If you’ve been following my blog for any length of time, it should be fairly obvious that I have a painful condition called endometriosis. One of the primary symptoms of endometriosis is chronic pelvic pain.

A Bit About Endometriosis

Many times the pain from endometriosis is most intense around the time of a woman’s period, as the endometriosis lesions respond to normal female hormones and break down and bleed. Some women experience pain all the time, including during or after sexual intercourse. The overall pain can spread elsewhere, however, since endometriosis can actually spread anywhere in the body, like a cancer.

As a brief overview, my journey with endometriosis began in April 2014, when I was hospitalized with severe acute pelvic pain. After a misdiagnosis, I determined via the Internet that endometriosis was the likely culprit. It turns out I was right; a diagnostic laparoscopy with tissue biopsies in June 2014 confirmed I had endometriosis. Reflecting on my medical history, I realized my symptoms had started when I was 14, meaning it took 14 years after symptom onset for endometriosis to be diagnosed. Shockingly, this is not uncommon; it takes an average of ten years for a woman to be diagnosed with endometriosis in the United States. Average.

When my pelvic pain got worse after the surgery, I at first despaired. Then, again consulting the Internet, I discovered a procedure called excision surgery. This is the gold standard for treating endometriosis, as it cuts around and underneath the lesions to completely remove them. Most surgeons only perform a procedure called ablation, which burns the tops of the lesions, but leaves cells underneath the charred tissue to grow and multiply. This is why patients treated with this type of surgery need repeated surgeries every few years.

Two Trips to Atlanta

My research led me to the Center for Endometriosis Care in Atlanta, Georgia. I had excision surgery performed in October 2014. Endometriosis was found in the exact same locations (and more) where it had been ablated five months before. As mentioned above, since ablation leaves cells behind, this should surprise no one.

My recovery from excision went very well. I was generally pain-free for about 8 months. But then, in August 2015, a different kind of pelvic pain began to make itself known. It only continued to get worse as time went on. I finally went back to the CEC for surgery in July 2016. It was discovered I had an extremely rare broad ligament hernia (specifically in the area of the mesosalpinx) that was causing intermittent ovarian torsion and bowel obstruction. (Owie!) Once that was stitched up, my pain improved greatly.

But the chronic pelvic pain is still, well, chronic. After the 2016 surgery, the improvement in pain eventually reached a plateau from which it hasn’t budged since.

There can be any number of reasons why I’m still having chronic pelvic pain. There are plenty of conditions out there beyond endometriosis that could be the culprit. But that doesn’t make not knowing why any easier.

A Trip to the Gyno

I finally saw my OB/GYN again a month ago for the first time since January 2016. I needed a pap, but my primary reason for making the appointment was to discuss my ongoing chronic pelvic pain. (It was getting even worse by this point, as it had taken me a full five months just to get in to see my gyno.) He read the operative report from my 2016 pelvic surgery and viewed the intraoperative images. He was as flabbergasted as my surgeon about the hernia. Apparently that kind is really rare!

After examining me, he laid down the gauntlet of my options, so to speak.

Obviously, since the problem seems to involve my right ovary most, it was time for another ultrasound to make sure the ovary looked ok.

Assuming the ultrasound came back clear, my options were thus:

1. Go to my reproductive endocrinologist and have her do exploratory surgery. (He refused to perform any more surgery on me.) Or I could return to Atlanta for more surgery (which we can’t ever afford again.)
2. Or, in my OB/GYN’s words, “Decide how much pain you can tolerate being in.”

There are few times in my life I have been as disheartened as I felt in that moment.

But it got worse.

Another Ultrasound

I finally had my ultrasound last week. (I determined that this was my 8th transvaginal ultrasound in 13 years. Do I get a prize? I should, darn it.) It turns out I have a small (likely hemorrhagic) cyst on each ovary; the right one is 1.2 x 0.9 x 1.4 cm and the left one is 3.3 x 2.5 x 2.8 cm. It makes sense that the right one is smaller because I just ovulated on that side this cycle, about 5-6 days prior to the ultrasound. So that’s the problem, right? I’m just a champ at making painful hemorrhagic cysts! I’ve had them multiple times before, going back to at least 2005, and they hurt like whoa.

Well, not according to my OB/GYN. According to him, the ultrasound was normal. (Although the radiologist’s interpretation was: “Bilateral complex ovarian cysts, possibly hemorrhagic cysts.”) Per my gyno, the cysts are “tiny” and “There is nothing on the ultrasound which would point to a GYN reason for these symptoms.”

I guess the fact that my right ovary has been going berserk (and believe me, this pain is definitely ovarian) for over three years isn’t actually painful and I must be imagining things. Can we say gaslighting, my friends?

I have some choice words to say about this situation and they’re not nice or Jesus-sanctioned. Unless you possess ovaries within your body, you cannot comment on whether or not ovarian cysts of any size are painful; I don’t care how many years you’ve been a doctor.

A Trip to My PCP

A few days after the ultrasound, I saw my PCP, who has been faithfully managing my chronic pain for over four years now. She seemed visibly stunned when I told her about what my gyno said, both about the cysts and my remaining options. (This was of course the point during the visit that I started crying because I am so sick of all this.) I told her I felt like I had been fired by my gyno and that there wasn’t anyone who could help me.

Our consensus: We’ve sort of reached the point where we don’t know what to do. I feel completely…like giving up. (Don’t worry, not that kind of giving up. I cry a lot, but I’m ok.)

I’m going to see a chiropractor. I’m going to have acupuncture. I have another ultrasound in six weeks. I’ll try to get into see functional medicine sometime within the next year. Then they can throw another 30 pills at me in addition to the 35-40 pills I already take every day.

What Do I Do Now?

It kills me that we’ve reached the point where my pain is being either completely ignored or being blamed on “stress”. So of course another antidepressant was added on board. Because since I’ve been in chronic pain for four and a half years and no one can determine the cause anymore, I must be crazy, right?

And that’s not even half of the issues I’m going through right now, which I won’t discuss here. Yes, there are other things besides my chronic pelvic pain making my life a living hell.

I feel helpless.

I feel hopeless.

I feel like no one can help me.

Suffice it to say that I am swirling down into despondency again. I don’t know what will help me get back out of it this time.

💛ribbonrx