Hey I'm sorry to hear your troubles.. I know it's hard to deal with.. I'm in the same boat.. I'm at a loss with myself. I don't know what to do.. so I'm seeking out someone to talk to.. I've been reading a lot about endo stories and none seem to match mine... but yours kind of did. One Ob strongly believes I have endo, my PA wasn't sure if I have it, she told me to explore my options.. so I did, I went to another OB and she said it's possible I could but I don't have "all the symptoms" so she wasn't sure either. She said the only way I will know is if I get the lap surgery. (Which I'm trying to avoid as much as possible) so again idk if I should get surgery bc these doctors don't know if I have it and I don't want to get surgery done if it's not necessary. I've had many pelvic exams, several Pap smears. 1 ultra sound. STD blood tests. And a CBC blood test, they didn't find anything abnormal with me. But the pain still persists. Hasn't gotten any better or worse. My family doctor told me to not get surgery and just wait on it.... I don't feel like I'm taken seriously.. I don't feel like their putting much effort into trying to help me. And the pain is concerning me, it started out as a small sharp pain in my lower left abdominal area near my ovary/fallopian tube. This was in February earlier this year. A couple months later the pain and symptoms progressed. The pain isn't sharp, now it just feels more inflamed and hurts. Not to the extreme. Just moderate. It hurts more when I press on it.!It hurts through the month I do have days where it doesn't . But usually a week before my period the pain is stronger. The day my period starts it's brown for about half the day then it becomes heavy for the first 2-3 days. (Mine never comes on the same day each month it's usually a couple days off and lasts 6 days) but with the 2-3 days of heavy bleeding that's when it's the most painful and these symptoms only kick in around those days, cramping, pretty bad. Avil doesn't help one bit! I can' get up and move around but I prefer to lay down. I can somehow feel the pain going down my legs and reaching my toes. And also, this is going to sound gross but I really need to know if anyone has the same symptoms I'm having... but I also feel like my clitrious is being squeezed and pulled. And it gets super tender. I also have An issue with sex. Endo is killing my sex drive, and it's painful during intercourse. Only through deep penetration. The pain is the worst I've ever experienced. The pain is deep... and feels like a crampy aching pain. When I'm not careful with intercourse the pain usually lasts 10 to 15 minutes afterwards then it stops and I feel fine. I've mentioned all of this to my doctor and still they all seem to think it's not a concern. Besides one Ob that feels pretty positive I have it, he wanted me to get surgery asap. But everyone keeps telling me to wait and explore my options. And I have, but now it's up to me.. what I want to do. Well, anxiety really kicks in. I'm terrified of doctors , surgery, etc. it's not (white coat syndrome) believe me I take anxiety to the next level when it comes to medical stuff.. mainly I hate knowing there's something wrong with me... I keep thinking, what if it's severe? What if it's something serious? What if I'm going to die? What if they can't fix me? What if it's not endo, what if it's something worse? So many what ifs in my head and it's haunting me day and night constantly... it makes me stressed, sad, confused, deformed... I'm really at the point where I think I need to suck it up and get surgery so at least I'll know why I'm having pain on my lower left abdominal area. I feel like the longer I wait on it The worse it's going to get. And I want to have babies someday... I want to experience pregnancy.. I'm only 20 years old.... I just want to do what I can to know if this is what I have, how I can stop the progression, and how to manage the pain :( the pain is the main reason I keep thinking about it.

Sorry I got a little carried away... I haven't deeply talked about this yet...

Hi Jess55,

Honestly, I don't care that you got carried away. I'm sooooo sorry that you are going through this and I'm really thankful that you wrote to me. It is kind of nice to know there is someone out there that understands what this feels like because it feels like no one else does. My pain is a lot like yours. At it's worst it is a stabbing pain but usually it is a constant ache. It gets really really angry when I press on it. Have you noticed if laying in certain positions makes yours better or worse? I have noticed that lying on my stomach and side is a no no.

On Friday my primary care's office sent me for a stat ultrasound to check my ovary but everything came back normal. I think that is the worst part. I think the pain would be far more manageable if I knew what was causing it. I have an appointment with my primary care doctor today to discuss possible next steps. My GYN is awesome but not very helpful. She takes more of a "wait and see" approach which I hate. It makes me feel helpless. She told me the same thing that your doctors told you. A lap surgery is the only way to diagnose endo but she said the treatment is still oral contraceptives (which is NOT what I have read on the internet). I'm starting to lean toward surgery as well since laps are noninvasive "bandaid" surgeries but I still don't want to go through it for no reason. What I'm really afraid of is going through the surgery and them still not finding anything. That thought truly terrifies me. I empathize a lot with your fears. I think about it being something scary and dangerous that is not being found. I think about it possibly killing me. What helps me with those thoughts is thinking that something scary like cancer would be easier to find don't you think? I am starting to appreciate the elimination of possibilities even though it is so frustrating not to find and answer. There are only so many organs in your lower left quadrant and its your ovaries and the descending colon. Do you have any bowel symptoms? Diarrhea? Blood in stool? Sometimes pooping seems to push on the area of pain but it does not seem to be the cause so I don't think that I do. My pain is also very superficial and seemingly close to the surface of my abdominal wall. Is that what yours is like?

I haven't tried having sex with the pain. I'm terrified of sex. It's hard though because I'm afraid that my boyfriend doesn't understand. I'm afraid he is going to leave me because of this. :(. We've been together for 2.5 years and we have been through so much. I contracted HPV from him and it has wreaked havoc on my health and mental state in general. Then to get this on top of it is really hard. I feel stressed, sad, confused, deformed a just like you

I definitely hear you about having anxiety when it comes to doctors and how it feels to not be taken seriously. It's the worst. Another thing I don't think a lot of doctors don't understand is that when they take the "wait and see" approach, the waiting is much different on our end. By the time the pain intensifies it might be two weeks later until you can see your doctor. It is a lot of pain and suffering that I don't think they consider. You grow up thinking doctors are heroes and they can fix anything but you never imagine that they will encounter something that they can't figure out. From what I've read, lap surgeries are very effective at managing endo and I have read a lot of stories about women who got pregnant the month after having their endo treated through a surgery so I think there is still hope for you :). I'm 29, almost 30 and I'm sooooo sorry that you are having to deal with all of this at such a young age. Please know that I'm hear for you and I understand. This issue is so isolating and no one understands. If you need someone to talk to please keep messaging me.

Thank you for your reply! You have no idea how tremendous it is to be able to let my feelings out to someone who understands.. it's a major amount of comfort.
Yes certain positions I do get a lot of discomfort especially during certain times of the month. My whole left abdominal area is sensitive and I don't like to touch it or allow anyone else to touch it.. I don't like to lay on my stomach. Anything that has to do with pressure on that area is a no no But my sides are okay, I've noticed it feels much more comfortable if my legs are scrunched up to my chest. (I've read that's not a good thing) but it's comfy to me.
Also when I got the ultrasound done they said my ovaries looked perfect, my uterus looked amazing. All these great things. And I'm glad to hear but it still leads me to question, what's going on? But since they haven't seen anything abnormal they didn't put much effort into caring I guess. They left it up to me, but idk what I should do. I understand doctors can't really tell you what to do they can only give you options and let you decide what to do. But on my end it's stressful to decide bc I don't want to make a wrong or Unnecessary move. my mom has had a lot of health issues and went through many surgeries. Today she told me that sometimes you have to just take a leap of faith. And I suppose that's what I have to do. The lap surgery is just bandaid since there is "no cure" . So I mean even if it will help then I suppose. But i don't want surgery to mess up my chances either if I want to have children. I don't plan on it for another 5 years at least. I've done my research I know quite a few of the best amazing surgeons in the US. And I'd prefer to go see them but they are out of my state :/ I have also been reading online about an "endometriosis diet" now, I think this can be true and helpful Bc I have considered it could be my colon/digestive system. Like you said, there's only 2 organs in that area, colon and reproductive. And yes the pain is closer to the surface. More on my side yet closer to the middle of my pelvic. (Also the back of my side hurts time to time too ) but anyway My PA told me to change my eating habits to see if itmade a difference with the pain. She told me to try for just a month, so I did. I was eating healthy all month and the pain did ease off a bit. It wasn't completely gone and it still came back stronger during that time of the month but eating differently helped quite a bit! But I did discover it's not my bowls, no diarrhea, no blood etc. but during my research, when I found things about an endo diet. It has somthing to do with certain toxins in foods that can make it worse. I have yet to get the book on it but I will! I was told to ease off on gluten, dairy and somthing else I don't remember... but you should defiantly look it up! It could help quite a bit :)
I also understand it's frightening to get intimate.. you have that fear that what if it becomes more painful or what if I ruin the mood completely and ruin my relationship.. I'm always terrified my boyfriend will leave bc I can't give him what abnormal girl can. I'm scared he will find no pleasure with me. So ever since I found out about endo I've been a mess.. I've been feeling very weak about that topic. Including my relationship, my health, my future. And I have my extreme weak moments like last night, I was up half the night going through anxiety and tears... bc my journey with endo was stuck in my mind. And it's awful but no matter what I will never give up and I will fight for myself and my future and my relationship and you should too. Don't ever give up bc if you do you will lose who you are and the things you desire most. (I'm sure you know to fight for yourself) but just as a reminder to just never give up. And be proud of who you are. It's okay to not be okay. It's a hard thing to accept and im still working on accepting that too. You can be open and honest with your man, tell him what you need, tell him what you feel. Don't be afraid to do so. If he won't listen or work with you, you'll be miserable. Sex doesn't have to be rough and wild for it to be the best. It can't be very gentle and romantic. And honestly I think that's the best. Don't be afraid to be intimate. But it does take communication to understand the limits with having endo. Once you two work with it you'll feel those fears fade. I had to talk to my boyfriend and I felt bad but he grabbed my hand and told me it was okay and he'll do anything to make sure I'm happy. And my god that day said it all to me. He's the most amazing guy I've ever met in my life. And I don't have to feel ashamed with him.. he lifted my weights. Somthing I never expected. I hope that you and your boyfriend can find an understanding. I don't know him but if you feel like he's an amazing guy that would do anything for your happiness then don't be afraid to be open with him about this. About your fears and limits. Don't give up on sex! You don't have to do it all the time just don't avoid it completely. There's also many other ways to be intimate without having sex. If he loves you, he will love for all that you are, the way you were born

Hello again! I hear you! It is soooooo nice to be able to talk with someone who understands the anxiety, stress, fear, depression, etc. that go along with this process. That is exactly what I was hoping for when I joined this site and I am very grateful I did because meeting you (virtually) has been a tremendous relief. So from the bottom of my heart, thank you :).

I have not tried the knee up position. For me, on my back or on my left side works the best for me. If I lay on my stomach or on my right side then I feel the pain...it almost feels like it's pulling. I will have to try your suggestion. My doctors said that same thing about the US. Everything was perfect, which is good news but also terrible news. Like you said, it leaves me worrying what is going on. I'm glad that you have your mom to help you through this. I'm sorry to hear that she has struggled herself. I have not heard of the endo diet. This journey just recently started for me so the research I've done is not very extensive. Can you copy a link in your next response to a good webpage about it? That's awesome that you were able to get some relief from the diet!! :) It never ceases to amaze me how easy it is to change long held habits when they may be contributing to pain.

I wanted to tell you about my doctor's appointment yesterday. My doctor does not think I have endo...he says it is a possibility and should be ruled out but he thinks it is more likely that I have an adhesion. He said the fact that I can push on it and make it really angry is a strong indicator for an adhesion. He wants me to pursue a lap with my gyno so I have a consultation with her tomorrow. Has any of your doctors suggested an adhesion for you? I wish I could figure out how to paste a picture in this forum so I could show you where my pain is and see if it is similarly located to yours. Is your pain very localized? Mine is and my doctor said that's another indicator of an adhesion.

He also said something that I think will help both of us. I was asking him about endo and having to go through surgery and he said that surgery is the only way to definitively diagnose endo. He said that I should seriously consider pursuing the surgery because it is non invasive and if I do have endo the sooner we know for sure the better, that way he can work with my gyno to get me on a good therapy program to help me manage it and move on with my life. This made me think, we should take charge of our situation and fight (I too am a fighter, I like your spirit!! :p) and figure out one way or another if we have endo. The sooner we know for sure the sooner we can deal with it. Also, maybe we have adhesions, in which case, they just need to be cut and the pain goes away :). Maybe you are like me and the hardest part of this whole thing is not knowing what is going on, not being able to get a definitive diagnosis?...so I'm with your mom. Let's take the leap of faith :).

Thank you for your encouragement about sex and intimacy. It feels good to be heard and encouraged and it is very comforting to me to hear your experience. Unfortunately, there are other factors in my relationship right now that further complicate things. I am sooooo happy for you that your man is so supportive of you. I am sure that is exceedingly comforting. I'm sure my man is the same way. We are just navigating a rough patch in our relationship so right now so it's rather difficult to have open discussion.

I look forward to hearing from you, again, sincerely, thank you for going on this journey with me...hahaha that sounds cheesy but I mean it. :)

Hi Im sorry I haven't been on it's been one hell of a week for me! But I will do some research for the diet and send you a link! It may help a lot. The spot where it hurts is basiclly where my left ovary is. I have considered it is an adhesion it's very common to have when you have endometriosis. An adhesion. I'm pretty positive that it's a strong possibility. I thought that, or my Fallopian tube is swelled or blocked. But adhesions don't just happen out of no where. They are caused by endo, infections in the reproductive, and cancer. Now I've had all std tests done by my doctors they all came up negative. He said he checked for all but I'm not specific of which ones. Which I plan on talking to him about that. I've also had a CBC blood test done and my levels were normal so I don't have cancer. All there is is endo. Tho my mother and sister don't have it. Only my cousin does and her mom and siblings don't have it either so me and her are in the same area. Which I find interesting. But a couple years ago I took the depo povera and I was in my period for 6 months non stop. No day with a break. And I'm kinda concerned about that. It has me thinking. I had no problems at all before I took depo but then a year later I do. I also found an article on Facebook about the depo and says it can cause endometriosis

Did the rest not show up? What the hell?

Sorry lol but yea it concerns me and has me thinking cause I'm positive bleeding for that long could do damage. And it's not normal for a woman's body to do that. But my mom and sister doesn't have endo, only my cousin does and her mom and siblings don't have it either. So I guess she's in the same spot I am. Which I also find interesting.
Someone had wrote a reply to my post and she suggested that I get a pelvic MRI done just to see if there's any more abnormalities before I get surgery, she also suggested that I could have adenomyosis. Which is pretty much endo just a little different so I may talk to my doctor about that. I plan on setting up an appointment with him this week and talking to him. I'll let you know how it goes :) I'm also looking for a surgeon to do my lap.
My grandpas girlfriend has stage 3 endo and she had an excision surgery done in Tennessee and she's been 15 years pain free! So I'm really trying to find out who he is so I can go see him too! I don't want just another doctor to do this. I want a good surgeon! Plus I can use a little vacation in Tennessee :)

Also the girl that messaged me and said it could be possible I can have adenomyosis says she had some of the same symptoms I have. So I mean, it could be possible. But I read that it can make your uterus the shaped and could also make your uterus enlarged. And thro the pelvic exams and ultra sounds they said everything looks perfect and my uterus looks normal. My gyno seems pretty positive I have endo. Just he's kinda rude and not very compassionate.. but he seems pretty certain and he's the only one who's taken me seriously....

I'm sorry to hear that your week has been rough. I'm right there with you. Well, I saw my GYN for a surgery consult and she wanted me to go to an orthopedist to rule out musculoskeletal conditions and possibly a hernia before she will do a lap. She doesn't think it is GYN related at all. I personally think that is a steaming pile of malarkey so I went back to my PCP and requested an MRI, which I think is kind of ironic having read your comments. Now there is a new saga going on trying to get the order right for the MRI. The imaging place and my doctor are not communicating and it is so unbelievably frustrating and I can't schedule the MRI until they get the order straitened out...so I'm just....waiting. It's incredibly discouraging and scary. I'm trying to be patient but I'm not doing so well :(. The weekend was murder, the pain was so bad aaaaaand I started having brown/rust colored discharge Friday night and it has not stopped. It's not a lot...just not normal...not normal at all. I'm on birth control and I take it religiously so I have no idea why I'm bleeding. Brown discharge means it's old blood so there is something wrong somewhere. I don't have much experience with endo or possible endo but can it cause you to bleed irregularly? No one in my family has endo so it would be really strange if i did have it but I'm not willing to rule it out.

I hope everything goes well with your appointment and that you are able to get the MRI and the surgery. I am sorry your GYN can be kinda of a jerk. I saw a male GYN once because mine was out of office and I will NEVER do that again. He was so mean and not compassionate at all!! He put me on a birth control pill that gave me anxiety attacks multiple times a day and when I called him to tell him about it he said "I really shouldn't be hearing from you for another three months, but I'll switch the Rx"...all he did was switch me from the generic to the name brand.

I look forward to hearing how everything goes for you. I hope you get some answers...I think the not knowing is the worst part. Thanks again for being here...it is very comforting to be able to talk to someone who understands. No one else really understands...they do try...but they don't get it.

Sorry to hear what you have gone through,I know how you feel because I was diagosed with endometriosis too last year.It was painful and some times I feel desperate because there was no hope.Having tried many times,I wanted to find endometrial hyperplasia treatment a natural way,such as TCM.Lastly,I noticed fuyan pills.After 3 months,I recovered from the disease.And I know how buy fuyan pill in U.S. I think it may be helpful for you.http://global.fuyanpills.com/

Thank you very much I will defiantly look into that! I really appreciate the help !

Also I know this journey is going to be hard. Even diagnosing can be a touch journey :/ I haven't been able to see my gym yet I'll be seeing him Monday and I'm going to ask him what makes him so sure. Cause even though I've been told I have endometriosis doesn't mean I do. Doctors can misdiagnose you... that's why it's best to take as many tests as possible to rule out any other possibilities... most doctors will do everything they can before going to surgery.. so it could be a long road to go down... I hope you are able to get that MRI done ! Push for it if you have to... I know doctors take their time and dink around but this is your life you kno? They shouldn't be dinking around.. I hate when they do that... just hang in there... stay strong.. stay positive as much as you can. Just know better days will come along soon.

And yes having endometriosis can cause irregular periods and spotting or bleeding between periods. I haven't experienced spotting or bleeding between periods yet.. it just gets painful around that time of the month and my period lasts for 5 days then it's done until the next month :/
Hang in there I hope everything will be okay, I'll be praying for you :) just try to keep your mind positive and occupied :) please let me know how everything goes! When's your next appointment? Also I ftheybdont think it's endo what do they think it is?

xiaoxicun - Thank you for your kind words and advice. I will definitely check those out! I'm sorry to hear that you are having to deal with this too.

Jess55 - I did finally get the MRI scheduled. It is next Friday. I really had to fight for it. Not because my doctor wasn't willing to do it but because the order kept getting messed up. I worked in healthcare for awhile and everything you say is 100% true. I have seen it in action. Doctors are just normal people and they absolutely make mistakes and misdiagnose you. Many of them also really don't care about you or what you're going through so you really do have to advocate for yourself. I feel very fortunate that I do have a GP and a GYN that are very caring doctors. I think that you are very smart to push your doctor for an accurate diagnosis based on fact and not assumption.

That's good to know. I'm really confused by all my symptoms. The pain has subsided almost completely except for a dull ache every now and then. I'm still "bleeding" but it is brown which means that it's old blood and has been in there for awhile. I'm not due for a period until next week and I take my BC pills religiously so I'm not really sure why I'm bleeding. As of yesterday I started having lower back cramps which are torture but this too shall pass haha. So do you have constant pain all month or mostly just near and during your period?

My GYN does not think it is GYN at all, but she said that before I started bleeding last Friday. My GP still thinks an adhesion is a possibility. I'm wondering about fibroids although I figured those would show up on the ultrasound. My coworker had fibroids and she told me that what I am experiencing were the same symptoms she has. At this point though, I'm just waiting for the MRI which is this coming Friday. I really hope it finds something. But, I know that if it is normal than endo is the most likely. It will also rule out anything scary which will be nice.

Thank you! You are in my prayers as well! :) I'm hanging in there. I have good days and bad days (emotionally) but just trying to take it one day at a time.

I was diagnosed with endometriosis in September (have been dealing with the pain for a very long time). The ONLY way to diagnose endometriosis is through diagnostic laparoscopic surgery. It's about a 30 minute long surgery and you will be put under for it. I have no idea why your doctor says that the surgery is a bad idea. Birth control will NOT stop it from continuing. At all. It will not take away what's already damaging your system. Birth control will stop the abnormal bleeding and take away some of the current pain you are feeling. That's about it. Unfortunately, there is no cure for endometriosis. I need surgery to remove it (the only temporary fix) so that it doesn't further damage my system.

When I was first diagnosed I felt relieved because I had been going through this pain and no doctor could tell me why but on the other hand I was scared and felt like my life was coming to an end. I have cramping whether I'm on my period or not, sex hurts like hell, and I'm always so exhausted. I'm drained. I felt like I couldn't have a regular relationship and life. This will always be a part of me but I am starting to feel better about the situation.

I haven't yet scheduled surgery to remove it but it needs to go. Otherwise the only CURE for it is to remove your uterus and then remove the endo that's latched onto your other organs.

Find a new doctor, please. One that doesn't put this off as nothing. Surgery will be your best option. Diagnose it and if you do have it, get the endometriosis removed. I can't wait to start feeling better.