Months of Cramps with Skyla?

I alluded to this yesterday, but I think my Skyla might be doing more harm than good. In between getting it inserted and my first period with it, Dr. X discovered the ovarian cyst (an endometrioma) that was over 5 cm, so when my period came and the cramps were cripplingly awful, I wasn’t sure what to think, was it the IUD or was it the cyst throwing things out of whack? I’ve never had a baby, but the only way I can think to describe these cramps are contraction-like. They squeeze and pull, and the pains shoot down my legs and into my feet. It’ll be the worst thing ever for 30-60 seconds, and then it just goes away. I’ll be walking along fine one minute, literally crying from the pain the next, and then back to perfectly fine. It’s weird. And it sucks.

I told Dr. X in a pre-surgical appointment that I was having these bad cramps which I associated with the IUD, and he said that shouldn’t be the case, that the IUD should relieve cramps, not make them worse. So, I figured it was the cyst, and eagerly agreed to having him put the IUD back in after my surgery (he had to take it out because a tool has to go in the uterus during surgery to move it out of the way).

It has been nearly three months since my surgery, and those cramping pains keep coming. I haven’t reached the placebo week of the Seasonique yet, so I haven’t had an actual period, but the spotting has been almost constant and these cramps are sometimes unbearable. The spotting is my body adjusting the pill, I’m okay with that, and I’ve read repeatedly that it’s a common side effect and can take months to stop, but these cramps? I think it has to be the Skyla. I have an appointment in three weeks, and unless something drastically improves, I’m going to ask about having it removed. :/


An IUD and birth control pills TOGETHER!

Getting an IUD is what eventually led to my endometriosis diagnosis. After trying multiple pills and hating the side effects of all of them, not to mention the annoyance of remembering a daily pill, I had my heart set on an IUD. So when Dr. X said he’d need to remove my only two-month-old IUD to do the surgery, I immediately (and in hindsight embarrassingly) whined, “Nooooooo.” To which he replied, in true Dr. X form, “Ok, then I’ll slice across your abdomen and go in that way, and you can keep your IUD.” Needless to say, I let him take it out and do the surgery laparoscopically. And when he was done, with me still under anesthesia, he put a new one in, and I woke up not really knowing the difference.

Except that because my endo is so bad, Dr. X wants me on birth control pills for the next two years (at least) to suppress my ovulation, which even hormonal IUDs don’t do. I have a Skyla and since the hormone levels it releases are minimal, he says it is safe for me to keep the IUD while I’m taking the pills. He prescribed Seasonique, so I’ll only have a period four times a year, and because it has the same progesterone (levonorgestrel) as the Skyla. In the past my body has not reacted well to synthetic hormones, so I asked if I could take the same one since I seemed to be tolerating the Skyla, and Dr. X agreed in a it-doesn’t-make-any-difference-to-me-so-we-might-as-well kind of way. I wholeheartedly believe it pays to research and advocate for yourself.

Speaking of which, in all my research, I have found very few accounts of people also having an IUD while taking pills. Dr. X says the IUD should help with localized symptoms, mostly cramping (though that’ll be a post of its own because I’m pretty sure the IUD is giving me worse cramps), and the pills will stop ovulation, so I understand why he’d treat my endo with both, but still, I’m curious…is anyone else out there on both? Or do you know of anyone on both? Have you heard of treating endo with an IUD and pills?

Ten Tips for Laparoscopic Endometriosis Surgery

 This is not a fun surgery, but it’s definitely not the worst (or so they tell me I’ve only had the one), and if you prepare beforehand, it’ll be that much easier. Here are my ten tips for making your surgery experience the best it can be:

  1. Get a buddy – A spouse, a partner, a best friend, your mom, a sibling, it doesn’t matter who, but you’re going to need someone, and not just to drive you back and forth. The first night, my fiancé had to literally pick me up out of bed every time I needed to pee. My abdominal muscles just couldn’t do it. In the following days, hopped up on oxycodone and still in pain, I needed him to help me dress the bandages, change my clothes, bring me food, etc. Every body responds to surgery differently, but it’s still better to have a trusted helper for at least a day or two.
  2. Where a comfy dress to your surgery – Though I repeatedly read that I should wear loose pants or drawstring shorts, I decided on a sundress, and I’m so glad I did. My abdomen was so bloated that my clothes didn’t fit for a few days. I looked months pregnant. My fiance’s gym shorts were even too tight. It was nuts…and so uncomfortable!
  3. Buy new undies – Along the same lines, your regular underwear aren’t going to fit. The hospital gave me a super high-waisted mesh pair, but even so, you’re going to want something big and high for the coming weeks because your incisions are likely going to fall at about your panty line, and you don’t want the waistband constantly rubbing your stitches. And remember, you’ll probably be a bloated balloon for a while too. Size up!
  4. You won’t be able to pee, but you’ll bleed – No one warned me that I wouldn’t be able to pee afterward. They put a catheter in during surgery, and apparently it takes a while for the plumbing to restart after that. For the first couple of hours, my bladder was painfully full, but I couldn’t go. A nurse assured me that this was normal, but still, I’d have liked to know ahead of time. Also, you’ll bleed and spot for hours or days, depending. Hospital pads are huge and bulky, so you might want to bring your own.
  5. Get a heating pad for your shoulder – When doing laparoscopic surgery, the surgeons have to inflate your abdomen to see what’s going on, so they pump it full of gas, and it’s impossible to remove all of it. The gas travels up and creates intense shoulder pain. Everyone told me it’d be worse than the incision pain, and I didn’t believe it, but goodness gracious, it was the worst. Pain meds don’t help, but moving and heat does, so get yourself a good heating pad, or microwave a sock full of rice. You’re going to need it.
  6. Take your meds or you’ll get behind – I’m not one to promote highly addictive pain meds, but don’t be a hero, take them. I was dumb and thought I could handle it at first, but I couldn’t and then I was so far behind that it took hours and hours to get the pain down. Take your meds as scheduled the first couple of days and then slowly wean yourself off.
  7. Walk, walk, walk – Getting up is painful, but walking is glorious. It helps with that pesky pain in your shoulder, and it just made me feel better overall. As soon as you feel strong enough, get up and walk, and then keep doing it often.
  8. Appreciate the pillow – Have a small pillow with you at the hospital, so you can put it between your sore belly and the seatbelt on the ride home. I used a rolled up towel, which also worked. Anything to keep the seatbelt off of your incisions. A small pillow also comes in handy when you’re trying to sit up. Hold it to your abdomen to brace your muscles, and it’ll hurt less.
  9. Listen to yourself and your body – If you think something is wrong, call someone. Better to be safe. My discharge nurse never told me that I could remove the bandages, so for 10 days, I had band-aids covering my four incisions. I have very sensitive skin and ended up with wicked rashes and sores from the adhesive. When I went to get the stitches out, my doctor was shocked. I was supposed to have left them uncovered after day three! He said, “You should have called. If something doesn’t make sense or is hurting you, always call me.”
  10. Don’t rush it – I was told that I could go to work after one week and that I should be back to normal after two, but it took me almost four to feel fully 100%. I napped constantly, was dizzy for nearly two weeks, and was in a general state of malaise for most of the month (I was just diagnosed with a chronic illness after all). And that’s okay. Everyone is different, but I read lots of accounts of other women online who were also exhausted and sore and dizzy for weeks longer than their doctors said. Once I read that, I stopped pushing myself. I embraced the nap and slept-in each morning, and before long, I felt remarkably better. Listen to your body, and give it sleep!

The Diagnosis

It’s 10:30 at night, my fiancé is out with some friends, and I am sitting here on the couch vaguely nauseated. I spend a lot of time nauseated these days. Because my doctor is requiring me to take birth control pills. Because he doesn’t want me to ovulate for at least two years. Because he had to cut open my ovary and take out a 5.7 centimeter cyst that was full of blood. Because my uterus is attached to my pelvic wall. Because I have severe stage four endometriosis.

I was diagnosed about two months ago, but it’s still weird to say. I have stage four endometriosis. The staging makes it sound scarier than it is – though honestly, it does scares me – but it’s not cancerous and it’s not life threatening, so it doesn’t begin to compare to what most people go through when they’re told they’re stage four. Endometriosis is a chronic disease in which the tissue from inside the uterus goes rogue and grows wherever it wants. Usually, it stays in the abdominal cavity, planting itself on the outside of other organs, bleeding like it would for a menstrual cycle, which creates inflammation, scar tissue, pain, and general chaos. Mine, thankfully, contained itself to the reproductive organs – the cyst in my ovary and the scar tissue that has adhered my uterus to my pelvic wall, which my doctor says is impossible to remove and I’d bleed out if he tried. He’s frank like that. I kind of like it. After my surgery, he said, “You have the worst case of endometriosis I’ve ever seen,” which at first, I was taken back, he could have at least tried to sugarcoat it a little, but as my fiancé pointed out, at least we know he’s not withholding anything. But I’m getting ahead of myself. Want to hear the story? You probably do because you’ve read this far, and I want to tell it because the world of endo is a little lonely and I need something to distract me from the nausea.

We’ll start at the very beginning. In December of 2014, I decided to get an IUD because the birth control pill I was on was making me crazy, but my doctor at the time couldn’t get it in. She tried repeatedly, which was super painful, and eventually concluded that I was too tense. She was nice about it, but after numerous attempts, deep breathing, and the old “imagine you’re on a beach” (because that’s so easy to do while someone is shoving a hunk of plastic up your cervix), she gave up. I felt like I had failed. I have some anxiety issues anyway, so being told that I couldn’t have an IUD because I couldn’t relax didn’t do much for my self-esteem. Instead, I went on a different pill which made me bloated, fat, and miserable. I eventually took myself off of it and never went back to her office again.

Fast forward to the spring of 2016. I had since moved 150 miles away and had a new doctor. I decided to ask at my annual exam if she would try to put in an IUD. When I told her the story of my first attempt, she made two things very clear 1) She would never prescribe the abortion pill for an IUD placement right out of the gate, which my first doctor did and which made me feel incredibly sick, and 2) There was no way my nervousness could close my cervix. She ordered a Skyla and told me to call the office when my next period started because that’s when IUDs are easiest to put in. Unfortunately (or maybe fortunately considering how the story unfolded), she wasn’t there the day I got my period, so I was given an appointment with a midwife instead. The midwife, who had read my file, said she’d try but that she had one of the doctors on stand-by who’s “great at IUDs,” as she didn’t want to further traumatize me. After two painful jabs, the midwife went to fetch the doctor, who unbeknownst to me, is male. I’d never had a male gyno, and usually I’d have been a bit uncomfortable with the situation, but I was already in pain and so badly wanted the whole thing over with that I wouldn’t have cared if Rob Lowe came in to do it. The doctor, who I’ll call Dr. X, made two attempts and seemed baffled as to why it wouldn’t go in. He stopped and felt my abdomen as I told him that the pain was too much and I wanted to stop. “Your uterus is tipped,” he said, “Has anyone ever told you that?” (They hadn’t.) “Give me one more try and I’m sure I can do it now that I know how it’s tilted.” Miraculously, and painlessly(!), he was done seconds after that. And then he dropped the bomb: “I want you to get an ultrasound because even though it’s tipped, that was too hard. I think you might have a wall in the middle of your uterus, or maybe you have two. We’ll have to see what the ultrasound says.”  I told you he was frank. Needless to say, I was pretty floored, while at the same time just so relieved to have an IUD, be off the pill, and know for sure that it wasn’t my anxiety that failed me the first time.

The ultrasound – which no one warned me would be transvaginal! – showed I had one wall-less uterus. It also showed a 5.4 centimeter ovarian cyst that was full of blood. Awesome. Dr. X told me it could be a “normal” cyst that grew too large and a blood vessel burst into, which would go away on its own, or it was an endometrioma, caused be endometriosis, which would not go away and would require surgery. There was nothing to do but wait and see. So for the next month, I was not to have intercourse, play sports, run, dance, or do anything that would jostle my abdomen and cause the cyst to burst. “If it bursts,” he told me, “call my office immediately, even after hours, and get to the emergency room.” “How will I know if it bursts?” I asked naively. “You’ll be in excruciating pain,” he replied. Double awesome. I spent the next month on the couch whenever possible, hoping and wishing that it wouldn’t burst and would go away.

The follow-up ultrasound showed that it was still there, of course, which I already knew because I could feel it. I had started having to sleep on my other side to avoid the dull ache.  Now at 5.7 centimeters, he was sure that it was an endometrioma, but because it was right on the borderline size of operating or waiting another month, he left the choice up to me…though he made it clear that he thought he was going to operate eventually no matter what I chose. Not wanting it to burst, or twist and kill my ovary (another happy possibility), and trusting his judgment, I decided to have the surgery.

And then I cried for weeks, sure I was going die from the anesthesia or wake up in the middle of the operation, or have some terrible complication…I was so scared of the surgery, I didn’t even consider the fact that he thought I had a chronic disease. I’ll write another post on the day of the surgery itself, but suffice it to say, there were no complications, he saved the ovary, and I have endometriosis and scar tissue all over the outside of my uterus. He lasered off what he could, put in a new IUD (because he had to remove the other one to “move the uterus out of the way while I operate on the ovary”), and stitched me back up.

At the follow-up appointment a week and a half later, he said I needed to be on birth control pills for at least two years because the IUD wouldn’t stop me from ovulating (though it would help with other aspects of endo) and ovulating = menstruating = scar tissue.

So here I am. Nearly two years after I decided I wanted to get off birth control pills because I couldn’t stand the side effects, swallowing my daily Seasonique while my Skyla silently works its magic.

And that, as they say, is that.