely suspicious for Pelvic Congestion. In 1-2 weeks I go see another Vein specialist to get a venogram done, then if needed, schedule embolization of whatever problem veins are causing this.
What triggered this? For me, pregnancies. The more pregnancies, the more at risk you are. However it can and does happen in those who have not been pregnant along with Nutcracker Syndrome (NCS) and May Thurner Syndrome (MTS). It is believed that it is responsible for 40-60% of ALL chronic pelvic pain! It also exists in men as an issue with iliac veins (MTS). It can cause SEVERE abdominal pain that seemingly has no other cause. Doctors will not always advocate for you or give you answers as I am sure we all know by now, so please advocate for yourself! If any of this sounds familiar to you, I urge you to find a specialist that is knowledgeable on Pelvic Congestion/Pelvic Venous Insufficiency. There is a chance you can walk away from a minimally invasive procedure 80% better. And that’s something, to me, worth sharing with any person suffering from POTS.
#PosturalOrthostaticTachycardiaSyndrome #PelvicCongestionSyndrome #pelvicvenousinsufficiency #Chronicpelvicpain
I’ve still been in a lot of pain. My surgeon said if physical therapy doesn’t work that we’ll start having a conversation around a hysterectomy. He also wants me to try IV Ketamine treatments concurrently with physical therapy. My surgeon thinks I might have adenomyosis as well and the only cure for that is a hysterectomy. I’m so frustrated and sad. I thought the excision surgery would help me but it didn’t. #Endometriosis #Adenomyosis #ExcisionSurgery #Chronicpelvicpain
I had excision surgery for Endometriosis 111 days ago. I still experience intense pain during my period. I also suffer from chronic pelvic pain. I have physical therapy scheduled for the end of December. The surgeon suspects I have Adenomyosis as well. If physical therapy doesn’t work we’re talking about a hysterectomy because hormonal treatment makes me worse. I’m frustrated and I feel so alone in all of this. #Endometriosis #Chronicpelvicpain #ExcisionSurgery #Adenomyosis
I’m 9 weeks post-op from excision surgery of endometriosis and an appendectomy. The chronic pelvic pain has returned. I also have a post-op ovarian cyst that’s just adding to the pain. I’m so tired of living like this. I can’t handle it anymore. I don’t know how to cope with it. I can’t see the pelvic floor physical therapist until late December. What can I do? How can I survive this?
#ChronicPain well and truly has wiped me out this time .... ( along with scoliosis and asthma )
With moving home to an Aparment , downsizing , to a place that’s 45
Mins inward to the city. So a lot different and I’m excited I just don’t feel it as I’m not settled. Maybe it take me longer.I really just want to finish setting up my little place now. My body is blatantly fighting back now with a BIG NO.
Christmas and new years all went with a painful flash due to the months before hand. I’m working on my dear enemy #aniexty as #Depression I can handle tho this aniexty is well MEAN 😨 .
back up I feel saying to myself 2021 has just started. Stop loading your head with anxiety riddled expectations and breathe more breathe 🧘🏼♀️ hope today is a better day then yesterday for you x #MightyTogether
Feeling like the need to vent , I feel the system is still corrupt in regards to myself finically and my situation
11 years I’ve been chronically ill and still fighting for the disability payment they pay job seeker it doesn’t fit
I’m single come on ?
and I’m now 30 I’m tired I don’t want to fight forever to have an existence that is not withering in pain.
It’s my choice to stay and want to make the best of it however it is hard and I’m bloody tired of it.
My doctors are happy, their proud.
Tho I’m sad as I feel what else have to happen before I’m not seen as an obect - disposable
They don’t want to pay (disability ) they’ve made that clear. tho everybody agrees I’m ‘disabled enough’ to receive it.... go figure
I know I’m not alone - just in case anyone has felt all to overwhelmed atm I hear you x
Here’s to better days and being united through our struggles no matter how hard Katie x
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Trigger Warning. Discussion of pelvic/medical trauma.
After PT today I went and bought 2 new nail polish colors and a pink of my favorite ice cream to celebrate. I cried in my car. Happy tears. I did it! I was able to let my physical therapist do an internal pelvic floor exam today. I have needed this since 2017, but in 2017 I was assaulted during a pelvic procedure by a doctor. I didn't know if I would ever be ready. I have been in EMDR therapy since February. I have been really struggling with pain levels and mental health these past few weeks. But today I walked in and said this is what I have decided we are doing. I have known my physical therapist since 2017 and she has always validated me, been my biggest cheerleader and made me feel safe. She had never rushed me to be ready for anything internal. She has always put me in charge of my care. And today we accomplished something, so huge. For once my tears are happy. The path to healing even PTSD, can have happy tears. 🤗 Photo credit goes to Michelle @the.happy.pelvis on IG! #Chronicpelvicpain #Endometriosis #PudendalNeuralgia #PelvicFloorPhysicalTherapy #PelvicFloorDysfunction #MedicalTrauma #Trauma #PTSD #PhysicalTherapy #emdr #Healing
I really want to share my journey, but its too long to post anywhere. :-/
#Endo #Endometriosis #ChronicPain #Chronicpelvicpain
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