Today is a rough day.

I had a moment of panic in the bathroom today at work, when I discovered I’d started bleeding heavier than yesterday.

My period was supposed to be done last Sunday, but I started spotting bright red again yesterday.

Today, the blood was dark brown with debris – the so-called ‘coffee ground’ blood. At this point, I finally acknowledged consciously that something is wrong. I suspected once again that I’m dealing with an ovarian cyst. This is something that, in the past few months, I’ve given brief attention to, but pushed it out of my head. Today, I was forced to acknowledge it as fact.

So I looked back in time and realised that this endometrioma or cyst has been in the works for the past six months – since probably November, 2013.

Nov. 4, 2013: 5 waves of intense pain – 7 on the pain scale. Nausea with evening pain flare. Took half a vicoprofen.

Dec. 1, 2013: Nausea, extreme fatigue, shakey legs. Mild to moderate pain. Dark brown flow, turning to red.

Dec. 29, 2013: Bedridden. Puked from pain. 8.5 on pain scale.

Jan. 21, 2014: Moderate uterine and ovarian pain.

Jan. 22, 2014: Moderate bleeding and cramps. Severely fatigued all day, w/ fatigue lasting through Jan. 24.

Feb. 16, 2014: Debilitating pain. Did not note whether mostly ovarian or low back. Bedridden for part of the day on the 17th.

On May 2, 2014 the pain ebbed and flowed. I felt better after work, but then on the way home from hanging with friends, I was crying from the pain, which was mostly on the left side, radiating down my left leg.

May 3: intermittent moderate pain, especially in the lower back.

May 4: Low back pain mainly, but also stabbing on both the left and right side ovaries. The bleeding was subsiding, so I thought I was done with my cycle. That night, the pain cranked up to a 7.5 on the pain scale, and I laid on the floor on my back, crying, while my S.O. looked on helplessly.

May 5: pain and bleeding subsiding.

May 6: my entire back was locking up at the end of the work day. Then shooting pains down side of left leg, then right leg, then pelvic. I started bleeding bright red again.

May 7: ‘coffee ground’ discharge – a mixture of new and old blood, so much that I thought I started my period again. As the day wore on, I got more locked up in the pelvic and low back region again. I had to take 600mg Advil, then half a Norco, by 12pm.

My S.O. convinced me to see a GYN TODAY, so I called and got an appointment.

At the doctor’s office, I got a transvaginal ultrasound done (I’m a serious veteran of that wand, now). This ultrasound revealed a 4cm fluid-filled sac on my left ovary. The GYN also noticed a dark spot at back of my uterus; she said it could be the left ovary attached at back of uterus. I had her look at my previous surgery reports. She thinks it is most likely adhesions pulling the left ovary to back of uterus once again, and that I have either a large cyst or an endometrioma on the left ovary.
However, she urged me to go to ER for a doppler ultrasound and a uterine biopsy, because she is concerned about torsion, which can be dangerous, and she is concerned that the cyst is 4cm in size, which is the threshold where doctors get freaked out about cancer.

However, I am going to wait on it, based upon previous experience w/ cysts and endometriomas.
(See http://www.livingwithendometriosis.org/steph/2008/11/status-on-ovarian-cyst/
and
http://www.livingwithendometriosis.org/steph/category/ovarian-cysts/)

I also told the doctor I’m not comfortable going to E.R. because of an incident once where I went to the E.R. and instead of listening to me and reading my surgery reports, and just making me comfortable with an IV of drugs, they made me wait the pain out, then forced a pelvic exam, stirring up the bees nest again.

Today’s GYN doctor said that as a patient, I have the right to refuse a pelvic exam and ask only for the doppler ultrasound. She says I can request that first and then opt to have a pelvic afterwards, if something significant is found on ultrasound.

Just to make her stop trying to sway me, I did promise the GYN that if the pain gets any worse, I will go to the E.R. and request the doppler ultrasound.

I am feeling very defeated today at today’s news.

Not a day goes by where I don’t curse myself for not sticking to a caffeine-free and sugar-free diet since my last surgery in 2010. I have been able to successfully cut out red meat and pork, but the other two are just too much to ask for, apparently.
I also know that I cannot blame my diet alone on my pain. I know full well that I have abnormalities on chromosomes 1, 7, 9 and 12, and that endometriosis has been with me since I was created. I know this. I know that diet alone is not going to stop the pain. So I need to have a happy medium – not feel guilty about ingesting caffeine and sugar, but not going hog-wild with the two, either.

But cysts and endometriomas will still happen to me. It’s the nature of endometriosis in general, and specifically the nature of how endo affects MY body.

I’m just tired. I’ve been battling this goddamned illness for 29 YEARS.
I’ve had two surgeries. I don’t want any more surgeries. I know of women who have had over 20 surgeries and they’re STILL not any better. In fact, some are worse off! So I don’t want any further surgery. I just want to try to make it to and through menopause, and see if that burns the disease out.

But dear gods, I am so, so tired.

Happy New Year…

Sorry I’ve been away for so long.

Just so I don’t leave you hanging, I did not have a better day after my last journal entry. In fact, it was my worst pain day at work that week. I wore a heating pad all day and consumed 1,600mg Advil.
After that date, I didn’t record my pain for the rest of the week. I was likely too pissed off about the pain to bother recording it. Although I had noted on December 1 “Nausea, extreme fatigue, shakey legs, mild to moderate pain. dark brown flow, turning to red.”

I got my period again near the end of the year and was actually bedridden from the pain.

THIS PART IS IMPORTANT:

Since December, I have become sexually active again, and as a result have been dealing with drama in one case, and what my housemate calls ‘New Relationship Energy’ in another case. So maintaining my endo blog had not been priority. ;)

Although I blamed becoming sexually active again as the reason why I must have been bedridden. Why else would I have had such a great year previous to that, pain-wise, other than the fact that I’d had a noticeable lack of sex, specifically penetration sex?

Ok, interrupting the pain diary for a moment to tell you about relationship stuff!
In December and again in February, I had a fling with a friend. I ended it after February, though. In March, I began seeing a newish friend, and we’ve been together – not separated by more than five days at a stretch – since March 21st (Happy Spring!).

Right…back to the pain blog:
Looking back through the last 24 months of my blog, it reads like someone who grabs at straws each month, looking for a tiny amount of hope that things could be improving pain-wise, but in reality the pain actually has remained the same the entire time.

For all of 2013, though I was bedridden only once, the pain continually got to between 7 and 8 on the pain scale, which is still unacceptable. The surgeries have not been worth it in that regard. The only benefit of surgery was a short-lived lengthening in span between pain cycles. The Gabapentin is what helped me to not be bedridden for over a year, until I became sexually active again. The end of December and into January was very rough on me, pain-wise. Same thing for February.

During March, I pushed through the pain because there was so much already planned for that weekend. I got up to a level 7 pain on March 13, and said ‘screw it’ and didn’t record my pain levels for the rest of the week/weekend because of all that was going on.

In April, I got george TWICE. On top of that, I began dealing with severe low back pain. I wasn’t sure if it was related to endo, a cyst, or spinal deterioration. I went and got an X-Ray, and bone spurs were found on my lumbar spine (#1-3).

My latest cycle began April 29th. The pain was intermittently bad. I consumed over 1,200mg Advil a day for a week. On Friday, May 2, I was out with friends and had to pee every half hour it seemed. On the way back home that night, the pain ramped up and was so intense on the left side that I cried a little. It hurt to be in sitting position. I just wanted to be in bed with a heating pad. Again I wondered if I had an ovarian cyst, or if the endo was sticking my left ovary to the back of my uterus again. But I didn’t want to dwell on that, because it’s too depressing.

Oh! Also…starting in January, 2014, my cycle changed from 28 days back to 25 days. It took a few frustrating months for me to notice, but after continual let-downs when my period showed up 5 or more days ‘early’, I went back and re-counted my cycle days again. Sure enough, it’s back to 25 days after a short stint on a 28 day cycle.

So now you are basically up-to-date.