Permanent Birth Control: Warning**Content May be Scary and Graphic to Some People**
Let me start at the beginning; In 2008 I had a permanent birth control, called Essure, put into my Fallopian tubes. I was 40 and knew I was done with children. Since I lead a healthy lifestyle, I didn’t see any downside to this-knowing my body could handle it. They are simple t-shaped springs used to create scar tissue and block any sperm from getting to the egg. Boy, was I wrong? From this point on, my body changed completely. Unbeknownst to me the implants are made of nickel and my body was rejecting them. I kept having strange side effects that were not disclosed before surgery. Maybe an allergy to nickel? By 2010, I was fully loaded with autoimmune diseases and Lyme disease (or is it?), so I had the implants partially removed, since doc couldn’t get it all out. Many western and naturopathic physicians were stumped by my symptoms. Only a few mentioned that Essure could be causing these problems. These symptoms were not all female related: Thyroid, exhaustion, psoriasis, yeast, pain, change in menstruation, reduced libido, dry uncomfortable skin, anxiety-panic attacks, joint pain, questionable Pap smears etc. Since I was so young and healthy before the Essure, this came as a big surprise. I dealt with these symptoms while searching for clues on both sides of the medical world for eight more years.
Fall of 2017 my gynecologist told me I had a fibroid. I wasn’t worried as I knew many women have them and they go away with menopause, after all I was 49 at the time and assumed it would be soon enough. So, I took some herbal remedies, progesterone and kept my follow up appointments. I never had serious bleeding issues and pain was manageable. Nothing to do but wait to see how this plays out. By spring 2018 I had 2 large fibroids and my uterus was 13cm (9cm is normal). In June they found another and by July another. They were growing in leaps and bounds. I also looked pregnant and felt heavy, like carrying multiple children, not to mention the 20-pound weight gain in less than a year. That June I started bleeding, assuming this was a menstrual period I ignored it. Ten days later I was bleeding more not less, a call to my gynecologist and she says to increase progesterone…so I did. My family and I had a trip to the beach planned a few days later and I was worried I’d be heavily bleeding the entire time. So, doc did an ultrasound to reassure me but found I would indeed be bleeding for a long while as my endometrial lining was very thick. The hotel wouldn’t let us postpone the trip, so we took our chances.
Heavy bleeding while at the beach was no picnic and a real challenge as a mom. It was difficult to tend to my needs while keeping up the façade for the sake of my children. Stopping at the lady’s room a hundred times per day was worrying everyone. My husband tried to distract them while I kept trudging the mile walk back and forth from the ocean (the Jersey shore has a lot of sand). He was probably the one who suffered the most mental anguish that week. Sometimes I couldn’t leave the bathroom for an hour or so and he’d be concerned that I passed out in there. The blood clots were as big as my fist and the bleeding was relentless. Another call to doc and again she said, “increase your progesterone.” At this point I’m not sure where to draw the line at “bleeding to death,” but I still (sort of) trust my gynecologist – so I obey. I was also talking to my Naturopathic doctor and midwife while on vacation. They gave me lots of tips with herbal and homeopathic remedies but did suggest that I should be seen by a doctor. Six days at the beach felt like a lifetime in hell. I could feel my iron slipping away.
Finally, at home and I realized I was wobbly on my feet, couldn’t sleep and found out what restless leg syndrome was- so we went to ER. My hemoglobin was 8 (I thought it would be a 5) and I received much needed blood transfusions for severe anemia. Incidentally, a 12-15 hemoglobin is normal and 11 days earlier it was 13. Profusely bleeding for 11 days made drastic changes to my body and it doesn’t recover that quickly. I fired my gynecologist for not taking my symptoms serious enough. Clearly, I could’ve been put on medication much sooner to stop the bleeding and avoid 8 more months of anemia.
It took 8 weeks to get healthy enough to have my uterus removed. This was not a matter taken lightly but the benefits outweighed the risks. My womb grew 7 healthy babies over 18 years, and I delivered some of them at home in a pool, so surgery was not even something on my radar for healthcare. If anything, I avoided mainstream western medicine when possible, but this was beyond my natural capabilities. Many doctor appointments, second & third opinions, various medications and a multitude of side effects all for something that could have been avoided. My surgery was scheduled on my husband’s birthday and I missed the first few days of my kids starting middle and high school, but the deed was finally done. More mom guilt.
My uterus was 20cm (should be 9cm) with 4 large fibroids. This necessitated the need for the midline incision from belly button through pubic bone. Once opened, gynecologist took uterus, 1 ovary and a Fallopian tube. It came as a big surprise that I was missing my other Fallopian tube. Obviously, my Essure surgeon clearly forgot to tell me something. From start to finish, this surgery should’ve been 1.5 hours but mine was 4 hours due to the need to reopen me for excessive bleeding. After which I was in recovery for 3 more hours. The veins feeding my uterus and fibroids were excessively large and my clotting factors were off. The surgery was also challenging due to a surprise adenomyosis (my uterus was growing into my abdominal muscles). My gynecologist lost sleep over this surgery. Never had he seen such travesty. We will all be scarred for life.
The pain medications worked well enough for me and I was feeling ok the next day. I tried to take a few bites of food a few times but had no real interest yet. Around the 36-hour mark after surgery, I began to experience excruciating pain- not by my incision. I was dealing with an Ileus. My intestines were shocked by surgery and therefore stopped working, so I was put on a liquid diet for 4 days. Even though you can get the best pain medications in the hospital, they weren’t helping. They were doing more harm than good at this point, causing my intestines not to wake up. Alongside this issue, my hemoglobin kept dropping and I was already critical. I was very weak, couldn’t make it to the bathroom or walk the hallways of hospital. This caused Ileus to take longer to resolve itself, causing nausea and pain. For 5 days I barely got out of bed especially not without assistance. There was talk of a nasal gastric tube, but I forced myself to walk more. Not sure why I was so afraid of the tube since I probably would’ve felt better sooner.
On day five I had a blood transfusion with 2 pints of blood. This gave me the energy I needed to shower, walk and chew gum. With permission I tried solid food but still had no appetite and kept getting excruciating pains when I tried to eat. My other healing was improving at a slow speed and I was able to take less invasive medicine. This eventually led me to having bowel sounds, which in turn helped me to eat a few more bites occasionally. The goal is to pass gas and have a bowel movement but impossible when you aren’t eating, and your intestines are still in shock.
By day 8 post surgery, I was feeling restless and wanted to go home… no matter what. So, when doc came to see me that morning, I told him everything he needed to hear for discharge. Once home I regretted it. The pain and nausea were still bad from the ileus. My first night home I was up all night despite sleep being my ticket to heal. The pain from the ileus is more of a sharp, shooting in different parts of the abdomen, kind of pain. It comes in contraction type patterns. It’s scary and intense when it happens. There is no warning sign either. Although I was still always joking around when eating saying things like, “I may enjoy these few bites, but I’ll pay for it in a few minutes.” Sometimes, the pain would start while eating and I would just have to stop. Never in my life was eating so scary.
Even 3 weeks later the pain was so intense I was in bed half the day considering a trip to hospital ER. The fear was that I’d have a full or partial bowel blockage. PTSD kept me from going back to hospital, so I called doctor instead. It was improving at a snail speed, but I’ll take it. I was eating more although still about half of what most people eat. I found myself trying not to eat for fear of pain. I lost 20 lbs but the agony wasn’t worth it. I also had many UTI’s and infections for months. The exhaustion was rough too, needed a nap every day for first 6 weeks or so. If you try and act semi normal and do too much, you end up regretting it.
Over the months, I was able to resume exercise and sex. This was a very slow process as it took a long time to feel strong again. Pain with sex, hormonal fluctuations, chronic infections, anemia and exhaustion were still having an impact on my life 5 months later. The mental healing is ongoing, and it helps to share with others who’ve gone through it. It’s hard to be patient when you hear or read stories of many women who bounce back to life at 3 weeks or sooner-post hysterectomy. I didn’t even get the ok to go back to work until 8 weeks later (which by this time my position was replaced by someone else).
Although I’ve been journaling my experience since I was waiting for surgery, it has been 14 months at this final writing. Most of my physical life is back to normal, except hip pain (where right ovary was removed), digestive and skin issues but I’ll take it. My trek has not been the ordinary story most hear about. Starting with the decision to permanently end my baby making years, many things have gone awry. Of course, at the time there wasn’t much information about Essure or feedback on permanent birth control, so I was part of the many guinea pigs that Bayer experimented on. Sadly, if you read about Essure now, you’ll see my story told thousands of times over as well as many worse tales- with a myriad of lawsuits and underhanded, political kickbacks. As of December 2018, Essure was taken off the market in the USA. I suppose if one really wanted it, she could find it, but my intention is to educate enough women to pass this story on. Even if one more person is saved from my experience, it was worth it.
Here’s a few tips for major abdominal hysterectomies to mull over. I’m aware that you can have laser or laparoscopic hysterectomies but not everyone is a candidate…
- Have a “Doula”! Yes, I said Doula. Someone to stay with you almost the whole time. Even if it’s multiple people, never be alone. Don’t count on staff to come to your aid whenever you need it. This person can find help right away and be your advocate. Follow this rule anytime you have a loved one in the hospital, hospice etc.
- Be realistic. Have back up plans if plan A or B doesn’t work. Prepare to do nothing for at least the first month. If you feel better sooner than this will make you happy.
- Expect to sweat a lot at first. This was due to medication and fluid build up.
- Have extra help at home for at least 3 weeks, especially if you have children and/or animals in need of care. Meals, rides, errands, laundry, dishes etc. can mean a lot when you aren’t feeling good.
- Be sure to eat slowly when your appetite returns. Don’t jump into ice cream and fried foods after having nothing but liquids for a few days.
- Keep a stash of looser clothes for the occasion. Check that your underwear won’t put undue pressure on your incision. I found thin stretchy long skirts, dresses, and shorts to help, but your shirt should have some give too. You’ll look pregnant until the fluids and swelling go down.
- Get a pregnant mommas belly band! Once the incision feels good to the touch (about 3 weeks) take some pressure off the muscles to help heal faster.
- Don’t be afraid to take medicine if you need it. You’ll be in a lot of pain if you let it go too long. Ibuprofen is usually fine once you’re home.
- Consider a pelvic floor specialist.
Good luck to any of you who embark on this journey. Stay positive!
