Sarah Joan Swann Shares Her Story Of Trying To Find A Doctor Who Would Listen, And The Botched Procedure That Started Her Essure Problems
It is rare to find a doctor who truly understands your condition from the beginning. It takes time to work with a patient to understand how her symptoms connect to a complex GYN condition. But finding a minimally invasive GYN specialist who has treated thousands of women successfully, and who truly listens can change your life.
Women don’t have to suffer for years with GYN conditions or pain from procedures that were not performed correctly. It is important for women to know they have a voice when it comes to their healthcare, something Sarah Joan Swann discovered over 23 years of trying to get her doctors to listen to her.
“I knew right away that something just wasn’t right about my periods. I started my periods at age 9, 2 months before age 10. My menstrual monstrosities only got worse, by the time I was 15 years old I had a very authentic self-realization that I did not ever want to have my own children. I began asking my OB/GYN about tubal ligation. I asked every year for that choice over my own body and for 15 subsequent years doctors told me I was too young. I never wavered in my decision.”
“When I was 30, I ultimately realized that I could ask the same OB/GYN for my same request for the foreseeable and indefinite future, and somehow still never have the right to choose what to do with my own body so long as I was under his care.”
Finding a new practice gave Sarah hope that she would be able to make decisions about her body, but still met resistance.
“I found a very personable group of doctors at an OB/GYN practice in Fairfax, VA. The new doctors reluctantly consented to offering me a permanent tubal sterilization procedure but then immediately started aggressively marketing the Essure device. I was serenaded by the ability to place the implant vaginally in an outpatient setting instead of undergoing what the doctor described as a much more aggressive operation at a hospital for the ligation, and I figured that since it was the least invasive I would consider it. After 25 minutes of their sales pitch, it became apparent to me that they really weren’t interested in doing the traditional tubal ligation when they could do the Essure placement in-house. Boutique Obstetrics façade or not, I was determined to have my ligation in any way that I could.”
Essure Problems On The Rise
The Essure device is made of nickel-titanium coils encasing Polyethylene terephthalate fibers that are placed into each fallopian tube. The fallopian tubes are expected to scar over the coils, naturally resulting in a permanent blockage at the opening of the uterus. Doctors are trained how to place the coils, but not all have had success. There are more than 6,000 reports included in a June 2015 report from the Food and Drug Administration (FDA) Manufacture and User Device Experience (MAUDE) database that shows that in addition to the device breaking, doctors need better training on placement and understanding the potential risks.
“The original product flyer didn’t list any of the Essure risks. When I asked my OB/GYN about any risks, she said that there was a very, and she stressed very, small chance that some women have problems with it, but dismissively passed on my concerns by remarking that I was young enough that it shouldn’t be a problem. She said the risks on extraordinarily unusual cases included, migrating coils, perforating the fallopian tubes or perforating other pelvic organs, abnormal or irregular bleeding, ectopic pregnancies, and/or allergic reactions to the nickel contained in the device.”
Problems At The Implantation
“August 2012 I had the Essure coils placed while at an outpatient, in-office setting, under twilight anesthesia. I woke up after the completion of the procedure entirely cognizant that something had gone horribly wrong, despite being sedated while it occurred. Still groggy, I asked the doctor what happened, what went wrong. When the doctor tried to plant the coil in the right tube, the placement scope that delivers the device into the fallopian tube broke, damaging the Essure coil as well. She told me that she got the placement scope out, but as far as she could judge the Essure coil was situated in the right place. She assured me that it would still do the intended job, which is to scar the tubes.”
“I was shaken and utterly heartbroken. Here I had been waiting for this procedure for over 15 years, and when I finally get the procedure done, it broke. The day after I had the implant, I went online to do some research and found an Essure Problems support group on Facebook. It was an eye opener.”
Still worried, Sarah had her follow-up 90 days later. Through a hystosalpingogram (HSG) or visualization of the fallopian tubes, the Essure implants, while damaged, had by all appearances worked on occluding the fallopian tubes.
That was November of 2012. Sarah put it out of her mind hoping she wouldn’t have to worry about it anymore.
Then Everything Got Worse
“I started getting a lot of fatigue, bad memory and concentration problems, gaining a lot of weight really quickly, and then 6-7 months later, almost a year after I had it placed, I started having crying spells. Never cried more than a few a days during my adult life, I knew I was taking a turn for the worse. All this time, I kept telling my GYN something was wrong.”
Sarah felt like her body was set on self-destruct mode.
“Things about my life just kept getting worse. I lost a career position I held for almost 8 years that I was absolutely in love with. I was chasing away my friends, boyfriends, family. And all of that behavior was because I was held hostage by my pain, nonstop. It’s like having an abscessed tooth, but you don’t know where that pain is coming from until the tooth hurts so badly that it needs to be extracted except that I couldn’t find where to start the extraction.”
“My hair was falling out. My entire body was acting like it was under attack. I wasn’t able to recognize what was going on. I was diagnosed simultaneously with a tumor on my pituitary gland. I was horrified to discover that nearly all of the women in the Essure Problems support group I joined on Facebook have the same problems, and often times to a much worse degree than my own. Throughout all of this, I thought my symptoms were bigger than the device. But, I no longer have women in my family that I can ask, because they are all gone.”
In 2013 Sarah was going to 4 different doctors every month; A psychiatrist, an endocrinologist, a gynecologist, and a general practitioner. They were prescribing lots of anti-depressants that can work exactly opposite from what they are prescribed for in some patients, with the most dangerous side effect potentially causing suicide.
“I was on an insane amount of prescription medications and OTC pain killers, with no obvious cause for my ailments in sight. My mother committed suicide in 2012 because she in so much pain from fibromyalgia. When she was 18 or 20 years old she had an IUD put in, but she still managed to get pregnant. I never heard from my her about having menstrual problems and I can’t ask her now. So who do you turn to when you have these suspicions and concerns?”
Heavy Bleeding and Pelvic Pain Isn’t Normal
“Doctors were telling me that my heavy bleeding and pelvic pain was normal. It’s not normal. I know that. I just wish more doctors did. I told my gynecologist, something is wrong. For four years, nearly every month I told my general practitioner something was wrong with my bleeding. All they could see was that I was anemic, and their prescription strength vitamin treatments were not solving the anemia. It was because I was bleeding so heavily every monthly menstrual cycle. The kind of chronic fatigue that accompanies anemia is hard to describe with words. The damage it does to you and your life is astronomical.”
“After a piece of the Essure had literally fallen out of me, my gynecologist ordered another very painful HSG exam at my request, and that exam showed that the right side Essure device that was broken when it was initially implanted, had migrated significantly upwards through my fallopian tube. These were supposed to stay put where they were implanted inside of the openings to the fallopian tubes, but were now moving around like a missile in my pelvis”
“The OB/GYN practitioner told me in the most patronizing way that there was no possible way that the Essure devices or the 24.5mm fibroid could be causing me pain. I felt like if this doctor had a 1 inch tumor growing inside of some sensitive part of his body, then he wouldn’t be so dismissive of the possibility that my 1 inch fibroid was a potential crisis for me. I snapped, in the same way I did when I grew tired of being told for 15 years straight that I couldn’t make the choice to decide to have a tubal ligation when I was 30. Except this time, I didn’t have 15 more years of fight in me to give. I told the OB/GYN that I wanted it all out, the tubes, the uterus, the Essure devices, the fibroid. In most dismissive tone, my OB/GYN doctor told me no, surgical treatment is not what he felt that needed to be done and that first I had to prove that I had tried everything else. That was the last time I ever saw or spoke to that OB/GYN practice again.”
Finding a GYN Specialist Who Listens: Dr. Paul MacKoul, MD and CIGC
Women who experience negative reactions to Essure need to have the coils removed by a specialist. Incorrect removal can cause permanent damage to reproductive organs, and increases the risk of needing additional surgery. Many women end up requiring a hysterectomy, salpingectomy (removal of fallopian tubes) or salpingo-oopherectomy (removal of fallopian tube and ovary). Depending on the location of the coils at the time of removal, it may be necessary to perform additional procedures. Having a laparoscopic hysterectomy, or other minimally invasive procedure performed by a fellowship trained specialist gives patients better results.
“I knew that I needed to stop seeing general practitioners and find the right specialist to help treat my rapidly deteriorating condition. I kept researching online, asking through social media sites about the experiences people had with different surgical GYN specialists in the Northern Virginia/DC/Maryland area, particularly for surgeons who were willing to operate and remove the Essure devices.”
“That’s when I found out about Dr. Paul MacKoul, MD and the superior work that his team does. I scheduled a consultation with him right away. I was amazed at the flexibility he offers in scheduling. I got a Saturday afternoon appointment in Northern Virginia just a few miles from my home. I felt instantly positive and confident in his willingness to take my concerns seriously. I almost cried out loud as Dr. MacKoul reiterated in agreement that the symptoms I was concerned about were in fact, a very serious health problem. Finally, I could stop holding my breath; I wasn’t going to die from this illness today, or any other day. He asked me when I would be available for surgery. ‘Tomorrow.’ I replied.”
Sarah had a minimally invasive hysterectomy with the removal of both tubes on January 18, 2016. Dr. MacKoul located a small amount of endometriosis which he extracted, along with the fibroids and and the migrating Essure devices. The broken, right side device had ultimately reached the very top of the fallopian tube where it connects with the ovary, and had perforated through the walls of the fallopian tube, lodging dangerously close to the otherwise healthy right ovary.
“Twelve hours after surgery it was like being reborn. I am not exaggerating when I say that I’m feeling better than I have in the last 23 years of my life. I’m only 34, so think about that for a moment.”
Stick To Your Guns And Be Your Own Best Advocate
“Dr. MacKoul literally saved my life. He may not have known that, in fact I don’t think anyone around me realized just how emotionally, mentally, and physically overstrained I was, and so desperate for help.”
“No amount of anti-depressant pills, birth control pills, psychological cognitive behavior therapy, or tree-hugging, green smoothies drinking, yoga freakiness would have cured me from fibroids, endometriosis and rouge Essure devices. You have to be your own advocate. Resilience is not something that can be taught in school. It’s something you learn during a life-long trial by fire. The hope that I got out of this was that I feel like I can tackle anything going forward, at least now I feel confident I can handle it.”
“Champions like CIGC are extraordinarily rare, so I think the women who need help should hear that you’ll be there for them too. I have already been promoting CIGC tremendously inside of a private support group on Facebook called Essure Problems. Four years ago there were about 2,000 members with concerns over health issues related to the device. Today, there are over 26,000 women on that group who are all having similar gynecological problems and apprehensions about treating them. To the staff at CIGC are my rock stars. Thank you for giving me my future back. You were my golden ticket!”
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