Just Diagnosed -- Looking for Advice

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So, I have literally ALWAYS had problems with my periods. Started early, they never "evened out"--the longest period I had was almost 9 weeks and the longest between was 4 months, and I have never been regular. I've also had intensely painful periods with heavy bleeding. I was diagnosed with PCOS early on (in my early 20s) because of the heavy, irregular cycles.

In December, things took a turn. I went to the ER because I had level 10 pelvic pain. And I am no stranger to what level 10 pain feels like--I have herniated disks and have been left without painkillers after surgery, broken teeth, etc. And this was bad, level 10 stabbing pains every 10-20 seconds. So I went to the ER, after taking 1600 mg ibuprofen and two midol in under 6 hours with no change to my pain levels. They gave me a non-opiate painkiller, which did nothing for my pain, then did a CT with contrast and a transvaginal ultrasound, both of which turned up nothing. Then the ER doc gave me a shot of dicyclomine, and the pain didn't go away, but the stabbing jolts of level 10 pain went from every 10-20 seconds to every 1-2 minutes. The doctor impressed on me, multiple times, that I needed to see an OB/GYN. And it had to be a doctor, not a NP or PA.

The pain hasn't gone away since that day. Sometimes it's a dull ache, and sometimes it feels like my guts are being torn out (usually around my very-unpredictable period, which had come 4 times between December and February. ) In early January, I saw my GP. In late January, I saw a new OB/GYN and had an endometrial biopsy. In mid-February, the OB/GYN performed an ablation, removed my fallopian tubes, and then did some exploring. A week after the surgery, I got a call: My fallopian tubes were normal. No other info. So, I thought everything she saw was normal.

I had my follow-up visit, and everything is not, in fact, normal. The OB/GYN showed me pictures of the various endometrial lesions she found, as well as removing a benign cyst. She said she was able to cauterize most of the lesions, but there were "a few" she couldn't due to placement. She had hoped that the others being cauterized would have helped with the pain, but my pain level hadn't decreased. So, she prescribed Orilissa. Also, I've had rectal bleeding just before my period, every time, for years. A gastroenterologist said he found a "lesion" during my colonoscopy. I think it's likely The lesion is endometrial.

I read up about it. I'm taking calcium to combat bone loss. I haven't had any side-effects besides some dizziness. But every night about an hour or two before my dose is due, I start having the pain again.

So, questions:

  1. What does it mean that I had a cyst? She wasn't clear on what it was, or even where it was.
  2. Why is my pain coming back at night? And will that stop after using the medicine for longer?
  3. Will I still need to get a hysterectomy/ovarectomy?
  4. How long can someone take a drug like Orilissa?
  5. What does it mean now that I have this diagnosis? Is there anything special I should be more aware of/paying attention to?
  6. I know this is a long shot, but is it possible endometriosis is related to the cysts I've gotten in my skin ever since I was about 10 (when I started having my period)? I have them on my arms and legs, non-cancerous, and very gross.

Thanks in advance.

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  • Posted

    You've had a very rough time, and i'm sorry to say that i can't answer much at all except to say that endo can cause us to pass blood rectally. If left alone, eventually you might need a bowel or colon resection. That is a huge thing that always comes with the possibility of a temporary or permanent colostomy or ileostomy. This must be followed up since you have the history of rectal bleeding combined with that finding of an intestinal lesion.

    You didn't say how old you are. Age factors a lot into surgical decisions. At the moment, everything may have to be put on hold for the pandemic.

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  • Posted

    Hi! I'm actually currently waiting on a endometriosis lap scheduled in a couple of weeks but my doctor did talk to me about Orilissa as a post surgery option. From what she told me, how long you can remain on the medicine depends on the dosage. Higher dosages typically only allow you to take it for 6 months. Smaller doses you can take for up to 2 years. I would talk to your doctor about your exact dosage as well as how long you would be able to take it.

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