Beth didn’t feel quite right after a major surgery almost nine years ago. A benign ovarian dermoid tumor was strangling her right ovary and fallopian tube. Beth’s surgeon removed the tumor along with the ovary and tube—essentially dead tissue.
A few months after the surgery, Beth said she felt faint at times. Then, her faintness turned into a dull, persistent abdominal ache.
“I went back to the office that had done the surgery, and they told me the only way that they could find out if something was going on was to do a laparoscopy,” she said. “I didn’t think it was enough to warrant that, so I let that go.”
Beth’s symptoms persisted. She was also experiencing pain during and after sex. Her pain continued into the following year, when she had an intrauterine device (IUD) inserted.
“My body went into a tailspin. I had severe cramping for a number of weeks,” she said.
The pain was severe enough that she had the IUD removed three months later. But by then, Beth was experiencing more pain and additional symptoms, such as pelvic floor spasms, bowel spasms, pain with urination and bowel movements, and even nerve pain when sitting.
She sought help from six different specialists, including urogynecologists, pelvic pain specialists and even a neurologist. But no one could pinpoint the cause of Beth’s pain. The specialists diagnosed her with one or a combination of conditions, such as pudendal neuralgia, vulvodynia and interstitial cystitis. A variety of different treatments, including nerve blocks and bladder washes, along with medications such as amitriptyline and Lyrica did little to relieve the pain.
In the meantime, Beth took it upon herself to try and find what was wrong.
“I read books. I did research online,” she said. She found a physical therapist that specialized in pelvic pain, which became an integral part of her care.
It was her OB/GYN who eventually recommended Dr. McGuirk at Reproductive Associates of Delaware (RAD). Beth said she was skeptical of yet another referral.
“I almost didn’t call, because I thought, ‘Here we go—it’s going to be another doctor with no results,’” she said.
But Beth was impressed with Dr. McGuirk’s willingness to listen and her enthusiasm about her work. Few of Beth’s physicians prior to Dr. McGuirk were interested in what she had to say.
Beth said she had approached her other specialists with the idea that her prior surgery could be responsible for her pain, and that her pain was also more intense on specific days of her cycle. She said that the specialists either dismissed the ideas, or admitted in passing that the prior surgery could be responsible—but didn’t have an answer for how to treat it.
“No one wants to admit that going in and doing surgery would cause other problems,” she said. “It gets into the area of liability, but that wasn’t where I was coming from. I just wanted relief.”
Dr. McGuirk’s approach was unique, she said, because she took Beth’s concerns seriously.
“She was one of the first people to agree with me that my original surgery might be one of the reasons for my pain,” she said. “She tries to take a really comprehensive look at the whole person: what you’re eating, what your stress levels are, the issues you have going on in your life, and how you feel.”
Dr. McGuirk suspected Beth had endometriosis and adhesions, and scheduled her for surgery. Beth said the idea of another surgery—and something going wrong—made her worried.
“I was really nervous, because I had thought all along that part of my problem was the prior surgery,” she said.
Relearning What Normal Is
During surgery, Dr. McGuirk removed the fibroids and polyps inside Beth’s uterine cavity as well as endometriosis fibroids, scar tissue and adhesions in her pelvis. After surgery, Dr. McGuirk prescribed medication to help keep the endometriosis from coming back.
Beth said it took a little time to feel better after surgery, and knows there is still work to be done to get back to where she was nine years ago.
“A lot of my symptoms have gone away, and the ones that remain are getting better,” she said. Part of that process involves reteaching her brain certain activities like sitting or standing shouldn’t hurt anymore.
“I developed really bad holding patterns,” she said of herself prior to surgery. “You kind of fold in on yourself and go into a protective position, which really only seems to make the pain worse, but you’re not really aware of that.” Beth found that physical therapy was key in helping her improve her posture and break holding patterns.
Now, she said, “I don’t have to be so protective of my body anymore.”
After putting her life on hold for many years, Beth said she finally feels like her old self again. She’s able to do the workouts she used to do, has more energy, and feels ready to pursue a relationship again.
Being Your Own Advocate
For women with endometriosis and other sources of pelvic pain, Beth recommends finding someone who is willing to listen—especially with a condition like endometriosis that is largely unrecognized.
“If you have a problem that is outside the box, you’re not necessarily going to get what you need,” Beth said. “So, you have to find someone who’s willing to think outside the box, be a problem solver and be willing to listen to you.”
“Be your own advocate and do your own research, because you have to be an active participant in your care.”
Beth said that she found her problem solver in Dr. McGuirk.
“I feel like Dr. McGuirk is really invested in me getting better,” Beth said. “She cares. And every time I’ve seen her, she’s never rushed me—not once. She takes as much time as she needs, and always lets me ask all my questions. And that’s how care should be.”