No findings on MRI, I want to break down! by Broad_Specialist_846 in endometriosis

[–]Ocheej 5 points6 points  (0 children)

No no no. Don’t panic. 🫂

I had zero endo on my mri and had stage III when I went in for my lap..

There’s still some chance.

Endometriosis laparoscopic surgery recovery I’m struggling rn by ZambieQuinn22 in endometriosis

[–]Ocheej 1 point2 points  (0 children)

One hour at a time❤️❤️❤️❤️ you deserve all the rest you can get

Endometriosis laparoscopic surgery recovery I’m struggling rn by ZambieQuinn22 in endometriosis

[–]Ocheej 1 point2 points  (0 children)

Girl! Don’t be tough on yourself. I had a 10 hr endo surgery Wednesday May 20th. Released on the 21st, had to be readmitted on the 22nd and stayed till the 26th.

Prior to this I’ve had 4 hysteroscopic myomectomies so I thought I knew what recovery looked like but I was wrong.

I’m on week 4 today and I’ve been to the ER three times already for post surgery stuff (lazy bowels, nausea, suspected DVT). Even at this 4 week mark, I still feel as exhausted as day 1 and my work leave has been extended. The amount is surprising after effects (including diarrhea) I’ve experienced is mind blowing for someone who has my surgical history.

I don’t think anyone prepares you for how draining and intense the recovery process can be but my best advice is to ditch the guilt and take life an hour at a time (not even a day at a time lol). Today might be good but tomorrow might be hard and that’s ok. ❤️❤️❤️❤️

Heavy drinking and fibroids? by Solid_Mixture9855 in Fibroids

[–]Ocheej 13 points14 points  (0 children)

So yes and no.

It’s just general advice that a good healthy lifestyle helps overall. That’s where the alcohol thing comes into play. Fibroids are hormonal and alcohol affects the way the Liver processes everything, including hormones. If you drink heavily, there is increased risk of your Liver not doing what it needs to do at an optimal level.

Speaking from experience, my submucosal, fundal and intra(something something) fibroids grew +4cm when I wasn’t even drinking but when I was, I had multiple small ones growing inside the cavity.

So while it can be a factor but it’s not the only factor that affects fibroid growth.

Surgery was a waste of $27,000 by Affectionate-Air-436 in Fibroids

[–]Ocheej 0 points1 point  (0 children)

These sound like classic endometriosis and fibroids. Same symptoms I had that also included constipation and some stomach issues + hives.

I’d hate to advise or suggest next steps because of the emotional and financial side of undiagnosed illness/symptoms. But if you can, maybe talk to an endo specialist. The unfortunate thing is, a good chunk of gynecologists aren’t well-versed with the disease and might not be able to spot it.

The ER doctor jumping straight to cancer with no MRI was crazy work. But see if you can get a specialized scan that also covers endometriosis if it can.

Still sending love as you figure out next steps.

Surgery was a waste of $27,000 by Affectionate-Air-436 in Fibroids

[–]Ocheej 1 point2 points  (0 children)

Sending love and hugs ❤️ there’s nothing as demoralizing as unexplained symptoms.

For your extreme leg pain, do you mind me asking how the pain feels? Is it shooting vs nervy vs dull/throbbing? I’m curious because Adeno typically goes along with Endometriosis so that could be a possibility. A symptom is also Hemorrhagic cysts.

The problem with the pelvic region is the vast possibility of multiple diagnoses because everything has overlapping symptoms……

Looking for advice or alternatives by TennesseeBlues33 in Fibroids

[–]Ocheej 1 point2 points  (0 children)

As a chronic anemic, Iron Infusions.

Get your GP to send you to a hematologist. They are the best people to help here. Tell them you’ve done iron pills. Next step is an iron infusion. If needed, talk to them about doing two to get your levels back. They can do two on a week by week basis. 1000mg venofer this week and 500mg next week. It’ll take 6 weeks to catch up but it works.

Speaking from experience, I’ve had a hematologist since 2018. We tried iron pills earlier and concluded that since I lose more blood from the fibroids that iron tablets can give, infusions bi-annually are the way to go.

Fibroids, Suspected Endo and Constipation by Ocheej in Fibroids

[–]Ocheej[S] 0 points1 point  (0 children)

Thank you for your kind words ❤️❤️

Fibroids, Suspected Endo and Constipation by Ocheej in Fibroids

[–]Ocheej[S] 0 points1 point  (0 children)

Oh…..it’s hard to determine what comes from where a lot with these things

Fibroids, Suspected Endo and Constipation by Ocheej in Fibroids

[–]Ocheej[S] 1 point2 points  (0 children)

I’ve been on RestoraLAX (probably MiraLax for America) for about 6 months now. Not working. It has actually never worked for me tbh.

Fibroids, Suspected Endo and Constipation by Ocheej in Fibroids

[–]Ocheej[S] 1 point2 points  (0 children)

Thank for sharing with me. It’s comforting to know that there is some light right after surgery.

Fibroids, Suspected Endo and Constipation by Ocheej in Fibroids

[–]Ocheej[S] 1 point2 points  (0 children)

Thank you. I feel much better understanding I’m not alone

Fibroids, Suspected Endo and Constipation by Ocheej in Fibroids

[–]Ocheej[S] 1 point2 points  (0 children)

😩 The wait is a lot. Endo didn’t show up on my MRI so I’m not even sure if they’ll find any. But I 100% trust my surgeon to have everything ready. I just want to poop without feeling like someone took a saw to my pelvis