Introduction - Living With Endometriosis

Introducing myself: how long I've had endo, what stage, date diagnosed, hormonal treatments, pain meds.

Category:

People & Blogs

Tags:

• endometriosis
• hormone
• pain medication

[donnad23]

wow i cant believe this was the 1st video i watched before getting diagnosed.(my comment below) i am now 19 and on dec 22 was diagnosed with stage 2 endo. i seem to be having alot of problems with low back pain and swelling. im hoping that i will get better. any updates with you?? hope yuor doing well :)

[stephlwe]

@donnad23 - I'm so glad you finally got a diagnosis so that you can tell people "see? i'm not crazy!"

Your surgery was almost a year ago - is this new pain? It is not unheard of. Surgery ranges from no relief to a few months relief, to pain relief for a few years.

I'm in the unfortunate category of not having had any pain relief with the first surgery, so now I'm going in for my 2nd surgery on December 17th. I keep meaning to make a video update...

Did you do hormone therapy after surgery?

[donnad23]

@stephlwe good luck during your surgery!!! i hope it all goes well and you get some relief. actually its been almost 2 years since my surgery(dec 22) and 1 month after my surgery i went on depo and had a whole bunch of symptoms. 6 months after i found out my endo had spread. right now im not on anything and i feel better than before(minus the back pain and swelling) are you on hormone therapy? if so what have you used and did it help? for some reason nothing will help mine. best of luck to you!

[stephlwe]

@donnad23 - I was put on Yasmin after my 1st surgery in 2007. It made me crazy within 2 weeks...suicidal within 2 months. I had to be put on suicide watch. I will never do hormone therapy again - same thing happened when I took Loestrin in 1990. Like you, nothing helps. I've been on pain meds all the way up to Dilaudid and back again. I can only handle Tylenol 3 and Advil. Everything else is unmanageable side effects. :/

Yeah, we're better off without the bad pills on top of our bad illness!

[brokendoll8777777]

hi,

i JUST learned for sure its on my bladder. i suggested it to my doctor months ago but he doubted it, turnes out i was right. do you like me also get alot of UTI symptoms without infections because of it being on your bladder? (link 4 u found on LJ)

i am unable to do hormones also, although its not live i havent tried (5 different birthcontroll pills, progestron cream, lupron, provera) all them give me the negative and often rare negative side effwects and yet i finde no releife.

[stephlwe]

Hi! I'm so sorry you also have it on the bladder. We often do know what's really going on with us before doctors know or believe us. I used to suffer from UTI and yeast infections all the time until I started being super careful during sex, and started showering instead of bathing. I used to get infections so often that one GYN told me he thought I might have a STD rather than endo. I fired him immediately.

I always hit into the rare side effects on any meds too, including hormones. :(

[stacygallagher]

hi thank u for sharing ur story hope ur ok, I had laparoscopy surgery on friday 2 find the cause of adominal pain (suspected endo), whilst under he found extensive endometriosis stage 4, so he done excision of the endometriosis & ureterolysis cos i even had adhesions on my urethra&kidney thx 2 endo, not the news i expected wen i woke 3hrs l8r, am 23 & DEVASTATED, i will b under the consultant 4 the rest of my life, i find out in 3mon if i will b infertile, 8yrs it took 4diagnosis.cruel disease!

[donnad23]

thx for sharing. im 17 and i have surgery for endo and my ovarian cysts on dec 22 and im scared to death. hope all goes well with you and with your endo

[viewyourpic]

Thank you so much for sharing this. I was just diagnosed with Endo but believe I have had it for at least 10 years. I look forward to hearing more of your story. Thanks for opening up!!

[stephlwe]

Thank you! I am glad you are here, too. The more of us who speak out, the more we can address the 'invisible illness' stigma that people have against us.