My daughter has had most of your symptoms. After years of complete bed rest (because even walking made her feel like she needed to go to the ER) we were able to find an amazing excision surgeon that believed her pain and helped her with a full body approach. Of course this surgeon is incredibly expensive and we were lucky enough to have the option of taking out of our retirement to pay for services but we are making progress on her journey. I do know that some doctors have scholarship type programs, and many women have had success fighting with their insurance companies to pay.
My daughter had wide excision surgery last March right before the first lockdown (she was her surgeons last day of surgeries😬). They found tons of endo, severe adenomyosis, pelvic floor dysfunction, a few chocolate cysts, so many adhesions that her abdominal organs were being pulled to one side which didn’t manifest as a pulling sensation, but rather severe (previously unexplainable) pain in her abdomen, major digestive problems, IC and adhesions on the so bad her surgeon could barely see the ureters, and mast cell activation because this has gone on way too long. She will still need a hysterectomy for the adenomyosis (which sounds like most of your symptoms are pointing to). She had SEVERAL CT scans which all came back ‘normal’. This new surgeon finally did an MRI (which I had been begging for from previous doctors) but was told CT and MRI are the same...they’re not! Even an MRI can come back ‘normal’ when adenomyosis is present (surgery diagnosis is needed and even then they only really know for sure if they remove the uterus and test).
My advice is to fight, fight, fight for yourself. My daughter saw 40 doctors in 4 years...ans that was specialists at UCLA, Stanford, Cedar Sinai to name a few..Find a specialist (that doesn’t deliver babies) that has a whole body approach (we interviewed 5 ‘so called endo specialist’ and only one was suitable with no major red flags). This is important because they are networked with other specialists that deal with endo/adeno women that have problems in their area...example: pain specialist that knows the specific ways to deal with endo/adeno pain, GI doctor that knows SIBO is very common with endo sufferers and knows how to help endo issues related, PT specialists that deal specifically with chronic endo/ando pain issues.
I wish you the best of luck and look forward to seeing you success stories on her one day❤️

Oh my heart hurts for you, I remember being in your shoes. From what I’ve learned is that endo is not a one size fits all, everyone’s symptoms are different and it is such a complicated disease that I feel like I keep learning with time that endo could be possibly affecting another random symptom I’ve struggled with all my life. I am young and still have much to learn, but my best advice I can give you is to keep fighting. It took me 3 years to be properly diagnosed, and that’s relatively short compared to how long it’s taken others. Doctors belittled me and made me feel like it was in my head too. Some acted like they know my body better than I do. Don’t believe them! No one knows your body better than you, and you have to fight for that. I saw countless doctors looking for answers. Do not feel stuck with one if they are not listening to you, keep looking for one because i promise you one will come around that will hear you out and take you seriously, and you will finally be on the path towards healing. Keep fighting, hang in there, I will pray that you will find the answers you’ve been looking for💛

No problem! I've spent 3.5 years suffering after my diagnostic laparoscopy because they didn't remove everything and now I know that that's really common. It's frustrating how few experts there are!

Hi MissCaitlin. Thank you for your response and so sorry to hear about all the pain you’ve been in. I’ve had a SI, hips and pelvic with contrast MRI and a abdominal ultrasound. All were normal other then a 1cm cyst on an ovary as well as a mass on my liver and kidney. No fibroids or adenomysis was detected. My periods I would say are medium. Not light and not super heavy which is again one of the reasons that I’m confused to whether I have endo or not.

Another piece of my history that points towards endo is that I had a terrible pregnancy with my daughter due to suffering from cholestasis, gestational diabetes, preeclampsia and low birth weight fetus. Due to all the complications she was induced at 35 weeks. I have recently learnt that endo increases the chances of all those complicated by 3-500%.

My leg pain is also at the side and front of my thighs so I don’t think it’s sciatic pain? Perhaps not a fibroid pushing on that nerve then? Your symptoms of back and leg pain not being able to sit do sound similar to my symptoms but I don’t have crippling pelvic pain. I have bad cramps that make me want to stay in bed and not function, however I generally do still function. Again why I’m confused :(

A lot of your symptoms sound like endometriosis symptoms. I would keep searching for answers. If you can find a specialist, I would. Not everyone has all of them (I do have pain with sex, but not bloating or digestive issues, even though I had endo on my digestive tract).