What a misunderstood disease...I've been battling this disease since I was 14 and I am now almost 36! Of course I was not even diagnosed until I was almost 20. I grew up in a small city where most of the gynecologists were mostly old men and so the one I was going to told me and my mom that my pain (cramps that kept me home from school every month for at least one day), my unbelievably heavy periods that caused me to pass out at school on occasion from fatigue, the mood swings that made my family think I was possessed by the devil at times...was all in my head and that I was just looking for attention.
ARE YOU KIDDING ME? Who can fake that kind of stuff and who in the world would? Thank god my mother, who I think is an absolute saint, kept pushing and supporting me...she still does! I have had 15 surgeries to date, including a hysterectomy (I do still have one ovary that managed to survive all the other crap, one didn't but I'll get to that later!). I never really stopped having symptoms following the hysterectomy. I have struggled for several years with severe aches in my left side. It is horrible.
I've had different doctors suggest and treat the pain for first endometriosis, then it was found at one point that a ligament some how got wrapped around my left fallopian tube and it cut off the oxygen flow to my fallopian tube which died and turned into a crystal basically. Then when they removed the ovary the symptoms didn't go away. So then it was thought that I had a hernia, which apparently I did, but it was most likely from my work in construction.
But I've had to have the hernia repaired twice after the initial repair. And guess what? The pain has not gone away. Now I'm seeing a specialist who performed pain mapping on me 10 years ago when the problem first started and she couldn't find anything at the time. So now she has tried trigger point injections and nerve medications. The trigger point injects were supposed to give me up to a week of relief...I'd get couple hours if I was lucky.
So she has tried medication treatment like gabapentin and topiramate. Both of which did give me some relief but the side effects were unbearable. Especially the topiramate, my hands and feet were getting the sensation of "pins and needles" like they'd been asleep. It would happen at different times during the day, but it would wake me up all through the night which I couldn't deal with because my job requires me to be alert and well rested.
So here I am, still in distress, still no answers and I really, in my non-medical opinion, is most likely endometriosis that is still in there. But because I've had so many surgeries, my doctor doesn't want to be invasive again. Again...ARE YOU KIDDING ME?
What else can I say that you haven't already lived through or heard about? Life goes on, I cope as does everyone, but it is good to know that there are sites like this out there where we can at least be honest, talk about it and thank god for small things like that!
Back in 2006 I was told I have endometriosis, PCOS and a blocked tube. My partner and I have been trying for a baby for 5 yrs now. Ever since I started my periods back when I was 13 I have never had a regular period, they have always been all over the place, so after a yr of trying for my first son who is now 9 yrs old, I had the coil fitted.
Then after a couple of years we thought about having another child so the coil was taken out, we had been trying for about 2 yrs with no joy, so I went to the doctors and he sent me to a specialist. After going for endless meetings with him he sent me for a laparoscopy operation and I was told about my endometriosis and PCOS.
Nothing then was further done, 3yrs on and going to the doctors and trying to get me some sort of treatment, he has put me on hormone replacement tablets. This was only done as I found a private consultant, and told my doctor that I was going to see him, so like magic I was sent for blood tests and was given these tablets (norethisterone). Now I am waiting for my private appointment to come through. After so long of fighting all the way and getting brick walls. I don’t hold any hope any more, of getting pregnant or getting treatment.
I need to do something as the symptoms are getting so bad now it affects my daily work. I don’t have one day where I am not in distress. I can't cope any more and back in Jan of this yr I tried to end my life due to this. Now I realise that it was stupid but it hurts me that much I just can't handle it any longer.
I will start of my Endometriosis story by giving a little background on who I am. I am 26 years old, married for 5 years, 2 beautiful children that I am so thankful for. My children are my life and they have made my life so much better. If it wasn't for my children I really think that Endometriosis would really take over me and I wouldn't be who I am today.
Now lets go back 4 years to 2005. I had just had my son and things were going good. He was about 3 months old. I woke up like any typical morning but this particular morning I could hardly walk and the agony was so bad I had to have my husband stay home. I called my Dr. of course to see if I needed to be checked. They got me in that same day. I was told that my uterus was swollen but it could be from just having a baby.
They send for ultrasounds and tests which come up fine. I go to my appointment to talk about the tests and see what to do next and the Dr suggests that we do a Diagnostic Laparoscopy. I was very scared because of the unknowing, what would be in there, if anything at all. The surgery was scheduled for July 13, 2005. It was a quick surgery and I didn't hurt much at all. The Dr came in and talked to me about what he had found. I was a little out of it but I did hear him say I had some Endometriosis and chocolate cysts.
Endometri what? I had never heard of it at all. At my post appointment 2 weeks later he just says what the next steps are. My choices were bcp's or Lupron. Like Endometriosis, I had never heard of Lupron either. I decided just bcp would work for now. Three months after the surgery my problems are back and so we decided it was time for Lupron. I researched it as much as I could but that shot was hell on earth.
I was working while on it but I could hardly stay well enough to do my job and was just not myself. After 6 months I was finally through with this treatment. It is now April 2006. I go to the check-up for after the shot and my Dr is basically telling me there is nothing we can do now, just wait and see. He puts me on bcp again. This time YAZ and I don't take because I just don't like bcp'c at all.
I go back a month later because my body wasn't feeling right and the Dr argues with me a little about the bcp helping a little. I just told him we were going to be TTC soon, so it doesn't matter anyways. So, my husband and I were trying to get pregnant with our second baby. I mean this is a big time in our life.
I thought getting pregnant would be pretty easy and not take too long. I was wrong. We started trying in May 2006 and I didn't get pregnant until February 2007. I know it doesn't seem like a long time to some that have been trying for years, but being told nothing was wrong all the time and that it takes time sometimes really never helped.
But the day we found we were pregnant with our second baby was so great and we were so happy it didn't matter how long it took. I had a few issues with Endometriosis in the pregnancy but my Dr's kept telling me that it couldn't be Endometriosis. Pregnancy helps endometriosis, is what I heard for like 3 months of the pregnancy.
Even through all of that I had my baby girl on October 9th, 2007 and none of the crap the Dr's put me through mattered any more. I was so happy to have my son and my baby girl. After having my baby I was put on numerous bcp's like IUD, Yaz, mini pill. I didn't have any luck with any of them and I will leave it at that.
My daughter was only a few months old and I call the Dr. to tell them I am having spotting and a lot of problems between my periods. They tell me this is normal from having the IUD taken out. I really didn't understand because I only had the IUD in for 3 weeks. But I go in to be checked out and the DR wasn't happy at all and sends me home feeling the same. I call my primary Dr and asked to be seen. They get me in the same day. My primary Dr is nice and I like her but I was left in distress and no answers.
I had tests which showed a cyst but the cyst disappeared. I am so frustrated with the symptoms and the Drs I decided not to go back to any doctor, and I didn't until September 2008. That weekend the symptoms were so bad I couldn't walk and nothing was helping. So, Monday I call to be seen and they get me in on that Tuesday. I go in determined to get answers but I got nothing.
My Dr was rude and told me my pain couldn't be as bad as I was saying it was. I am talking agony that was making me sick and where I couldn't take care of my kids. My body was doing something through the next few months that nobody can explain or tell me what it is.
I weighed 163 in Sept. and I in January I went to see my primary because I was so fed up with all my problems. She did every test there was and only found a cyst on my ovary. I had gone to my gyn prior to that and had an ultrasound done but never heard anything of it.
My weight was still going up from 163 to 176 to 183 and no reasons. I am told to get a follow up through my gyn for this cyst, and I do after while and my gyn tells me there is nothing wrong and just puts me on another bcp. I call my primary to let them know about what my gyn said. They call me back and tell me to go back or get a second opinion. I chose second opinion and figured this would be my chance to have something done. (now through all of this I am having pain in my back, abdomen, pelvic area, burning when I urinate, problem bowel movements and nausea...all of this and none of the drs would tell me why or give me anything for the pain.
I did get some tylenol 3's but when I asked for a refill they refused it.) Now I am set up for an appointment with a new gyn. I am relieved and happy. She listened better than my previous gyn and understands. She said we should do a Diagnostic Laparoscopy and D&C. My laparoscopy was scheduled for July 24th 2009. Now that is almost 2 years of doctors with no answers.
The weeks leading up to the surgery were nerve racking but I made it through alive. The surgery was awful, a lot more so than my first in 2005. My husband talked to my gyn while I was in surgery and he tried to explain what my Dr had found. I went to my post op and she explained it to me a little better. I had a lot of scar tissue, it was on my uterus, adhering to my abdominal wall, on my bladder and ovaries. She removed a small cyst on my right ovary. My recovery wasn't hard but it wasn't easy, especially with 2 kids running around.
But now my options are get pregnant now, go on Lupron or a bcp because she says I need to have my uterus removed. That is scary. I am not ready to have another baby and I don't want Lupron. She put me on a bcp but I won't take it. I don't see how it is supposed to help with symptoms. But for right now I am just going to deal with the pain. We plan on trying for another baby in about 6 months so I see no reason in going on anything just for 6 months. I am still suffering but I know that with Endometriosis there are many choices out there. It is something that is trial and error. God only knows how bad this affects me.
I was diagnosed with endometriosis in November of 2008. It happened almost out of no where! I mean I had always had bad cramps, but my period was pretty much regular. My cramps weren't as bad when I was younger (12 I started my period) but they seemed to get worse as I got older. I remember being a Junior in high school, and I went to the nurse because my cramps were so bad I could barely stand.
My grandparents had to come pick me up and my car, since I was unable to drive. I was so sick that day, but medications such as Tylenol, Ibuprofen, and Motrin always helped. My pelvic cramping started in an odd form that I have not told my doctor yet, but am going to once I have my next appointment in November of 2009.
One day in July of 2008 I was intimate with a guy I hadn't known for long, and well he was really rough. Rougher than anyone I had ever been with in my short sexual active period. That's when the pelvic throbs on the left side of my pelvic area started, as well as the very painful period, the bad lower back ache, the fevers, the headaches, the painful urination and bowel movements.
I was scared, and worried, and I thought that I was possibly pregnant at first. I decided to do a home pregnancy test, and it came out negative. I met a wonderful man, that I am still with today, and he encouraged me to go so a gyno. I did. My doctor was very nice, he ordered an ultra sound, and diagnosed me with endometriosis without a laparoscopy. He put me on birth control to control my periods so that I have only 4 periods a year.
I can say the problem is not as bad as before, but when every third month comes to have that period it feels like hell. My back feels like sharp knives are slicing my spine, and I have fever during it, and it hurts to use the restroom, or to move. My posture is wrong. I have not been able to see another doctor or set up another appointment with the doctor I am seeing now because of financial reasons, but the symptoms feel like they destroying my life.
Sometimes I cannot be intimate with the man I'm in love with, and sometimes I'm so sick, its not fun. I feel like a fraud though, like everyone is looking at me and wondering what is wrong when I look fine, but my body is on LEVELS OF PAIN THAT THOSE PEOPLE DON'T EXPERIENCE! I have not done a laparoscopy yet, and I'm scared and my condition seems to get worse. I have lots of choices to make, because this is all new for me. I just hope I get better, and I hope its not doctor after doctor.
Hi to all the young ladies out there who are suffering perhaps from a very rare and painful form of endometriosis. PULMONARY ENDOMETRIOSIS, it is so under studied, and misdiagnosed, as I know first hand.
In 1988 shortly after the birth of my son, (3rd birth). I began with severe aches in my right upper back between my shoulder blade. I would spit up blood and before I could contribute it to my menstrual cycle, my lung would collapse! I suffered for over 6 years without a diagnosis, and rushed to the hospital where a chest tube would be inserted, every month! Finally, my family doctor and I went on TV channel 6 news, with Anita Brickman's health segment in Philadelphia PA.
I was finally diagnosed by a Dr. from Chile and began my long and painful journey of Pulmonary and throrastic endometriosis. It has been a nightmare, and in 1993 I had my right pluera removed and talcum powder and staples put in my chest wall to hold my lung up. Upon this surgery the doctor's instruments spread the disease to my left lung. This is the MOST painful disease that one woman could be saddled with, and for anyone out there, who suffers as me, I feel for you.
It took me so long to figure out that when I ovulate and when I am getting close to my period my lung begins to hurt, and by 2 days before my period, my lung collapses. I am hopeful I am getting close to the end of my problems, as I am now menopausal, and although, I still get the symptoms, it is not bringing me as many lung collapses these days, but a lot of pneumonia and bronchitis though.
Endometriosis has ruined my life! I started my period when I was 14 and I had very distressing periods. I missed a lot of school so when I turned 16 I got on the depo shot which stopped my periods and I didn’t have too many side effects from it, I was very happy that I didn’t have no more periods.
I met my husband in September 2004, we got married on November, 2007. Anyway this has affected my career and screwed my marriage up now we are separated because, long story short, I got off the depo shot December 2006 and me and my husband thought that was the right thing to do. So when we decided to have a child I should not have any problems getting pregnant. Then the worse thing that could happen to me was in February 2008.
I started having pain during intercourse, which lasted 27/7 and I never heard of this disease, all I new was something wasn't right, my distress kept increasing and I had no idea what was wrong with me. Luckily two of my co-workers had the same thing and told me that I had endometriosis, and I got them to explain the symptoms, and they named my symptoms, plus I had a lot more.
So I went to find a gyn and that was so frustrating cause no-one cared how much pain I was in. They did ct scans, mri’s and found nothing wrong. So I was referred to one and he said that all my symptoms were from endometriosis. He scheduled the surgery to remove it. Well I had my surgery April 28, 2008 and he said I would be back to normal no longer than two weeks. Well I actually was in more pain than before the surgery and he was just an (ass) excuse my language, but he didn’t believe me, so I looked for another gyn. This time was a female and she made me take the lupron shot, and I will never ever take that again.
The day after they gave me the shot I was in so much agony I could not even walk. I had to go to the emergency room to help relieve my symptoms and make sure it was not an allergic reaction. Well doctors said your symptoms get worse before they get better. Anyway the whole time that stupid shot was in my system I was in a lot of agony. I had bad mood swings and hot flashes, and I was taking hormones to help.
Since I was having so many problems I filed for fmla so it did not count against me for missing so much work. Well a couple of days after I was approved, they made up something and fired me October 03, 2008. So I lost my job, my health insurance and I lost my husband. In the beginning of 2009, I got better but now I am having a lot of distress again and I tried everything they told me to for treatment. Now I do not know what to do. If anyone has any advice for me I really need it cause I am scared and alone no one understands how much pain I'm in and I am tired of being affected by this stupid disease!!!!!!!!!!!!!!!!
I started my period when I was ten years old. I am now 45 years old and it has been 35 years of agony. I knew from the first day that these symptoms were not normal, none of my friends or class-mates suffered the way I did each month. But no-one would listen. I went to a specialist when I was seventeen and at university, and he diagnosed me with pelvic inflammatory disease and placed me on a series of expensive heat treatments.
When that did not work I went to another doctor who told me the first was a quack because I was a virgin, and could not have pelvic inflammatory disease. This doctor was quite bright and so when I was only eighteen he did a laparoscopy and diagnosed me with endometriosis. He then placed me on a drug, which stopped my period for a few months. Those were the best and happiest months of my life. The pills were quite expensive and as I was still a student I had to stop.
My period came back and so did the pain. The same doctor gave me low dosed injections which stopped my period for six months. Once again the best time of my life. I even gained weight and was able to go away to study. Alas I stopped taking these injections as I was away from home and the pain returned. I have not had any treatment since then until three years ago.
My new specialist told me my endometriosis was so bad and it made no sense operating. He said the walls of my uterus were like a cement pavement and I could not conceive without in-vitro. He placed me on lupron for 3 months and promised the side effect were temporary. He lied.
Three years later I am still having hot flashes, I am tired all the time, I have terrible mood swings, my skin is thinner than paper and I bruise and cut easily. My bone density is really poor etc etc. I still have problem periods but now I am also suffering from nodules which pop up when they please in my uterus, and I have to keep cutting them out because they give a lot of problem.
He also removed fibroids before the lupron all of which are back. I am scheduled to do a histology because I am quite frightened at what is happening to me. I am thinking of having a hysterectomy. If only someone will tell me that that will solve my problems once and for all. It seems since I was ten I have never been able to enjoy being a woman.
I was told by my OBGYN doctor that she was pretty sure that I had Endometriosis when I was 15. I had the surgery to see how bad it was when I was 16, they said it was too severe to remove any of it. I am 19 and not too long ago I found out that I was pregnant. I was so happy words can't even explain how happy I was when I found out.
Unfortunately I just had a Tubal Pregnancy at 2 months pregnant, which of course caused the loss of my precious baby, severe pain, shock, very bad internal bleeding, and two more scars. I am so depressed now and I don't know where to turn. I'm pretty sure I am on the verge of a nervous breakdown and loosing my faith fast. I just wish it would all go away...
Hi there, I am just back from an appointment with a gynecologist and he suspects I might have endometriosis. I was sterilized in 2001 and it was after that the pain started. I was doubled in two and not able to function every month. In 2005 I had a breakdown due to....big long story, that I wont go into, but I found myself in a psychiatric ward.
I was prescribed Amisulpride for psychosis and one of the side effects of this drug was that it stopped periods. It was like a miracle to me. So much so that my psychiatrist allowed me to stay on a small dose for the sole purpose of stopping my period.
During the last 4 years I achieved a college degree, been working full time and now I’m just about to go to uni. None of this would have been possible if I was still having those nightmare periods. I have had no periods or pain in 4 years and it has been the making of me. However, I can't stay on this drug forever, hence the visit to the gynaecologist, as there is no way on earth I could go back to that pain.
The gyno is going to do some test and check me out to see if endometriosis is the problem. He says he may be able to fit the coil, even though I have never had any kids. If not then I’ll have a hysterectomy. I am 45, so he will take my ovaries too. I would rather the hysterectomy, as with the coil, I may still have periods and I don't want to go there. I have read some of your stories and I am heartbroken for you. I wish you every success for your future. Good luck. X
I had (well, I still have) endometriosis. I have had multiple surgeries to remove the lesions. It had wrapped around my colon and bladder and caused agonies with constipation and problems with intercourse. I finally had a hysterectomy because I was told that would cure it.
I had such hopes of finally being pain-free. Well, the hysterectomy was my biggest mistake. It did not cure my endometriosis and now I have the problems of surgical menopause on top of it. I have severe hot flashes, fatigue, joint pain, etc. I am on hormone replacement therapy, but I still have ill effects of not having my ovaries. I’ve been to several doctors, including the one who did my hysterectomy, and all of them tell me that it is not possible for me to still have endometriosis because I have no ovaries.
When will doctors be educated on this? I even discussed with all of them the fact that there are microscopic lesions that could not have been all removed and my HRT can possibly be "feeding" them. They all act like I’m ridiculous. I’m in worse pain now than I was before. On top of the hot flashes/night sweats, depression, etc. To all of you who suffer from endometriosis, please find a physician who is well-educated in the disease BEFORE making any drastic decisions. If I had it to do over again, I would not have made such a drastic, uneducated decision. Now, for some, a hysterectomy is a blessing, but it wasn’t for me. Please research and find a qualified, caring physician.
Hi, I am 28 years old and a mother of 2 wonderful little girls! I have been dealing with distressing symptoms for almost 3 years; I was just diagnosed with stage 4 endometriosis in July of 09. However in the last 3 years I have had my appendix removed (didn’t get rid of the problem). I also had my gall bladder removed. I was then sent to a pain clinic (which in my opinion is the doctors’ way of giving up on you).
I saw the pain doctor once and never went back because I knew there was something wrong and they couldn’t help. I then got pregnant and was hospitalized for about a week because I had a kidney infection; I sadly lost that baby at 3 months pregnant which required a DNC. Shortly after the DNC I was experiencing a lot of cramping and had a fever, I had gotten an infection in my uterus from the DNC.
I was still having symptoms that nobody could identify (which was the endometriosis) I then got pregnant again, but once again I miscarried. Between my 2nd miscarriage and the birth of my 2nd daughter I was having a lot of problems still and I had an upper and lower GI (I was being told it was IBS which I didn’t believe), and was having a hard time getting pregnant.
However we were blessed and I was able to carry my daughter to almost full term. At that time my husband and I decided to get my tubes tied because of the miscarriages and my health. My daughter was born in November of 2008 (both of my children were c-sections). I felt somewhat good for a a while, then in February of 08 it all went downhill and quick.
I had got phenomena and was diagnosed with hpylori (which is an infection of the stomach) not to mention the severe pelvic and back aches that no one could explain. I went through more doctors than I can count. I had another upper and lower GI which came back normal. Then in July my new OB decided to do laparoscopic surgery and found that I had endometriosis on my uterus, tubes and pelvis area and I had adhesions all over which caused my uterus to be stuck to my abdominal wall, and my left ovary was also stuck.
So I had a hysterectomy on 8/17/09 (the doc left my ovaries) however once he cut me open to do the hysterectomy he also found that I had endometriosis all over my ovaries as well. So……. Here we are again, the pain is back in full and has been for about 3 weeks. I just went to the doctor yesterday and he is now telling me that I must have a back injury, which I know it’s not.
I have the pelvic and pain, night sweats, and the nausea, and I know my body and I KNOW it is back. I am going to request that he do surgery again to make sure he didn’t leave any endometriosis behind, and if he does not agree I will travel to another state to go to an endometriosis specialist, because there are none in my area.
I really can’t afford it but I want my life back. I want to be able to enjoy life again and enjoy being a mother to my girls. It is so frustrating to deal with the symptoms and try to carry on as normal. I have found everyone’s stories to be helpful and it is nice to know I am not alone. I wish you all the best of luck, the only advice I can offer is to listen to your body and be forceful with your doctors, make them listen to you. Even if you have to go through 20 doctors don’t give up.
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