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Need help from other woman with endo
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Need help from other woman with endo

Hello. I am back again with questions, concerns and frustration. I have been having problems for the past two years that have been getting worse and worse as the months have gone by. Pain during and after sexual intercourse, extreme pelvic pain, spotting in between periods, irregular and or heavy painful periods, lower back pain, now the urgency to urinate a lot more than usual even if not a lot comes out and now i keep missing periods or I get one every two weeks (which could be due to the fact that over the last six months I keep getting ovarian cysts which thankfully have ruptured and i have not had to have them removed) I went and saw a new obygn because my old one, I was not very fond of (no bed side manor) and we discussed what was going on with it. I think he did not want to assume the worst so he basically said that he thought I had IBS even though eating or drinking does not make it worse, I have no trouble with bowels or constipation unless I am on prescription pain meds which is a normal side effect. but he said it does also sound like i may have endo. And he said it was something to think about and consider but was gonna be on the back burner for now. And he did not want to dive right in and do surgery and go poking around if not necessary. I agreed about that and went with what he said even though in my gut i did not think it was true about having IBS. I had never considered endo. Heck, I did not really even know much about it. So he put me on medicines for it and told me to eat a plain and bland diet, which i most generally do. Its been over two weeks and I have not seen or felt one ounce of change.On Valentines Day I went to the emergency room with extreme stabbing pains, a pulling and aching feeling in my pelvic area. I felt like I had a dozen knives in my vagina. They did not do any ultrasounds or an exam because they are very painful and I just had one done not that long ago. But i told them my whole story and all my symptoms and they thankfully gave me a few doses of pain medicine to help me. They were concerned because my blood pressure was pretty high (due to the pain) and they had a doctor who apparently deals with woman who have endo and suggested that he thinks I have it. So I was told to consult with my obygn who was out of the office with the flu so two days later i had to go back to the emergency room again because the pain was unbearable. They basically did the same routine, iv pain meds for a few hours to get it under control, talked to a ton of nurses and the doctor and shared my story and again they suggested endo being the problem and since its getting worse i need to really have lapro exploratory surgery done. So today i called my doctors office and he thankfully was back in. Once they heard that i had been back in the emergency room they asked me to come in. I thought YES this is it, im gonna get the help i need and we will find out whats wrong with me. I was dead wrong. Instead he dropped the whole IBS stuff since the meds and diet werent making a difference and instead of going with what he originally said and going with the other doctors suggested he decided to tell me that he thinks I need to see a therapist because he feels my stress or anxiety (which the only thing stressing me out is him and whats going on with me) is causing me to develop some sort of mental condition where I  think I am feeling pain but i am not really in pain. He actually had the nerve to tell me this. Never once has he asked about my mental status let alone ask me if I was stressed or having any sort of anxiety. I was in complete shock over this statement. And of course me being me I didnt stand up for myself and couldnt really say anything other than "I dont agree with that but okay". So now I am back to square one. Find a new doctor, go to er everytime I run out of pain relief and the pain is out of control. I have done alot of research and have read alot of womans stories on here about having a hard time getting doctors to listen to them and getting diagnosed with endo. Any advice with this problem would be greatly appreciated. And if anyone else that has endo is experiencing what I am...please explain too. Thank you for your time and I am terribly sorry this post was so long.
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Avatar_n_tn
I am sorry that you have been through so much. Go find another doctor-- one who is an endo specialist. Your pain is real and my experience has been that if it is beyond a doctor's scope the first thing they run to is IBS and/or anxiety/depression. If this doc does not care enough to listen you do not want him. I a agree find that e.r. doc who specializes in endo if you can. If not get a hold of the endo assoc to find one near you:
http://www.endometriosisassn.org/
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1839773_tn?1330047553
Dont apologize for the long post! I think we all do it around these parts!

My experience wasnt exactly like yours but I can sort of relate die to my personal experience or due to others on this for having very similar eperiences.

For me, I saw 2 ob/gyns at the same practice both of which im familiar with because they cared for me during my pregnancies. Neither of them made my pain a mentak thing, however, they both blamed a possibility of ibs-especially considering my familial history of ibs. At the time I wasnt aware of endo either. When ibs came as an option, I immediately shunned it, like you my bowels were fine. But they gave me the option of a gastroenterologist consult or exploratory lap. So I chose the consult first, just to take the least invasive approprach and officially rule that out, which in fact was ruled out.
Opposite of you again, I started to make it a mental thing. Id awaken in the am before even opening my eyes and think "see! Theres no pain there! Youre fine!..." Then the pain would restart...after about 10 mos of painful ultrasounds, CT scans, blood tests, paps, cultures, GI consult, I finally got my lap and the endo confirmed in 11/11. The endo wasnt removed though because its in a risky area. Instead I was started on bcp which doesnt help the pain at all, instead I dont get a bad period, that'd it! Ive called the gyn office for additional pain meds because this naproxen is a joke. Each time ive called theyve encouraged me to change my treatment plan (and start Lupron inj which im highly opposed). So im still taking the stupid pills, currently on wk 10, and I have an appt with an endo specialist on 3/1! Yaay!

If I were you I'd leave that jerk of a dr. who suggested your pain is of psych origin. Find out who that ER dr. is, the one who you said specializes in endo? Go see that dr. at least. But im sure youve found in your endo research that the better way to go is to see a specialist! Had I done that first, my lap in Nov would've likely solved my problems of pain (giving me a diagnosis and treated it at the same time). Where do you live? Do you have insurance? Have you been tested for a uti which could prob cause the urgency? Or it could poss be interstitial cystitis which kinda goes hand in hand with endo.

Good luck! Keep us posted! See, I wrote a book too! Lol
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Avatar_n_tn
I am sorry that you have been through so much. Go find another doctor-- one who is an endo specialist. Your pain is real and my experience has been that if it is beyond a doctor's scope the first thing they run to is IBS and/or anxiety/depression. If this doc does not care enough to listen you do not want him. I a agree find that e.r. doc who specializes in endo if you can. If not get a hold of the endo assoc to find one near you:
http://www.endometriosisassn.org/
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1973066_tn?1331270596
Thank you for not making me so feel so bad for writing so much. And thank you to reassuring me that I am not alone and not crazy. Lol I too wake up and don't feel pain and I say YES WOHOO! And then 15 mins or wk for a by and its back. Full fledge and with a vengeance. :( I'm coping with this all but I'm so dang frustrated. I did indeed call and talked to the nurse that works with the ER doctor that is very familiar with Endo. He unfortunately is strictly an ER doctor so he refereed me to a different obgyn that is a female and said is very knowledgeable and thinks she can help me. So I called to make an appt and low and behold she is in the same office building as my current doctor. So I told the receptionist what was going on and she said I should be able to see her as long as both doctors okay the switch. So my fingers r crossed that they both agree and I also hope she will listen better and take me seriously and not call me crazy. Thank you so much for your help. It's nice to know I am not alone. Oh and one more thing...I do not have any family history involving IBS. I didn't want to shun that suggestion or diagnosis but I am very familiar and aware of my body and the fact that after I eat it doesn't make it any worse or better, no bowel issues, he didn't hear any extra gurgling in my colon and bowel movements don't make me feel better. If anything they make it worse for a bit bc if I dare use any lower muscles to push then it kills me. And yea I have had lots of urine tests done recently. Last one was a few days ago. No sign of bladder infection. It's weirs bc the urgency happens all night and all day even if I don't drink anything. But ya the UAs showed no bladder infection. I am certaintly worried at this point thay there is more than Endo going on or maybe it has glued its self to other organs such as my bladder. Oh and another thing....since when is one of IBSs symptoms include pain during sexual intercourse.? I should have known my doctor was alittle off bc of that. Anyways...thanks again for your help.
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1973066_tn?1331270596
Thank you! I know the pain is real. I just can't understand why he thinks otherwise. It's mind boggling. And yes if this next obgyn can't help then I will definetly look for a Endo specialist. Thanks so much
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1973066_tn?1331270596
One more thing...to answer your question....I do have insurance (its not very good though) and I live in Springfield, Missouri. I live about 3 1/2 hrs from st. Louis
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Avatar_n_tn
That urgency could come from either endo on the bladder, interstitial cystitis, and or both. I.C. does not show up by a simple urine test, you must have a cystoscopy with hydrodestention (under anesthesia). I had mine the same time I had my first lap to diagnose my I.C. (I have both.)
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1872071_tn?1320291132
I think a woman with endo can have IBS as well.  I don't think drs realize how badly endo can mess with a woman's tummy.
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Avatar_n_tn
Yes it can mess with the gut, that is because a typical place for endo is on the colon.
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1973066_tn?1331270596
Wow! Thank you all so much for your responses. It has really helped.
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1973066_tn?1331270596
Went back to the ER today bc I was in so much pain from my belly bottom down to my knees and I was having dizzy spells, night sweats for the past few nights and of course the annoying as ever urgency to pee. This doctor suggested its either Endo that's spreading or possibly ovarian cancer. He said he wishes he could tell me for sure but without the surgery and the biopsies there's no way to know. So I called my primary doctor immediately and she is getting me a referral to a new gyno. Hopefully this doctor will listen. And I got advice from another md that came and talked to me while in the ER and she said that it would be a great idea to write down all my symptoms and what I am feeling on a daily basis. She said sometimes doctors tend to respond better to that. So I am going to start the journal tonight and pray and cross my fingers it will help. Any other suggestions from yall?
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1872071_tn?1320291132
Hello.  
Have you ever tried speaking to some ladies in the ovca community?
They may be able to ease your fears as well and answer questions regarding ovarian 'cancer - symptoms, diagnosis etc.

I know I've seen many posts in the past by women with endo and let me tell you some of them had a hell of a time with pain.  So it very well could be that if you do
have endo it is wreaking havoc. If
you have net one woman with
endo, then you have met one
woman with endo.  Meaning every woman's symptoms are different - they are hers.  Some
women have no pain and others
have unbearable pain and can't
even get out of bed.

I too worry about ovca.  I am right now so you aren't alone. My obgyn says I shouldn't worry but I do anyway.

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1973066_tn?1331270596
No I haven't talked to any support groups of forums on here reguarding OVC but I think I will. I think I will though. I hope and pray everything turns out okay for you. Your in my thoughts and prayers.
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Avatar_f_tn
You know your body, and when something isn't right with it. I am always willing to talk to other women, because I have had endo problems for years. I also had to do a big song and dance to get anyone to listen to me.
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1839773_tn?1330047553
Since youre so close to stl if you cam see dr. Yeung I strongly suggest it! My appt is scheduled with him on 3/1, I only waited about 1mo for this appt too. Ill be flying in from nj. Hes the director or the endo center at slu and the associate professor for minimally invasive surgery. This center is familiar with difficult cases.
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1973066_tn?1331270596
Well thank you for offering to talk to me. What has some of your experiences been like for you with having Endo? And I just can't believe how nanny women I have talked with that say they had the hardest time finding a doctor that would take them serious and listen to them and take necessary measures. It just baffles me
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1973066_tn?1331270596
Thank you for the doctors name. I will definetly look into that. I just got the call today from this new doctor that my primary doctor refereed me to. I see hee on march 30th. She is at the cancer centre. I'm crossing my fingers that she will listen and take me seriously.
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Avatar_f_tn
What a cold hearted doctor. He obviously doesn't know what the H is going on. That pain is so real and not in your head. I hope you have found someone else that can help you. I had a scope for endometriosis, adhesions, and ovarian cysts at the age of 17. I was in so much pain I could hardly stand it. At the time I was forced to see the doctor I was currently working for because I couldn't come to work and I didn't have much money. After the surgery I felt so much better and about 10 yrs later I started having the same problems and pain. He did some tests on me and decided that I needed surgery again so I had another scope. So far it's been about 8 yrs now and I'm still doing well. We are ttc but to my knowledge the endometriosis is still under control. I see you live in MO and I live on the west coast so I don't know any doctors in your area. You are not crazy and its a crime that the doctor you saw is allowed to treat patients that way. I hope you get the relief you are looking for. It's a terrible thing to be in that much pain all the time. Best of luck.
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1973066_tn?1331270596
Update: my primary doctor got me a referral to a new OB that works out of our local cancer center. I have looked up her credentials and see sounds experienced in ENDO diagnosis and treatment and she is a gyno oncologist. So whether I have endo, ovarian cancer or both I think I may be in good hands. Only bad part is that the appt isnt until the 30th of March. Hopefully this appt is worth waiting for. Hope yall are doing well.
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Avatar_f_tn
It sounds like you have made a good choice choosing this doctor. I hope they get to the bottom of your problems and you can get the pain relief you are looking for. You might see if they have a cancellation list that you could be put on in case something opens up and you can get in sooner. I will pray that this doctor has the answers and treatment plans you need to start feeling better soon. Take care.
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Avatar_f_tn
NO do not worry about writting so much. There is a lot to the story. I have a similar story as well. I have been diagnosed with both anxiety and IBS in the past so since the age of 14 (12 years now) I have been having severe right lower abd pain and everytime i went to the doctor, urgent care or ER they always first tested for my appendix and when it didn't turn out to be that then they would tell me it was my IBS and send me along my merry way. I would tell them that I know what my IBS feels like and this was not the same pain or in the same place. But since i had that diagnosis that is the only thing that it could be. Finally i went to the er one time and they did an US that showed fluid in my pelvis and that flagged a dr to say that it was a cyst so they referred me back to my gyn.  after many visits to my gyn she finally did a lap and what do you know I have endo. it was a very small amount of endo but she lasered it out. after the surgery I was in just as much pain if not more and she was unwilling to do anything so I got a second opinion and it turns out that I also have intersitial cystitis. Since I have been being treated for both I am a new person, So what I recommend for you is to find a doctor who will really listen to you. Write down everything that you want addressed before you even go to the appointment that way you cant forget or get pushed off. And find someone that specializes in endo. I saw in a previous post by nina that you are close to STL I know that she saw the dr she recommended there and he was really good. So you might try and get in there. If you are close to springfield mo i see a good one in springfield. He doesn't necessarily specialize in endo but I would say he is by far the best in this area!!! Let me know if you need anything. Send me a msg if I can help in any way!!! And again I am so sorry for the experience that you have had. Those doctorsare the ones that give all doctors the bad rep!!
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Avatar_f_tn
I live in spfld as well so MSG me and we can talk about the dr that you are going to! I really recommend the guy that I am have been referred to he had solved my problems!!!!  And I can tell you who not to see!!
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Avatar_n_tn
OMG!!! Sounds so familiar. I did not read anyones responses to you. I will tell you that what you experienced with your doctor is ridiculous but unfortunately I think it happens a lot. After having a colonoscopy and endoscopy to rule out intestinal issues, i went back to my gyno (well a different doc in my gyno's office) and insisted what I was experiencing was not intestine related that I believe something more is going on and with my family history of fibroid tumors I wanted to be taken seriously. She said it sounded like endo based on my symptoms and her feeling around in there. She said she can do a laproscopy to check, but first wanted to put me on the birth control pill to see if I got any relief. Two months later no relief so I looked on line for an endo specialist, found one and went. Turns out I have adenomyosis which is worsened by the birth control pill. So, my advise to you is go so a true endo specialist to find out exactly what is going. Do not rush into any surgeries.  I was told to do a hysterectomy, but I am not ready for that yet. So, I am trying the natural approach first using natural progeterone cream.  There is a lot of research out there. Once you know what is going on do some research to see what treatment is best for you.
Hope this helped.

And know that you are not alone in this. And it is so totally NOT all in your head....
valerie
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1216742_tn?1334155711
Oh my.. I can't imagine how I would react if someone told me my pain was caused by stress etc.

I have horridly irritable bowels, and I need to pee all the time. Pain is in my thighs, my back, my abdomen, even my bladder at times. You know why? Because I have endometriosis, the worst of it being on my bowels and my bladder. Funny that I felt the pain before I was told where the worst of the endo was!  The nerve of some people.  My gyno laughed at me when I said I was so worried I had a colonoscopy and gastroscopy, he said it's definately textbook endo and fits with where the worst of my lesions were/are.

I think a lapascopy could only help you at this stage. It is not major surgery, usually only giving u about 3   1.5cm scars. They'll also remove as much as they can if they find endo too, which should relieve some of your pain.. for a while :(
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1216742_tn?1334155711
laparoscopy* sorry  I type too fast for my keyboard sometimes!
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