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Endometriosis

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Hormonal Treatment

Hormonal Treatment

The first line of treatment here in Australia is hormonal treatment (I’m assuming elsewhere too).
Every time I have been put on any hormonal treatment I become severely depressed, often requiring hospitalisation for this (awesome, just what you want on top of stage IV endo).
Often the pain increases in both severity and frequency after this as well.
Has anyone else experienced this?

A MyEndometriosisTeam Member said:

Amazing story! I find it weird with the naloxone/naltrexone/narcan as my lastest and best pain specialist has put me on an opioid painkiller with this. I don’t quite understand how it works as it’s an… read more

posted about 7 hours ago

What Mental Health Support If There In New Zealand?

What Mental Health Support If There In New Zealand?

I have had various health issues off and on my whole life, nothing major, I have low blood pressure and through my teen years, it caused me to faint regularly. I also suffer chronic migraines and headaches, which I have managed for years with medication and don't often have problems with them. To top it all off I also have Endometriosis. I was first misdiagnosed with costochondritis in 2016, turns out it was just my first really bad Endo flare up, resulting in multiple hospital stays, luckily… read more

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Does Anyone Else Experience Shoulder + Chest Pain Before And During Their Cycle?

Does Anyone Else Experience Shoulder + Chest Pain Before And During Their Cycle?

I have just started to notice this pain in my shoulders and chest a week before and during my cycle. The pain in my shoulder feels like I have constantly been lifting weights (even though I haven't), and then the chest pain follows soon after. I also notice that a bit of shortness of breath during this time as well.

I had a laparoscopic + excision surgery in April, and I was diagnosed with Endometriosis, and the surgeon removed it
I am wondering if anyone else has experienced anything… read more

Getting Pregnant With Endo

Getting Pregnant With Endo

Hi everyone🥰 My partner and I will start trying for a first baby but I am feeling anxious. To sum up my situation; i have been having chronic pelvic pain for about 11 months now. I took Visanne for a few momths which helped tremendously but stopped it to prepare my body for pregnancy. I have yet to have the surgery because my gyno wants me to try getting pregnant for 6 months before resorting to laparoscopy. has anyone gotten pregnant without the surgery and with chronic pelvic pain? thanks in… read more

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Stabbing Pain When Turned On??

Stabbing Pain When Turned On??

I'm awaiting laparoscopic diagnosis of endo, so I don't know for certain yet if I have it. But when I get a little turned on while kissing my boyfriend, I feel like I'm giving birth to a freaking porcupine or sea urchin. It feels like (*graphic) millions of tiny spikes are dragging down the sides of my vagina, starting at the top of my uterus. Then there's the nausea and super cramps that follow. For hours. I hate it! He feels like it's his fault. I still enjoy kissing him now and then, but… read more

A MyEndometriosisTeam Member said:

So sorry!! That really sucks! But like you said, I'm kinda glad to know I'm not the only one who experiences that. 🙃

posted 2 days ago

Radical Hysterectomy And HRT

Radical Hysterectomy And HRT

Has anyone had a radical hysterectomy followed by either using HRT afterwards or not
If you used HRT, what was the reason, what has your experience been physically, mentally and emotionally
If you chose not to use HRT,
what was the reason, what has your experience been physically, mentally and emotionally?
I am booked to have a consultation in 2 weeks time with the surgeon who would/will be performing this op within the week after?
If you have any questions you think I should ask please let me… read more

Pain

Pain

I was diagnosed with endo last year. I had a partial hysterectomy and some of it was removed (I still have it in the posterior cul de sac) However for the longest time around ovulation I’ve had pain that runs from my lower rib cage up into the back of my shoulder and it even my jaw and head hurt. I’ve also noticed a cough associated with it as well. Has anyone experienced this. I know it could be so many things but it only comes around ovulation.

Worse Pain After COVID Vaccine?

Worse Pain After COVID Vaccine?

Has anyone else had a flair of symptoms after getting innoculated against COVID? I absolutely support vaccinations, COVID is a terrible disease and I'm so grateful I was spared having to have it. But I'd been virtually endo symptom free since starting active-pill-only birth control a year ago. Then all of a sudden my symptoms have flaired in the last two months. After reading reports of women getting heavier than usual periods after getting vaccinated, I realized my flair ups followed my… read more

A MyEndometriosisTeam Member said:

No flares of pain or other endo symptoms beuond my usual, it just really changed the timing of all cycles following it (intervals between longer some months, shorter others), such that now I'm always… read more

posted 3 days ago

Sex

Sex

Has anyone ever struggled with intimacy due to endo? I have zero sexual desire due to pain sometimes. I feel scared to have sex because of the possibility of experiencing pain during. Any advice?

A MyEndometriosisTeam Member said:

Yes I do. About four years ago I had a surgery go wrong, my bowel was perforated and I ended up with a temporary colostomy bag and then an ileostomy. It was meant to have been only a laparoscopy but… read more

posted 3 days ago

ER Told Me I Have A “thickened” Bladder Wall, Could That Be Endo Growing On It?

ER Told Me I Have A “thickened” Bladder Wall, Could That Be Endo Growing On It?

I’ve been having terrible pelvic pain and pressure, peeing a lot but no evidence of uti or infection. I went to the ER and they said my bladder wall was thickened referred be to a urologist and to see my obgyn. The doc asked me if I ever heard of Endo and I wanted to cry because my pcp and ob said I didn’t have it or didn’t suspect it. I have terrible pelvic pain and pain where my legs connect with my torso and the back of my legs are constantly sore. I’ve had painful periods ever since I… read more

A MyEndometriosisTeam Member said:

Thats adnomyosis

posted 1 day ago
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