Endometriosis was removed 1 year ago, there has been no change in my pain or bleeding. Please read 'My Story' for more detail. Please help.
Yes, in fact mine was more severe afterwards in many ways. It is true the average obgyn is clueless on how to treat it and cause more damage in fact. I got my medical records yrs. later and wish I had done it from the beginning. I learned that the areas I was experiencing the worst pain and telling my obgyn about were left alone, he did nothing there. When they poke, prod and move things around during surgery, they actually cause more damage. Leaving it in surgery should not be acceptable. Always get your medical records, so you know what is going on. My records were falsified in many ways but I had no idea until several yrs. later.
Unfortunately that's another common misunderstanding. It really just depends on the patient. Some start with the symptoms only during their cycle but it eventually becomes more frequent. Some like myself, have pain every single day whether it's mild aches or severe, excruciating pain. And some never have any pain at all but they suffer from some of the other symptoms like infertility, vomiting, bloating, shortness of breath, bowel issues, etc., etc. So again, your doctors are incorrect 😡. Have they sent you to a GI doctor yet? Usually after uneducated doctors "operate" and the patient still has pain or symptoms, they'll insist it's not endo pain and send you to GI's, urologist's, etc.. They also like to remove the appendix and gallbladder, hoping for a quick fix...so frustrating.
I'm going to check to see if we have any specialists in your area or close to ya.
I know it's difficult but please know that you are not alone. You are suffering from a disease that is listed as one of the top five most painful diseases. Your pain is real and don't ever let them convince you it's not!
Ok, yep! Your problem is your uneducated doctors. So first off, there is absolutely no cure for endo. I don't care how many times they "removed" it!
I'd like to slap those docs and send them back to school for talking to you that way 😡.
We need to get you into see a true specialist. Endo is often referred to as the "Benign Cancer". Why? Because like cancer it creates its own lifeline (estrogen)! Because It creates its own lifeline this means it can spread to any location in our bodies and even if you stop your cycles or have a hysty, it can & will still exist.
Like I mentioned above, our best option for relief at the moment is excision surgery by one of our specialists. Since we don't have a cure yet, the goal is to be as pain free as possible and hopefully make the length in between surgeries longer, while trying to prevent more damage to our organs. Now, a true specialist will tell you that they can't guarantee you'll be totally pain free and they'll also tell you they can never guarantee you won't need more surgeries, but they will work with you through excision, along with other methods that can make a huge difference and will help prolong the time in between surgeries.
I can't stress enough how important it is for us to be treated by our educated specialists as early as possible. Again, I honestly believe I wouldn't be going on my 24th surgery if I would have known this sooner. Usually the first surgery our ladies have by our specialists is to correct a lot of the damage caused by those regular ob's that have no idea what they are doing. Grr, sorry if I sound bitchy but I'd really like to chew you ob's butt 😡! Like @A MyEndometriosisTeam Member mentioned, the more "uneducated surgery happy" gyno's will only cause more damage. You should see my insides! Not only am I covered in endo but my body is being taken over from surgical scar tissue which is causing so many more issues.
If myself and so many others would've known early enough that there is a huge and crucial difference between a "gyno specialist" and an endo/excision specialist, we would not have had so many surgeries.
Hi! Unfortunately yes, that is the common. The only true form of any relief for us as of right now is excision surgery done by an excision/endo specialist, not a gynecologist. Sadly many ob/gyno's state they specialize in endo, but they don't. I have had 23 surgeries so far including a total hysty and I am now needing my 24th. I believe my case is so severe because unfortunately I let too many ob/gyno's operate on me, only causing more damage.
Unfortunately since we have limited specialists many of us end up having to travel out of state to seek treatment. I can get you a list of specialists to see which is closest to you. I'm going to read your story real quick to have a better understanding of your situation.