Alyssa Pesini is a bubbly 27-year-old who, like many women with endometriosis, has her medical history all but memorized. Her journey with pelvic pain began when she started having her period at 13 years old.
“I’ve always had really painful periods,” Alyssa said. “I had back pain, constant abdominal pain and was calling out of work,” she said. “I couldn’t work out without being in pain. Everything felt tight, and I was in pain all the time.”
When she brought up these issues to her doctors, many of them told her that her pain symptoms were a normal part of growing up. Because some of the women in her family also had reproductive issues, Alyssa always knew something wasn’t right. After suffering for years without relief, she knew she had to see a specialist. When she turned 18, she visited a reproductive endocrinologist in the Philadelphia area for help.
Her specialist recognized Alyssa’s symptoms as endometriosis. Since laparoscopic surgery is the only way to confirm endometriosis, Alyssa’s specialist scheduled her for surgery. Once in surgery, her specialist excised the endometriosis and, during Alyssa’s postoperative care, explained briefly what the disease is and what she did to treat it. However, her specialist’s explanation for endometriosis contained terms Alyssa had never heard before. She turned to the internet to better understand her new diagnosis.
“I knew what endometriosis was, but I never understood exactly what it was doing inside of me, and I feel like I had to research some of that on my own,” she said.
Learning About Endometriosis
As Alyssa began to familiarize herself with endometriosis, she learned that the disease is thought to occur when the lining of the uterus (the endometrium) is shed during menstruation and some cells attach to areas outside of the uterine cavity. These cells can cause pain, and are particularly active during a woman’s menstrual cycle.
Alyssa’s specialist placed her on three –month increments of birth control to manage her period and her endometriosis. However, it wasn’t long after her surgery before the pain returned. “I was out of pain for a year afterwards, and then I started having pain again,” she said.
Returning to her specialist, Alyssa had a repeat laparoscopy two and a half years after her first surgery. She found that Alyssa’s endometriosis had grown back. After surgery, Alyssa once again found herself out of pain, and her specialist placed her on continuous birth control to manage her symptoms.
The surgery relieved her symptoms for a while, but they soon returned. However, a new problem emerged: her specialist had moved to a practice out of state, and Alyssa needed to find a new doctor to help treat her pain. She soon found an Ob/Gyn in the area who wanted to manage her endometriosis with a different approach.
“He started me on Depo Provera injections, and was trying to put off surgery as long as possible,” she said. Her doctor eventually agreed to perform a laparoscopy, but when he examined her pelvic cavity, he determined that Alyssa needed to see an endometriosis specialist for further care.
Finding a Specialist
“My doctor told me I should see a specialist to handle it, but he didn’t really tell me where or who I should go to,” she said. “I did some research on places that specialize in the type of surgery I needed.”
Through an internet search, Alyssa found the Endometriosis & Pelvic Pain Center website. She decided she wanted to schedule an appointment with the Program Director of the Endometriosis & Pelvic Pain Center, Dr. Barbara McGuirk
Alyssa’s first appointment with Dr. McGuirk was different than her other pelvic pain consultations. “We sat for over an hour and she went over all my surgery reports with me, and all of my images, and explained what everything was,” Alyssa said. “I was very pleased. I don’t think I’ve ever had a doctor do that with me before.”
It was during this appointment where Alyssa learned how her endometriosis was causing her pain symptoms. “My pelvic adhesions had all my organs tightly pulled together,” she said. “The surfaces of my abdominal cavity were very tight and didn’t look the way they should. Dr. McGuirk said she was surprised my other surgeons didn’t remove any of the scar tissue I had, because that was causing a lot of my pain.”
Because she spent so much time with her, Alyssa was optimistic about her chances when Dr. McGuirk recommended another laparoscopic surgery. “She made me feel really confident that this was going to get rid of my pain,” Alyssa said.
Feeling Comfort After Surgery
The prospect of finding relief was a little scary to Alyssa because she had spent so much of her life being in pain. But almost immediately upon waking from surgery, Alyssa noticed one thing. “My back didn’t hurt,” she said. “My back didn’t hurt me at all. It was amazing. It’s still amazing to me now.”
When she woke, she found Dr. McGuirk by her side. “Dr. McGuirk sat and talked with me before and after my surgery,” Alyssa said. “That made me comfortable. She waited until the anesthesia wore off before she talked to me.”
Alyssa said the transformation after surgery wasn’t limited to just her back pain disappearing. “I don’t feel that tightness in my abdomen anymore, either,” she said.
Now, she has plans to accomplish things she couldn’t think of doing during the years she was in pain. “I haven’t exercised in forever because it always hurt, but I’m excited to start working out and being healthier,” Alyssa said. “I felt that was restricted before. Who wants to work out when they’re in pain all the time?”
Education is Key
Alyssa said that the staff at the Endometriosis & Pelvic Pain Center were there to help during every step in the process. Because living in Philadelphia sometimes made scheduling her appointments difficult, she appreciated how quick and efficient the appointments were.
“They were always quick to respond if I ever had to call or ask a question,” she said. “I always got the information I needed. They communicate with each other, and you can definitely tell.”
When reflecting on her treatment, Alyssa said education was a key component to her understanding her diagnosis, knowing where to go to get help, and ultimately finding the Endometriosis & Pelvic Pain Center. “I think women need to be more aware of the symptoms and the signs of endometriosis,” she said.
She hopes that other women choose to follow that path and become more active in managing their pelvic pain, rather than waiting. “It’s just so much better to deal with it now than to wait until your bowels are entwined and your organs are stuck together,” she said. “It’s worth it to get checked early and not to wait. Who knows how I would have been down the road if I hadn’t gotten the surgery.”
To women who might be afraid or anxious about having surgery, Alyssa says that the result is much better than the alternative. “It’s scary knowing you’re going to need surgery, but the relief that you have afterwards—it’s worth it,” she said.