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This is a safe space to connect and find support for anything related to endometriosis. Whether it's the issues of the moment or the long-term effects, endo warriors are welcome to share their experiences.
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How many doctors or specialists did you see before you received your endometriosis diagnosis?
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Community Voices

Why do my lady parts hate me?

<p>Why do my lady parts hate me?</p>
1 person is talking about this
Community Voices

Has anybody done pelvic floor physical therapy for endometriosis? Was it helpful?

I recently started PT for endo and was curious about successes and helpful information about it.

4 people are talking about this
Community Voices

I'm tired of feeling tired.

I'm tired of feeling fed up

I'm tired of spending all day in bed as I can't do/face anything else

But most of all...

I'm tired of being in excruciating pain due to my endo on top of my Chronic pain due to EDS!

I know there is an end to this but it seems to be so far away as I don't have a date for my op yet, not to mention the fact that that might not even stop the pain!

Also...

I want to get back to work but at the same time I'm terrified that I won't cope when I do!

4 people are talking about this
Community Voices

Leupron Horror Story (it’s a long one)

Does anyone on here have a leupron horror story? I wanted to share mine, an experience that has changed my life. I want to bring awareness to not only endometriosis but also medical trauma. In October 2019 I had my hysterectomy, I’ve had “bad periods” since I started at age 13 and in the 31 years prior to my hysterectomy I had been to multiple doctors, tons of ER visits and tried every form of BC known to man, nothing helped.
A partial hysterectomy was supposed to be my answer. During my laparoscopiy my OB found endo implants on my diaphragm, and was unable to remove them during my hysterectomy. So, 6 months post hysterectomy I’m still having pain. My doctor decides that she wants me to try orilissa to help with the symptoms I’m still having. My insurance (Tricare) decides that they won’t cover orilissa and my only medicinal option they give is leupron. So, we start leupron. I presented to the clinic for my 3rd injection (6 months into COvID) and my nurse who has done my my prior injections seems out of sorts. She and I had good report at my prior visits, and chatted a lot about my military service. But today, she was clearly overwhelmed and distracted. As she was drawing up my medication she started speaking quickly and then informed me she thought something was wrong with the needle, and left the room with the syringe. When she came back she said everything was fine, and proceeded to give me my injection.
Everything was not fine.
As she gave the injection I could feel the medicine running done my leg. When she was done she pulled the syringe away and the needle was missing. She informed me she could find the needle so I quickly started looking on the floor to find it. We looked for a few moments with no luck. She didn’t have a provider in the office that day, so she walked me down to the urgent care clinic to have a doctor there check me out. The doctor at UC informed me that this “happenes all the time” and the needle was likely on the floor. He wanted to send me for an X-ray but first he palpated the area, which sent a shooting pain down to my toes. I instantly couldn’t put pressure on my leg, and he insisted it was still on the floor in the treatment room and had me walk (limp) down to X-ray. The X-ray revealed a needle stick in my hip area at a 90 degree angle. I limped back down to urgent care where to doctor told me that we were going to leave the needle, until it either worked it’s way out OR it got infected and made it easier to find.
My husband who is a paramedic was outraged when I limped through our front door explained what happened. He called a few of our friends who are doctors and PAs and explained what happened. They advised us to go to the ER first thing the next morning. I did, and the ER was appalled by what happened but honestly wanted nothing to do with this malpractice mess. So they sent me back to the clinic that did the injection. The clinic spent 2 weeks giving me the run around…continued in comments.

3 people are talking about this
Community Voices

Hi! Anyone has been diagnosed with endo in your bowels? I was diagnosed with endo at 26, 6 years ago, and have my surgery, but my sintoms began less than a year later. I Have a lot of sintoms related to my, you know, gut, including pain when have bowel movements etc.. but my gynecologist send me to a gastroenterologist, how do you get your diagnosis??

#livingwithendo

12 people are talking about this
Community Voices

Appointment canceled

<p>Appointment canceled</p>
4 people are talking about this
Community Voices

What’s a warning sign you’re about to experience an endo flare?

<p>What’s a warning sign you’re about to experience an endo flare?</p>
3 people are talking about this
Community Voices

Has anyone else been diagnosed really young?

So I’ll start off by saying that I haven’t officially been diagnosed because I am 17 and they don’t want to do surgery to diagnose me until they test every single other thing under the sun since I’m so young. But, I’ve had all of the symptoms since I was 12. I’m on the depo shot and it’s stopped my period but my extreme pain in what feels like my ovaries has started 6 months after starting the shot. It’s constant pain and not period related as it was before. Any tips or meds or anything that has helped you guys? I need to find something until I can get surgery.

3 people are talking about this
Community Voices

Do you experience insomnia because of your endometriosis? How do you manage it?

<p>Do you experience <a href="https://themighty.com/topic/insomnia/?label=insomnia" class="tm-embed-link  tm-autolink health-map" data-id="5b23ce8d00553f33fe9950ee" data-name="insomnia" title="insomnia" target="_blank">insomnia</a> because of your <a href="https://themighty.com/topic/endometriosis/?label=endometriosis" class="tm-embed-link  tm-autolink health-map" data-id="5b23ce7c00553f33fe99213d" data-name="endometriosis" title="endometriosis" target="_blank">endometriosis</a>? How do you manage it?</p>
2 people are talking about this
Community Voices

Has anyone experienced hypermobility after starting visanne? #Endo #Endometriosis #Hypermobility

When I first started Visanne (Dienogest/
progestogen only pill) I pretty mutch immediately was getting Joint Pains and started to be noticeably more flexible. I was hypermobile my whole life but my problems never were as severe as now. I went to the doctors multiple times but every single one of the thinks it can’t be connected to this medication. I switched medications for a while and my symptoms improved a tiny bit. But as soon as I restarted Visanne my issues started to worsen again.

I think the explanation of one of my doctors that „it‘s just in my head“ doesn’t work out because I am „measurably“ more flexible. By that I mean I can touch the floor much easier I‘ve got many new stretchmarks that at just not explainable otherwise ect.

If anyone has ever experienced something similar or has any advice I would be very grateful to hear from you!

2 people are talking about this