Journal

Just wanted to let you know that I have a massive endometriosis diary going over at http://www.livingwithendometriosis.org/steph/, so you can read the latest there. It got to be too much for me to update two or more places at once, so I have been putting my day-to-day life with endo all in one spot on the web. 

Well I've been MIA again for two months. Sorry about that. I've been overwhelmed with trying to keep up on two other endometriosis forums, and managing the blog I created for endometriosis news and research, and all the comments and such that goes along with running a video blog as well. Throw in full time work and recent Facebook addiction and poof! There went paying attention to Daily Strength for awhile. I feel bad. I wanna know how my sistas are doing. Time to catch up on the DS forum...

In the meantime, a quickie update on me. I started bleeding three days early, right as I was about to leave for work this morning, but I came in to work anyway. So far so good, not much pain. I'm on 800mg Ibuprofen preemptively. 

My sites: 

http://www.livingwithendometriosis.org/

http://www.youtube.com/user/stephlwe/ 

I barely had any bleeding from November 2nd to November 4th, but I had moderate to severe low back pain. What little bleeding I did have was dark brown. I noticed the same thing happened in September - I started off slowly with the dark brown old blood and then the bleeding and massive pain set in a few days later. 

This is not normal for me. 

The bleeding became free flow by 3pm on November 4th, and continued heavy through November 7th. I was at work on the 7th when the pain became so bad, I called my GYN for help. They got me an emergency appointment that day and my husband picked me up from work and drove me to the doctor. 

My GYN berated me and told me I should have just gone to E.R.. We talked about what I was going through and then she gave an ultrasound. She found nothing and told me there's nothing she can do for me. She urged me to try hormonal therapies again. I continue to refuse. I told her I was still having sharp pains on the left side, and I told her I worried I could have an ovarian cyst. She reluctantly obeyed my plea to do a transvaginal ultrasound.

WELL GUESS WHAT.

She found a cyst and was surprised. She measured it at 4cm and told me she worried about torsion and ectopic pregnancy (despite the fact that I am sure I am not pregnant and the pee test came out negative when she insisted I do the test).

After telling me about torsion and scaring me over it, she then said to give it 6 weeks and see if I'm feeling better before I get a second ultrasound with a radiologist. 

WTF.

I went home and read everything I could about ovarian cysts.  I found out 4cm is considered huge and is the threshold for which doctors refer patients for cancer screening. 

Meanwhile, the pain wasn't abating, even though the bleeding ceased by November 9th. My period lasted two days longer than it normally does, and now the pain wasn't going away.

Oh and I've been severely constipated all month, despite being on a detox diet. I'm told ovarian cysts are the reason for the constipation.

The pain lasted all through November. I'm a nanny and I couldn't take the baby for any walks because it would cause great pain to push the stroller up and down the big hills she lives on. I couldn't go on bike rides or anything strenuous. I barely got laundry done weekly without having to take meds for the pain.

I got my period again on November 27th and once again, it started out with dark brown old blood. I must have called my GYN 12 times this month to push for the referral for the radiologist. She finally called back the day before Thanksgiving and told me she'd refer me. I called the radiologist and couldn't get through. 

Yesterday, I came this close to calling an ambulance for the pain. I was panicked. Home alone again. Scared. But just as I was fretting over making the call, the Tylenol 3 kicked in and the pain went from 11 to 8 and falling. 

Today I called the radiologist back and was told they would not book an appointment for me unless I had the authorisation number and ICD-9 codes. 

Grrrr!!!!

Called GYN back and they relayed message to my doc. They called me back, gave me the info, and I was able to schedule for this Thursday. FINALLY. 

I've never been at a point in my entire life where I was in constant pelvic pain. This is really scary for me. I've never been at a point until now where I had to carry my medication and emergency card on me at all times. It's depressing. I used to have two good weeks out of a month. I want those back again. Goddammit I want the ENTIRE month, EVERY month.