struggling with endo belly

[Sammyed]

hi all!! Not been on for a while but am glad to see this is still going strong.

I was diagnosed with endometriosis in 2015, I tried everything and eventually settled with the marina coil which improved my symptoms drastically. In 2018 I had the coil removed to try for a baby and was lucky enough to be pregnant quite soon afterwards. As soon as I was able after having my little one I had a new marina coil, but it did not have the same experience. I had a period of time where I was on the coil and the pill to try and lessen my period and symptoms. It took about 6 months but eventually settled. In the last year the symptoms have come back, the periods are ridiculously irregular and endo belly worse than ever, but today I also have a really uncomfortable bladder. It feels like there’s loads of pressure on it and like I’ve been punched when I wee! Has anyone else experience this?? X

[BloomingMarvellous]

Yup. Been there got the badge. My problem was the decreased pelvic function caused by ongoing endo increasing the intradominal pressure. Used specialist breathing techniques for endo ( try listening to @Leah-Brueg talk with Dr Angie Muller number 52 on Leah’s website podcast list for ins and outs. ) For the inflammation and understanding the best help have had is from Katie Edmonds book on Amazon Heal Endo.

[Sammyed in reply to BloomingMarvellous]

thank you. Have ordered the book and will listen to the podcast on my walk! Thank you xx

[635703]

yes, pressure on bladder suddenly during sleep followed by immediate vaginal bleeding when I was on Zolodex and should not be bleeding at all as had a Mirena in situ also. Rang 111 and got ambulance out as on right side and could of been appedcicitus as high temp and bad pain. Went in, got pain meds, went home. Before this I got Triarged to Gyne ward and nobody did a thing…..no pain meds prescription. Had to go to GP and what a giant waste of time. I was scared. something was wrong.

Turns out stupid Gynecologist put me on hysterectomy list for no scientific reason but she was 15 years behind current research!!! No cure for Endo and a full subtotal hysterectomy was not going to stop my severe and chronic pelvic pain. When the pill aswell as my Mirena could of worked!!! She ignored my bowel symptoms and turns out I probably have Chrons disease.

I complained to PILS and CEO of Trust sides with dodgy Dr and I was furious but not surprised. No spoons 🥄 of energy to do anymore.

sincerely hoping she has read the current research papers or retired because nobody needs a half arsed Gynecologist when they have Endo!! Still feel so disappointed by her behaviour and they pledge to do good - that wasn’t even average 😱 But there we go……

[Sammyed in reply to 635703]

oh blimey! I’m so sorry that happened to you. I’ve not had any bleeding, it seems to be linked to my filling bladder but as I’m bloated as well it’s really uncomfortable. That Gynae sounds like a nightmare. Hopefully she isn’t about anymore! Have had so many disappointing discussions with Gynae’s 😞

[635703 in reply to Sammyed]

Jessica Duffin Endo Belly Coach on Instagram And she’s got a good website. She’s lovely and knows her stuff as an EndoWarrior herself. You can search through her resources - interstitial cystitis or fowlers syndrome ring a bell. Don’t panic, just a guess and I am not medically trained. Hope you find answers Hun!

A lot of The Gynecologists are hard work…I had a really nice one this time who sorted me out first time. No Endo atm so over the moon 💗🫂

[Sammyed]

I will follow her… I’m not panicking really tbh, just really had enough. Feel like I sort one thing only for another to spring up! This is a new one to be fair! Thank you!! Xx

[Emilybentley in reply to Sammyed]

ahh your not alone ! I too feel that way and it’s so so deflating ! Sending love ❤️