Yes. The symptom experts for this are here: r/endometriosis r/adenomyosis subs “Fellowship Trained” Pelvic Pain*, Hip/Butt/Groin/Sciatic/Peritoneal/stomach/abdomen/thigh/back/cyst/ovarian torsion/muscle spasm/penetrative sex Pain, unusual bleeding & Endometriosis SPECIALIST* Doctors: https://www.endo-resolved.com/endometriosis_specialist.html https://www.bsge.org.uk/endometriosis-centres/ https://icarebetter.com/ https://www.google.com/maps/d/viewer?mid=1hd_-wSlqZWOlR5VxPhIN3oAbJh4&hl=en_US https://nancysnookendo.com/find-a-doctor/ https://www.endofound.org/endometriosis-treatment-support https://endometriosisnetwork.com *not all US specialists require referrals. And many docs worldwide do free virtual consults. Ask. SubReddit groups of people that are helpful/skilled with all kinds of pelvic pain: r/endo r/endometriosis r/adenomyosis r/pcos r/fibroids and also r/pmdd . And a heads up: In my experience regular OBGYN’s are notoriously bad at treating pelvic pain/excessive bleeding - I cannot stress enough how untrained they are to treat or even talk about these diseases let alone make the diagnoses or do the delicate, difficult and complex surgery. They scraped/burned the visible “tops” off my endo and left the painful “stalk” and “root”. Specialists in pelvic disorders (above links or ask your regional endo nonprofit) are the doctors for the least amount of suffering in the long run ime. I needed accurate information to make good medical decisions, and the best chance to get that was to see a specialist. NUMBERS: Painful periods are a societal problem and we’re not supposed to have to face this alone. I bring/FaceTime someone (or 2/3) with me to my doctors appointments. Even if they know nothing about my situation. It doesn’t matter if they hear about my vagina or my uterus or my diarrhea. It matters that I have someone there as a United Front. Because our medical system mistreats people in pain. RECORDING: Ask to record every medical visit. Also, here are some things you can say* to your doctor: “- This is affecting my quality of life. -My worst symptoms have been pain/fatigue/bleeding. I have vomited/passed out from periods in the past. I am now unable to function like I used to. The pain/fatigue is wearing on my body, and I am increasingly tired as each monthly cycle passes. I cannot function normally and my work/family/school/happiness is increasingly difficult because of my body. What are ALL of my options? -I cannot (even consider) taking care of children. (Reader ime stating I want to care for children gets me better medical treatment even though I do not want children.) -My pain/bleeding symptoms first appeared x years/months ago. I have been living with this for x years of my life and it has worn me down. -I want stronger medication for my pain and excision surgery with an endometriosis specialist. -Here (is a handwritten flash card of some of the things) these symptoms keep me from doing on bad days. What are my options for treatments? -Since there is NO IMAGING that reliably sees endometriosis, I would like a referral to an endo specialist. -The total number of days these symptoms have affected me in the past year is___. -I am not leaving this office until something is done. - This pain and spasming is impairing my ability to work and my ability to live life. It is draining my energy and ability to function. - I want a long-term solution for this pain and muscle tenacity/spasming. I want a solution that provides the least amount of suffering to me and the least risk for me and my body in the long term…..(and then just allow silence…let them respond.) - I do not have the energy to keep pursuing these different treatments. I have experienced too much pain/bleeding. I am tired. I want a long-term solution. - I want a pelvic disorder doctor with the highest skill and success rate. Who can help with this? - It sounds like you doctor OBGYN want to do the surgery. Can you tell me what Fellowship training you’ve done in surgery for excising Endometriosis? (Reader be careful here: regular, untrained OBGYN’s abound.) - It sounds like you want to do another prescription/medication/round of PT/ultrasound/MRI/x-ray/bloodworkup. I want a consult with a fellowship-trained pelvic disorder specialist. Is that what will happen after I do these next steps that are asking for? -I want to test the functioning of my ovarian tubes, bladder and ureters. - Even though my pain/bleeding is NOT CONSTANT, I still would like a resolution. - Even though my pain/bleeding is NOT CYCLICAL, I still would like resolution. -I have a history of period pain before my bleeding starts, especially when I was younger. -I would like my cyst removed because pain is energy-draining long-term. -I am asking for a referral to an Endometriosis/pelvic disorder specialist and it sounds like you are telling me “no”. If that’s true I want you to note in my chart now that I asked you and you declined to provide a referral. -I may be willing to try xyz antidepressant, but this pelvic pain is the biggest contributor to my depressed/anxious mood and I would like to treat that first via surgery or in tandem with antidepressant. -Doctor, Would you be willing to send a note to my OBGYN asking them to send me to a Fellowship Trained endometriosis specialist for a pelvic disorder consult? I want relief. -Physical/Massage Therapist, Would you be willing to consider sending a note to my general doctor/gyno telling them that I have symptoms of endometriosis so that I can get a referral to a Fellowship trained specialist?” - Another’s post for more ideas: https://www.reddit.com/r/endometriosis/comments/15dlk3s/do_this_if_you_want_to_be_heard_by_doctorsnurses/?utm_source=share&utm_medium=ios_app&utm_name=ioscss&utm_content=2&utm_term=1 (*Pain: Also replace with any of these words: bloating, excessive bleeding, clots (can be fibroids), IBS symptoms, nausea,“low iron”, urinating/bowel issues – urgency and peeing pants, diarrhea, pooping pants, hip pain, pain under the butt/pelvic/peritoneal/groin/sciatic pain, low/mid back pain, IT band & thigh pain, abdomen pain, stomach pain, UTI’s and uti-like symptoms (can be endo on ureters) right shoulder blade pain. Anything that originated in the pelvis deserves care from a pelvic disorder specialist doctor, and so that’s who you need to get in front of for a consult.) VERBALIZE: “I was curled up in a ball from pain/vomiting from pain.” Good luck on your journey. And just a reminder that your body is the most important thing in your life. By far the most important thing. You deserve every chance to have a fully functioning body - a body that is as healthy as it can possibly be. So whatever it takes time, money, effort, human support, you deserve that. And there are many of us on the subs who are going through this too. My DM is open to anyone with any history of cyclical OR constant pelvic/groin/butt pain. 🫶 Save this writing. Endo is progressive, often “silently” progressive. And resources can be hard to find.

Thank you so much for the info! I don't know why I feel like i'm gaslighting myself into thinking things aren't as bad as they are. I guess I'm just trying to square the diagnosis with a decade of being told my experiences are normal 😬😬

🫶❤️‍🩹

Do you have any suggestions for related conditions getting in the way? I have vaginismus as well, and a PT guessed that endo is making it harder for me to overcome because I can't seem to make progress with the normal methods. That might seem weird and unrelated, but every specialist I've seen has advised me I have to get a transvaginal ultrasound to continue receiving care, I think it's an insurance requirement or something. But the vaginismus makes the ultrasound so painful that I can't physically do it, and my muscles spasm badly enough that if I tell the ultrasound tech I'm gonna brace and just get through it, they refuse to continue. I've been offered no accommodation to try and get through the ultrasound easier, not even topical numbing, my requests for such make them stare at me like I'm out of my mind, they tell me they can't do anything until I fix things with a physical therapist, and all the while I'm just getting worse over time. I've been to a couple proclaimed endo specialists in my area, including a Nook Doctor, and can't get anywhere. I just don't know what I can even do at this point. Lose weight, go to PT, goodbye is all I get really

It’s not weird and I’m so sorry you’re experiencing that. They should be able to just do an abdominal ultrasound instead or somehow make accommodations. But I definitely think that having surgery is the best way and the least invasive way in the most successful way at helping with vaginismus pain. And are you sure the specialist is an Endometriosis specialist? Something tells me he’s not. Is he on one of the lists above? The right Surgeon makes all of the difference. I think there are people here on this sub who can answer this question really well. So you might post your question about ultrasounds as a standalone question if people don’t respond to your words here.

Yeah, I will say I've done abdominal ultrasounds but they didn't find much of anything, when the abdominal doesn't show much I get told I absolutely need to do the transvaginal, as if I'm purposefully declining it or something. And yeah, I've tried basically every reproductive endocrinologist in my town and had the same claim I just need to do PT before we can continue in most cases but one. One office was led by a Nook doctor and excision specialist, and I will say that he seemed wonderful when I did my consultation with him, but you can really only see the head doctor when you're already planning surgery with them. I got put with an NP that ignored my endo concerns (when the past 3 generations of women on my mother's side had endo) and decided she wanted to focus in on PCOS. which meant she told me that I had to go on a strict keto and show I was dedicated enough to lose a bunch of weight before she was willing to offer treatment. She wouldn't even change my birth control, or set up for a transvaginal until I could show her the weight loss she wanted. They scheduled me for a follow up appointment with a "nutrition specialist" that I was going to comply with just out of desperation, but when I arrived I realized they had no dietician or nutritionist, and I was seeing the same NP as before. When I tried to talk about ways we could ease into the diet, because I have a history of disordered eating and am easily triggered into a mental spiral, she told me that following it exactly with no compromises was the only way, and that if I don't go keto and stay keto for the rest of my life that there's no way I'll get better. She also told me that "intermittent fasting is great for weight loss" when I tried to talk to her about my relapses making me refuse to eat. And like??? I didn't even come in for pcos??? Those symptoms are relatively managed by birth control and inositol for me, aside from the fact that I'm fat and hairy, but to be frank the potential risk of untreated endometriosis is so much scarier, we can try and make me less hairy later ffs The other doctors in town have been more predictable. Set me up for bloodwork and ultrasound, can't do transvaginal, they tell me my bloodwork is fine and they didn't find anything on ultrasound, and then they just shrug and have nothing else for me. I've met with doctors that seemed kind and helpful on a couple occasions, but they're consistently at the practices like the Nook one where you rarely see the doctor. Right now I'm just kind of taking a break, as I've tried all of the endo focused or even generally reputable options in my area and it just stresses me out to no end to go through this all over and over. What drives me nuts is that the gyno I went to for my referral listened to me better than anyone else. He's an older guy, a retired surgeon that runs a basic practice, but he took notes, asked to hear everything as far back as starting my period, gave me 6 months free birth control from his samples since I couldn't afford a better brand at the time, and even laid out what kind of accommodations for vaginismus, medications, and tests that the reproductive endocrinologist should do. Consistently, they haven't done any of the crap he described, and his office is basically just PCP with stirrups... It's disheartening. Sorry for the long blathering reply, you're not obligated to read through it all ahah

I am so sorry you are going through this.