I love all the positive support happening in this forum! Y’all are so beautiful. When my cysts were found I read everything I could find on the subject, so I want to share my story and maybe someone will find some comfort or reassurance in it. In the very least know you’re not alone :)
I am 33 with no underlying health conditions other than being given the vague diagnosis of “probably PCOS” about a decade ago, but until recently have never had any PCOS or cyst related issues.
In mid-March, about three months ago, I started feeling an unusual pressure in the right side of my abdomen, a couple inches to the right of my navel, and bouts of intense nausea. The feeling of pressure was like someone was jabbing me with their fingers but wasn’t painful, just like I was being poked by something. I live in the United States and am uninsured so I just hoped it was stress and tried to move on. For context, I’m writing this in June of 2020 and the abdominal pressure started shortly after my state went into lockdown and I lost my job, so chocking it up to stress seemed reasonable.
Over the course of the next month and a half the jabbing pressure went from occasional to constant and I began to experience alternating diarrhea and constipation, feeling like I needed to pee often but having difficulty emptying my bladder, bloating, fatigue, and a total loss of interest in food. When the pressure turned into mild pain and began feeling like it was actually coming from my liver area I freaked and finally went into the teaching clinic for an ultrasound. They found two cysts on my right ovary. A small one they said would probably resolve on its own and a 6 centimeter septated cyst. The doctor said this second cyst was either one cyst with a septation in it or two cysts pushed together. She gave me a prescription for pain meds and a referral to a gynecologist but NO additional information and acted annoyed and cut me off to say “you’ll be fine, these are common” when I tried to ask follow ups. She didn’t explain the prognosis of a “complicated” cyst, why it had formed, what my treatment options were, what I could do to prevent more from forming, or what warning signs I needed to look out for.
That was the Friday before the long Memorial Day weekend and I felt very alone and frightened. Over that weekend the pain became more and more intense, moving from a 2 on the pain scale to a 7. I also began to feel that weird ambiguous sick feeling. Not nausea, although that was definitely in play, but this horrible feeling of just being very ill, like something wasn’t right. The pain and pressure became more and more intense until I instinctually felt like something was going to happen... then there was a sudden sharp stabbing pain. It only lasted maybe five seconds but it was so shockingly painful I literally dropped and broke the glass I was holding. After that the pain and sick feeling gradually lessened over the next couple days until I felt 98% better.
Two days ago I had my IUD removed (cysts are a known risk with the IUD, although I wasn’t aware of that when I had it put in last year) and also started birth control pills to try to shrink or prevent new cyst growth. I’ve read and been told conflicting information on if birth control pills will shrink existing cysts but at the least it appears they will help prevent new ones and that’s good enough for me. This new doctor (the gynecologist I was referred to) was not able to preform an ultrasound but scheduled one for next week and expressed concern over the (reported) size of my cyst and let me know that with anything over 4 cm they begin to worry about ovarian torsion, but that only 17% of women with cysts over 4 cm experience torsion. Even without imaging she said she suspected I had experienced a rupture over Memorial Day weekend. I felt reassured and thought I may be beyond the worst of it.
Unfortunately, a couple days before the appointment with the gynecologist I began feeling the familiar building of pain, pressure, and nausea. Two days ago, the day after my appointment, the pain really began to intensify and was a 7/8 for hours. All that day I was couch bound, curled up with the heating pad in pain and incredibly nauseous. That night I slept 2 hours and was woken with sharp level 9 pain. I have a high pain tolerance like many women but this was a different animal. I couldn’t shift my weight or speak without waves of pain and racking nausea. I spent a couple hours trying to breathe through it. After 2 hours and keeping in mind what the doctor had said about torsion I decided it was time to go to the ER. As soon as I got in the car the pain immediately fell back to a 3/4. I called my gynecologist for advice and she said it sounds like I’d had another rupture. She said there was no correlation between the size of the cyst and the level of pain and that I would likely feel sore in the area for a few days as now I had basically an open sore on my ovary. She reassured me that our bodies are very good at absorbing cyst fluid.
Today I still feel the tenderness in my right side but it feels like a good tenderness. Like healing. I don’t think I’m beyond this yet, though. I may have had two ruptures, but there were maybe three on the right side, and I’m beginning to feel a light jabbing on my left side as well, although it’s totally possible it’s just anxiety... something I’ve said before haha. This experience has validated that I am much stronger than I give myself credit for and I believe you are too! So even if I do have to face another rupture I know I can do it.
I am shocked and yet not surprised at all that there is no treatment for ovarian cysts other than surgery. Its a woman’s issue and we do live in a patriarchy, after all. I’ll outline here what supplements I’ve been using but please keep in mind I am not recommending you try these without talking to your doctor first. When I was first diagnosed I began taking wild yam supplements, a tincture of dandelion root, red clover, and Vitex, as well as drinking red clover infusion daily. I’ve also been using a hot castor oil compress on my abdomen which I find especially comforting. For me a heating pad is much more effective at pain relief than either ibuprofen or Aleve. Unfortunately those have both been pretty useless for me. I don’t know if the supplements and compress are doing anything but I feel more proactive doing them. I also don’t know if they contributed to the two ruptures happening so close together or if it’s just coincidence but personally I rather soldier through a rupture than have an invasive surgery.
I have my second ultrasound next week and I will be sure to come back with an update.
Sending you all strength and healthy vibes!