It Hurts & I’m Not F*cking Depressed: Chronic Pelvic Pain.

Via on Jun 7, 2012
photo only to be used in posts by Brooks Hall
Flower in a model pelvis.

About one third of women will experience chronic pelvic pain in their lives.

But chronic pelvic pain can be hard to properly diagnose.

Many women may be told that these symptoms are more psychological than physiological and their concerns may be dismissed. The National Pain Foundation and the Mayo Clinic found that about 61 percent of women who experience chronic pelvic pain go undiagnosed.

However, with persistence & the help of the right medical professionals, it’s possible to find relief from chronic pelvic pain.

My Personal Experience With Pelvic Pain

I started having horrible pelvic pains and a heavy period around July 2011.

Doctors were unable to find a cause after ultrasounds and hormone tests were all within normal limits. They chose instead to focus more on my thyroid being the issue, since a) there was an anatomical anomaly there and b) the thyroid affects reproductive hormones that could have been giving me the issues with my period and ovaries. The hope was that “fixing” my thyroid would “fix” everything. It didn’t. “We’ll wait until after January,” the doctors said. “If things aren’t better by then, we’ll do exploratory surgery.”

In January, when things didn’t get better, I was told to come back in another six months for more tests. It was at that point that I broke down and started crying. “No,” I said.

“Excuse me?” asked the resident, whom I had already taken an extreme dislike to.

“I said no. I’m tired of this. Something has to happen. No one is in constant pain like that for months. My thyroid obviously isn’t the problem, and I’m sick of taking pain medication; I need to know what’s going on, and someone has to do something.”

Indeed, although I tried to avoid taking pain medication—relying on breathing, meditative, and yogic practices instead—sometimes the pain meds were necessary. I had ultimately ended up with a stomach ulcer from being on NSAID (nonsteroidal anti-inflammatory drug) pain medications, and then I was given medication to take for the ulcer. I wanted off everything and I wanted my body to function in the manner it was designed to. The way I knew it could.

“I’ll get the attending physician,” she said curtly. He came in and he looked 10 years older and tired. “Look. I don’t see a reason to do this. The job of your ovaries is to make cysts. If you have cysts on your sonogram, they’re functional. This isn’t how we usually do things.”

“If the cysts are functional, they shouldn’t have remained on my sonograms from October 2011 to January 2012,” I shot back.

“Maybe it’s when we’re doing your sonograms; where you are in your cycle,” he replied.

“I don’t think so. I’ve had sonograms since July, when I first came to the ER because of the pain, and these were never present until October. Not too mention, I’m in pain. It’s not my thyroid. It’s not the hormones. Something isn’t right. The last time I was here, I was told this was the next step. It needs to be done. I can’t do this anymore!” I fumed, tears still streaming down my face, hot and burning with my frustration.

“Fine,” he said. “Fine.”

I emerged triumphant, with a surgery date of February 1st. February 1st came, and to the operating room I went. I was having a laparascopy, a procedure where they make a few small cuts on your abdomen and in your bellybutton, then stick a very small camera down there so they can take a little look-see. They check for the spread of cancer or endometriosis, remove cysts or tumors, take samples for biopsy and even remove organs if need be.

The surgeon was supposed to be the most senior surgeon on staff. He came to speak me right before surgery and had me sign the consent forms. As anesthesia flooded my veins, and my eyelids started to flutter closed, I saw the resident who I disliked and my last thought was “Why is she here?”

When I woke up, she was the first person I saw. I was in so much pain that I didn’t even care. This was supposed to be an outpatient procedure, but I was in so much pain and I couldn’t use the bathroom; I had to have a catheter. Because of this, the hospital didn’t discharge me and I had to stay the night. I continued complaining of pain and the hospital kept giving me morphine, but no one ever visually inspected me to make sure all was well. I was told by the resident that they had found “nothing remarkable” and there was nothing wrong. She even went so far as to suggest that maybe I was depressed and it was all psychological.

Another senior doctor told me there was “pelvic congestion,” which is where you develop varicose veins in the abdomen. However, no treatment options were given, and I was told to come back in two or three weeks to follow up.

I was discharged very late the next day, on February 2nd.

The following day, February 3rd, I was back at the hospital, in the emergency room, with severe bleeding. The ER doctors called in gynecology and the resident came. (Yep, her again.) She thought there was a possibility my cervix had punctured during surgery, but it was “doubtful.”

After she examined me, it became clear—whoever had performed my surgery had punctured my cervix, which is likely why I was in so much extra pain. Since no one had taken my pain seriously and performed a visual examination, the hospital had sent me home with a punctured cervix. Because I had been laying on my back in a hospital bed, the bleeding wasn’t a huge problem and overtly visible. (Being at home though, where I was upright and moving about, was another story.) My cervix was glued together, and I was sent home again.

By this time, I was absolutely over the entire situation, and knew that advocating for myself wasn’t enough if the people I was advocating to didn’t have the skills to perform the necessary procedures needed. I knew I had to switch doctors, and quickly. Due to an issue with my insurance, I was having a difficult time changing care providers. However, I got it worked out and, after a lot of research, I found a doctor I decided was a good fit.

I went to see him, brought all my records, and he actually took the time to read them. He showed concerned and also commented he didn’t think that my laparascopy was completed in its entirety because of the way the cuts where positioned, and mentioned that he felt we needed to do it again but wanted to wait to let my cervix heal completely from the trauma I’d endured.

We set a date for March 29th. I went to the new hospital (N.Y. Methodist) for pre-testing two days before and liked the staff there as much as I liked my new doctor. I was nervous after my previous horrible experience, but knew this had to be done.

When I woke up March 29th, I felt my stomach and felt that there was a cut much higher up than my bellybutton and much larger than the others. My heart sank—I knew that meant he probably had to remove things. Moments later though, the thought comforted me, because it meant that he had done his job as a doctor.

Sure enough, when he came to talk to me after surgery, he said that he’d found (and corrected) severe endometriosis, a cyst on my left ovary and a cyst in my left fallopian tube. (The majority of my pain had been on my left side.) Most people wouldn’t be overjoyed at hearing something like that, but in a way I was—I felt validated and confident that I had placed myself into good hands for care.

My body and my intuition were correct. My pain wasn’t a figment of my imagination. My body was crying for help—any one of those conditions could have rendered me infertile if left untreated, let alone the combination of the three.

Listen to your body. You are your own expert on your health. Be a medical consumer, not a passive patient. Your doctor works for you—and if he or she isn’t doing their job, don’t be afraid to fire them and find someone who will. You’re the boss!

Listening to Your Body: Chronic Pelvic Pain

Because the stats on chronic pelvic pain are so disheartening as far as getting a diagnosis, it is necessary that any woman in this situation move from being a passive patient to a proactive medical consumer—get involved with your health!

  • >> Pain is an indication that something is wrong. Don’t take this lightly, even if your medical professionals don’t think it’s a big deal. Your doctor works for you. If you feel that you are not being heard, feel free to fire your doctor and find a new one who will take your concerns seriously.
  • >> Chronic pelvic pain is pelvic pain that lasts six months or longer. According to the Mayo Clinic, many women will never get a diagnosis for their pelvic pain. However, they also point out that lack of a diagnosis doesn’t mean the pain isn’t real. When there is no diagnosis, a) testing should be done to try and reach one and b) medical professionals should treat with pain management techniques.
  • >> Some doctors may mistakenly believe that it’s a chronic pain problem, as opposed to a regional chronic pain problem, so be clear about your symptoms and what you’re experiencing. Otherwise, the proper diagnostic tests may not be ordered and you may be sent directly to pain management specialists.
  • >> One reason chronic pelvic pain is so difficult to diagnose is because there is no single, uniform cause—there are several different ailments that can cause chronic pelvic pain, and it’s possible to co-occurring ailments.
  • >> The most common causes of chronic pelvic pain in women are endometriosis, irritable bowel syndrome, dysmenorrhea, ovarian cysts, polycystic ovarian syndrome, pelvic congestion syndrome and interstitial cystitis.
  • >> If your doctor recommends a hysterectomy as treatment for chronic pain, get a second (and third!) opinion. Thirty percent of women who end up in pain management clinics for chronic pelvic pain have all ready undergone a hysterectomy.

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Editor: Lynn Hasselberger

About April Dawn Ricchuito

Allegedly, she's a writer. Or something like that.


6 Responses to “It Hurts & I’m Not F*cking Depressed: Chronic Pelvic Pain.”

  1. Uma Simon Uma Simon says:

    Good article. Thanks for writing.

  2. Helen says:

    Wow, what a story! I've been there to a lesser degree with my ear and although it was never resolved, I had to stand up with my hands on my hips and tell my doc "here is what is going to happen!" after he'd dismissed me for the umpteenth time. Thanks so much for sharing.

  3. […] Health is something that I’d like to think my family and I no longer take for granted since my mom (really my grandmother, who raised me) was diagnosed with Stage III breast cancer, and since I’ve recently gone through my own drama with doctors. […]

  4. Kittenplay says:

    THANK YOU!!!! I hope you're better now and so glad you shared this story!

    My experience is all too familiar to yours. 20 years ago at age 17 I began the start of the pelvic mess began with stage 1 cervical cancer and various mysterious pelvic issues. I have had a few years of reprieve and insisted vehemently to not have my uterus removed. Luckily my paps are normal now but the pain and general messed up cycle have returned. It's been two years of extreme pain and my experience with my medical "care" team is all too similar to yours. Bounced from incompetent and insensitive doctors and teams of residents who insisted I knew nothing of which I talked about and suggested I was just mentally stressed or that I should just be more tolerant to pain (and many thought I was simply seeking opiates which is very insulting).

    Finally I made headway (pelvicway? lol) in getting a CT scan, muscle relaxants to try and referral to the regional pain clinic. The gynecologist my PCP referred me to for my troubles was terrible. After two years and 20 visits, I was being seen for incontinence after a kidney infection, she rolled her eyes when she saw me then I was told go back to my PCP and tell her I can't be seen anymore in her clinic because she doesn't treat kidney stones. I don't have them and I had just been screened during the past month for a arthritic issue and the telltale sign and that on large doses of indomethacin the pelvic pain became worse. After she "diagnosed" me, she got up and walked out of the room coldly, I asked what should be done about my incontinence she replied with her back turned as she walked down the hall "drink more water". My PCP isn't much better but I saw her practice partner and she agreed that this was serious and ordered up everything after she listened intensively and asked me many questions showing her true concern. I hope this is a start of a good outcome.

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