Thank you for sharing your story and I think this is really helpful for others to hear as well, especially those that may not have access to an excision specialist. There is research to support improvements after ablation surgeries. The downside is, when you ablate, you don’t know how far the lesion goes, and deep lesions can be very active - meaning they can be producing inflammatory markers, growing nerves, blood vessels, etc. When deep lesions are ablated, you sort of burn the tip of the iceberg; however, if they are only superficial lesions, it may do the job. Many people can have a mix of superficial and deep lesions. Birth control does help to manage symptoms for many, but not all, so if you have found something that works for you to avoid taking tons of ibuprofen, pain meds, and improves your quality of life, that is great! As you mentioned, many don’t want to have to rely on birth control, and that is where finding a very skilled excision surgeon is important because they will be able to remove all of those hard to remove lesions that other docs may not have the training in. You don’t want a doc not skilled removing things around important structures, so it sounds like your doc did a good job in doing the best she could, but recognizing it was more extensive once you went to surgery. Looking at iCarebetter and Nancy’s nook and doing your own research around this and finding the right surgeon for you is important. That being said, if you haven’t had pelvic floor PT, or looked into dietary and lifestyle changes, or talked with a pain management specialists, these are other avenues that may provide you relief in addressing all the pain generators. The lesions are definitely one part, but often times there are other pain generators that are missed and can really help!

I really recommend going and seeing another doctor like an endometriosis excision surgeon, if you're in America, even if it's far from you, I really recommend going to Dr. furr in Chattanooga TN. he's amazing and super super thorough he will not leave you with any endo. I hope you get to be pain free soon!!

Look into an anti-inflammatory diet and an estrogen dominant environment. Just changing my diet has improved my symptoms tremendously. I did not want to resort to taking birth control. Before I would be on the floor curled up in the fetal position, dry heaving into a trash can from the pain for hours. Now I can actually go out and do things on my period without giving everyone a disclaimer.

hi were you on the pill ?

Hi. I'm 49 and have been dealing with endo since I was 16 years old. It continues to be a big problem. I tried 5 types of birth control and I could not tolerate any of them b/c of the estrogen. I have found some relief by just taking progesterone (medroxyprogesterone) and spironolactone. I also have PCOS and found the spiro helped my pelvic pain a lot. It was helpful to not have periods anymore. Continuing to have periods, imo, only makes the endo worse. I was grateful to have the cycling stop, as periods were excruciating and my hormones would be out of control. I use the TENS on my pelvis when I am having bad pelvic pain, which interrupts the pain signals. My husband has recommended and am taking Calcium D glucarate supplements as they supposedly reduce estrogen, which obviously is helpful since endo is an estrogenically mediated disease. Hope this helps anyone here.

Hi! We appreciate your comment. Magnesium can help with the level of cramps, if taken regularly/consistently, and upping the dosage during your cycle. It might not alleviate all pain, but can help a bit. We know that this is not a 'cure' and does not help everyone, but for some, even a small about of alleviation from pain is beneficial for them. Those with endo, suffer a great amount of pain. We absolutely understand some need more pain management; this video serves as a starting point for general education information about Endometriosis. There is so much more to discuss on the topic that we could not fit it all in one video!

Have you seen any endo experts for your care? We recommend checking out our friends at iCarebetter, who has built a wonderful endometriosis community!

We are so sorry to hear about your experience. Having surgery to remove any body part can be traumatic. We recommend working with a gynecologist who understands hormone changes to help you manage the symptoms of menopause. Seeing a mental health provider like a psychologist can often help you process feelings about your loss.

We are so happy to be able to provide this info to our audience!

Each case of endo is different, so I recommend talking with a specialist about your goals for treatment and the options available. It wonderful that you are educating yourself, so you can make informed decisions about your care. Check out this blog post with a list of resources you may find helpful. pelvicpainrehab.com/female-pelvic-pain/endometriosis/7359/pelvic-pain-explained-endometriosis/

Hello, please check out our Endo blog resource list! pelvicpainrehab.com/female-pelvic-pain/endometriosis/7359/pelvic-pain-explained-endometriosis/

It can be unsettling to not have a definitive test confirming a diagnosis, even though all the signs are pointing to endo. Let's weigh the pros and cons. Are the laparoscopy results going to change your treatment? Is your current treatment managing your symptoms well? Is a laparoscopic excision surgery going to be part of your endo treatment? Talk these over with your doctor, and get a second opinion if you need it.

Thank you!

Yes, you can have endometriosis even if you've been taking birth control pills. We would recommend you speaking with your gynecologist about the symptoms you've been experiencing as well as seeking an evaluation by a pelvic floor therapist.

@@PelvicHealth thank you for your advice. I have an appointment next week at my gynecologist’s and I will insist on checking for endo. I’m so exhausted from heaving these symptoms

@@silkedeconinck6894 It may be that you may have always had it and not been symptomatic as well. Birth control and hormonal suppressants do not “treat” endo, but for many can be very effective in managing the symptoms. Birth control can be used in a positive way in many instances aside from just treating endo. It is thought by some doctors that after adequate excision surgery, going on a hormonal suppressant may slow any new growth and increase the time between surgeries - maybe.

Look into an anti-inflammatory diet and an estrogen dominant environment. Just changing my diet has improved my symptoms tremendously. I did not want to resort to taking birth control. Before I would be on the floor curled up in the fetal position, dry heaving into a trash can from the pain for hours. Now I can actually go out and do things on my period without giving everyone a disclaimer.

@@silkedeconinck6894 I had to fight like hell to get my diagnosis for interstitial cystitis. I am written off over everything though due to being bipolar even though I am not at all a hypochondriac. If you do have endometriosis the two often go hand in hand. Your bladder pain and needing to pee all the time sounds like me. Just penny for your thoughts. I’m so glad I ended up with a cyst that lead to my endometriosis diagnosis, but it is such an awful thing to suffer from. I hope you are okay. Wishing you the best.

Hello, excision is the gold standard for removing endometriosis. There are not exercises specific to do for a solution. We recommend working with a pelvic floor PT to help mitigate symptoms you have.

Could you recommend the best exercises for pelvic floor dysfunction

@@lilebegum5939 Hello! We only advise exercises after an evaluation as we need to consider the current state of your pelvic floor & the severity of the dysfunction. We recommend being seen by a pelvic floor PT to get exercises specific to your pelvic health.

How do we know if the pelvic floor is right or loose. Are there any tests we can do at home ?

@@lilebegum5939 The gold standard is to have a pelvic floor physical therapist do an internal exam. You can make some assumptions at home. Tight pelvic floor might lead to urinary urgency, frequency, hesitation, or spraying; BMs that are difficult or thin; and pelvic pain. Loose/weak pelvic muscles might lead to leaking of urine, feces, or gas or instability at the pelvic girdle/hips.

We do not currently have one but we recommend iCarebetter, as they have vetted surgeons on their website!

Everyone responds differently to birth control. For some it may help symptoms, for others, not so much. Being able to make an informed decision is super important. Glad our video helped!

We understand how you are feeling! Feel free to check out our website that has weekly blogs and our Instagram, which has similar content. ❤pelvicpainrehab.com/blog/

Thank you for your question. The gold standard for testing is laparoscopic surgery. The gold standard for treatment is excision surgery. Every case is different however and some people are able to manage symptoms well without surgery. This website may be helpful for you icarebetter.com/. If you would like a virtual consultation with us, you can book here: pelvicpainrehab.com/telehealth/

It is often genetic, but it is possible not everyone born female in that blood line will have endo. As far as causes, there isn't any solid research that has nailed down a definitive cause. Especially since endo tissue has been found in female stillborn babies...which leads to the theory that it is a trait that is passed down. Some experts have been looking into genetic testing to help diagnose as well as have scientific PROOF of the condition (since so many cases of endo are misdiagnosed and dismissed entirely). Hope this helped actually answer your question 💕

* the gold standard failed me 😢 bc mine was negative for endometriosis. I feel like my gynecologist only removed my uterus just to get a higher profit. It sucks not having a period at 37 years old.