Sarah opens up about her struggle with PTLS.

After giving birth to my fourth child, my husband and I decided we were D-O-N-E. Done. So done. We had 3 beautiful girls and now a precious son to complete our family. This last pregnancy was physically hard on me. I did not have any complication or issues, other than extreme pelvic pain from the relaxin hormone and being in a rear ending accident at almost 8 months pregnant resulting in horrible whiplash only exacerbated the pain and discomfort during the last several weeks. Other than that, was a great pregnancy health wise.

Based on physician suggestion and insurance, we decided I would have a tubal ligation. During the consultation pre-operatively, I asked the physician what method and how it was done. I was explained the ‘cut, burn and tie’ method with details and hand gestures. I was reminded that while this was the most effective birth control out there, that nothing is 100%, aside from abstaining. I asked about risks and side effects. I was told that there were none, only risks are those associated with having surgery.

So, I go and have the out patient procedure to ‘tie my tubes’ about 9 weeks after giving birth to my son. Surgery goes well and is over quickly. Took me about 3 days to recover. I had no complications from surgery, I had a small bandage over my navel where the incision was made and you can’t even see the scar now.

Fast-forward to 21 months postpartum. My cycle returns. First two or three cycles were uneventful and somewhat wonky due to me breastfeeding my son. The next cycle involved pain in the middle of it. Around the time I would be ovulating. It was so intense. I couldn’t figure out what was wrong with me. I thought maybe my period was trying to start since it was still irregular. But after 3 days of crazy pain (and I’m not talking cramps. I’m talking intense pelvic pressure and pain and my abdomen being so sensitive I couldn’t let a child or even a cat sit on my lap for fear of them touching my stomach and it causing more pain) my period didn’t start and the pain eased up. I thought maybe it was bowel issues or something random. So I shrugged it off. Then my period came about 2 weeks later. Horrible cramps. More bleeding than I’ve ever experienced and aches that ran down both of my thighs and made walking difficult. Next cycle, it all happens again. Let’s start including the other things that started popping up; my anxiety increased to such a high amount that daily life activities were becoming very difficult and keeping me up the majority of the night, leaving me even more exhausted; my acne became increasingly worse depending on where I am in my cycle. I could start to predict when I would have pain based off of my breakouts. Sex became painful during that ovulation time frame as well. My life was starting to revolve around the pelvic pain and I couldn’t take it anymore.

I went to my regular ob/gyn office and saw someone who was not my normal care provider. I told the nurse of my pain and issues and she told me the physician would be in soon and to repeat all of that to them. While waiting, I can hear the physician and the nurse talking right outside of my closed door. The nurse describes my pain and issues and the physician says that “Women who get their tubes tied start to notice issues that were there already. That all the pain and stuff is really just in their head. There’s never anything wrong with them”. So the physician already had it decided that there was nothing wrong with me, before speaking with me or evaluating me. Physician comes in and listens to me describe my pain and issues with a look on their face of ‘uh huh, sure’. The more I spoke, the more invalidated I felt. I consent to a vaginal exam, my abdomen is palpated from the inside and outside and there is no mass or growths to be felt. Nothing wrong from what they can tell. The physician then tells me that it’s probably how my body usually works but because I’ve been on birth control for so long that I just don’t know how my body works and need to adjust. The smirk comes off of the physicians face when I rebuttal with the fact that I have not been on any form of hormonal birth control since early 2010, so over 5 years, that cannot be the issue. But to appease me, the physician sets up an ultrasound and says to call when I start having so they can do the u/s during the painful days.

Next month comes and the pain starts and so I call the ob/gyn office and get in the same day. We have an ultrasound that shows there is nothing on my ovaries or my uterus that is abnormal or that should be causing pain. No answers. I felt defeated and invalidated even more. So I don’t go back to the doctor office for a while.

I decide to travel a bit further to an ob/gyn that I have built trust with through my doula work. I set up my appointment and when the day comes I go to see the Doctor. This Doctor sat with me for an hour, listening to me and my concerns, about the research I have done and what I think may be going on. The Doctor looks up things with me. He validates that this sounds and looks like Post Tubal Ligation Syndrome, even though the medical community is very split on it and getting diagnosed with it is almost impossible. I consent to another physical examination and am told that my uterus is VERY retroverted, almost lying flat on its back. (It’s supposed to be leaning slightly forward over the bladder) So the Doctor believes that this is playing a part in why the pain is so bad, especially during my periods.

I am then given choices. Try birth control pills to stop ovulation and see if the suppression of ovulating hormones helps with the pain (which isn’t the reason for getting my tubes tied so that I don’t have to be on birth control?) I can have exploratory surgery and they go looking for issues that maybe can’t be felt or seen on ultrasound and have a salpingectomy (removal of my fallopian tubes) at the same time. I could go ahead and have a hysterectomy since I am done having kids ( I was 26 at the time of this conversation), I could go to a Doctor in KY and pay out of pocket for a reversal that may or may not fix the issues or I could wait and see what happens.

I opted for the low dose birth control pills. They didn’t last long. There’s a reason I haven’t used hormonal birth control since 2010 – it makes me crazy. It makes me irritable and have horrid mood swings, insomnia so I wasn’t sleeping AT ALL. Nope, couldn’t do it. I just dealt with the pain.

So, I have researched. I am pretty sure I have endometriosis now as well based on medical journals descriptions along with my symptoms. For now, I use herbal supplements, homeopathic remedies and OTC pain medications to help me get through. Things like red raspberry leaf capsules, rice socks, hot showers, pressure points, ibuprofen and such is how I get through.

Along my search for answers as to what was wrong with me, I asked for my medical records. Particularly my operative reports from my tubal ligation. Remember the ‘cut, burn and tie’ method I was counseled on in my pre-op appointment? Turns out that the Doctor (same one I had the appointment with) decided to do a completely different method of tying my tubes. The doctor placed silicone falope rings on my tubes with a device that ended up being recalled the following year for malfunctions. I was not informed of any of this. I had to find it out on my own through research of the procedure and all it entailed. If I had been counseled on this method, that the silicone rings cut off blood flow to a portion of my tubes and makes it become necrotic inside of my body so that they wither and die and then just leave these silicone bands in there (do they stay there? Do they float away? Who knows!) I would NOT have gone through with it. But I wasn’t given that information. I wasn’t even told afterwards that they had changed the method. It was 2 years later when I went looking for information.

What am I trying to say with all of this? Women, PLEASE PLEASE PLEASE, do research before going through with this type of permanent sterilization. There are thousands and thousands of women out there just like me who had no issues until this surgery was done.  Does this mean you or all women will suffer from this if you get your tubes tied, absolutely not. This is MY story. This is MY life and experience with tubal ligation issues. I hope that you or any other woman have to deal with the pain and issues that I have dealt with.

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One thought on “Sarah opens up about her struggle with PTLS.

  1. Pingback: This is a piece on Post Tubal Ligation Syndrom. I read it through and it really got me thinking. We are largely limited on the information we get from our doctors. YOU have a right to ask your doctor all the questions that you feel you want to ask. YOU ha

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