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Anyone else have dr's who wouldn't listen?

[deleted account] ( 11 moms have responded )

I am curious about others experiences with doctors since no one ever took me seriously until recently. Has anyone experienced doctors who made them feel like they were just complaining about "normal" period pain? For years, I asked if it was normal to bein so much pain and never got any answers, only "yes, some people experience more pain than others". It turned out that I had endo the entire time.

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Kasondra - posted on 10/25/2013

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I had my daughter 8/25/2012. September I had the implant birth control put in. In Jan they did surgery to burn off my endometriosis. They said at the time it wasn't on my ovaries yet. Although because of my over whelming bleeding and mood swings they also put me on the nuvaring. In may my pains came back twice as bad. They told me that it couldn't be back and that it was just a small case of a UTI. The pains and the swelling have only been getting worse and worse. About 3 months ago I stopped using the nuvaring because of the depression it was causing. Almost a month and a half ago now it got so bad I dropped to my knees in pain at work, they sent me home to go to he er. After 3 visits and a doze tests later, they tell me I had a small vaginal bacteria. I took the medication but still didn't help matters. Now, I am eating chocolate all the time (not sure if it is related), my lower back is very swollen on both sides, I can feel small "lumps" in my lower stomach that are hard, my breasts are sensitive (like during pregnancy), shoulder sorness, headaches, sinus issues, and no period for 3 months now. When I was at the er the last time the said the pregnancy test came back neg. I have been having mood swing like crazy; I can be happy as can be one minute someone say something wrong and I'll flip out or get very depressed. I can also get depressed and start crying and not know why. Is this caused from my endometriosis? How can I get a doctor to listen to me? I am 27 with 1 child. I just don't know how much more of the pains, mood swings, and other issues I can handle.

Amber - posted on 04/21/2009

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I definately had a lot of dr.'s that didn't help me and made me feel like I was crazy. I started having bad pain and heavy periods since I was a teenager and it just got worse and worse. When I was 18 the dr I had told me women get cramps you just have to deal with it. When I was about 22 I had to go to the emergency room because I was in so much pain I had a cyst rupture they just treated me at the hospital for the pain and didn't even give me medicine for when i went home. I came back with more pain a few months later and I had a cyst so large that it actually made my ovary bigger than it should have been and then they just gave me medicine and sent me home. I found a new dr. that did surgery and just drained the cyst and nothing else. I then found a specialist that did another surgery just a few months after the first one and removed the cyst which had filled back up and all of my endometriosis which was very bad. That dr. didn't understand how bad my pain was and would not give me medication for the pain. He moved away and I needed to find a new dr. a friend from work suggested her dr. I have been going to him ever since. He has done my last 3 surgeries (I have had 5 in all) and the last one he removed my left ovary and tube. After he removed my ovary I was then able to get pregnant with my son. I have very aggressive endo and I just had my son 3 months ago and am having my period for the second time since and the pain is back. I hate calling and asking for pain medicine cuz the nurse always makes me feel like I don't need it like I am making up pain just to try to get some medicine. Why don't people understand that the pain is real and it is so bad nothing else works.

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User - posted on 01/21/2013

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I do I had surgery in december and now i am having the same pain i had before i had surgery and he will not listen to me. i have went to the er they won't listen i go for a second opinion friday thank goodness im tired of being in pain.

Emily - posted on 06/03/2010

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i was told by a doctor it was all in my head she wouldnt do any test to determin what was going on..i asked her for a second opinion she sent me to a different dr within 20min of talking to the new dr she had me scheduled for surgery cause she said everything i was telling her sounded like endo. and sure enough it was....but it was all in my head...i tried to file a complaint about that dr but they said there was nothing i could do

Lora - posted on 11/27/2009

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I have stage IV+ endo, am a support worker for endo and fibromyalgia as well as give talks and educate pharmacist students and other medical professional on it's effects and living with chronic pain. I am 45 and have suffered terribly w/heavy periods since my first menses at 9 yrs old.



I have had 13 ab surgeries for endo, cysts, secondary infertility due to endo, and 4 for severe calcified adhesion's as a result of those surgeries. My adhesions are so severe that they have caused frozen pelvis, my abdominal organs resemble a wasps nest after the adhesion's have pulled my organs together into a ball and attached them to my back pelvic wall. More adhesion's have closed off my bowel and intestines to the point that I can no longer pass feces normally, I take a nightly purgative that turns the one meal I eat per day into fluid so it can pass through me. Without this purgative I would suffer complete blockage or rupture that would very likely lead to death.

Further adhesion's have migrated in the last few years to cause severe blockage to my renal artery, this is causing decreased blood flow to my lower limbs resulting in my right leg/foot swelling to unbelievable sizes, causing pain and days of not walking. They say endo cannot kill you, this is true, but multiple surgeries in the hope to control endo...can, I am living proof as I spend each day working to avoid bowel/intestinal blockages and stress on my heart from the renal issues. I work very hard to educate women on more natural ways of dealing with endo in attempts to avoid ending up the way I have, which is disabled. I am on powerful pain medications along with the purgatives and anti nausea meds which cost a fortune.



I was diagnosed with my endo when I was 18, married and couldn't get pregnant, I had a teen pregnancy at 16 and endo robbed me of future pregnancies in those 2 short years. Even though I was lucky enough to have been diagnosed young by one of the leading gyne surgeons in Vancouver, I spent the rest of my adult life severely depressed from the absolutely appalling treatment I would receive by Dr's in the many towns my husband and I would move to with his job. Many would say it was all in my head, others that there was no such thing as endo, others, even female Dr's would say I was 'using' painful periods for 'attention', the majority always accused me of pain med seeking....and without fail each would try force me on anti depressants. In my mid 30's after a particularly bad bout of pain after a series of surgeries and a new Dr would was convinced endo DID NOT cause PAIN...I was in such a state of that pain I was ready to commit suicide. This Dr would not listen and in my small town I had no other alternative to find another Dr. I finally let myself be convinced to take his anti depressant meds which immediately had me feeling REALLY depressed, what I found much later was that I was having a serious and severe reaction to Effexor.



He increased the dosage several times which only made me worse, finally he kept adding anti psychotics, and several other (13 different meds in the end), to the point I started having severe seizures, hallucinating, becoming psychotic, and finally ending up having a complete psychiatric breakdown in combination with a grand maul seizure that was so bad an ambulance rushed me to the city thinking I would die. I ended up being put in a mental ward, God sent an angel to me that day in the form of a psychiatrist who changed my life by seeing I was completely over medicated and having severe reactions to 3 that alone caused psychosis. He took me off all meds and a couple weeks later I was myself again, though the seizure had damaged my eyes and has left psychological damages that still persist today.



The psychiatrist finally LISTENED to me regarding the increased severe pain I had been trying so desperately to tell these new Dr's about, my new angel found me a new gynecologist who took me under his wing. This surgeon did another exploratory and determined the adhesions strangeling my bowel and intestine, a fact missed in several surgeries before, without him finding this I could have had a rupture at any time. He fixed what he could, however there is too much extensive damage to do much, they have attempted 3 more times since to go in and remove those adhesion's, however it is so extensive they can no longer even get to the areas without risking damaging my bowel/intestine and causing hemorrhaging or cutting into those organs, which they would not be able to repair if they did.



So I now live daily with these conditions, I am now thankfully in early menopause which has DRASTICALLY cut down the end pain to a very tolerable level, had I know menopause would make this big a difference and come so early there is no way I would have consented to so many surgeries to deal with the endo pain... Had I known more natural ways to help it, how much diet plays a role, how meditation can go a long way in helping pain...had I known any of these things that I know now, I would never be where I am today.



I have a wonderful pain specialist who has my pain well controlled, I am still judged for my pain med use, judged by new friends. by family who will not take the time to listen and who cannot understand why it cant be 'fixed', judged by medical professionals such as nurses and Dr's even though my chart is very well maintained and backed up by the best specialists there are.



In the groups I run all women have had their fair share of Dr's not believing them, the stat's say women see an average of 9 Dr's before being diagnosed! You are not alone!

PLEASE be cautious in the surgeries you have, EVERY surgery leaves adhesion's, it's a toss of dice what they adhere to and what damage they may cause. PLEASE be cautious in listening to Dr's who push to prescribe you anti depressants when your issue is PAIN! Anti depressants will not cure the cause of your pain and it is natural to not be happy you are in CONSTANT PAIN! Push the Dr to have your condition and pain managed, not IGNORED!



God Bless, keep talking and spreading the word about endo, join the ERC or the EA and do all you can to help our cause. Our female children should NEVER have to suffer through the humiliation we do, just to get fair and compassionate care.

If anyone ever has questions or wants to chat, please feel free to mail me.

Lorettashomemail@hotmail,com.

Though I have not updated it lately...If you are interested in reading more of my story in my blog and finding useful videos, links etc...please visit,

http://lifewithendometriosis.blogspot.co...

LeManda - posted on 10/08/2009

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My doctors told me for years that I just had bad pms, it wasnt until my doctor sent me to a fertility specialist that I found out I had it.....I think that would have to be the biggest thing with endo. (NOBODY LISTENS)!!!!

Leanna - posted on 07/28/2009

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My pain started when I was 12 years old. My parents thought I was "telling stories" just to get out of going to school until my step-dad heard me crying in my sleep one night. When he woke me up, I started screaming about how bad it hurt. They believed me from then on. Unfortunetely, the doctors didn't. First, my mother took me to our family doctor who referred me to a gynocologist. She had a horrible bedside manner and told my mother I needed to see a sports medicine doctor. Since she couldn't find anything, she figured I pulled a muscle. He couldn't find anything and referred me to another doctor who checked my bowels. Basically, all three in their own way told my mother the pain was in my head.



I refused to go to the doctor with the pain again until I was 22 and I was in so much pain, I couldn't walk. That was the first time I even heard the word "endometriosis". But, since I didn't have insurance, they wouldn't even talk to me. About a year later, I finally got a job that offered insurance and found a doctor that took my pain seriously. He scheduled me for a laproscope and told me I had the worst case of endometriosis he had ever seen in someone my age. He also said I would be able to have babies, but I was running out of time. When my pain came back about a year or so later, he referred me to a Reproductive Therapist at the University of Cincinnati. (Fantastic doctor, by the way!) He did my second laproscope and again told me I could have children, but was running out of time. Luckily, I got pregnant on my own and when my daughter was about a year and a half old, the pain started coming back. After a lot of soul searching and discussion with my husband, we decided since we had the daughter from his previous marriage and the daughter we have together, I decided to have a hysterectomy. Then, I had to fight with the insurance company to approve it. They said it wasn't "medically necessary". Of all the bullcrap I have ever heard! Like it was an "elective" surgery. So, finally I had the hysterectomy at the age of 30 and I have been relatively pain free ever since. I guess I'm one of the lucky ones. I've heard of women having pain even after the surgery.



Sorry about the longwinded story, but I hope it helps.

User - posted on 04/06/2009

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I had a doctor in NJ who ignored everything that I told her about my pain (pain from periods to annual exams).   She had a horrible bedside manner and told me to take a couple of Tylenol before my next annual exam.  I was screaming and crying during the exams.   I told the receptionists, the nurses, and the doctor about my abdominal pain and not one of them listened to me.  My records are false from them...they don't list the complaints that I made. 



When I moved out of NJ to upstate NY, I still had doctors who thought that lupron was a cure for endo.  When I refused to take it and set up a consultation appointment with her and my husband, she got really defensive with me and how dare I research this disease on the internet since everything is false on there.  I brought in printouts from TAP's own website telling me about the side effects of lupron (common side effects that my own obgyn didn't tell me).  I was told that I don't know anything about endo or lupron and that SHE attends the conference I don't.  After her telling me that I had a sexually transmitted disease (which I didn't) she ordered up a couple of tests.



Those tests I did just to prove to her (or any other doctor) that I didn't have that STD but something else.  After getting the results back from her office about my ultrasound, I fired my obgyn and found another one. 



Recently while trying to get insurance to cover the out of network surgery for my 3rd surgery as an in-network one, I went to go see the insurance company's top endo doctor in my area.  He turned out to be a quack.  Told me that I didn't have endo even though I gave him the surgical reports from my two prior surgeries.  After the exam, he changed his tune and told me that I do have endo.  He told me that he doesn't send anybody over to any other endo specialist and he is one of the best ones around.  He told me his longest surgeries are 3 hours but he has scheduled several surgeries in a day. 



This doctor also was a ob doc so there were plenty of pregnant women in the waiting room so much so that I felt like an interruption in his day.  He refused to give me his CV (kind of like a doctor's resume) and referred me over to "the medical society".  He didn't want to answer any of my questions about how the treatment is done and if he found bowel involvement I would have needed a 2nd surgery for that. 



I lost the only obgyn that understood me locally.  She retired in 2007.  I am seeing another doctor that she recommended but it isn't quite the same.



Jen



 



 



 



 



 

User - posted on 04/06/2009

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I had a doctor in NJ who ignored everything that I told her about my pain (pain from periods to annual exams).   She had a horrible bedside manner and told me to take a couple of Tylenol before my next annual exam.  I was screaming and crying during the exams.   I told the receptionists, the nurses, and the doctor about my abdominal pain and not one of them listened to me.  My records are false from them...they don't list the complaints that I made. 



When I moved out of NJ to upstate NY, I still had doctors who thought that lupron was a cure for endo.  When I refused to take it and set up a consultation appointment with her and my husband, she got really defensive with me and how dare I research this disease on the internet since everything is false on there.  I brought in printouts from TAP's own website telling me about the side effects of lupron (common side effects that my own obgyn didn't tell me).  I was told that I don't know anything about endo or lupron and that SHE attends the conference I don't.  After her telling me that I had a sexually transmitted disease (which I didn't) she ordered up a couple of tests.



Those tests I did just to prove to her (or any other doctor) that I didn't have that STD but something else.  After getting the results back from her office about my ultrasound, I fired my obgyn and found another one. 



Recently while trying to get insurance to cover the out of network surgery for my 3rd surgery as an in-network one, I went to go see the insurance company's top endo doctor in my area.  He turned out to be a quack.  Told me that I didn't have endo even though I gave him the surgical reports from my two prior surgeries.  After the exam, he changed his tune and told me that I do have endo.  He told me that he doesn't send anybody over to any other endo specialist and he is one of the best ones around.  He told me his longest surgeries are 3 hours but he has scheduled several surgeries in a day. 



This doctor also was a ob doc so there were plenty of pregnant women in the waiting room so much so that I felt like an interruption in his day.  He refused to give me his CV (kind of like a doctor's resume) and referred me over to "the medical society".  He didn't want to answer any of my questions about how the treatment is done and if he found bowel involvement I would have needed a 2nd surgery for that. 



I lost the only obgyn that understood me locally.  She retired in 2007.  I am seeing another doctor that she recommended but it isn't quite the same.



Jen



 



 



 



 



 

User - posted on 04/06/2009

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I had a doctor in NJ who ignored everything that I told her about my pain (pain from periods to annual exams).   She had a horrible bedside manner and told me to take a couple of Tylenol before my next annual exam.  I was screaming and crying during the exams.   I told the receptionists, the nurses, and the doctor about my abdominal pain and not one of them listened to me.  My records are false from them...they don't list the complaints that I made. 



When I moved out of NJ to upstate NY, I still had doctors who thought that lupron was a cure for endo.  When I refused to take it and set up a consultation appointment with her and my husband, she got really defensive with me and how dare I research this disease on the internet since everything is false on there.  I brought in printouts from TAP's own website telling me about the side effects of lupron (common side effects that my own obgyn didn't tell me).  I was told that I don't know anything about endo or lupron and that SHE attends the conference I don't.  After her telling me that I had a sexually transmitted disease (which I didn't) she ordered up a couple of tests.



Those tests I did just to prove to her (or any other doctor) that I didn't have that STD but something else.  After getting the results back from her office about my ultrasound, I fired my obgyn and found another one. 



Recently while trying to get insurance to cover the out of network surgery for my 3rd surgery as an in-network one, I went to go see the insurance company's top endo doctor in my area.  He turned out to be a quack.  Told me that I didn't have endo even though I gave him the surgical reports from my two prior surgeries.  After the exam, he changed his tune and told me that I do have endo.  He told me that he doesn't send anybody over to any other endo specialist and he is one of the best ones around.  He told me his longest surgeries are 3 hours but he has scheduled several surgeries in a day. 



This doctor also was a ob doc so there were plenty of pregnant women in the waiting room so much so that I felt like an interruption in his day.  He refused to give me his CV (kind of like a doctor's resume) and referred me over to "the medical society".  He didn't want to answer any of my questions about how the treatment is done and if he found bowel involvement I would have needed a 2nd surgery for that. 



I lost the only obgyn that understood me locally.  She retired in 2007.  I am seeing another doctor that she recommended but it isn't quite the same.



Jen



 



 



 



 



 

Cat - posted on 04/06/2009

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I had a Dr like that for 7 years, I was diagnosed with conditions including a spastic colon, IBS, PID to name a few. I was told it was perfectly normal to have painful periods (I was 14-15 at the time) and that it was part of growing up and it would get better with age. By the time I was 21 I had moved to another county and registered with a new GP. As soon as I told him my symptoms he sent me for an ultrasound scan and that plus swabs and blood tests showed nothing. He then referred me to a gynae and within 6 months of registering with him I had had my first laparoscopy I was diagnosed with extensive endometriosis. It was then I was informed that I would struggle to conceive naturally and had it been found earlier I wouldn't have had it so bad. It was annoying to know that I had gone 8 years in severe pain and all along it wasn't just a part of growing up, there was actually something wrong.

I am still with that new GP 7 years later and I have had a further 4 laparoscopies since then, each finding endometriosis present. He is such a fantastic Dr and I am so glad I moved here and registered with him, he never doubts the pain I'm in and is always willing to prescribe me the relevant level of painkillers I need and always refers me to the relevant people I need to see,

It's so sad to hear that there are still Drs practising that are "old world" and still practice these old myths about endometriosis, or painful periods. As soon as a woman presents with painful periods, they should be taken seriously and if their history deems it necessary they should be referred to a gynae asap, not 7/8 years later.....

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