Struggling really bad
Long story, i had my lap in 2022, diagnosed with stage 4 endo, nothing but complications, had another surgery 4 months later, alot of scar tissue was found and more then one cyst, still complications since then my mental health has went down hill fast and to this day im still having complications and new systems including bad rib pain especially when i breath, im at my with-end and dont know where to go or do from here 😥😥
My heart goes out to you,
. That is a lot to deal with and doctors often don't understand how deeply the pain and discomfort can impact everyday living and mental health. Have you considered getting a second opinion about your treatment from another specialist? Sometimes, a new perspective can make a huge difference in the approach to care. You might even want to think about traveling to find someone who has extensive experience with endometriosis. If that doctor can help, it will be worth it. So often, people have great success by seeking a second opinion or finding a new doctor.
Have you ever met with a therapist to discuss how all this is impacting you? You can't change your diagnosis, but you can change the way your body reacts physically to stress and the challenges of chronic illness. That might lead to improvements in both your mental and physical health.
It is really important to advocate for yourself and keep pushing for the care you need and deserve. If you are not vocal and your case is difficult, the healthcare system will tend to brush you off. You can feel better and you deserve to feel better. Keep in mind that doctors are providing you with a service you pay for, not a favor. You should get what you pay for and nothing less.
Please know we are here for you throughout this journey whether you need support or a safe place to vent. Keep me posted if you don't mind. I will be thinking of you. - Lori (Team Member)Im actually on my 3rd opinion, my first doc was just a gyn but my 2nd and 3rd opinions was endo specialist, im bring my friend with me on the 26 of feb to see if she can help, i say what i want but i feel like at some point i shut down due to the fact i was gas lighted and called crazy by so many doctors, im also in therapy, im actually in therapy 5 days a week due to all this and my few mental health break downs, im actually starting to think im crazy for needing that much therapy
First of all I am newly diagnosed with Stage 4 endometriosis! I want you to know you are not crazy! My regular gyno has missed all of my symptoms for four years and refused to send me out! Thank everything my regular doctor sent me to Northwestern Medicine in Chicago, IL. They have the BEST specialists there for endo! They are so caring and so compassionate about everything that goes along with endometriosis. I want you to know you are NOT crazy! I am finding myself snapping at people I love lately and I think it’s time I start talking to someone, too! They have me on Lupron shots, just started yesterday and I meet with the surgeon next week! I will also be going to a chronic pelvic pain psychologist. With all that said please do not feel like you are crazy! See, that’s the way the doctors made me feel until I finally got these WONDERFUL doctors to validate my pain, they validated everything and said absolutely none of this is my fault, it’s very real, it’s very painful, and everything I am going through is expected. Do not stay with anyone that makes you feel crazy! It took me a long time to find my voice and I’m so glad I finally did! Please don’t give up! Thank goodness you continued to advocate for yourself and that you have a primary care doctor who listens and cares,
. I hope Lupron helps and that surgery brings you some much-needed relief. Thanks for being so supportive of others here. Please let us know how things go if you don't mind. I will be thinking of you. - Lori (Team Member)
Unfortunately, my friend couldnt come, I am physically and mentally exhausted, again I tried to advocate for myself. I feel like he’s not listening to me cause he keeps saying, Physical Therapy and I get that I’m in physical therapy but I feel like somethings wrong and no one will take me serious and I’m just ready just to give up and stop fighting because it bring me down.
Please don't stop fighting,
. If this doctor isn't listening to you and really believes physical therapy is the one and only solution, you need and deserve someone new. I know this was your third doctor, but believe me. Many people so through lots more trying to find a doctor who is a good match. You pay for your doctor's services, whether out of pocket, through your taxes, through insurance or through some combination of the three. You deserve to get what you are paying for and you clearly are not getting good service from this person. Please keep fighting and know that you can come here any time you need some extra support. We are here for you and you deserve to be healthy and happy. - Lori (Team Member)
Thanks, the problem is the next best doctor is in other state and out of network with all insurance, i live in mass which is a huge state and only have 3 endo specialist and one is retiring, so im lost what to do and also i get i need pt like he says but i cant even get seen until the 20th so i feel like thats delaying my care as well, i ask my doc to please order a pelvic mri thinking he could since hes a gyn doc but told me to ask my pcp, not sure why since my pcp not treating me for endo, only thing my gyn listen to me about was Alternative Insemination since i want a baby, im 36 and single but then again idk if thats possible cuz i have stage 4 endo, pcos and adenomyosis 🙁
Hi
. Have you tried looking for an "adult pelvic health" practice instead of an endo specialist? Often, they have endo specialists on staff. My daughter found they took a much broad, more inclusive look at her pelvic health and her needs at the point in life when she was diagnosed. Some practices offer only therapy, so you have to check out each one closely to find one for endometriosis. You can always call and ask the office whether they have a doctor who might be right for you.
One of my closest friends got pregnant with stage 4 endo about 20 years ago, but she had extensive surgery to remove affected tissue first. She had no issues with her pregnancy, but chose to foster and adopt her second child. Anything is possible with the right care and guidance. - Lori (Team Member)
