Dr. Nicholas Fogelson

Of course i cant fully diagnose bc you need a laparoscopy to do that, & probably even a endo specialist to see if its around your bowels & colon. So disclaimer i cant say for sure because of that & im not a medical professional. But i would say theres a high possibility that yes you have endo. maybe even bowel endo or on your colon?? One thing you said that you didnt have this pain during pregnancy kind of makes it sound like it too. Not that endo stops during pregnancy for sure, but it is supposed to be cyclical, and i can imagine it lessening or stopping then. They also like to say getting pregnant can help or stop endo, but im not too sure on that theory. Either way that is a red flag or tip. I have pain in my butthole too, so does my sister & it really hurts us to even sit. I didnt suspect endo until my sister started birth control over a year ago, and her butt pain SIGNIFICANTLY lessened to almost none. So now we both think there is endo maybe on bowels or colon. Birth control did NOT stop or lessen mine tho. But it also hasnt stopped my period at all, i breakthru bleed most days actually so im thinking adenomyosis (endo kind of in the uterus) & i still have bad debilitating cramps. My thought tho is you might want to have a colonoscopy? if you havent already just to rule anything else out? I have blood in my stool but i figured hemorrhoids, i was right it was just that. Colonoscopy typically is not going to show endo. as the endo could be on the outside of the colon or bowel, & the colonoscopy is just seeing a camera inside. but it at least rules it out, & shows doctors theres nothing to see inside. its more likely an endo problem. I also would try to see an endo specialist. Nancys Nook i think has a list, & icarebetter is good. Im seeing a specialist out of state in Portland & my sisters surgery is with them in a week or two. She asked for a colorectal surgeon to be present to help with her suspected bowel endo. Id also suggest watching Dr Nicholas fogelson on youtube/instagram. Dr shanti Mohling on instagram. The videos explaining & showing endo greatly helped me. The other videos on youtube that keep recently talking about butt pain are from Dr Camran Nezhat, a lot of the recent videos he talks about butt pain being endo & it solidified for me to keep pushing for an answer. Hope this helps!

Wow this gave me so much relief. my sister has surgery with Fogelson in 2 days & i see Mohling for the first time the next day. Its a consult & exam but im aiming for her thoughts, but ultimately a lap to search for endo & a hysterectomy bc im just so sure i have adeno. Im getting so anxious about my sisters surgery, she could possibly have bowel endo & im just scared. but today my fam met with Fogelson & he was so nice and reassuring. i look forward to meeting Mohling but im anxious about it too. She is always nice on instagram tho.

Well im i shouldnt be giving medical advice bc i truly dont know the circumstances, so i could be wrong. But i dont like that that doctor said you have to do 6 months of pelvis floor PT for 6 months “before they would do anything” I mean maybe that would be helpful? idk much about it, and how well it helps? but it doesnt stop endo? like you need your endo excised right? Idk thats weird to me. Idk if it would be helpful in your extra research to watch some endo specialists on IG (nicholas fogelson, shanti mohling, camran nezhat) their videos are very helpful to me. Maybe something will be helpful to you on there!

Im not an expert on this, I just wonder if looking up the videos (that me and my sister watched and really were helpful to us) from Dr Nicholas Fogelson & Dr Shanti Mohling. Theres vids on youtube that are more in depth. But i liked their vids and explanations of endo stuff on their Instagrams. Im actually getting surgery tomorrow morning with Dr Mohling, has been THE BEST.

Okay i hope this is okay to do, I really want to recommend the doctors me and my sister went to! I hope i’m not stepping on any toes, I also know this isnt available to everyone to travel and pay for out of state or out of country (idk where u are) But i just feel for you and i hope its okay to recommend them, or at least help you do more research! My sister and i watched their youtube videos on surgery and explaining complicated surgeries for endo, and i really liked their instagrams too with more pics and videos of surgeries and I could just really tell their skill level and confidence and they really seem to know what to do, no matter how “bad.” They are in Portland Oregon. Dr Fogelson and Dr Mohling. They are endo specialists, on nancys nook i believe, and also part of iCareBetter so they have surgeries videoed and are proven to he experts. They also take on cases that are too hard or that other surgeons couldnt do or whatever. They do excision of endo, and i really believe if there is any visible endo possible, they will remove it. Maybe the adhesions too? but you would have to talk to them. Did your surgeon take any pictures for you? Altho i dont know much about microscopic endo, that i dont know what to say about and if a doctor cant see it, theres not much to do :/ sorry i am trying to help my friend with the same thing. Idk if this comment even helps you. but I feel for you, im so sorry! What i loved about them is that they really believed me and did their best. Its like she knew everything i was concerned about and on the exam even felt the possible places for endo (she saw i had more pain and felt more on my left side, and i had no idea!)

I heard one dismissive gyno doctor dismiss my sisters pain as not endo bc “the pain wasnt cyclical or only on her period so it cant be endo” But that lady doesnt know anything tbh and many and most of what i read is pain a lot of the time or even everyday. Cyclical makes sense and sometimes that too or maybe started off as just during period. But endometriosis is pretty extensive and is considered a “full body disease” as it has been found on every organ of the body, it also can continue hurting and causing pain even when one gets a hysterectomy because it doesnt need your period to be causing pain. It creates its own estrogen or something like that (im sorry i just woke up and im sorry if i misspeak. someone will correct me im sure if i say something off.) Plus cysts can hurt at any time and rupture at any time :( Im sorry you are going thru pain!!! My sister had a cyst rupture, her gyno called her in to tell her and they would talk about it (but then in the visit gave no help and actually played it off and didnt even mention it ruptured. but refused to help her with anything. my mom and her left crying because she said there was nothing to be done which isnt true. and yelled at them for even mentioning medicine for pain.) 2 days later the tech from the ultrasound place called and was like…..um your cyst looks like it ruptured on the scans we have and you must be in excruciating pain…. I got them to listen and talk to someone else, at the very LEAST hormonal birth control can sometimes help. Even surgery is sometimes an option. I suggest finding endo related instragrams and endo specialists even have instas and youtube videos of their surgeries, or explaining the pain that i found super helpful. (I love Dr Fogelson and Dr Mohling on youtube and insta if that helps)

yikes any gyno who dismisses you like that and says a lap wont work, AND just keeps pushing birth control and says it will take 3 years to work????? girl please get out of there. get a new doctor if you can. preferably an endo specialist if you can. do your research on endo. follow instas, i follow some endo specialists and their vids and posts have educated me so so much and they are so skilled and awesome and believe patients! (dr shanti mohling and dr fogelson are some good examples.)

Yes you should start pushing for answers and help. but i say pushing because a lot of doctors are going to dismiss it and say its normal. its not normal. Id recommend also doing research, alot on endo and on Adenomyosis, since you bleed for so long. I do too. and no doctor cared to mention to me and when i finally learned about it from a link my sister sent, i was floored and when i brought it up to doctors they said i was too young. which isnt true. do your research. Look up endometriosis specialists, they are the ones who listen. I would recommend reading others stories, follow and watch instagrams and tik toks even of woman who have those same struggles. Id recommend watching youtube or instagrams vids and posts from endo specialists Dr shanti mohling and dr fogelson to start off with. They educated me so much. Dr Mohling is awesome she ended up being the first doctor to believe me and listen and found my problems right away.

Yeah but i think every excision specialist might set up their own rules. Youd want to double check with their website or maybe call the office even. I know this isnt close by, but my sister and i did a ton of research and chose to travel a few states over to Portland Oregon for the specialists Dr Shanti Mohling and Dr Nicholas Fogelson. Their website i think says they have their fee for themselves and their assistant (DM me and ill send you around what their fee is, but their website also has it) but the other thing is there is a hospital fee because they do the surgery in a hospital and use a real nice machine to robotically do the laparoscopy. The hospital fee can be quite high (the higher fee) especially if your insurance isnt willing to pay out of network, out of state. My insurance did not want to, and denied the surgery. im still appealing. Anyway, The specialists i mentioned are incredibly nice and their skill level is awesome. Im so so happy i went there. The hospital they work with is also incredibly nice and kind and organized. We have loved every bit and have felt heard and believed!!!! and we dont regret our surgeries at all. The morning of surgery i felt so happy and excited (and secure because i had so much confidence in Dr Mohling and skills and she would respect all my wishes.) I cant say enough good things about them!

My sis and i traveled to portland oregon for the specialists there. My sis did a lot of research and found them. Dr Nicholas Fogelson and Dr Shanti Mohling in Portland. They are amazing and helped us so much. I had my surgery for endo excision a week and a half ago. and im doing really good. She found everything, i think other doctors would have missed it. She is the only doctor that listened to me and found what im talking about after 15 years of doctors not listening to me.

(im not an endo specialist or doctor.) I would say its probably not, however! endo can be lesions, but it can also be hard nodules. Ive watched some of Dr Fogelsons and Dr Shanti mohling’s instagram and youtube videos. and they show surgery scenes, and ive seen peoples endo be hard nodule that you can feel i think, But idk if youd be able to feel from your stomach?? So i honestly dont know. I do totally recommend those two doctors in Portland, and recommend watching their videos. they are the best!

Ok friend i was just checking. thanks i dont know what all the words on this post mean, im not in oregon. But i did just go to portland last month for an endo specialist. I would highly recommend Dr Shanti Mohling. She is amazing, I have nothing but good things to say about her. She *immediately* found my endo spots and believed me. Also did the ultrasound herself and saw signs of adeno which is what i was thinking too bc i couldnt get the bleeding to stop. Did amazing on my surgery. Really went above and beyond to make me feel comfortable. i wish i lived in portland bc i only want to see her. (oh actually her partner is awesome too, Dr Fogelson.) You can watch some of their videos on insta or youtube too. The surgery was done at Good Samaritan Hospital, and the hospital was super nice too.

I think i saw a clip of a surgery on Dr Fogelson’s instagram (endo specialist in portland) and he removes a bump on/in the vag i believe on the video. It was like a hard nodule if i remember right? i have no clue obviously if its the same thing you are dealing with…but wanted to say it bc maybe you will relate to it if you watch the videos? Disclaimer, im usually ok with the surgery videos but that one was a little tough to watch for me for some reason. but he did a great job. Actually he and his partner Dr Shanti Mohling are great specialists, Dr Mohling just did my endo surgery 3 weeks ago. They are the best.

So my sister did a ton more research than i did, but what we ended up really liking and appreciating were Dr Nicholas Fogelson’s youtube videos. He is an endo specialist in Portland, and his videos sometimes show surgeries explaining them, and other he is talking about endo or treatments and he just explains things so well. I ended up looking up his partner too Dr Shanti Mohling, and watched both of their instagram posts and videos. Super knowledgeable and explain things so well, obviously have empathy for their patients, liked and commented on my comments in the comment section and when we finally went to see them these past two months, they were just as great in person. Really i found the most research and knowledge googling, but also instagrams from people who have had endo for so long and those two doctors especially. They show clips of their surgeries and I loved how she even showed the tiniest spots of endo and its considered “stage 1” so many would conclude “its not that bad” but she even remarks the great pain that stage 1 people have and it can be debilitating. Their skill level is awesome. They do excision of the endo (not ablation…thats burning the surface of the endo and often causes more pain and doesnt remove the problem at all.) Yeah you do have to do some digging for real info on endo. They are what helped me. Oh also I couldnt stop my bleeding, turned out theres a sister disease to endo “Adenomyosis” with the uterus, and all local doctors just brushed me off and said im too young (their excuse for everything) but Dr Mohling believed me and looked for the problems and found them immediately. Sorry if this doesnt help.

70% of gynos who claim to know how to know what endo looks like cant point it out on pictures. 10 minutes is ridiclous, i would complain. im so sorry. Did they even take pictures?? It would take longer than 10 minutes to look everywhere endo could be. Id also suggest finding endo specialists online to see then explain endo and surgery. My sister found Dr Nicholas Fogelson on youtube, he posts some of his surgeries too. I particularly liked his instagram posts explaining things, and his partner’s instagram Dr. Shanti Mohling.

Might want to look up what some endo specialists say on this. Theres a reason excision is called the gold standard. It might even mean that they arent up to date with current methods/reasons or they arent skilled enough to do it. My sister and i liked Dr Nicholas Fogelson’s youtube videos & his instagram videos, even showing surgery videos & explaining. I like his partners instagram Dr Shanti Mohling. I like also how they are a part of iCareBetter (surgeons who have proved thru videos of their surgeries that they are skilled in excision of endo.) I just had my lap at the end of september, with Dr Mohling. I feel so so much better, saw the video of my surgery & saw the endo cut out.

Youre not crazy. My sister and I and many others have had their fair share of horrible doctors who gaslight us all and lie and just dont care. My sister had a gyno say it wasnt endo & she was just depressed & she needs to start exercising (my sister isnt even overweight) & go shopping at the mall & her pain would stop. she also said my sisters pain wasnt endo since it hurt even “not on her period”….outdated & wrong……. I had a nurse at my gynos when i went for an emergency visit that day from bleeding so much ON THE PILL, i explained how it was so much bleeding (they truly dont care and hear it all the time) AND I was having incessant worst cramps of my life ON the pill. & that i was bleeding so much i get nosebleeds on my period. She laughed at me & said try a humidifier & that “maybe birth control just isnt for u sweetie” i said “maam. its like this with and without bc, hell. thats why im trying to prove to u guys and insurance that i need a lap for endo.” she just stared at me. & also laughed at me when i asked about ADENOMYOSIS. (please look into adenomyosis, i fit all the symptoms yet no doctor brought it out to me) She said there was no way, quickly glanced at an ultrasound and said “yeah no way. plus youre young.” sent me for blood work..,.the bloodwork at least proved i wasnt lying about how much i was bleeding. i was so close to anemic, and my iron ferritin was so low it was at 7. i needed iron infusions. Anyway. a lot are jerks, a lot of specialists can just call themselves specialists. my sister did a ton of research & we went out of state. She liked their youtube videos & showing their surgeries & honesty & explanations & skill level. I found their social media on insta & i loved how they just believed women & seemed so kind. So we talked our parents into it, & went to Portland. They were amazing. I have no complaints on my surgery im 5 months post op. Im still baffled how they just were so kind & believed me right off the bat. Immediately asked if i thought adenomysis, the only doctor to do so. Found the spot on my rectum too that was causing me shooting butt pain. I was up and walking & showering myself 2 days after surgery & i feel so much better. Highly recommend them, or at least checking out their Instagram, they are making a lot of videos this month bc of Endo Awareness Month. Make sure you find a specialist that knows what they are doing, only does excision, not ablation. I also like the website/instagram iCareBetter, these specialists have shown thru their surgery videos they KNOW what they are talking about. Specialists in portland: Dr Shanti Mohling, Dr Nicholas Fogelson

I would look into Dr Shanti Mohling & her partner too Dr Fogelson. their instagrams & youtube videos showed me and my family that they really care and how skilled they were. Just as compassionate, if not more in person. Dr Shanti Mohling is the best doctor ive ever had & did amazing. Even showed me video of my surgery after. Like how skilled & confident do you have to be to be able to video your work & show the patient? My family and i are super impressed by it. I really dont have any regrets going to her, i only wish i couldve discovered her sooner.

Dr Shanti Mohling & her partner Dr Nicholas Fogelson. Id recommend watching their informative videos on their instagrams, & some of their surgeries or explanations are on youtube as well. My whole family is so happy with the entire experience & feel it was well worth the effort to travel there & see them. First time ive been validated & heard & their skill level knocked it out of the park.

i would like to suggest looking at Dr Shanti Mohling in Portland oregon’s instagram & youtube. i love the way she explains endo and surgeries and more. she shows her surgery videos and a few on youtube. (The endo specialist she works with, Dr Nicholas Fogelson, also has a great informative instagram and answers questions on youtube too.) I chose to fly out of the state to see her, and i was hoping she would be as kind and compassionate and SKILLED as her videos, and SHE WAS. she was amazing, hugged me, was so so kind and considerate. felt bad for me with all the pain i had, BELIEVED ME…. loved her work on my surgery, i could tell leaving the hospital how well she did. she went above and beyond. i dont have any regrets. (other than i wish i lived in that state and could see only her or couldve found her sooner lol) if anything, like i said check her vids out, might help with some choices or show you someone to compare other doctors with to see if they seem skilled or compassionate. And check her website/call to see if you can do a phone or zoom consultation at least. i feel like she gave me the best options & then heard me with what i wanted and helped make it happen.

mine was Stage 2 and it was about 4 hours…. and doesnt sound as complicated as yours will be. idk the specialist i saw and her partner were so skilled and confidant, im sure they would still preserve fertility while still excising the bowel and ureter area. (my specialist showed me video of the weird stretchy endo around my ureter area and how she took the time to carefully excise it…) I would suggest watching Dr Shanti Mohling (she was my surgeon in Portland) her instagram videos and a few youtube videos, and her partner Dr Nicholas Fogelson, his instagram and many youtube videos ….very educational, to me it proved how skilled they are, they confidently show their surgery videos and have been doing this for years so he even says that nothing is going to come as a surprise to him. At the very least check out their instagrams, and if u want check their website since it offers a free phone consult too..

I also had Dr Mohling (who works with Dr Fogelson) and i have no regrets going to her. i would literally only go to either of them. great experience, they are both actually like how they are on their instagrams, she was so so so kind and compassionate. they immediately believe you and i trust in their skill from their surgery videos. i watched my own surgery video and could see the level of care put into it. i also really liked the hospital they work with in portland, most on top of it hospital ive ever been to.

I had to travel out of the state for a true endo specialist. my sister did a ton of research and there is a lot of problematic stuff with n”ncys n””k. i cant say all of what my sister researched & the conclusions she came to but she really liked some specialists in portland oregon. i ended up checking out their social media, and i just really liked how they presented themselves, said and showed how they believed their patient’s pain & acknowledged the crazy gaslighting stuff other obgyn and other soecialists have said to patients. i liked how they showed videos of their actual surgeries and explained things. i ended up flying to another state like i said and choosing to see Dr Shanti Mohling (so check her instagram posts and vids, and a few youtube vids for yourself is my recommendation.) and i worried in the back of my head “what if she isnt as nice and compassionate as she seems on her posts?? what if she doesnt help me??” well she was so so so so nice even more than her posts. i have no regrets about seeing her, she believed me, took my research seriously and my symptoms, didnt mock me that i came prepared, gave me options, really took time to listen, hugged me, performed the exam and ultrasounds herself & showed me how i was showing more signs of pain when she touched in my left side and confirmed it really seemed like endo and adeno. she listened to what i wanted in surgery, went above and beyond for me, reassured my family that she was super careful (i was anemic from blood loss from my nonstop period and didnt want blood in surgery) so she treated and did the surgery as i was her own daughter (careful she means?? i know i typed that funny) found my family after surgery, showed them pictures of my endo confirmed. later showed me the video and explained different parts confirmed stage 2 endo. she truly was the best. So my recommendation again is to research a lot. look up reviews of the surgeons you look into (i found some horrible reviews of the “top” endo guy in my state…so glad i didnt go to him) At least watch Dr Shanti Mohling & her endo surgeon partner at their practice Dr Nicholas Fogelson instagrams and youtubes.

Its okay to cancel the surgery and to not go with that doctor. in fact its more than okay. doing a surgery is a lot to put your body thru, just for them to look around and say yep you got it, but not do anything about it. Another thing to consider is if they arent even skilled enough to excise the endo, they are very very likely to not know what different endo types look like and are more likely to say “i didnt see anything, you dont have it.” many have went to drs claiming to be endo soecialists and they said they dont have any endo, later to go to a real endo specialist and its confirmed. Really going with this doctor is a waste of time money and your health. I would like to suggest looking thru Dr Shanti Mohling’s instagram. i loved her compassion and explanations so much, on her insta and youtube, and her endo partner Dr Nicholas Fogelsons instagram too….that i flew out of state to see her. She was just as compassionate and awesome in person, actually Knew what she was talking about and had a plan. I felt super confidant in her doing my surgery that i was happy and giddy that morning. I had no anxiety and knew she would give it her best. she found stage 2 endo, worked hard at cutting it out, found my family in the hospital, showed them pictures of my surgery with explanations written down and hugged my sister who was crying that i finally got confirmation after 15 years. 3 days later on the follow up (which i was doing significantly great) i saw the video of my surgery and saw how much she found endo in parts that to an untrained eye (some parts i couldnt even tell looked like endo) she found. I hope you are able to cancel and do more research and find a good surgeon who cares about endo

i would suggest with a lot of research, a lot. endo is very much misunderstood, many gynos dont know the right stuff, updated research. even ones who claim to be endo specialists, arent and can gaslight you. I would recommend checking out Dr Shanti Mohling’s instagram, she is the endo specialist i really liked her compassion and knowledge of endo. her surgery videos seemed really skilled and i just loved that she believes her patients pain. (she has a few youtube videos too.) I would also check her endo working partner Dr Nicholas Fogelson’s instagram and he has a lot of youtube videos too, in depth surgery questions as well. They really know their stuff, and arent arrogant. I even flew out of state to see her, & she was amazing and went above and beyond to help me. I recovered well from her surgery, my family and i are really impressed. I have no regrets in the effort to go see her, so glad i didnt continue down my local route of being gaslit and saw some pretty scary reviews of the endo specialist from where i am.

i traveled out of state to Portland Oregon to see Dr Shanti Mohling. HIGHLY RECOMMEND. i have no regrets. I would 1000% recommend watching her videos and posts on her instagram (my sister did a ton of research and found her working partner Dr Fogelson’s youtube videos of his surgeries and q&a’s and then i checked his instagram posts too….so highly recommend watching his stuff too. and thats how i found her by checking their posts and their website. ) i really liked them both a lot based off their videos and explanations and how they just believe their patients, like you dont have to go on and on trying to convince them that you are in this much pain, only to be gaslit like so many doctors do. they totally believe your pain and seemed to really know their stuff. I really liked how compassionate she seemed in her videos too and so i booked a ticket and a initial visit and exam (you can totally call and ask for a free phone call consult or zoom i think on their website) I was a little nervous as i am before all doctor appointments now, but every video of theirs had put me at ease and i just hoped she would be as compassionate and great as she seemed on her posts. well, she WAS! she went above and beyond for me, believed me right away, was on the same page, didnt belittle me for having come super prepared. she did what she could to help me and catered to my preferences and what i actually wanted. she hugged me. she felt so bad i was in an insane amount of pain during the exam (and then told me stuff i didnt know or realize. like “do you realize you are in way more pain when i feel on your left side? i bet theres more endo on your left.” and then she showed me, and i was in so much i didnt even put that together but she was right.) she was amazing what she could tell even before surgery. I felt super safe in her hands. i was so confident and happy with her as my surgeon i wasnt even nervous the morning of and was giddy and excited to finally have answers and a hysterectomy after 15 years of being gaslit. After my surgery, she found my family in the hospital, showed them printed out pictures of the endo she found. stage 2. walked them thru it, and hugged my crying sister who was happy for me to have answers and get excision surgery. I saw the video of my surgery a few days later on follow up and there were a few spots i could clearly tell were endo, and there were areas she was explaining were endo that i couldnt tell (endo is so tricky you really need a true expert!!) like around my ureter area, the skin was almost sticking to the ureter and being weird and she was like im certain that was endo bc the skin(flesh ?? idk the words) shouldnt have felt like that. and she was going on her expertise of the robot. with how bad my health is and how weak i am in general, and then even moreso because i was bleeding for 8 months on birth control because of adenomyosis…..im shocked at how well i was doing after surgery. like the next day….i was walking around. the next day i showered and i felt fine, no need to even use the shower chair. (i will say on day 6 is when it hit me and i had a bad day of body aches. ….and with my other chronic health conditions i have had to take it super easy and rested a ton this year but i also have a sleeping disorder….sooooooo with what i can tell based on the surgery and my incision recovery and how i wasnt in pain in the surgery spots WOW im still impressed with her. ) i hope what i wrote made sense. I of course am a believer that endo comes back, and i believe that doctors even experts can only do so much, but i think she did the best that anyone could have done, im super happy with the surgery. I would go back to see her again. another thing to add, i love the hospital too that Dr Mohling and Fogelson work out of, in portland. nicest cleanest hospital, best staff like insanely nice nurses and helpful people. most on top of it hospital. it was a great bonus because i just cared about having her as my surgeon but the hospital was so kind i would want to have any surgery there. i would never say that about any of my local hospitals or drs. If anything, check her insta and youtube, and his if you can. Schedule a free consult over phone or zoom. its worth it, even to compare if you are debating over someone else.

Of course i cant fully diagnose bc you need a laparoscopy to do that, & probably even a endo specialist to see if its around your bowels & colon. So disclaimer i cant say for sure because of that & im not a medical professional. But i would say theres a high possibility that yes you have endo. maybe even bowel endo or on your colon?? One thing you said that you didnt have this pain during pregnancy kind of makes it sound like it too. Not that endo stops during pregnancy for sure, but it is supposed to be cyclical, and i can imagine it lessening or stopping then. They also like to say getting pregnant can help or stop endo, but im not too sure on that theory. Either way that is a red flag or tip. I have pain in my butthole too, so does my sister & it really hurts us to even sit. I didnt suspect endo until my sister started birth control over a year ago, and her butt pain SIGNIFICANTLY lessened to almost none. So now we both think there is endo maybe on bowels or colon. Birth control did NOT stop or lessen mine tho. But it also hasnt stopped my period at all, i breakthru bleed most days actually so im thinking adenomyosis (endo kind of in the uterus) & i still have bad debilitating cramps. My thought tho is you might want to have a colonoscopy? if you havent already just to rule anything else out? I have blood in my stool but i figured hemorrhoids, i was right it was just that. Colonoscopy typically is not going to show endo. as the endo could be on the outside of the colon or bowel, & the colonoscopy is just seeing a camera inside. but it at least rules it out, & shows doctors theres nothing to see inside. its more likely an endo problem. I also would try to see an endo specialist. Nancys Nook i think has a list, & icarebetter is good. Im seeing a specialist out of state in Portland & my sisters surgery is with them in a week or two. She asked for a colorectal surgeon to be present to help with her suspected bowel endo. Id also suggest watching Dr Nicholas fogelson on youtube/instagram. Dr shanti Mohling on instagram. The videos explaining & showing endo greatly helped me. The other videos on youtube that keep recently talking about butt pain are from Dr Camran Nezhat, a lot of the recent videos he talks about butt pain being endo & it solidified for me to keep pushing for an answer. Hope this helps!

Wow this gave me so much relief. my sister has surgery with Fogelson in 2 days & i see Mohling for the first time the next day. Its a consult & exam but im aiming for her thoughts, but ultimately a lap to search for endo & a hysterectomy bc im just so sure i have adeno. Im getting so anxious about my sisters surgery, she could possibly have bowel endo & im just scared. but today my fam met with Fogelson & he was so nice and reassuring. i look forward to meeting Mohling but im anxious about it too. She is always nice on instagram tho.

Well im i shouldnt be giving medical advice bc i truly dont know the circumstances, so i could be wrong. But i dont like that that doctor said you have to do 6 months of pelvis floor PT for 6 months “before they would do anything” I mean maybe that would be helpful? idk much about it, and how well it helps? but it doesnt stop endo? like you need your endo excised right? Idk thats weird to me. Idk if it would be helpful in your extra research to watch some endo specialists on IG (nicholas fogelson, shanti mohling, camran nezhat) their videos are very helpful to me. Maybe something will be helpful to you on there!

Im not an expert on this, I just wonder if looking up the videos (that me and my sister watched and really were helpful to us) from Dr Nicholas Fogelson & Dr Shanti Mohling. Theres vids on youtube that are more in depth. But i liked their vids and explanations of endo stuff on their Instagrams. Im actually getting surgery tomorrow morning with Dr Mohling, has been THE BEST.

Okay i hope this is okay to do, I really want to recommend the doctors me and my sister went to! I hope i’m not stepping on any toes, I also know this isnt available to everyone to travel and pay for out of state or out of country (idk where u are) But i just feel for you and i hope its okay to recommend them, or at least help you do more research! My sister and i watched their youtube videos on surgery and explaining complicated surgeries for endo, and i really liked their instagrams too with more pics and videos of surgeries and I could just really tell their skill level and confidence and they really seem to know what to do, no matter how “bad.” They are in Portland Oregon. Dr Fogelson and Dr Mohling. They are endo specialists, on nancys nook i believe, and also part of iCareBetter so they have surgeries videoed and are proven to he experts. They also take on cases that are too hard or that other surgeons couldnt do or whatever. They do excision of endo, and i really believe if there is any visible endo possible, they will remove it. Maybe the adhesions too? but you would have to talk to them. Did your surgeon take any pictures for you? Altho i dont know much about microscopic endo, that i dont know what to say about and if a doctor cant see it, theres not much to do :/ sorry i am trying to help my friend with the same thing. Idk if this comment even helps you. but I feel for you, im so sorry! What i loved about them is that they really believed me and did their best. Its like she knew everything i was concerned about and on the exam even felt the possible places for endo (she saw i had more pain and felt more on my left side, and i had no idea!)

I heard one dismissive gyno doctor dismiss my sisters pain as not endo bc “the pain wasnt cyclical or only on her period so it cant be endo” But that lady doesnt know anything tbh and many and most of what i read is pain a lot of the time or even everyday. Cyclical makes sense and sometimes that too or maybe started off as just during period. But endometriosis is pretty extensive and is considered a “full body disease” as it has been found on every organ of the body, it also can continue hurting and causing pain even when one gets a hysterectomy because it doesnt need your period to be causing pain. It creates its own estrogen or something like that (im sorry i just woke up and im sorry if i misspeak. someone will correct me im sure if i say something off.) Plus cysts can hurt at any time and rupture at any time :( Im sorry you are going thru pain!!! My sister had a cyst rupture, her gyno called her in to tell her and they would talk about it (but then in the visit gave no help and actually played it off and didnt even mention it ruptured. but refused to help her with anything. my mom and her left crying because she said there was nothing to be done which isnt true. and yelled at them for even mentioning medicine for pain.) 2 days later the tech from the ultrasound place called and was like…..um your cyst looks like it ruptured on the scans we have and you must be in excruciating pain…. I got them to listen and talk to someone else, at the very LEAST hormonal birth control can sometimes help. Even surgery is sometimes an option. I suggest finding endo related instragrams and endo specialists even have instas and youtube videos of their surgeries, or explaining the pain that i found super helpful. (I love Dr Fogelson and Dr Mohling on youtube and insta if that helps)

yikes any gyno who dismisses you like that and says a lap wont work, AND just keeps pushing birth control and says it will take 3 years to work????? girl please get out of there. get a new doctor if you can. preferably an endo specialist if you can. do your research on endo. follow instas, i follow some endo specialists and their vids and posts have educated me so so much and they are so skilled and awesome and believe patients! (dr shanti mohling and dr fogelson are some good examples.)

Yes you should start pushing for answers and help. but i say pushing because a lot of doctors are going to dismiss it and say its normal. its not normal. Id recommend also doing research, alot on endo and on Adenomyosis, since you bleed for so long. I do too. and no doctor cared to mention to me and when i finally learned about it from a link my sister sent, i was floored and when i brought it up to doctors they said i was too young. which isnt true. do your research. Look up endometriosis specialists, they are the ones who listen. I would recommend reading others stories, follow and watch instagrams and tik toks even of woman who have those same struggles. Id recommend watching youtube or instagrams vids and posts from endo specialists Dr shanti mohling and dr fogelson to start off with. They educated me so much. Dr Mohling is awesome she ended up being the first doctor to believe me and listen and found my problems right away.

Yeah but i think every excision specialist might set up their own rules. Youd want to double check with their website or maybe call the office even. I know this isnt close by, but my sister and i did a ton of research and chose to travel a few states over to Portland Oregon for the specialists Dr Shanti Mohling and Dr Nicholas Fogelson. Their website i think says they have their fee for themselves and their assistant (DM me and ill send you around what their fee is, but their website also has it) but the other thing is there is a hospital fee because they do the surgery in a hospital and use a real nice machine to robotically do the laparoscopy. The hospital fee can be quite high (the higher fee) especially if your insurance isnt willing to pay out of network, out of state. My insurance did not want to, and denied the surgery. im still appealing. Anyway, The specialists i mentioned are incredibly nice and their skill level is awesome. Im so so happy i went there. The hospital they work with is also incredibly nice and kind and organized. We have loved every bit and have felt heard and believed!!!! and we dont regret our surgeries at all. The morning of surgery i felt so happy and excited (and secure because i had so much confidence in Dr Mohling and skills and she would respect all my wishes.) I cant say enough good things about them!

My sis and i traveled to portland oregon for the specialists there. My sis did a lot of research and found them. Dr Nicholas Fogelson and Dr Shanti Mohling in Portland. They are amazing and helped us so much. I had my surgery for endo excision a week and a half ago. and im doing really good. She found everything, i think other doctors would have missed it. She is the only doctor that listened to me and found what im talking about after 15 years of doctors not listening to me.

(im not an endo specialist or doctor.) I would say its probably not, however! endo can be lesions, but it can also be hard nodules. Ive watched some of Dr Fogelsons and Dr Shanti mohling’s instagram and youtube videos. and they show surgery scenes, and ive seen peoples endo be hard nodule that you can feel i think, But idk if youd be able to feel from your stomach?? So i honestly dont know. I do totally recommend those two doctors in Portland, and recommend watching their videos. they are the best!

Ok friend i was just checking. thanks i dont know what all the words on this post mean, im not in oregon. But i did just go to portland last month for an endo specialist. I would highly recommend Dr Shanti Mohling. She is amazing, I have nothing but good things to say about her. She *immediately* found my endo spots and believed me. Also did the ultrasound herself and saw signs of adeno which is what i was thinking too bc i couldnt get the bleeding to stop. Did amazing on my surgery. Really went above and beyond to make me feel comfortable. i wish i lived in portland bc i only want to see her. (oh actually her partner is awesome too, Dr Fogelson.) You can watch some of their videos on insta or youtube too. The surgery was done at Good Samaritan Hospital, and the hospital was super nice too.

I think i saw a clip of a surgery on Dr Fogelson’s instagram (endo specialist in portland) and he removes a bump on/in the vag i believe on the video. It was like a hard nodule if i remember right? i have no clue obviously if its the same thing you are dealing with…but wanted to say it bc maybe you will relate to it if you watch the videos? Disclaimer, im usually ok with the surgery videos but that one was a little tough to watch for me for some reason. but he did a great job. Actually he and his partner Dr Shanti Mohling are great specialists, Dr Mohling just did my endo surgery 3 weeks ago. They are the best.

So my sister did a ton more research than i did, but what we ended up really liking and appreciating were Dr Nicholas Fogelson’s youtube videos. He is an endo specialist in Portland, and his videos sometimes show surgeries explaining them, and other he is talking about endo or treatments and he just explains things so well. I ended up looking up his partner too Dr Shanti Mohling, and watched both of their instagram posts and videos. Super knowledgeable and explain things so well, obviously have empathy for their patients, liked and commented on my comments in the comment section and when we finally went to see them these past two months, they were just as great in person. Really i found the most research and knowledge googling, but also instagrams from people who have had endo for so long and those two doctors especially. They show clips of their surgeries and I loved how she even showed the tiniest spots of endo and its considered “stage 1” so many would conclude “its not that bad” but she even remarks the great pain that stage 1 people have and it can be debilitating. Their skill level is awesome. They do excision of the endo (not ablation…thats burning the surface of the endo and often causes more pain and doesnt remove the problem at all.) Yeah you do have to do some digging for real info on endo. They are what helped me. Oh also I couldnt stop my bleeding, turned out theres a sister disease to endo “Adenomyosis” with the uterus, and all local doctors just brushed me off and said im too young (their excuse for everything) but Dr Mohling believed me and looked for the problems and found them immediately. Sorry if this doesnt help.

70% of gynos who claim to know how to know what endo looks like cant point it out on pictures. 10 minutes is ridiclous, i would complain. im so sorry. Did they even take pictures?? It would take longer than 10 minutes to look everywhere endo could be. Id also suggest finding endo specialists online to see then explain endo and surgery. My sister found Dr Nicholas Fogelson on youtube, he posts some of his surgeries too. I particularly liked his instagram posts explaining things, and his partner’s instagram Dr. Shanti Mohling.

Might want to look up what some endo specialists say on this. Theres a reason excision is called the gold standard. It might even mean that they arent up to date with current methods/reasons or they arent skilled enough to do it. My sister and i liked Dr Nicholas Fogelson’s youtube videos & his instagram videos, even showing surgery videos & explaining. I like his partners instagram Dr Shanti Mohling. I like also how they are a part of iCareBetter (surgeons who have proved thru videos of their surgeries that they are skilled in excision of endo.) I just had my lap at the end of september, with Dr Mohling. I feel so so much better, saw the video of my surgery & saw the endo cut out.

Youre not crazy. My sister and I and many others have had their fair share of horrible doctors who gaslight us all and lie and just dont care. My sister had a gyno say it wasnt endo & she was just depressed & she needs to start exercising (my sister isnt even overweight) & go shopping at the mall & her pain would stop. she also said my sisters pain wasnt endo since it hurt even “not on her period”….outdated & wrong……. I had a nurse at my gynos when i went for an emergency visit that day from bleeding so much ON THE PILL, i explained how it was so much bleeding (they truly dont care and hear it all the time) AND I was having incessant worst cramps of my life ON the pill. & that i was bleeding so much i get nosebleeds on my period. She laughed at me & said try a humidifier & that “maybe birth control just isnt for u sweetie” i said “maam. its like this with and without bc, hell. thats why im trying to prove to u guys and insurance that i need a lap for endo.” she just stared at me. & also laughed at me when i asked about ADENOMYOSIS. (please look into adenomyosis, i fit all the symptoms yet no doctor brought it out to me) She said there was no way, quickly glanced at an ultrasound and said “yeah no way. plus youre young.” sent me for blood work..,.the bloodwork at least proved i wasnt lying about how much i was bleeding. i was so close to anemic, and my iron ferritin was so low it was at 7. i needed iron infusions. Anyway. a lot are jerks, a lot of specialists can just call themselves specialists. my sister did a ton of research & we went out of state. She liked their youtube videos & showing their surgeries & honesty & explanations & skill level. I found their social media on insta & i loved how they just believed women & seemed so kind. So we talked our parents into it, & went to Portland. They were amazing. I have no complaints on my surgery im 5 months post op. Im still baffled how they just were so kind & believed me right off the bat. Immediately asked if i thought adenomysis, the only doctor to do so. Found the spot on my rectum too that was causing me shooting butt pain. I was up and walking & showering myself 2 days after surgery & i feel so much better. Highly recommend them, or at least checking out their Instagram, they are making a lot of videos this month bc of Endo Awareness Month. Make sure you find a specialist that knows what they are doing, only does excision, not ablation. I also like the website/instagram iCareBetter, these specialists have shown thru their surgery videos they KNOW what they are talking about. Specialists in portland: Dr Shanti Mohling, Dr Nicholas Fogelson

I would look into Dr Shanti Mohling & her partner too Dr Fogelson. their instagrams & youtube videos showed me and my family that they really care and how skilled they were. Just as compassionate, if not more in person. Dr Shanti Mohling is the best doctor ive ever had & did amazing. Even showed me video of my surgery after. Like how skilled & confident do you have to be to be able to video your work & show the patient? My family and i are super impressed by it. I really dont have any regrets going to her, i only wish i couldve discovered her sooner.

Dr Shanti Mohling & her partner Dr Nicholas Fogelson. Id recommend watching their informative videos on their instagrams, & some of their surgeries or explanations are on youtube as well. My whole family is so happy with the entire experience & feel it was well worth the effort to travel there & see them. First time ive been validated & heard & their skill level knocked it out of the park.

i would like to suggest looking at Dr Shanti Mohling in Portland oregon’s instagram & youtube. i love the way she explains endo and surgeries and more. she shows her surgery videos and a few on youtube. (The endo specialist she works with, Dr Nicholas Fogelson, also has a great informative instagram and answers questions on youtube too.) I chose to fly out of the state to see her, and i was hoping she would be as kind and compassionate and SKILLED as her videos, and SHE WAS. she was amazing, hugged me, was so so kind and considerate. felt bad for me with all the pain i had, BELIEVED ME…. loved her work on my surgery, i could tell leaving the hospital how well she did. she went above and beyond. i dont have any regrets. (other than i wish i lived in that state and could see only her or couldve found her sooner lol) if anything, like i said check her vids out, might help with some choices or show you someone to compare other doctors with to see if they seem skilled or compassionate. And check her website/call to see if you can do a phone or zoom consultation at least. i feel like she gave me the best options & then heard me with what i wanted and helped make it happen.

mine was Stage 2 and it was about 4 hours…. and doesnt sound as complicated as yours will be. idk the specialist i saw and her partner were so skilled and confidant, im sure they would still preserve fertility while still excising the bowel and ureter area. (my specialist showed me video of the weird stretchy endo around my ureter area and how she took the time to carefully excise it…) I would suggest watching Dr Shanti Mohling (she was my surgeon in Portland) her instagram videos and a few youtube videos, and her partner Dr Nicholas Fogelson, his instagram and many youtube videos ….very educational, to me it proved how skilled they are, they confidently show their surgery videos and have been doing this for years so he even says that nothing is going to come as a surprise to him. At the very least check out their instagrams, and if u want check their website since it offers a free phone consult too..

I also had Dr Mohling (who works with Dr Fogelson) and i have no regrets going to her. i would literally only go to either of them. great experience, they are both actually like how they are on their instagrams, she was so so so kind and compassionate. they immediately believe you and i trust in their skill from their surgery videos. i watched my own surgery video and could see the level of care put into it. i also really liked the hospital they work with in portland, most on top of it hospital ive ever been to.

I had to travel out of the state for a true endo specialist. my sister did a ton of research and there is a lot of problematic stuff with n”ncys n””k. i cant say all of what my sister researched & the conclusions she came to but she really liked some specialists in portland oregon. i ended up checking out their social media, and i just really liked how they presented themselves, said and showed how they believed their patient’s pain & acknowledged the crazy gaslighting stuff other obgyn and other soecialists have said to patients. i liked how they showed videos of their actual surgeries and explained things. i ended up flying to another state like i said and choosing to see Dr Shanti Mohling (so check her instagram posts and vids, and a few youtube vids for yourself is my recommendation.) and i worried in the back of my head “what if she isnt as nice and compassionate as she seems on her posts?? what if she doesnt help me??” well she was so so so so nice even more than her posts. i have no regrets about seeing her, she believed me, took my research seriously and my symptoms, didnt mock me that i came prepared, gave me options, really took time to listen, hugged me, performed the exam and ultrasounds herself & showed me how i was showing more signs of pain when she touched in my left side and confirmed it really seemed like endo and adeno. she listened to what i wanted in surgery, went above and beyond for me, reassured my family that she was super careful (i was anemic from blood loss from my nonstop period and didnt want blood in surgery) so she treated and did the surgery as i was her own daughter (careful she means?? i know i typed that funny) found my family after surgery, showed them pictures of my endo confirmed. later showed me the video and explained different parts confirmed stage 2 endo. she truly was the best. So my recommendation again is to research a lot. look up reviews of the surgeons you look into (i found some horrible reviews of the “top” endo guy in my state…so glad i didnt go to him) At least watch Dr Shanti Mohling & her endo surgeon partner at their practice Dr Nicholas Fogelson instagrams and youtubes.

Its okay to cancel the surgery and to not go with that doctor. in fact its more than okay. doing a surgery is a lot to put your body thru, just for them to look around and say yep you got it, but not do anything about it. Another thing to consider is if they arent even skilled enough to excise the endo, they are very very likely to not know what different endo types look like and are more likely to say “i didnt see anything, you dont have it.” many have went to drs claiming to be endo soecialists and they said they dont have any endo, later to go to a real endo specialist and its confirmed. Really going with this doctor is a waste of time money and your health. I would like to suggest looking thru Dr Shanti Mohling’s instagram. i loved her compassion and explanations so much, on her insta and youtube, and her endo partner Dr Nicholas Fogelsons instagram too….that i flew out of state to see her. She was just as compassionate and awesome in person, actually Knew what she was talking about and had a plan. I felt super confidant in her doing my surgery that i was happy and giddy that morning. I had no anxiety and knew she would give it her best. she found stage 2 endo, worked hard at cutting it out, found my family in the hospital, showed them pictures of my surgery with explanations written down and hugged my sister who was crying that i finally got confirmation after 15 years. 3 days later on the follow up (which i was doing significantly great) i saw the video of my surgery and saw how much she found endo in parts that to an untrained eye (some parts i couldnt even tell looked like endo) she found. I hope you are able to cancel and do more research and find a good surgeon who cares about endo

i would suggest with a lot of research, a lot. endo is very much misunderstood, many gynos dont know the right stuff, updated research. even ones who claim to be endo specialists, arent and can gaslight you. I would recommend checking out Dr Shanti Mohling’s instagram, she is the endo specialist i really liked her compassion and knowledge of endo. her surgery videos seemed really skilled and i just loved that she believes her patients pain. (she has a few youtube videos too.) I would also check her endo working partner Dr Nicholas Fogelson’s instagram and he has a lot of youtube videos too, in depth surgery questions as well. They really know their stuff, and arent arrogant. I even flew out of state to see her, & she was amazing and went above and beyond to help me. I recovered well from her surgery, my family and i are really impressed. I have no regrets in the effort to go see her, so glad i didnt continue down my local route of being gaslit and saw some pretty scary reviews of the endo specialist from where i am.

i traveled out of state to Portland Oregon to see Dr Shanti Mohling. HIGHLY RECOMMEND. i have no regrets. I would 1000% recommend watching her videos and posts on her instagram (my sister did a ton of research and found her working partner Dr Fogelson’s youtube videos of his surgeries and q&a’s and then i checked his instagram posts too….so highly recommend watching his stuff too. and thats how i found her by checking their posts and their website. ) i really liked them both a lot based off their videos and explanations and how they just believe their patients, like you dont have to go on and on trying to convince them that you are in this much pain, only to be gaslit like so many doctors do. they totally believe your pain and seemed to really know their stuff. I really liked how compassionate she seemed in her videos too and so i booked a ticket and a initial visit and exam (you can totally call and ask for a free phone call consult or zoom i think on their website) I was a little nervous as i am before all doctor appointments now, but every video of theirs had put me at ease and i just hoped she would be as compassionate and great as she seemed on her posts. well, she WAS! she went above and beyond for me, believed me right away, was on the same page, didnt belittle me for having come super prepared. she did what she could to help me and catered to my preferences and what i actually wanted. she hugged me. she felt so bad i was in an insane amount of pain during the exam (and then told me stuff i didnt know or realize. like “do you realize you are in way more pain when i feel on your left side? i bet theres more endo on your left.” and then she showed me, and i was in so much i didnt even put that together but she was right.) she was amazing what she could tell even before surgery. I felt super safe in her hands. i was so confident and happy with her as my surgeon i wasnt even nervous the morning of and was giddy and excited to finally have answers and a hysterectomy after 15 years of being gaslit. After my surgery, she found my family in the hospital, showed them printed out pictures of the endo she found. stage 2. walked them thru it, and hugged my crying sister who was happy for me to have answers and get excision surgery. I saw the video of my surgery a few days later on follow up and there were a few spots i could clearly tell were endo, and there were areas she was explaining were endo that i couldnt tell (endo is so tricky you really need a true expert!!) like around my ureter area, the skin was almost sticking to the ureter and being weird and she was like im certain that was endo bc the skin(flesh ?? idk the words) shouldnt have felt like that. and she was going on her expertise of the robot. with how bad my health is and how weak i am in general, and then even moreso because i was bleeding for 8 months on birth control because of adenomyosis…..im shocked at how well i was doing after surgery. like the next day….i was walking around. the next day i showered and i felt fine, no need to even use the shower chair. (i will say on day 6 is when it hit me and i had a bad day of body aches. ….and with my other chronic health conditions i have had to take it super easy and rested a ton this year but i also have a sleeping disorder….sooooooo with what i can tell based on the surgery and my incision recovery and how i wasnt in pain in the surgery spots WOW im still impressed with her. ) i hope what i wrote made sense. I of course am a believer that endo comes back, and i believe that doctors even experts can only do so much, but i think she did the best that anyone could have done, im super happy with the surgery. I would go back to see her again. another thing to add, i love the hospital too that Dr Mohling and Fogelson work out of, in portland. nicest cleanest hospital, best staff like insanely nice nurses and helpful people. most on top of it hospital. it was a great bonus because i just cared about having her as my surgeon but the hospital was so kind i would want to have any surgery there. i would never say that about any of my local hospitals or drs. If anything, check her insta and youtube, and his if you can. Schedule a free consult over phone or zoom. its worth it, even to compare if you are debating over someone else.

My surgeon was a fellow at the women’s centre in Vancouver. I had two surgeries with her and she keeps missing disease. The women’s centre in Vancouver will not let you see another doctor there if you are already seeing one of their doctors or one of their fellows. I’m traveling to have surgery with Dr. Fogelson in Oregon now.

Grocery list post-op with bowel involvement? Grocery list post-op with bowel involvement? My mom and I are travelling from Canada to Portland so I can have excision surgery by Dr. Fogelson. I’m trying to come up with a good grocery list for when we land. Our hotel room thankfully has a kitchen. I’ve had two excision surgeries before, the second one with some bowel involvement (3cm nodule was removed) and I had a hard time with post op constipation. Dr. Fogelson suspects I may need a bowel resection. I really hope I get away with just shaving but in any case, I’d love to know which foods to eat and which to steer away from.

Seems like it! I saw Nancy criticize one of iCareBetter’s posts today too 🤣 Yeah I unfortunately tried to get by with my crappy surgeon here in Canada with two surgeries but finally went to Dr Fogelson in October. I really regret that I didn’t go sooner but I also didn’t know everything that I know now about expertise. Glad I am feeling a lot better now. Dr Fogelson was amazing.

Actual sciatic nerve endometriosis is very rare. Usually symptoms are from vascular compression of the sciatic nerve. I highly recommend [this video](https://youtu.be/KoYVT8vQmBk?si=9JdWPC5ZGFUZ1MKy) and all other resources from Dr Nicholas Fogelson who is a proficient endometriosis surgeon who specializes in neuropelveology. Dr Marc Possover and Dr Horace Roman are also very good resources.

It was a lot! I wouldn’t have been able to go without the GoFundMe and the donation from my grandma after she sold her house. I am honestly very lucky. The hospital Dr. Fogelson uses (Good Samaritan) has financial assistance based on income. I applied and was awarded 75% covered by the hospital which meant I was only responsible for 25%. I was supposed that I qualified as a Canadian but I talked to several people at the hospital and they said there were no rules against it. Here is the [link](https://www.legacyhealth.org/Patients-and-Visitors/paying-for-your-care/payment-plans-and-assistance) for financial assistance. The GoFundMe is free to do but they do take a portion of the donations. My mum and I posted it all over social media. The fellow from BC Women’s found stage four endometriosis. I had two surgeries with them. The first they weren’t very prepared for because they didn’t believe I had endometriosis. I ended up having stage four and they weren’t equipped to take out my bowel endometriosis so they left it behind. It continued to affect my quality of life so they went in again two years later specifically for the bowel endometriosis and they also excised more endometriosis that wasn’t properly removed the first time. This is what they did/found the first time: Laparoscopic excision of endometriosis of: - Superficial bladder peritoneum - Bilateral endometriomas < 1 cm, drained and ablated - Bilateral ovarian adhesions to sidewall and uterus - Heavy fibrosis of bilateral uterosacral ligaments - Partial cul de sac obliteration with rectosigmoid adhesion to posterior uterus and cervix (NOT REMOVED) - Bilateral ureters - Ovarian fossa And the second one: Laparoscopic excision of endometriosis of: - Complete cul de sac obliteration with bowel dissection, especially on left lower segment of uterus and cervix - Bilateral uterosacral ligaments 3 cm - Bilateral ureters - Pararectal nodule 3 cm The care in the US was much better. I felt I was in good hands. Pain management was also so much better. I saw your earlier posts where they said you have stage one with DIE? That doesn’t even make sense. If you have DIE, you have to be at least stage three. 🙃 I’m sorry - it’s so bad here for endo care.

It truly is worth the extra hassle/money for a specialist. I had 2 surgeries with a regular obgyn and I am now 5 months out from my 3rd surgery which was with Dr. Fogelson. The improvement is remarkable. I had almost no symptom relief from the first 2 and I’m frustrated that I had to pay so much money and put my body through recovery for nothing.

Look up the endo theories/treatment beliefs from David Redwine and Nicholas Fogelson - they don’t think that BCP treats anything other than symptoms. I tend to go with these lines of thinking because I had successful excision surgery with Fogelson and I trust his judgment/analysis.

I don't think he accepts insurance per se, but I was very lucky in that I live in his city and my insurance covered a hospital where he has operating privileges - I had to pay his fees but luckily the operating room/recovery room was 80% covered. I know there are also tricks they can try like applying for gap exceptions. If you call or email their office they are very helpful. I had two previous surgeries to deal with a mucinous cystadenoma (ovarian cyst) and the garden-variety OB-GYN that did them barely even mentioned that I had endometriosis, if the pathology for the cyst hadn't come back indicative of endo as well, I don't think she would have diagnosed me! She was the 3rd doctor I'd seen trying to deal with the increasingly debilitating pain and I felt fortunate that she even acknowledged there was a problem but that still wasn't enough. All this to say - I fully endorse surgery with Dr. Fogelson, he knows what he is doing and clearly takes a keen clinical interest in the disease and so is leaps & bounds more informed than the majority of gynecological surgeons. After the prior surgeon said I had no endo lesions (ok but so why did the pathology report have it) and I felt like I must be making it all up in my head like an idiot, Dr. Fogelson excised my entire pelvic peritoneum because it was full of endo, my left ovary, and took a nodule off one of my nerve plexuses - that surgery affirmed the reality of my experiences and gave me my life back - for example, I recently went camping during my period, something that would have been unimaginable before. (Apologies for the novel-length comment!)

icarebetter.com is a blind peer reviewed list of endo surgeons. It is small but growing, and this resource is probably the one I would trust the most. I do realize that many of these surgeons may not be in-network for most or even any people, but I had surgery with Dr. Fogelson and I would trust him 1000x over.

I had excision surgery with Dr. Fogelson (who shares a practice with Dr. Mohling) in 2019 and I experienced a great deal of relief and he didn't suggest hormonal suppression afterward. Recently I have been experiencing increasing pain with menstruation and returned to Dr. Fogelson where adenomyosis was visualised in my uterus via ultrasound. (It wasn't apparent on my imaging in 2018/2019, because I would have just elected for a hysterectomy during the excision. I also think it had to have grown/progressed over this time because I did have 2 years of periods with greatly reduced pain that was manageable with ibuprofen.) I feel confident returning to Dr. Fogelson for a hysterectomy and I would be surprised if there was endo that had grown back because even with the return of painful periods, I'm not experiencing the constant, chronic pain that persisted throughout the month before my excision surgery. I only "know" of Dr. Mohling through her IG page, but I like what I've seen there and I trust Dr. Fogelson's judgement - if he welcomed her into his practice, he concurs with her methods/understanding of the disease. Also, these doctors are encouraging of anyone who wants to have surgery to increase fertility, they see people for that purpose all the time and I can't imagine they would push hormonal suppression if you let them know of your treatment goals.

Hi! I can’t tell you how it’s going to work out, but I just wanted to let you know that I’m in my thirties, in nursing school, and I’m getting a hysterectomy at the end of December. Luckily my school has a few weeks off for winter break so I’ll be about 5.5 weeks recovered when I go back to class/clinicals. Your plan of doing it over summer break sounds like a good one! I had excision surgery for endo and felt so much better but it turns out I have adenomyosis too, so I completely understand just being done and wanting to get it out. I am married, but I don’t have children, so I understand how people freak out when you talk about hysterectomy. Just make sure your doctor knows what they’re doing, someone who does a lot of these surgeries and also someone with endo experience would be good just in case they find it while they’re operating. Dr. Nicholas Fogelson and Dr. Shanti Mohling have very informative instagram accounts, they can be a good resource for learning how to vet your doctor.

I disagree with everyone about the open being better - check out Dr. Fogelson's [website](https://www.nwendometriosis.com/hysterectomyservices) or his thoughts on open vs. robotic or laparoscopic. He also discusses some of this on the episode of the Hello Uterus podcast that he's on. I highly trust his take on all things endo and hysterectomy, and his fellowship is also in gynecologic oncology. In almost all cases, including what you're describing, there's no need for an open, although I realize it's complicated if you're not thinking of a second opinion. The surgeon can actually see tissues much better with laparoscopic/robotic than with open. Open, their eyes, with or without magnification are much further from the tissues than the amazing zoom they can get with the scope/robot.

The problem is that doctors doing an OB/GYN residency are not financially incentivized to spend more money and time specializing in things like minimally invasive gynecologic surgery or endometriosis. This has led to a very small number of physicians that do go on to complete extra training that qualifies them to successfully identify and treat endometriosis. For every purposefully shitty doctor, there are plenty of MDs that just took a look at their mounting student loans and exhaustion from never-ending schooling and didn't try to match into yet another fellowship. Listen to episode 29 of the Hello Uterus podcast with guest Dr. Nicholas Fogelson, he explains it quite well.

2nd Excision Surgery - Still in pain 2nd Excision Surgery - Still in pain Hi ladies! I had my first excision surgery with a Nook doctor in October - Dr. Atashroo in IL. I still had major debilitating pelvic pain. Tried everything. See my post history, but the pain made me suicidal. Anyways I had my second excision surgery last week. I was feeling ok and had incision pain. Today it’s been as bad as before the surgery. I had my right ovary, right Fallopian tube, and a lot more endo taken out. She noted that more endo grew all over my pelvic cavity again, in a 7 month period. Can anyone answer any of the following questions: -Has anyone had endo grow super fast after excision surgery? -Has anyone had an ovary taken out? What was the recovery like/timeline? -Do I need to be patient and wait till I’m healed or should I see Dr. Arrington in the CEC? *He noted that I have DIE and was interested in my case, but I couldn’t raise money before he moved to the CEC. Thanks for reading this! I hate this stupid disease. I just want relief! I finally started a new job and they were super supportive. I don’t want to take more time off.

I am ending up having surgery with Dr. Furr, in Chattanooga. The surgeon fee was kinda ridiculous. Total was going to be $15,000. And they weren’t willing to budge. I asked Dr. Arrington if it’s possible for a pro bono case. Didn’t even respond. Yeaaaaaa I’m glad I found Dr. Furr. He is going to be thorough and take his time. Thanks for the suggestion earlier to avoid him.

Travel/Flying tips after excision? Travel/Flying tips after excision? I’m going to be traveling to Chattanooga, TN to see Dr. Furr, next Monday. I am having excision, an appendectomy, and a PSN. He is checking my diaphragm, bladder, and I’m possibly having a bowel resection. With that being said, I am staying in TN the day after, and flying back to Colorado. Surgery is on Tuesday, and flying back on Thursday. I will be by myself for the whole thing, including taking an Uber/shuttle to either Nashville or Atlanta which is the closest airports (2 hrs away). Has anyone taken a flight so soon after surgery? Has anyone done this alone? My first two excision surgeries, I was home within an hour. I usually have everything setup in the living room, including food and GasEx. I also had help with getting up. Now it’s just me in a hotel room and then flying back. Not sure what to expect. Thanks! 💛💛 Update: Thank you all for your suggestions!! The surgery ended up being 7 hours! Dr. Furr is keeping me in the hospital till Thursday. My boyfriend managed to get off work and travel with me on Thursday. Phew!! Anyways, thank you again endo warriors!

Dr. Furr suspended my left ovary to my abdominal wall with a dissolvable suture. He mentioned that my pelvic area and floor were raw and inflamed due to all the endo and adhesions. Apparently this would help the healing process and also prevent adhesions. It might be the same deal with you. Hope you are feeling better after the long drive!!

Fair enough. I saw Atashroo and she was the first doctor who believed I had endo. But she did two excisions and Lupron - it didn’t help. She couldn’t help the deep infiltrating endo. But Northshore has a great pain management clinic. Diakos didn’t believe I had endo and she doesn’t believe in pain management. My 3rd excision was with Dr. Furr in Chattanooga, TN. It was the best decision I’ve made so far.

Hi there. So I had deep infiltrating endo in my right pelvic nerves. I had two excision surgeries (plus a plethora of treatments) and yet it remained. It was never seen on an ultrasound or MRI. I was told it was nothing. I could not walk at all, I finally found a Nook surgeon who had more than 300+ cases of deep infiltrating excision under his belt. Just had my surgery last month. I can literally sit in my computer chair for more than 1+ hours. I am not on any pain meds anymore. I have my life back. If they find nothing, don’t give up!!! Your pain is real!!! Please see a specialist who can operate on deep infiltrating. Regular obgyns are not equipped to recognize it. Even some Nook doctors can’t take it out. Join Nancy’s Nook or Endometropolis on Facebook. Or go up r / endo and they have a list on the side map. If you are in the US, I recommend Dr. Robert Furr in Chattanooga, TN. This man has changed my life and I traveled from CO to get the surgery. So remember, don’t pay attention to the ultrasound. Don’t let any doctor minimize your pain.

Abnormal bleeding - First period after excision (3rd excision surgery) Abnormal bleeding - First period after excision (3rd excision surgery) I had my third excision surgery last month. I expected the first period to be horrible, as I’ve already been through this. My first period, after my other two excisions, was my normal heavy bleeding but nothing abnormal. But I woke up this morning to soaking an overnight heavy pad (top to bottom), soaking my underwear (the entire thing!), thick sweatpants, two sheets, a mattress cover, and the mattress! What the hell! I’ve been soaking a heavy pad every hour. Pain is bad but my normal pain before the excision. My chronic 8/10 pain. My periods are usually heavy and taking ibuprofen helps slows the bleeding down(I take it to help the bleeding it doesn’t touch the pain). Took some through out the day and it hasn’t helped. The only time I went to the hospital for abnormal heavy bleeding was due to Lupron. Right now, I’m trying to stay hydrated but I’m weak. Has anyone dealt with this after excision? I’m hoping I don’t need to go to the ER because frankly I’m tired of hospitals. Not sure if I should message my surgeon since he is in another state. Does anything help slow down bleeding besides ibuprofen? Surgery details: Had excision with Dr. Furr in TN. I live in CO. Had deep infiltrating endo removed from my sciatic and hypogastric nerves and right pelvic area, had a PSN, appendectomy, adhesions removed, more endo removed from pelvic floor, endometriomas removed, bowel and bladder separated from abdominal wall and adhesions, and only remaining left ovary suspended with surgical glue. Thanks ladies!

Hi all. Sorry for the late update. I came home from the ER a few hours ago. They said I lost a lot but my body is making it up, so phew!! My iron was low and I was dehydrated so I had fluids and an iron infusion. They gave me pain meds and ultimately said it’s menorrhagia and talk to an obgyn. I’m really confused as to why this happened. I’ve always had heavy periods but not like this. I’ll bring it up to Dr Furr on my post op. I’m really suspecting adenomyosis which I thought a PSN would help. 🤷🏽‍♀️

If you can travel to Chattanooga, TN, I recommend Dr. Robert Furr. He’s a Nook surgeon but he is so thorough. He checks the diaphragm and all the way down. He got rid of all my deep infiltrating endo. He is so nice and awesome. The office also helped me with my insurance and let me pay a fraction to get surgery scheduled. Well worth traveling from Denver to Chattanooga.

I had a consult with Dr. Fogleson and he was awesome and honest. I didn’t have surgery with him as he was honest about my case, and how I should see Dr. Furr or the CEC since I had DIE on several nerves. Edit: Good luck!! Definitely call him as he was the one who answered the phone and gave clear expectations which I liked.

2nd Excision Surgery - Still in pain 2nd Excision Surgery - Still in pain Hi ladies! I had my first excision surgery with a Nook doctor in October - Dr. Atashroo in IL. I still had major debilitating pelvic pain. Tried everything. See my post history, but the pain made me suicidal. Anyways I had my second excision surgery last week. I was feeling ok and had incision pain. Today it’s been as bad as before the surgery. I had my right ovary, right Fallopian tube, and a lot more endo taken out. She noted that more endo grew all over my pelvic cavity again, in a 7 month period. Can anyone answer any of the following questions: -Has anyone had endo grow super fast after excision surgery? -Has anyone had an ovary taken out? What was the recovery like/timeline? -Do I need to be patient and wait till I’m healed or should I see Dr. Arrington in the CEC? *He noted that I have DIE and was interested in my case, but I couldn’t raise money before he moved to the CEC. Thanks for reading this! I hate this stupid disease. I just want relief! I finally started a new job and they were super supportive. I don’t want to take more time off.

I am ending up having surgery with Dr. Furr, in Chattanooga. The surgeon fee was kinda ridiculous. Total was going to be $15,000. And they weren’t willing to budge. I asked Dr. Arrington if it’s possible for a pro bono case. Didn’t even respond. Yeaaaaaa I’m glad I found Dr. Furr. He is going to be thorough and take his time. Thanks for the suggestion earlier to avoid him.

Travel/Flying tips after excision? Travel/Flying tips after excision? I’m going to be traveling to Chattanooga, TN to see Dr. Furr, next Monday. I am having excision, an appendectomy, and a PSN. He is checking my diaphragm, bladder, and I’m possibly having a bowel resection. With that being said, I am staying in TN the day after, and flying back to Colorado. Surgery is on Tuesday, and flying back on Thursday. I will be by myself for the whole thing, including taking an Uber/shuttle to either Nashville or Atlanta which is the closest airports (2 hrs away). Has anyone taken a flight so soon after surgery? Has anyone done this alone? My first two excision surgeries, I was home within an hour. I usually have everything setup in the living room, including food and GasEx. I also had help with getting up. Now it’s just me in a hotel room and then flying back. Not sure what to expect. Thanks! 💛💛 Update: Thank you all for your suggestions!! The surgery ended up being 7 hours! Dr. Furr is keeping me in the hospital till Thursday. My boyfriend managed to get off work and travel with me on Thursday. Phew!! Anyways, thank you again endo warriors!

Dr. Furr suspended my left ovary to my abdominal wall with a dissolvable suture. He mentioned that my pelvic area and floor were raw and inflamed due to all the endo and adhesions. Apparently this would help the healing process and also prevent adhesions. It might be the same deal with you. Hope you are feeling better after the long drive!!

Fair enough. I saw Atashroo and she was the first doctor who believed I had endo. But she did two excisions and Lupron - it didn’t help. She couldn’t help the deep infiltrating endo. But Northshore has a great pain management clinic. Diakos didn’t believe I had endo and she doesn’t believe in pain management. My 3rd excision was with Dr. Furr in Chattanooga, TN. It was the best decision I’ve made so far.

Hi there. So I had deep infiltrating endo in my right pelvic nerves. I had two excision surgeries (plus a plethora of treatments) and yet it remained. It was never seen on an ultrasound or MRI. I was told it was nothing. I could not walk at all, I finally found a Nook surgeon who had more than 300+ cases of deep infiltrating excision under his belt. Just had my surgery last month. I can literally sit in my computer chair for more than 1+ hours. I am not on any pain meds anymore. I have my life back. If they find nothing, don’t give up!!! Your pain is real!!! Please see a specialist who can operate on deep infiltrating. Regular obgyns are not equipped to recognize it. Even some Nook doctors can’t take it out. Join Nancy’s Nook or Endometropolis on Facebook. Or go up r / endo and they have a list on the side map. If you are in the US, I recommend Dr. Robert Furr in Chattanooga, TN. This man has changed my life and I traveled from CO to get the surgery. So remember, don’t pay attention to the ultrasound. Don’t let any doctor minimize your pain.

Abnormal bleeding - First period after excision (3rd excision surgery) Abnormal bleeding - First period after excision (3rd excision surgery) I had my third excision surgery last month. I expected the first period to be horrible, as I’ve already been through this. My first period, after my other two excisions, was my normal heavy bleeding but nothing abnormal. But I woke up this morning to soaking an overnight heavy pad (top to bottom), soaking my underwear (the entire thing!), thick sweatpants, two sheets, a mattress cover, and the mattress! What the hell! I’ve been soaking a heavy pad every hour. Pain is bad but my normal pain before the excision. My chronic 8/10 pain. My periods are usually heavy and taking ibuprofen helps slows the bleeding down(I take it to help the bleeding it doesn’t touch the pain). Took some through out the day and it hasn’t helped. The only time I went to the hospital for abnormal heavy bleeding was due to Lupron. Right now, I’m trying to stay hydrated but I’m weak. Has anyone dealt with this after excision? I’m hoping I don’t need to go to the ER because frankly I’m tired of hospitals. Not sure if I should message my surgeon since he is in another state. Does anything help slow down bleeding besides ibuprofen? Surgery details: Had excision with Dr. Furr in TN. I live in CO. Had deep infiltrating endo removed from my sciatic and hypogastric nerves and right pelvic area, had a PSN, appendectomy, adhesions removed, more endo removed from pelvic floor, endometriomas removed, bowel and bladder separated from abdominal wall and adhesions, and only remaining left ovary suspended with surgical glue. Thanks ladies!

Hi all. Sorry for the late update. I came home from the ER a few hours ago. They said I lost a lot but my body is making it up, so phew!! My iron was low and I was dehydrated so I had fluids and an iron infusion. They gave me pain meds and ultimately said it’s menorrhagia and talk to an obgyn. I’m really confused as to why this happened. I’ve always had heavy periods but not like this. I’ll bring it up to Dr Furr on my post op. I’m really suspecting adenomyosis which I thought a PSN would help. 🤷🏽‍♀️

If you can travel to Chattanooga, TN, I recommend Dr. Robert Furr. He’s a Nook surgeon but he is so thorough. He checks the diaphragm and all the way down. He got rid of all my deep infiltrating endo. He is so nice and awesome. The office also helped me with my insurance and let me pay a fraction to get surgery scheduled. Well worth traveling from Denver to Chattanooga.

I had a consult with Dr. Fogleson and he was awesome and honest. I didn’t have surgery with him as he was honest about my case, and how I should see Dr. Furr or the CEC since I had DIE on several nerves. Edit: Good luck!! Definitely call him as he was the one who answered the phone and gave clear expectations which I liked.

Wow!! I am so happy for you, that is incredible to hear! ✨🎉 To be pain free is incredibly liberating and everything! If you don’t mind me asking, what did the cost turn out to be, as I’ve heard it ranges from 11k-21k. This will be my first laparoscopy but based on a pelvic floor PT, they believe bowel might be involved and I want to do it right the first time, hence my list narrowed down to Dr. Sinervo or Dr. Fogelson in Oregon. If you’re open to sharing your experience or tips, I would love to hear! How long was the process from your initial appointment to scheduling surgery? I am scheduled for in-person with Dr. Sinervo in December but I’m hoping to get a teletherapy either next month or October.

What specific labs and imaging do you suggest for meeting with Dr. Sinervo / excision specialist? What specific labs and imaging do you suggest for meeting with Dr. Sinervo / excision specialist? Hello, I am looking to have my first diagnostic laparoscopy done, but want to have as much in my file to help my appointment with the excision specialist. What specific blood tests that were ordered for you before, or after your appointments with your surgeon prior to the laparoscopy? I have had an ultrasound done, CA 125 blood test, and have a bunch of other labs, but unsure which ones are needed. I know endo can only be confirmed by lap, but wanting to know for those that got an MRI done, was an MRI of your uterus and bowel ordered, or is an order for your uterus cover the bowels? I am scheduled to see Dr. Sinervo and Dr. Fogelson in Portland, OR). If anyone wants to share their experience, good or bad with these doctors I would love to hear! Thank you!

What was your experience with Dr. Nicholas Fogelson or Dr. Nicholas Kongoasa? What was your experience with Dr. Nicholas Fogelson or Dr. Nicholas Kongoasa? How was your surgery experience (pre and post), and how are you feeling afterwards? Would you recommend them again after having surgery? I have narrowed my choice down to these two and trying to make my decision. Thank you for your time and help!

Dr. Fogelson - I had surgery with him and cannot recommend him enough, he is absolutely incredible and so highly skilled. His speciality in neuropelveology (that Dr. Mohling does not have) was also a huge plus for me. Most other Expert Endo Excision surgeons are out of network and charge up to $21k (Dr. Sinervo at CEC) and Dr. Fogelson has shared how he doesn't feel it is ethical to charge that much and I greatly appreciate how he retains a law firm to help with out of network costs. None of the other practices I interviewed (a handful of them) offered this at no cost to their patient.

Having my first visit with Dr Fogelson in Portland Having my first visit with Dr Fogelson in Portland I’m finally seeing an endo specialist and I’m excited and nervous! Aside from yearly gyn visits, I haven’t *really* needed to see anyone specifically for endo since 2015: I’ve been on continuous birth control pills, haven’t had much pain thanks to lack of periods, etc. but within the last year I’ve had weird fullness on my right side. Sex now gives me cramps, not just pain during. I’ve had a hard time with systemic inflammation, which may or may not be related, but I’m hoping to ask him about it.. I’m having mixed feelings like maybe I don’t need to see a specialist and I’m not worth the money. Does anyone have experience with his practice? Tips for my first appointment? Words of encouragement? Hah I mostly wanted to post because few people in my life really understand.

That sounds like a very upsetting appointment, I’m sorry he seemed to shrug you off so easily. As someone who has done pelvic PT, I highly recommend it. It gave me a good couple years of relief along with continuous birth control; I hope you’re able to get something scheduled and give it a try. I would call them if they have not yet reached out to you. And if you still have pain it may be worth seeing a different physician or perhaps Dr Fogelson’s partner (I don’t know her name off the top of my head) but she might be more of a resource. All this is just my opinion though, I hope you can find what’s best for you and get answers.

Just met with Dr Fogelson on Wednesday and plan to move forward with excision surgery and hysterectomy plus chucking my cervix. So nervous. He listened and validated my pain, noticing a deep lesion from photos taken during my 2010 laparoscopy. It’s been a lot to take in. I hope your visit with either doctor goes well!

Yeah! I totally spaced that we were discussing Dr Fogelson on this thread 😅 - you’ll get to watch it all 🙌 and if you bring a hard drive he’ll give you a copy. Yes, I applied with OR Leave. I had mailed in my paperwork since the office gives you documents to send so I’m not sure if that is affecting the review time, or the holidays.. Likely both 😆 I wish I was more prepared for my PO, I totally spaced to ask about taking baths. He said I was clear for “everything but penetrative sex and lifting” so maybe? I was just so excited to know where he found endo haha

I’m so sorry you are going through all of this. I have stage IV as well as IC and adeno, this disease is brutal and I cannot imagine going through the grief of losing a loved one at the same time. You are incredibly strong I hope you know that. You said OHSU in your post so I assume you’re in PDX or near it like me, have you heard of Northwest Endometriosis and Pelvic Surgery? Dr Nicholas Fogelson there is a specialist in endometriosis surgery and will do free consults in person or on the phone. He helped change my life. If you have any questions please feel free to DM me!

If you are in Portland, Oregon you should try contacting Dr. Nick Fogelson at Northwest Endometriosis and Pelvic Surgery. He is an endo specialist and is compassionate. He does free phone consultations and I’m very glad I found him. There is another endo specialist at his clinic as well, Dr Shanti Mohling. Fogelson completely supports my want for a hysterectomy when I am ready.

Awesome! If I were canadian I would want to see him for sure! I find the work he is doing to be so hopeful! I am in Oregon so I've got the benefit of going to OHSU for their endometriosis imaging (and actually they have the only MRI machine in the state I can get in due to metal implants in my head). I'm being seen by Dr Fogelson at this point; he is super compassionate and gave me some info on recognizing endo on an MRI by reviewing my imaging with me and showing what my bowel looks like where the endo is compared to where the wall is smooth.

I’ll be honest with you, I had an awful experience with Dr Ecker. Everyone says she is a capable surgeon. And I believe them, but she was so freaking rude, didn’t explain my diseases to me (I also have fibroids) and didn’t explain WHY I needed a hysterectomy. And I didn’t want a hysterectomy so I wasted precious months getting more opinions. If you need to stay at OHSU you should get a second opinion from Dr Wong. She is the one who ordered MRI’s for me based on my ultrasounds. Very good at reviewing imaging with you, explaining things. I will say I recently got a 5th opinion from Dr foegelson outside of OHSU and even though he is not in network I am moving forward with surgery with him and his referred colorectal surgeon. I feel like the doctors at OHSU were telling me what was going to happen. With dr fogelson it’s more of a conversation and the various aspects of the surgery are options. I trust both he and Dr kaminsky (colorectal surgeon at legacy with a ton of endo experience) to take into consideration my health goals and do what’s right for the best outcome while I’m under (i have been struggling with colitis at the same time as endo on my rectum sobits a luttle more complicated).

The people I know who have not had a recurrence are not hanging out in endometriosis spaces. I have a friend who had surgery with dr fogelson and she is doing great. I’m having my excision with him in September and will probably be leaving this sub soon. I feel like… I totally get women being in pain but all the endo groups I’m in are a barrage of different levels of women expressing pain, anger and frustration. I’ve left the endo spaces multiple times already when I feel like it’s just too much. Once I’m better I do not plan to continue participating in these spaces.