I’ve been a casual lurker on this thread for some time, and every time I read a new post about someone getting diagnosed with endo, and being unsure where to start, or using birth control, all I want to do is share my experience with attempting to balance my hormones, and ask if anyone has tried it too.
I’ll share my question first, in case you want to skip my story, and go straight to commenting:
How many of you have tried to control your symptoms with hormone balancing/anti-inflammatory living/exercise, and NOT with birth control? How bad were your symptoms before you started this approach, and how have they been after? Do you think this approach is only appropriate for women with only moderate pain/symptoms?
DISCLAIMER: I am not a medical professional. I’m simply sharing anecdotal info about my own experience.
My story: I (36F) have had painful periods my whole life. In high school, I would regularly stay home from school with bad cramps, and as I got older, I’d pop two Advil, drink a glass of wine and go to sleep every time I got my period. Was told by family that lots of people had cramps, and that they were normal (LET’S CHANGE THIS NARRATIVE!!). That said, I’ve never passed out or vomited from pain, and my pain was only the worst in the first two-ish days of my period - so luckily nothing severe throughout the month.
In late 2018, I was really stressed at work, I was drinking tons of coffee, not exercising, and that’s when my endo really progressed (though I didn’t know it then). Over a three-month time period, I went to the Emergency Room every month due to pain with my period (weird burning-feeling behind my belly button, and uterine cramping), and in an ultrasound on the third month, they found an 4.5cm endometrioma on my L ovary. This tells me that cyst took about three months to grow, because it didn’t show up in my first ultrasound.
I had surgery in early 2019 to remove that L cyst (not with a specialist), and that’s when I received my formal diagnoses of stage 4 endometriosis and severe adhesions everywhere. I started down the path of doing research (highly recommend Nancy’s Nook Facebook group/website for local specialist lists and medical research on endo). While recovering from the surgery, my non-specialist OB doctor suggested continuous birth control to suppress my endo. I saw a specialist, and she indicated the only way to suppress my endo was with birth control as well. So, I went on birth control continuously (skipping the placebos) for two years.
During those two years, I felt different. I had a serious lack of libido; I felt like I had rain-cloud over my head at all times, and just generally felt down.
In December 2021, I came off birth control to try to conceive. I was super scared of my pain, but I had recently read the book Woman Code by Alisa Vitti (HIGHLY RECOMMEND), which talks about controlling your hormonal imbalance as a way to treat hormone-dependent disorders, so I was set on trying her recommendations.
These are the changes I made to my lifestyle while preparing to stop taking birth control, and while trying to conceive: • Exercising as a requirement - instead of if-time-allowed • Not drinking coffee (I switched to matcha, and I’ll never go back!) • Not drinking alcohol (I was strict-ish on this one) • Living an anti-inflammatory diet. This means essentially eating like a diabetic to avoid blood sugar spikes: avoiding white flour bread and pasta, a focus on organic fruits and veggies (if possible), • Reducing my stress significantly (I switched jobs)
We tried to get pregnant for 6 months, then started down the IVF path, which is a different story (happy to share, but that’s not the point of my post!). In my first ultrasound after being off birth control for 10 months, they found a 2 cm endometrioma on my R ovary. I was super disappointed at the time, but I also wasn’t 100% strict with the bullets above, so I wasn’t totally surprised.
If anything, it makes me feel like my lifestyle changes made a huge difference, because this time, it took 10 months to grow a smaller cyst, instead of 3 months to grow a large one!
And, during those 10 months, I was living my best life!! I felt like myself again! I had a normal libido around ovulation, and felt all of the wonderful (non-pain) ups and downs of your cycle (feeling outgoing during ovulation, feeling like you want to just stay in and cuddle the week before your period, etc. etc.).
For this surgery, I worked with a different specialist, and in my first consultation with her, I asked about non-birth control options to treat endo, and she said that of course those methods aren’t widely studied, but they DID have a packet of guidance they give to endo patients!! Things like yoga, acupuncture, massage, diet, etc. etc. I almost cried because I felt seen.
This is all to share that if you are looking into other types of treatment besides birth control, there are other alternatives to consider either alongside bc, or instead of! Once again, I am not a doctor, and would hate for anyone’s disease to progress faster due to my post. I just think the narrative should be more broad besides, “birth control is your only option, period”.
BTW: EGG RETRIEVAL STATS: with my egg retrieval for IVF done before by R ovarian surgery, there were 4 follicles on my L ovary (the one operated on in my first surgery) and TWENTY FIVE on my Right. If you can afford freezing eggs and all the difficulties that comes with….I highly recommend asking your doctor about it, esp. before surgery.
MY TLDR recs: - Birth control might not be your only option. Consider an anti-inflammatory diet and lifestyle - Consider reading the book, Woman Code by Alisa Vitti - Find the Nancy’s Nook Facebook group/website for research and specialists lists - Check out the Below the Belt documentary (And share with people in your life who are trying to understand your disease) - GET A SPECIALIST AND DON’T LET ANY DOCTOR TELL YOU YOUR SEVERE PAIN IS NORMAL
❤️ this community!
I’ve been a casual lurker on this thread for some time, and every time I read a new post about someone getting diagnosed with endo, and being unsure where to start, or using birth control, all I want to do is share my experience with attempting to balance my hormones, and ask if anyone has tried it too.I’ll share my question first, in case you want to skip my story, and go straight to commenting:How many of you have tried to control your symptoms with hormone balancing/anti-inflammatory living/exercise, and NOT with birth control? How bad were your symptoms before you started this approach, and how have they been after? Do you think this approach is only appropriate for women with only moderate pain/symptoms?DISCLAIMER: I am not a medical professional. I’m simply sharing anecdotal info about my own experience.My story:I (36F) have had painful periods my whole life. In high school, I would regularly stay home from school with bad cramps, and as I got older, I’d pop two Advil, drink a glass of wine and go to sleep every time I got my period. Was told by family that lots of people had cramps, and that they were normal (LET’S CHANGE THIS NARRATIVE!!). That said, I’ve never passed out or vomited from pain, and my pain was only the worst in the first two-ish days of my period - so luckily nothing severe throughout the month.In late 2018, I was really stressed at work, I was drinking tons of coffee, not exercising, and that’s when my endo really progressed (though I didn’t know it then). Over a three-month time period, I went to the Emergency Room every month due to pain with my period (weird burning-feeling behind my belly button, and uterine cramping), and in an ultrasound on the third month, they found an 4.5cm endometrioma on my L ovary. This tells me that cyst took about three months to grow, because it didn’t show up in my first ultrasound.I had surgery in early 2019 to remove that L cyst (not with a specialist), and that’s when I received my formal diagnoses of stage 4 endometriosis and severe adhesions everywhere. I started down the path of doing research (highly recommend Nancy’s Nook Facebook group/website for local specialist lists and medical research on endo). While recovering from the surgery, my non-specialist OB doctor suggested continuous birth control to suppress my endo. I saw a specialist, and she indicated the only way to suppress my endo was with birth control as well. So, I went on birth control continuously (skipping the placebos) for two years.During those two years, I felt different. I had a serious lack of libido; I felt like I had rain-cloud over my head at all times, and just generally felt down.In December 2021, I came off birth control to try to conceive. I was super scared of my pain, but I had recently read the book Woman Code by Alisa Vitti (HIGHLY RECOMMEND), which talks about controlling your hormonal imbalance as a way to treat hormone-dependent disorders, so I was set on trying her recommendations.These are the changes I made to my lifestyle while preparing to stop taking birth control, and while trying to conceive:• Exercising as a requirement - instead of if-time-allowed• Not drinking coffee (I switched to matcha, and I’ll never go back!)• Not drinking alcohol (I was strict-ish on this one)• Living an anti-inflammatory diet. This means essentially eating like a diabetic to avoid blood sugar spikes: avoiding white flour bread and pasta, a focus on organic fruits and veggies (if possible),• Reducing my stress significantly (I switched jobs)We tried to get pregnant for 6 months, then started down the IVF path, which is a different story (happy to share, but that’s not the point of my post!). In my first ultrasound after being off birth control for 10 months, they found a 2 cm endometrioma on my R ovary. I was super disappointed at the time, but I also wasn’t 100% strict with the bullets above, so I wasn’t totally surprised.If anything, it makes me feel like my lifestyle changes made a huge difference, because this time, it took 10 months to grow a smaller cyst, instead of 3 months to grow a large one!And, during those 10 months, I was living my best life!! I felt like myself again! I had a normal libido around ovulation, and felt all of the wonderful (non-pain) ups and downs of your cycle (feeling outgoing during ovulation, feeling like you want to just stay in and cuddle the week before your period, etc. etc.).For this surgery, I worked with a different specialist, and in my first consultation with her, I asked about non-birth control options to treat endo, and she said that of course those methods aren’t widely studied, but they DID have a packet of guidance they give to endo patients!! Things like yoga, acupuncture, massage, diet, etc. etc. I almost cried because I felt seen.This is all to share that if you are looking into other types of treatment besides birth control, there are other alternatives to consider either alongside bc, or instead of! Once again, I am not a doctor, and would hate for anyone’s disease to progress faster due to my post. I just think the narrative should be more broad besides, “birth control is your only option, period”.BTW: EGG RETRIEVAL STATS: with my egg retrieval for IVF done before by R ovarian surgery, there were 4 follicles on my L ovary (the one operated on in my first surgery) and TWENTY FIVE on my Right. If you can afford freezing eggs and all the difficulties that comes with….I highly recommend asking your doctor about it, esp. before surgery.MY TLDR recs:- Birth control might not be your only option. Consider an anti-inflammatory diet and lifestyle- Consider reading the book, Woman Code by Alisa Vitti- Find the Nancy’s Nook Facebook group/website for research and specialists lists- Check out the Below the Belt documentary (And share with people in your life who are trying to understand your disease)- GET A SPECIALIST AND DON’T LET ANY DOCTOR TELL YOU YOUR SEVERE PAIN IS NORMAL❤️ this community! https://ift.tt/7hnAeNU https://ift.tt/Ody9uE4
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