Dr. Cook’s Endometriosis & Pelvic Pain Blog
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June 17th
2010
What It Really Means to Have Endometriosis In last week’s post (“What is endometriosis?”), I said that endometriosis by definition is a disease process where the inside lining of the uterus, the endometrium, flows back up inside of the body around the ovaries and bowel where it implants and begins to grow. Quite frankly a lot of this medical stuff can be quite dry and boring and does not convey what it is like for a woman to have this disease and how it truly impacts her life, her family, her career, her sex life, and her ability to live her life in very basic ways. In reality, this disease can be like having tens or hundreds of excruciatingly painful blisters covering the inside of the pelvis. Infertility and pelvic pain are the two most common symptoms of endometriosis. Patients with endometriosis can experience horrific pain – for the lucky ones it lasts just a couple of days during their period, and in the worst cases the pain is 24/7. The dichotomy between the way women with endometriosis look well on the outside but are experiencing excruciating pain internally can cause even well-meaning people to doubt the severity of their pain. Most women begin to have pain in their teenage years, sometimes even starting in junior high school. While similar in timing, this pain is completely different than normal menstrual cramps. It is not uncommon for these girls to miss a couple of days of school each month from cyclic pain that can exceed the level of pain patients experience after major surgery. A lack of awareness of this disease can leave these girls without a correct diagnosis and support from their physicians. This can lead to a lack of appropriate treatment for the pain and invalidation of the patient’s situation. Her family is now led to believe that psychological issues drive the severity of her pain. In this tragic situation, she is effectively held prisoner and tortured by her own body in broad daylight, with no one who fully understands her situation or who can effectively help her. The symptoms usually progress as she matures into a young woman. Both the severity and duration of the pain typically increase. Initially most days each month are pain-free, but the number of these days slowly decreases until there are a greater number of non-functioning pain days. The unpredictability of the increasing number of pain days makes it challenging to maintain a functional life. It becomes increasingly difficult to make plans for a future date as it becomes more likely that it will be a pain day and she will not be able to follow through on her commitment for the activity. As a disease, endometriosis can take away many additional aspects of a normal life. Mothers cannot reliably meet the needs of their children when the pain is too severe to function. Wives try to push through the pain to be intimate with their husbands, but eventually the pain becomes too intense to continue. Grinding fatigue as severe as that experienced with advanced cancer is present in most cases. Bloating, moodiness, and bladder and bowel issues are common as well. Feeling like a vibrant desirable woman is long since gone. Acting like the loving compassionate woman, mother and partner that she truly is becomes more and more difficult. The stress on family relationships is common and real. Even at this stage, most women fight the disease, refusing to let it completely take over their life. You would most likely pass right by them in public, having no idea of the devastation they are dealing with. Most of the time they get up, put on a brave face and do their best to live a normal life. The medical definition of endometriosis does not even begin to describe the reality of what it means to have endometriosis. The next time you hear about endometriosis, please remember how devastating this disease can be to a person. While endometriosis can be frustrating, if you have a loved one, friend or co-worker who suffers from endometriosis, please remember to treat them with respect and compassion. We would like to hear your thoughts, stories and experiences. Post a comment below and tell us what you think. Tags: endometriosis, pelvic pain, what is endometriosis? This entry was posted on Thursday, June 17th, 2010 at 13:00 and is filed under endometriosis, pelvic pain. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site. 236 Responses to “What It Really Means to Have Endometriosis” Leave a Reply |
I am a 32 year old woman who in a couple of weeks will be 33 and I believe that I have had endo since I was about 14. I say believe because I have all of the symptoms but I never actually had an exploratory surgery to prove that is what I have. Since my teen aged years, I have tried so many types of birth control to help control the pain but none of them have been very successful. I’ve tried various pills, the patch, Nuva ring, and recently was on the depo provera shot. The shot was the only way that I had any relief from pain but it came with many other side effects which I became tired of also dealing with. People find it hard to believe that I am as sick as I am because I do a very good job of trying my best to look normal when I am out even if I am in pain. I am tired of my doctor, telling me that I am putting myself through needless pain and that I should just try the IUD because the pain will only get worse. I am extremely nervous about the IUD because I have read so many problems with using it and not to mention, I still have not had any children. My OBGYN tells me that if I want kids, I need to have the IUD inserted or my chances of conceiving will get worse and worse. I cannot even describe the pain to people because they really don’t comprehend what I am saying to them. Many think, as I have also read that the pain isn’t that bad and that I just want to be sick all of the time. I am constantly using sick days at work because there are times when I can’t even get out of the bed needless to say get dressed and go to work. I am a teacher and am going on my 8th year and I worry all the time with the amount of sick days that I am using. I found this site while yet again researching for some ray of hope to treat this disease and I am in tears reading about so many other women who are going through the same thing. With knowing how much of our body endometriosis affects, I can now understand why I also was diagnosed with Interstitial Cystitis some years ago on top of everything else. I just want to find a cure and with my faith in God, I will keep searching and praying that God will lead me to one or just heal my body from all of these ailments. No one wants to be sick all of the time so if someone finds something, please respond to my blog.
Thanks for allowing us to vent…
Sobbing. Lying here in bed at 4 in the afternoon. My pain is horrible today. I have read this article many times and posted it yesterday on FB. The comments those who love me enough to have read the info and all of your comments above have me crying my eyeballs out and writing this instead of the appeal letter I am supposed to be writing to my disability insurance company to appeal their decision to deny me even short term coverage after my principal and school director told me to go on disability because I had missed so many days due to my pain and depression/anxiety. All year I kept telling them what a good teacher I used to be. Twelve years of teaching middle school special education. I won awards and a grant that I wrote. I taught kids to read, really read. This was my first year at a great charter school and my “contract was not renewed.”
Dr. Cook is, by far, the most amazing physician and one of the best human beings I have ever met. I don’t know from where his gift of compassion nor the magical and caring staff came, but just re-reading this article has incapacitated me for the past hour or so (that and my pain today).
Seven surgeries, part of my bowel removed, no children, unsure if my illness and “treatment” (stupid, awful narcotics which nobody will give me enough of) will prevent us from passing (?) the home study we’re to have in order to adopt our (maybe,quite possibly) baby, due this summer, we’ve been trying to conceive now for seven years.
Girls, I beg you, if you’re scheduled to have surgery with another physician, cancel it. If there is any way you can just talk to Dr. Cook on the phone, you’ll know. He and his staff are the only blessings god (God?) gave to those of us who suffer with this disease.
Thank you all at VHI for this article, blog, belief and perseverance. Now… Please find a cure. Thanks.
Thank you so much, all of you, for sharing your experience. I am 25 and have been suffering with pelvic pain/endometriosis for almost 3 years. I have been on Lupron, every narcotic there is, and had a laparoscopy. Nothing has worked. I even traveled out of the country for help. I have pain constantly. Because of this, the many drs I’ve seen keep diagnosing me with different things. Until I read this post, I thought endometriosis pain only happened twice a month. Had I known this 3 yrs ago, I would like to think I’d be a little better. The most difficult thing is finding a dr who believes you that you have constant pain and is willing to keep trying. I can’t tell you the number of drs who have given up on me-made it my fault for not getting better. Who asks to have pain? Endometriosis has completely changed my life, I had to quit my job (my first after graduation), move home with my parents and have lost a lot of friends. I really wish there was a cure because it isn’t right that people should suffer in silence. What the article said is SO true! I look normal in public-you’d never guess the pain I’m in. I do this for myself-if I allowed myself to look how I feel, I’d give up on life. You have to have some normalcy with this horrible disease! You can’t give up on being normal, just keep hoping and praying that eventually you’ll find something that helps the pain. I’ve tried almost everything and the only things that temporarily help are Torodol shots (they help with imflammation), acupuncture(with moxa, I’ve done this instead of going to the E.R.), therapy(honestly, going through this you need someone who will listen to you)and the belief that you’ll get over it-because I believe it-I have to! I’m going to try the depo shot this week and hope it works! Thank you again for making me not feel so alone with this pain!
Hi, my name is Amanda. I am 14 and i have endometriosis. IT REALLY SUCKS! I found out i have it last year around thanksgiving. One day i woke up screaming/crying. My mom toke me to my doctor later that day and the doctor just ignored that i was crying over this excruciating pain. I changed doctors. A few weeks later i had my first visit with Dr. Naomi Paschall. She diagnosed me with PCOS (polycystic ovarian syndrome) after doing a pelvic ultrasound, but i was still in a lot of pain. A few weeks later i had another appointment with her and we scheduled for laparoscopic surgery. That fell through and we went to another doctor. His name was Jack Cothren and he finally did the surgery. When i woke up from the surgery he came to my recovery room and told me i have endometriosis and explained it to me. Before i had the surgery he told me there was a 3 on a 1 to 10 scale that i would have it. I was so surprised and scared. He told me there was nothing else he could do for the pain. Now it’s a year later and I’m still in really bad pain a couple days a month. I’ve been in the ER like 4 times for this excruciating pain. Infact i was there just yesterday. I don’t know what to do. I feel so hopeless. Anyways thank you for writing this blog because i can really relate to it.
I am 29 years old and have suffered with Endometriosis for 15 years. Like a lot of you I was mis-diagnosed and shuffled between one doctor to the next. I have undergone 3 laporocopy’s and have been on Lupron twice and I still can’t get away from the pain! In fact, I feel as though I just get worse as I get older. Oral contraceptives rarely work for me and even when they do it only lasts for a few months. It is so frustrating to have Endo. I don’t know what is like to be “normal” anymore. Endo. does affect every aspect of your life. More doctors need to be educated about Endo. not just OBGYN’s! Thank you for this article and I completly agree that EVERYONE that knows someone who suffers from Endo. should read this.
I thought I was alone until I read these articles. No one believes me when I tell them how bad I hurt. I was pregnant a few months ago and was forced to terminate my pregnancy, because I was told I had fybroids. Well, after 6 months of the termination I was still having these pains. I returned to my doctor and he then performed a laparoscopy just to find out that it was endometriosis. So you can imagine how I felt after finding this out.
I’m 34 years old and I’ve dealt with endometriosis since I was about 13. I went years and years being misdiagnosed and finally after showing up at my doctors office every day for an entire week, I was finally rushed to surgery where they performed an exploratory procedure only to find my insides were covered with endometriosis. I was 26 when this happened. 13 whole years of complete agony.
I had dealt with the pain for so long, it had become second nature and I didn’t know what it felt like to have a “normal” day anymore (to be honest, I still don’t). Because my pain tolerance is so high, no one really believed me when I would tell them how bad I was hurting, including the doctors. A couple of years ago, I had my 3rd surgery. I went back for my post operative visit and when the doctor perfomed the scan, he was in awe. He said if he hadn’t performed the surgery himself, he wouldn’t believe what he was seeing. In a 6 week period, the endometriosis had already started to grow back. In addition, I have these cysts called endometriomas that cause excruitiang pain. I’ve gone through 2 IVF treatments because of the endometriosis I’ve had a difficult time getting pregnant. The first cycle failed because they over stimulated me and I had to be hospitalized. The second treatment worked, but I miscarried in my 12th week. My husband and I desparately want a child, but after 2 treatments, who has the money to pay for another IVF cycle??
I often tell myself, if I could just have 1 child, I promise I’d have a hysterectomy. The pain just isn’t worth having a uterus!! If it weren’t for my desire to be a mother, I would have had one a long, long time ago. The pain is debiliating and you often feel as though no one understands. Outside of the pain, the bleeding is awful. My cycle lasts for about 7 to 10 days, with heavy bleeding and I’m always anemic. Can someone just find a cure, please!!!!!
im so glad that i found this website bc i thought no one would understand exactly how i felt im 24 yrs old and ive been diagnosed with endometriosis my life has changed drastically i can bearly work i hurt all day everyday and sometimes i get tired of saying im hurting and ill b visiting my third doctor on friday and im nervous bc it does seem as if no doctor fully understands but this one who wrote this article i believe we need more drs like him to all my ladies whom suffer from this your not alone
Thank You for this article! This article needs to be read to all the family, friends, co-works, bosses or anybody that knows of any woman that has Endometriosis! Me reading this article put tears in my eyes. Thank you for understanding!!
I suffer from severe endometriosis. I am 24 years old, and have been dealing with this terrible disease for 8 years. I can’t hold down a job, or even function normally any day of my life. I had to drop out of college because I couldn’t physically handle it. It’s so depressing. I am currently seeking treatment from any doctor that can help, but I keep getting shuffled around… No one can seem to help, or even wants to. They all think that since I am so young, I must just want the narcotics. Everyone thinks I am making this up, that it’s all in my head, even though I have had a laparoscopy and have been diagnosed with endometriosis, pelvic congestion, and have over 20 cysts. My parents don’t believe me, my friends don’t understand, and my husband struggles to support the situation because it is so frustrating. The pain NEVER stops. I often faint, throw up, am either constipated or having diarrhea, my whole body aches… and the hormonal migraines are just awful. BC pills make me violently ill, lupron depot treatment just about killed me, and any type of physical therapy treatment is unbearable. It’s good to read of everyone else’s experiences to know that I’m not alone, but at the same time…. I just wanna be fixed! It’s not fair that my youth has been stolen from me, I don’t enjoy any aspect of my life. I have even prayed for death, more times that I can count. I hope that for all of you ladies, you can all find relief. I am still searching for an answer. You are in my prayers.
I have had endo since I was 13 they did not find it till I was 22, I have never been able to hold down a job. I am now 28 years old ive had 3 lap surgeries with no pain relief, they had to remove my apendix because it was covered with endo about to rupture. They say because of where it is placed they cannot remove all of it. I finally got pregnant last year after years and years of trying and prayed finally I did have a miracle baby but right after I had her the endo was as bad as it ever was. This disease has taken everything from me and left me with depression beyond belief,.at its worst I was in bed 3 out of four weeks, using a heating pad with no cover burning my stomach, taking burning hot baths to numb my back if only for a few minutes of relief crying from that pain as well,..throwing up a lot, headaches, weakness like I am about to pass out, constipated or diarrhea, nothing touched my pain I had a pharmacy of drugs nothing helped only made more side affects. Depression that starts the moment my pain does and doesn’t stop till the pain does. Many years was told “some women just have harder periods than others ” for over 9 years now going on 15 I can’t live like this anymore all I have is horrible memories of my pain and trying to get through school and the little jobs I eventually quit cause I kept calling in sick. I would take (and still do) a drug they gave to my dad when he was dying of A.L.S. called elavil don’t think I’m spelling it right but it pretty much puts me in a coma like state for up to a full day or two, problem is I can still feel a lot of the pain but can’t move….this is the only drug that helps in the slightest and its not enough, ..ive taken everything from over the counter and Herbals to morphine and Vicodin which I’m allergic to both I also have gotten close to 50 uti’s that are very very painful I’m very prone to them. Sex with my husband is for the most part painful and I feel like a horrible wife I’m never in the mood and he always is. I feel like there is no hope left ive done shots,6 months, 3 surgeries, birth control but it always breaks through, herbal medicine but NOTHING works!!!!! I feel like I have to accept this as my life because I see no relief: (
My Doctor thought I was nuts – absolutely no reason for the pain. My body tone would not be in the shape it was if I was in pain. Of course, now that I’m 40 pounds over weight, if only I would exercise, I would have no problems. Sound familiar? I picture slapping the Dr. with a cold, dead fish.
My gynocologist felt the back of my uterus and it was mushy. She told my husband that it looked as if a ten pound bag of coffee was dumped into my abdominal cavity. I had some andemyosis, as the tissue of a tube was gorwing into boselated womb. I was 28, and they did a total hysterectomy.
I got a ct scan on my lower GI in my 30’s. My pain is still cyclical. I lied to the tech on my second ct scan, saying I had my ovaries. The report said that they had to cut short the procedure because of pain (I’m knocked out!?) and that it looks like my right ovary had attached itself to my intestine.
Dr. Cook describes it beautifully. My mother has always had heavy periods. My Grandmother had 4 kids, but still it sounds as if she had suffered through it as well.
I’ve learned to describe in more univeral terms. Ever had your hand shut in a car door? Ever been kicked by a horse? Had said horse stand on your foot? Imagine you’re 12 years old with all that going on PLUS someone has a paring knife and is flaying you from the inside out. Now you get to study geometry and play some volley ball.
I wish there was some effective non-surgical treatment. I did not enjoy being castrated at 28 – and I shy away from using a gentler term. You are never the same person again. Hot flashes are the closest you’re going to get to the big lift off.
My Dad had a physicians desktop reference book, circa 1960. It explained that this only happened women who chose to work and tended towards hysteria. Can you imagine the condescendtion THOSE doctors showed.
I read that prior to reliable birth control women generally breastfed. The majority of women only had perhaps 10 periods in her life time – period(.)
I’ve been living with this now for years and I’ll tell you it’s the hardest thing ever to put on a happy face just to be at work;or so my husband wont worry. I get treated like Im a drug seeking freek. All I want is one day of no pain at this point I would settle for one hour. I’ve had a partial hysterectomy in 2006 but every thing just came back 10 fold. They shut down my overies and still I feel so alone. I’m kinda glad to hear I’m not alone or crazy. I seek help I need the pain to stop.
As many of you women have explained your pain, I to suffer from endo. I am having my 2nd Laparoscopy surgery on wednesday and am hoping for some relief. I think we all need to ban together and write letters to our president and legislators to get some sort of social security disability put in place for women like us! I will be writting my letters this week so please take a few minutes and do the same, we can maybe get something changed if we stick together!!!!
What It Really Means to Have Endometriosis is an artilce that I have been looking for quite sometime. My onset of severe cramps began in my teen years. I am no longer menstruating but I still have pelvic pain which causes lower back pain, too. I find it difficult to sit down, lay down or just sit for long periods of time without discomfort.
I have stomach distention, bloating, belching and sometimes painful eliminations.
I have always been given meds for back pain and a biospy was done to check for cancer related to endometriosis.
My illness because it is not seen is not understood by people. They equate illness with seeing crutches, wheelchairs and scabs and scars.
Thanks for helping me.
I have been diagnosed with endometriosis for seven years now. I have had laproscopy surgery twice now to remove any lesions and scar tissue that could be removed. Since I was first diagnosed I have also been diagnosed with interstitial cystitis, celiac sprue, IBS, and fibromyalgia. The article above is so true! It is very hard for anyone to truely understand what we go through every day. I try my hardest to act like everything is ok, but every day I wake up my body hurts from head to toe. It is a stuggle many days, but I have to tell myself to keep going, keep moving and you will make it through. The pain makes it hard to live a “normal” life, but what is the alternative, self pitty? As the article states, many people have no idea what women living with endometriosis are dealing with, so when people ask how you are feeling it almost becomes unbelievable to others that you could hurt every day. Dr. Cook I wish you were closer! I live in Maine and have seen doctors here and also in Massachussetts. From all of the research that I have done, the doctors I have seen are on the right track. I am now 33 years old and want children so badly. I am doing everything I can so someday that will happen. Unfortunately I am not in a relationship right now where that is possible. If anyone has any suggestions on treatment of all of the conditions that I listed earlier please let me know. Thank you so much!
i have had pain in my lower abdomin and back since i had my 1st period at ten years old. i was always told to stop crying everyone has cramps. i have been to the er, doctors, herbal specialists, the only thing they all had in commin was that they all thought i was making up the pain. im now 21 and was diagnosed with endometriosis at the age of 16 with a laporoscapy. within less than a year the pain was back. i now understand why i suffer from this unbareable pain,but i have felt like no one understands until i found this website and started reading some of its responses. im an in home care giver and a mother of two. some days like today i have trouble doing my job at work and when i get home. it had been a very difficult road for me and its a relief to see that so many people understand what im going through.
I’m SO glad to find this website. I have been struggling with pelvic pain for about 2 years now. I’m 20 years old and have no children yet. The infertility word devastates me. I have been to 3 doctors, who don’t act like they can really help me. I loved reading all your comments ladies, I know how you feel. You and I are not alone.
As I sit here and read all the stories, I feel great that I am not alone in this and sad that so many women suffer like me. I wouldn’t want this for my worst enemy. I have had 3 or 4 surgeries. I’ve lost count I waas able to have two kids after surgery. I’ve done the shots, & used a pain killer so hard I lost my mind for a day or two(seriously. Now newly married I have to share this illness with my new hubby. Sex is’nt bad it’s just ovualation and the day my cycle start. This illness is embarrassing, and I agree with the lady above there need to be a disablity plan for women suffering through this illness. We are expected to carry on like nothing is wrong but the fact remains we hurt, it hurts to walk, laugh, sneeze, sit, stand, shower, It hurts. Now I have to wait until my insurance kicks in to see a doctor. Until then overthecounter meds just dulls the pain barley.
Pelvic pain has been apart of my life since I was 14 years old. After having my first period I was put on birth control and hormone therapy to help the pain. And now at 19 years old I have been admitted to the ER twice for pain, and can’t get my doctors to listen. Recently I’ve had a doctor walk in and say “There’s nothing I can do for you, please leave NOW.” Assuming that I was seeking drugs rather than a solution.
I’m thrilled that I’ve found this website, it really helps me feel like I’m not crazy and that other women are experiencing the same problems and pain as me. I now have the information and the hope I need to approach my doctors and ideally reach a solution. Thank you so much.
ive suffered with this for a number of years.ive been to 5 doctors in one year they all looked at me like i didnt know what i was talking about and tried to give me more medication on top of more medication. im still having some problems but not as bad. thank you so much for understanding it means a lot.
Thank god a Doctor who finally understands the pain and suffering we are going through. I have been suffering for the past 6 years they have done hormone therapy and 2 laparoscopic surgeries the endometriosis just kept progressing and the pain getting even worse it was like pulling teeth to get the doctor to write me a prescription for the pain; they finally decided to do a partial hysterectomy on me and leave my left ovary and tube. But that has not been the end for me I am still getting cysts in that ovary which come back. So now I am fighting with my insurance to have it removed as well. I would rather be on hormone replacement than in all this pain and seems that doctors don’t like give pain meds. I see it as my only hope. I was able by the gift of God to have two children after 7 pregnancies. I am just ready to be done with all of this. 28 years old and over it. Thanks 4 the understanding.
I wanted to tell Della H, especially that you are not alone. I remember the first time I was diagnosed and I felt relieved to know that I was NOT crazy. I just started dating a guy, (who became my husband)and I was embarassed that I needed to sit down on occassion from our walks. I also went to the bathroom shortly after eating. I was afraid that he’d think I was bulemic. My belly was distended and I was always ashamed of it. It is frustrating. I suggest writing a diary of your symptoms. It helps me and my doctors. You will unfortunately see an OBGYN and a GI doc routinely. You may feel great for a while, then its back to feeling awful. Keep up the good work Dr. Cook. I will see you soon.
It feels good to finally read about endometriosis and that exactly describes the pain that we go through. I’m 45 and have been having menstrual problems since the age of 14 (severe cramps, headaches, etc.), but of course, only found out in my 30’s, after a laparoscopy, that all the menstrual suffering that I have been going through all these years were because of endometriosis. Î will not list and/or explain all the pain that I am going through and how it is destroying my life as it is all said in this article and in most of the posts, but I sincerely believe that endometriosis is an illness that is not taken seriously enough and I also believe that in some very serious cases (I believe I am one of those) that the government should have a disability insurance program for them. Thank you and SPECIAL regards to you all of you “BRAVE” women.
After I read this, this sounds exactly what I have gone through and go through every day. You just pick up the strength and move on.
hi there i read this and all i have to say is thank you,thank you for putting this out there and showing all these people what we go through and the pain we have to endure everyday i am only 26 i was diagnosed when i was 24 almost 2 years ago on october 2,2008 and i know the disease,i did not know it as good as i do now when i was told it was endo i cried and then i got mad because i thought why me,like most women do and then i cried some more and my husband just took me in his arms and said it will be ok honey,i always knew about the disease because my mom and her sister both had it,when they had it back in the 80’s and early 90’s all the doctors always said ok we know what to do,surgery that was the only option they had back then but now we have so many options and surgerys to help us get through all the pain and suffering its great to know YOU are not the only one going through this horrible pain by your self ladies i will tell you what i did and it has helped me so much from getting depressed and falling apart i went on facebook and found some of the most wounderful and loving women i call my best friends and fellow endo sisters and i could not ask for a better group of women i love them dearly and they help me get through some of the most rough patches i have ever been in thank you and please pass this artical to every friend and family member you can think of its a awesome article
WOW, this is the FIRST site that I really feel explains what I and others are going through! Unless you visibly have a disease or sickness, it is really hard for others to understand what a person with Endo. is really going through. Thank you very much for telling the truth.
I have been getting the run around from doctors for the last year. I tried three different kinds of hormones to get relief they did NOT help any. Today I am going to a new doctor to discuss surgery to find something other than hormones and pain pills, and I am hoping that she will do the surgery sooner rather than later. To all the other women out there dealing with this horrible issue my heart goes out to you a million times; hang in there, and I hope all of you find relief from the pain.
Hello everyone I am new at blogging so bare with me. I am 35 years old and my painful menstrual cycles started when I was 12. I would miss days from school, have fainting spells and excrutiating cramps all over my body. I dealt with this pain until I started going to an OBGYN when I was 16 years old and he prescribed me birth control pills. The cramps stopped for many years, but about 6 six years ago the pain came back and I would have pain off and on in my right side. I went to several doctors and specialists who checked my stomach, gallbladder,and colon because I also have stomach problems and so they thought my pelvic pain was from my stomach issues. I also had ultrasounds and MRI’s and my OBGYN did not find any cysts or anything. Now my pain has become constant and I have episodes of dizziness, vertigo, and fatigue. Not to mention the heavy bleeding, painful sex and my stomach problems. I just had a laproscopy on 9/16/10 and my OBGYN has diagnosed me with endometriosis. I am glad to find out what has been wrong with me all these years but I am scared of what is to come with living with the condition.
God Bless All
Thank you for this. The public needs to know more about this, and why it is that we who suffer such debilitating pain can seemingly move on through every day with her “brave face.”
Thank you , this made me cry, because it is so familiar.
Gosh, reading this was like reading my own life story and how I feel. I am 34 years old and was diagnosed at age 14. I had to have a partial hysterectomy at age 26 due to the endo being so bad and I couldn’t stop bleeding. Then at age 30 the pain and the endo just continued to invade my life and we made the choice to remove my ovries which took 6 hours because everything was stuck to my abdominal wall due to endo and scar tissue. Now at 34 I am having problems again, sex is painful and I have purple legions in my vagional canal again and they are not sure why since I have no ovries and I am not on hormones. I am having constent pelvic pain again and pain during and after sex…I feel like this never ends…and no doctors here have any answers for me. We are getting ready to transfer to Washington state, I want to come see you..maybe you can help me???
Reading this really hit close to home. I have been from doctor to doctor to figure out what is wrong with me all to tell me that I was either just constipated or perfectly fine. I really thought I was losing my mind. I dealt with the pain for a long time and finally after having been prescribed birth control and that not fully working I was finally able to get a nurse to completely hear me out and suggest the possibility of endometriosis. I am scheduled to have laproscopy next Wed and although I am glad I am also scared to hear that nothing was found and I am fine..Which is what I have heard for a long time now. I am ready to feel like myself again. Reading everyones story is like reading about myself and the pain I have been dealing with.. God Bless you all!
I was diagnosed with Endometriosis in Feb, 2010. I had a surgery done that month to remove it. I was told by the doctor that I would not have anymore problems with it and now 7 months later it’s starting all over again. I went for 1 1/2 years trying to figure out why I was in pain 24 hours a day. I haven’t been able to do any of my normal activities with the pain.. Having 3 active kids it’s hard to be in that kind of pain 24 hours a day for 1-1/2 years.. Not to mention not having the same intimacy with my husband. My mother has told me that she was diagnosed with the same thing as was her 2 sisters, aunt and mother and they made her have a complete hysterectomy and she has not had anymore complications. I’ve tried telling my doctor that that’s what I wanted to but they always say oh no that’s not what you want. I’m not sure what will work, if anything.
I was recently diagnosed after 3 years of pain and suffering. At first I thought well surely I can beat this. I’ll just find really good doctors who will do the surgery. First of all I must say, not all doctors know about this disease. They know the text book jargon and what minimal treatment approaches exists but they draw a blank when the endomertium lining is dispersed within your abdominal wall. I am looking for help. I am trying accupuncture, I can’t begin to tell you of the pain which begins the first day of my cycle then lets up for 4-6 days while I bleed only to go through it again when I start ovulation again. Right now my choses are depo lupron shot, surgery, or a hysterectomy. I have other children so fertility is not issue, i just want to be normal. I often feel inadequate as a wife and a mother. hugs even hurt.
[...] This post was mentioned on Twitter by Endo Assoc Ireland, Jenn. Jenn said: excellent endo article! http://www.vitalhealth.com/blog/endometriosis/what-it-really-means-to-have-endometriosis/comment-page-1/#comment-855 [...]
Thank you for this EXCELLENT article describing the challenges of living with endometriosis. It is frustratingly misunderstood or completely unknown to many people. Thanks for helping spread much needed awareness and understanding about this devastating, debilitating disease.
I was crying by the time I was finished reading this, I have had endo since I was a teenager and I also have heard those cruel, uncaring words from doctors and friends. You can’t hurt that bad all the time, or it is all in your head
I read this after the worst month of endo pain I can remember. This after countless surgeries including a hysterectomy. I have been struggling with the knowledge that I am going to need more surgery, but after reading this I realize how lucky I am to have found Dr. Cook. I now know there is hope. THANK YOU!
As I read this I found my self in tears It felt like some one took a page out of my diary of how I feel on a daily basis. I am actually still crying as we speak.
I have been having problems since i was 11 years old.When I was 13 a dr. told me I would probably have endo. I am know 28. I have visited many ER’s and many Dr.’s and every time it’s something new. I have had a partial hysterectomy wich is when they found it. The dr. swore up and down that I didn’t have it untill he did the surgery. It has been 3 years since then I am still haveing pain and it consumes my entire life. Right now the dr.s are saying it is IBS I was starting to believe it until I read this. Last year I had surgery because I had a cyst rupture and I was bleeding internally and My ovary had attached it self to my appendix so they ended up taking my appendix.
Thank you so much for your time to really understand women and how we feel. I had a cousin just tell me about you and again thank you so much for you patience and understanding. I thought I was alone and lost. Now I know different and will be able to take control of my life again.
Having read this article and being told that I ‘may’ have endo, I now believe stronger than ever that I have. I have suffered for years too and lets hope now that it can finally be sorted in some way. An inspirational article, making me say “ah yes, thats me” to so many points!
I have been seeing Dr. Cooke for a little over one year now. I am 50 yrs. old, and have been dealing with this disease since I was 12. I was diagnosed when I was 21. I’ve had 8 major surgeries and another half dozen or so minor ones. Until I met Dr. Cook, no one had ever seen the real me , stuck inside myself, suffereing. No matter what happenes now, I know someone cares and will continue to help me through this. Thank-you Dr. Cook. It means everything to me to have you as my doc!!
I have been living with endometriosis for many years. I have seen 6 ob/gyn this year in search of an answer for my pelvic pain. All 5 of them dismissed the idea that endometriosis could be the cause of my pelvic pain. One of them asked me condescendingly if I know what endometrisis means. I was sent to a pain specialist doctor and he was going to inject cortisone in my back. I have been living with pelvic pain for 3 years, but the disease was already at stage 4. This means it has started at least 15 years ago. The result of having it for so long most likely causes infertility.
I am greatful that I found Dr.Cook through the advice a pschycotherapist. I had been suffering from depression and fatigue. I thought my art career would be over at 37 years old because i was always so tired, especially at the end of the day. My pelvic pain was always present and kept tolerable with anti inflammatory medicine. I am also a samba dancer and refused to give up dancing. In 2008, I performed in SF Carnival and samba my way in the parade, a 2 mile route! Yes, I was struggling with the pelvic pain, but it didn’t come to a head until a few months later. Up to 2 weeks before my surgery, I started a ballroom dancing. I strive to be strong and show up to dancing on good days. Thank you to Dr. Cook, I will have my life and mobility back. Dr. Cook is an inspiring doctor. It was the first time I ever received the best medical care with respect, compassion, and personalized. His staff Jennifer and Linda are also excellent poeple who helped me to get through my recovery process.
I have not been seen by Dr. Cook, yet, but after reading this I have broke down crying. I have been dealing with these issues for over ten years, and I can not wait to see Dr. Cook.
7 surgeries and countless other procedures and I am still dealing with the pain everyday. Reading this incredible blog makes me feel vindicated, and definitely not alone. Thank you Dr. Cooke
Thank You! This has been the best information that I have read Yet.It actually has understanding in it.Thank you again.
Just had my second surgery for endo on 21st and still recovering. I can only say I simply love you for being such a wonderful human being and a great surgeon with such a high level of understanding about an “endo woman” that many of the competent surgeons are lacking. Really wish if you could help other endo specialists around the world to deal it the way you do it.
This is the best description of what it’s like to live with the pain and the feeling that people think you’re a hypochondriac and they can’t depend on you, because no one can hurt that much all the time. Dr. Cook and his staff are the most amazing group of of people I’ve ever met. I am truly blessed to have been treated by Dr. Cook.
why do people think that because you had a hysterectomy that you don’t have endometriosis any longer? I have to admit that is a pet peeve of mine.
I hear you talked with my doctor here in NE Michigan. Thanks, Dr. Cook!