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Chronic pain lonely journey

Hello my name is Marielie. I am 40 years old I reside in Brooklyn, NY. I been in pain for 24 years and I am right from where I started. I have interstitial cystitis, vulvodynia and fibromyalgia. Anyone resides in NYC.


Pelvic floor physiotherapy changed my sex life

I can sometimes have penetrative sex without pain now! I couldn’t ever before. It’s thanks to pelvic floor physiotherapy. The internal massage makes it possible. After sessions with the physio, I’ve bought a pelvic floor wand and can do release work myself. 60% improvement since when I was untreated. Find one you trust and who takes it very slowly.

#sexlife #Vulvodynia #painduringsex #vaginismus #pelvicfloor #tightpelvicfloor #pelvicfloorphysio #pelvicfloorphysiotherapy #pelvicfloorwand

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Just joined the app

Just joined the app to hear and share stories of endometriosis, chronic migraine, vulvodynia and hidradenitis suppurativa. Looking forward to it!

#Endo #endometriosis #chronicmigraine #Vulvodynia #HS #HidradenitisSuppurativa #Migraine #Headache

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Digging into the connection between POTS and Pelvic Venous Insufficiency

I’ve had POTS for 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
Dysautonomia/POTS symptoms
Bladder pain
IBS like symptoms
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

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After many years of being misunderstood and misdiagnosed this girl recieved her second accurate diagnosis 🥳 I never heard of #Vulvodynia before. Now i have a name for this locolised chronic pain !

I previously got diagnosed with #MastCellActivationSyndrome


Book suggestions

Any good books on. being young and chronically ill? I’m 24 and I find I’m in a constant grieving loop for the person I was and wanted to be. That may sound dramatic, but it’s the truth. I’d like a book with suggestions to help me cope with the loss of my health and give practical advice for surviving the everyday struggles we deal with. For reference I’ve been diagnosed with vulvodynia, Pcos, and hemiplegic migraines. Unofficially, I believe strongly that I have fibromyalgia or something similar based on my symptoms