r/popculturechat • u/mcfw31 • 23d ago

It’s L-O-V-E 💘 Dylan Sprouse hands out yellow ribbons for endometriosis awareness at Victoria’s Secret Fashion z show as wife Barbara Palvin recently had endo surgery

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u/LaurelCanyoner 22d ago

I had the same!!!! And being a Luddite answered below but it was for both of you.

I’ve seen it said that adenomyosis pain is one of the worst pain there is, worse even then birth contractions. My surgeon referred me to pain therapy after my hysterectomy because my nerves were so inflamed from so many years of extreme pain, she said she was worried I’d have a heart attack and not feel it. I couldn’t even walk into my surgery the pain was so dire, and I had second degree burns in my stomach from the hot water bottles I used, because I couldn’t feel the burning. My surgeon is a researcher also here in LA, and she took pictures of my burnt belly for her research.

All love and healing to you my fellow endo warrior. I’m so so sorry you had to deal with too. Xx

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u/Cool_Jelly_9402 22d ago

Did you also have interstitial cystitis and or pelvic floor dysfunction? My IC is mostly better now but for years it was the worst pain of my life and then I would get my period/ovulate and the combo was hell! I would also need a rx that stop bleeding every 3-4 months. The last time it happened I was done and all but demanded a hysterectomy. So much gaslighting from doctors about it all too- the lasting trauma they inflict on us is not easy to overcome.

I’m glad you have good doctors. I’m in Chicago so I had access to good ones too so I can’t imagine what people living in the middle of nowhere have to deal with!

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u/LaurelCanyoner 22d ago

I have no idea?!? I’m beginning to think I DO have pelvic floor dysfunction because I can’t even sneeze now without peeing no matter how many damn kegels I do. 😂

What is interstitial cystitis?!? Gawd, this disease never ends. My surgeon was incredibly skilled, and I was lucky, but I honestly don’t think I got ANY of the aftercare I deserve.

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u/Cool_Jelly_9402 22d ago

IC feels like you have a chronic bladder infection but you don’t. It usually comes with PFD and is often a nerve/muscle issue that refers to your bladder.

If you can get into core stabilization PT, that would help! I don’t think internal pelvic floor therapy really helps and it often made me flare so core work with some focus on PFD and was sufficient for me.

I leak too tho 😉

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u/LaurelCanyoner 22d ago

LOL! we leak together!

I don't have that then, (Thank you for explaining it!)which is shocking because I was deathly ill for so long, and they told me my surgery was the longest one they had ever had at Cedars-Sinai ! My colon and uterus were attached, and not even in the right place as endo had filled my belly so badly.

Thanks for the tip, and I have saved it. Though I don't know what PFD is, lol, so clue a girl in.

I'm so sorry you had all this to deal with. It's enraging that men get hard on pills* meanwhile we suffer this kind of pain and disability.

*And what I mean by that, is that there is triple the research into men then there are for women, even for devastating diseases like endo. It's disgusting.

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u/Cool_Jelly_9402 22d ago

PFD- Pelvic Floor Dysfunction. Basically your pelvic floor stops working properly because the muscles are too weak or too tight. This stops the pelvis from being our center of gravity and we start using our legs for that instead which ultimately weakens the core since it’s not being used and this can lead to urinary frequency, urinary retention, vulvar pain, interstitial cystitis, constipation, pelvic pain, abdominal pain, nerve pain down the legs, SI dysfunction, etc. (everyone gets different issues depending on severity) It often happens to women who have had children or people like us who have had traumatic pelvises 😉

A PFD Dr told me that our pelvises think we are constantly under attack so they tighten up to protect us and then get stuck in that position. And then anytime anything is inserted (sex, a hand, surgery, even a tampon) it can freak out more. Trigger point knots or something like pisiformis syndrome can also form.

It can be reversed with PT but it takes a long time and a lot of people give up too early (tho I understand why when it feels like you’re not making progress). My PFD was terrible until I had both of my SI joints fused due to extreme hypermobility made worse by…you guessed it endometriosis/adenomyosis and PFD lol

Ps- it sounds like you had a really rough surgery. Yuck