• Endometriosis - The Patients Experience

Belinda | 22/05/2007 11:30:00

Thanks very much for joining our blog. Please feel free to tell your story Best wishes Belinda

Vianna Renaud | 22/05/2007 13:34:00

Unfortunately, I have nothing positive to report. After finding out I had it, I went into a state of depression. The primary problem was having to face the fact that life hadn't been, or was going to be, what I thought it was all along. Medical Experience My experience with my GP was less than positive. She put me on prozac to keep me 'together' until I had surgery to investigate further. I had a bad reaction to them so, at least was able to get that sorted. However, the surgery did not turn up anything and I was unable to discuss this with any medical professionals. After my surgery in February, my GP has continued trying new ways of treatment for a variety of issues. In the midst of the madness, I ended up seeing a homeopath / Chinese doctor. He tested me for food intollerance and WOW, I feel so much better cutting certain things out of my diet. Therefore, I would recommend alternative therapies if you are looking for new solutions and answers to your questions. I began seeing a personal therapist after my initial diagnosis. I did this as I needed a way to express my disappointment in my body, the change in my attitudes towards sex, children, and my husband. I would have liked to have found a support group however there is none in my area. The only advice I can give is to find someone you can talk to; whether it be a professional or family member. It is going to be extremely challenging and tough, but, if you keep expressing yourself, in a supportive environment, you will get through it. Instead of looking towards the future, focus on the day to day.

Holly | 22/05/2007 16:16:00

I was dx with Endometriosis 5/2006 because I went off my birth control and started getting my period every other week and heavy and painful!! I called my doctor and I went into surgery the next day because I couldn't take the pain anymore. She found Endometriosis and adhesions between one ovary and bottom of pelvic floor! She admitted she was shocked! The pain came back after 3 months and she injected me with Lupron 3 months and again 3 months later. That helped with the pain but it did give me menopose, hot flashes, and osteoprosis! Now I am on Birth Control again and doing ok for now...but you never know with Endometriosis.

Lisa | 22/05/2007 16:17:00

It was a long time ago when I was diagnosed with endometreosis and I had a very good doctor and when I was 30 I had to have a hysterectomy because I was in so much pain. My family was very supportive and the only thing I would do different if I could is not have a hysterectomy no matter how bad it was because of going through menopause. It helped having children to stop the endometreosis but after that it was a downward spiral.

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Kerry | 22/05/2007 16:35:00

I began experiencing pelvic pain around my menstral cycle when I was 18 years old (I am 38 now). Because my mother had taught me early on to go to a GYN for regular checks, I remember expressing my concerns that I had terrible cramping early on. I was told by my doctor that it was normal and to take ibuprofen. For every subsequent yearly visit to a GYN (not always the same one, I had different doctors while at College and when I moved several times), I continued to report that my periods were becoming unbearable. The response was always the same: it was normal and that some women 'just have bad cramps'. At the age of 26 the pain was starting at least 2-3 weeks before I started my period. I would have a horrible radiating pain that spread from my pelvis, through my lower back and down my thighs. I continued to go to work and live my life but at times I thought I would go crazy. I continued to express my concerns to my GYN, even making additional appointments because I was so concerned. I had one ultrasound and was told there appeared to be some growth but it was probably normal. I was then told that I should consider seeing a psychologist to deal with my 'real issues'. I finally convinced myself that it must be normal and that I was exaggerating the pain. The pain continued to get worse and I also began experiencing nausea. I started smoking marijuana after work when the pain was at its worst, mostly so the nausea would stop but also because ibuprofen was not working and I knew I was taking too many. I didn't know what else to do. At 29 I left the GYN I had been seeing for a few years to get another opinion. I realized that none of my friends were haviing the same issues as me regarding their menstral cycles and in fact they started to notice that there was something seriously wrong with mine and expressed their concern. I told the new GYN my history and that the pain was 'blinding' at times. She asked what I was doing for the pain and I told her that ibuprofen didn't work and that I used marijuana to deal with it. Instead of being concerned that I was in so much pain that I would turn to smoking pot, she chastised me for doing something illegal, and proceeded to write a presecription for painkillers, which I did not fill. 2 weeks later I had a period that was so horrible I went to the emergency room. The attending physician immediately referred me to an Endo specialist who ordered an MRI. Two days later he scheduled surgery. His first question to me was why I had never seen a GYN. I explained my history and he told me that he was not surprised. My first laparoscopy was almost 5 hours long. The Endo was covering my reproductive organs, growing onto my colon and my abdominal wall. The surgeon told me it was the worst case of Endo he had seen in years. After this surgery I was treated with 6 months of Lupron and then the pill continuously. I had 2 relatively pain-free years. At the age of 34, I began having symptoms again. In the past 4 years I have had 2 more surgeries: One laparoscopy and one laparotomy, both followed by rounds of Lupron. I have lost my left ovary and the damage caused by the years of not being treated has cost me my fertility. I went through 3 rounds of IVF- one resulted in a miscarriage and the others were not successful. Currently I am being treated with Lupron again, one shot every 3 months. The pill is no longer effective for me and I still experience flare ups every few months that last between 3-5 days, for which I must take Tramadol to get through. I was actually relieved when I heard my diagnosis because I no longer had to convince myself the pain was in my head. The specialist that treated me referred me to a therapist who helped people cope with chronic pain, and he was a wonderful person, totally comitted to the treatment of Endo. When I moved to the Netherlands in 2001, he assisted me in finding a specialist here. I currently go to a fantastic Endo specialist and have been very happy with my care. There is a stigma attached to Endometriosis. People still believe that it's 'just cramps' and not really a problem. I am still amazed at the ignorance of doctors in regard to Endo, that I saw at least 5 GYN's (all female, all located at reputable University Hospitals on the East Coast of the US) who told me there was nothing wrong with me, that it took a trip to the Emergency room to finally be listened to has been incredibly difficult to deal with. No one knows for sure until they try whether or not they can have children, but to know for certain that my infertility was caused by a disease that was running rampant for years is inexcusable. General practitioners and GYN's need to be educated about the symptoms and what to do/who to refer a patient to if they suspect Endo. If a woman is told by her that getting pregnant will cure it, she should go to another doctor. They need to recognize that Endometriosis is a serious and sometimes debilitating, chronic disease without a cure. Having a period should not cause a woman so much pain she literally cannot stand up, eat or work. What has helped: I have been a vegetarian for 15 years. I avoid dairy as much as possible and excercise. I find yoga and walking to be very helpful. I take vitamins everyday and drink alot of herbal tea, I also find that having a massage once a month helps, too. My suggestion: Parents should tell their young daughters that if they ever begin experiencing bad cramping, to tell them. Women should tell their GYN when they are having cramps and unsually severe pain. If the doctor tells them it's normal or not to worry, or writes a prescription without investigating further, she should go to another doctor. To women who have just been diagnosed, it's a good idea that they find someone with experience in treating Endo to talk to. They should also consider changing their diet and making exercise a regular part of their week. Be open with their families and friends, too. My parents and close friends are my best support, my husband is wonderful. My anger has subsided and my husband and I are currently in the process of adopting our first baby- this is a joyful and happy thing! I apologize for the legnth of this, but thank you for the opportunity to share my experience. I hate to think of any young woman in her 20's going through what I did

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chloe | 22/05/2007 17:03:00

I am a 40 year old woman with endometriosis and adenomyosis. I was diagnosed by laparscopy in June of 2006. My problems mainly started after having my fifth child by c-cection. I started out with pain on the right side. I went to my primary care who sent me for an ultrasound which showed nothing. I continued living with it and during this time my insurance changed and I had to choose a new pcp. By then the fatigue and fevers had set in and I went to my new pcp. He actually looked disgusted to see me setting there. I said I was really fatigued, it was so bad I could barely move from my bed to the couch. My standard of living dropped dramaticly. He told me your a mommy your supposed to be tired and then said but if it will make you happy I will run some tests. When I called for the results the receptionist gave them to me over the phone, not the doctor or his nurse the receptionist, she told me oh good news all your test results came back fine. I hung up and cried. I lived with this for another month and I decieded to try another doctor, this time I chose a female doctor. She happend to be in the other doctors network so she had access to the test reports he had done. She said I was borderline hypoglycmic, borderline hyperthyroid and very anemic. She then ordered more tests and found my thryoid had dropped further and so had my iron. She got me on the appropriate medications but the anemia was still a problem so she sent me for an ultrasound. The doctors nurse called a few days later and told me the doc wanted me to see a gyn asap. So she got me into see this gyn nearby right away. When I tried to ask the nurse questions about my report she couldn't explain anything, so I went and got my report and it said suspected ovarian carcinoma or endometriosis. That was evidently why she wanted me to see the gyn asap. No one explained anything, I was so scared, thinking I could possibly have cancer and that I may not see my kids grow up. What a relief it was to find out it was only endometriosis. Little did I know at the time what that all would mean to me. I saw that gyn and she was very rough, said I needed a endometrial biospy that day and did it without pain meds. I was already in incredible pain at that point. The pelvic exam was horribly painful but not as much as the biopsy. I waited a week for test results, still worrying about whether I had cancer or not. My Paternal grandmother died of cancer. After a week I went in the try to get my biopsy report as I had another appointment with another gyn coming up and was told by the receptionist it wasn't done yet and that the doctor hadn't even looked at it yet. I waited another week and I had to insist to have my report as I needed it that week for the other gyn I was going to see. I was told again that the doctor wasn't done with it yet and that she had made notes on it but not signed off on it and had I been scheduled for a cat scan yet. They finally at the last minute sent my biopsy down to the other gyn. I arrived at that appointment not knowing what the biopsy showed but still worried that I had cancer. When I got to this gyn she was very nice, thorough, and gentle. I thought well finally, this one really seems to care. She did many ultrasounds and determined that I didn't have cancer and I finally agreed in June 2006 to have my first surgery. She said her plan was to go in and laser the endo and remove the endotriomas in my ovaries and because I was constantly bleeding she did a d&c. When I woke up from surgery I was told that she didn't do anything but the d&c. My right ovary was adheared by endo to the pelvic wall so she didn't do anything. At my follow up visit I told her that I was willing to let her go in and remove that ovary but that was it. She looked at me and said no, if I go back in I am taking everything! I about fell off the table. I told her I still was absolutely against a hysterectomy unless my life was in danger. I have done lots of reading on endo and hysterectomy and I don't feel I would benefit from this as it's not a cure for endo. So we started discussing my other options, one of which was Lupron. I was really scared to take this stuff because of the stories I had heard about it, but I thought if it could buy me some time and possibly save me from a hysterectomy it would be worth it. My gyn told me she didn't think it would help but that I could try it if I wanted to. I then began the task of trying to get my insurance company to pay for the shots which are about 500 dollars a piece. The insurance company refused, so I contacted a lady listed in my book that had put our insurance plan together. She was wonderful and so caring it felt so good to finally have someone care. She got my husbands employer to pay for the shots. I started shots in the summer of 2006. The shots put me into menapause. I had horrible headaches that lasted a couple days after the shot. The only hot flashes I experienced where the palms of my hands would get so hot I could feel the heat coming off of them and my ears felt so hot that I thought they would melt off the side of my head. My gyn also prescribed progesterone to go with the Lupron and I think that helped with a lot of the side effects. Before I started the Lupron I was in so much pain I couldn't hardly walk, sit, stand. I had nausea, vomiting, diarhea, constipation. I never will understand how you can have both diarhea and constipation but I have experienced it so it does happen. I got half way through the Lupron and went to see my gyn and she asked me how the Lupron was working and I said the pain has improved a lot and she said well I think we should stop the Lupron, you really need a hysterectomy. I said no way am I stopping the Lupron and I am NOT having a hysterectomy. She said ok and I finished the Lupron. When I went back I had the first pelvic exam that was painless in a long time. She still was talking about hysterectomy and I refused again. So she put me on Yasmin and try it but we can't have you walking around in pain. That was the last time I saw her. I started the task again of trying to find another gyn. I did find one and she said she would do a hystectomy if that was what I wanted, layed out all my options for me and said I will see you in a year unless you want the hysterectomy or have any other problems. That is pretty much what the doctor side has been. The family and friends side is another story. I have pretty much pushed away everyone. I see sickness as a weakness, not sure why but I try to hide it so people won't think I am weak and I have been so sick and not wanting to be around anyone that I gave up my friends, stopped going to things that I was invited to. My family has pretty much given up on me, they think I should just have a hysterectomy and be done with it. I wish it was that easy. I try so hard to push myself, its really hard to be mom, wife, friend, family member, when you just want to crawl into a hole. Endometriosis is something that no one can see on the outside. I worry that I have passed this monster on to my daughters too. Hopefully soon we will know for sure why this happens and stop it.

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Lexi | 22/05/2007 18:10:00

I was diagnosed with Endo in July, 2004. I don't believe any any doctor would of actually considered that diagnosis if it wasn't for my mother who had struggled with Endo for years. I went to a Ob doctor who also specialized in Endo patients. If you live in Las Vegas, NV, his name is Dr. Volker. I had several surgeries where large ovarian cysts were removed along with endo cells. After every surgery the pain came back and the endo grew back. My doctor takes my symptoms very seriously and I think that is what makes the difference between me staying sane and going insane. I find that ultram works well for the pain and naproxen works well for the inflamation on bad days. I have also found that name brand tylenol arthritis works well for the pain too, surpringly. There are months that I feel like I'm pregnant with cravings, tiredness, hotflashes, but it all caused by hormone changes from the endo. The only thing I have found so far that helps me overall is staying on a low dose of birth control constantly so I do not ovulate. Ovulation is when the endo gets worse and cysts can form so stopping it all together helps alot. Now, staying on birth control constantly without a period can help with preventing more damage but it does not help with whatever endo already exhists. Everyone, including my doctor, keeps telling me that when I get pregnant endo usually reverses and women do not have any problems. Unfortunately endo is also related to infertility and that is where I am at right now. I stay on the birth control so I do not ovulate because I cannot stand the added pain yet when I go off the birth control I cannot get pregnant. It is a round and around battle that I don't wish upon anybody.

Miichele | 22/05/2007 19:10:00

It was 15 years before I was diagnosed. I am almost 41 now. That was 6 years ago. I finally got a doctor to listen and investigate. I was diagnosed with stage llll endo. My first lap surgery was 6 hours long. The doctor was not able to remove all of the endo. I was given Lupron which has many side effects. I was placed on this drug on and off for 1-1/2 years. I suffered terrible migraines. I was taken off the drug due to bone density loss. I was so glad to be off the drug. We tried a few other hormone therapies. All failed due to migraines. I had another surgery approx. 1-1/2 years ago. I am only at a stage l now. Yet, the pain has remained the same. I deal with it but I do not like it. I have my ups and downs. I do suffer. Luckily I have a wonderful family! I am not able to have children but I have a wonderful Mom that is still alive, my Husband, two Brothers and many many friends. I have two beautiful Golden Retrievers! They are my babies! I have a wonderful doctor that does not believe in I need a hyst. at this young of age. We all know that a hyst. is not a cure and that the endo could come back. I have a pain specialist. I take Vicodin when I need it. I deal with the pain mentally as well. I try to have the best life that I can. I hope that a cure is found soon so others do not have to suffer. :)

Miranda | 23/05/2007 15:26:00

At the age of 17 I started having periods that would last for over a month and were extremely painful. After discovering that my mother had Endo I did some research online and noticed that I had alot of the symptoms of Endo. I told my gyn that information and he bluntly stated "girls your age don't get endo" and that is when I changed Doctors! The new doctor was really focused and was astonished at the things the other Doctor had said to me and treatments he had suggested to me. She started me on CBCP which mad me vomit and my stomach never tolerated. I was put on the patch and it failed me. I was pregnant. I delivered in 12/04. A healthy baby girl. Since my pain got worse. It became not just a once a month thing but it lasted all month long. My back pain had become unbearable. I had a Lap done 12/06 which Endo was present. At my follow up visit I got no real Information (stage, locations of lesions) So I decided to change Doctors again. This Doctor has offered hormone therapy but I refuse. I have seen too many horror stories! I am scheduled for my second Lap very soon and I am praying that I will get some answers and relief. I have had several MRIs in the past months and Endo has not been seen of those. I I feel as if these Doctors just want patients that have no problems and come in for their annual pap. That is not the case with endo patients. We deserve attention and we deserve answers. I am tired of being told that the pain is in my head. I am tired of being sick and of the pain. We deserve much more then we have been given by our Doctors. The hardest part about my journey and my biggest fear with Endo is looking at my 2 year old daughter and knowing that in 15 years this will happen to her and there still won't be an answer!

Nancy | 23/05/2007 17:54:00

I was asymptomatic for endo prior to my diagnosis in 2005. The only indicator I had was sudden pain in my left side. Four days later, I had surgery to remove a large cyst and came out with a diagnosis of endometriosis. I didn't know what it was. My doctor gave me the old explanation of "retrograde menstruation." In a haze, I agreed to Lupron. It only caused me pain, and my doctor couldn't deal with an endo patient who didn't exhibit the usual endo pains. He kept noting how my pelvic pain was improving. I kept correcting him. He kept looking uncomfortable. When I got copies of my records from his office, I had to type up over one page of corrections. He believed what he wanted to believe. I took charge of my own treatment. I stopped the Lupron. I saw an endo specialist. I asked about diet, supplements, and anything under the sun that could help. All I got in response was an offer of drugs or surgery. The specialist I saw was not so special. In my experience, most doctors have a standard treatment that they follow for every patient and are extremely reluctant to acknowledge that people do not all conform to that same treatment. Any possibility that can help with pain and coping should be explored. Diet and nutrition *can* make a difference. I had to cut out wheat and dairy after Lupron, but I also learned that many women with endo may be sensitive to these kinds of foods. Yoga helps. Acupuncture can help. Pain management can help. Doctors, in my experience, do not tell you this. They don't know it. Even the specialist I saw said there was nothing I personally could do. It's been difficult for me to accept that I had endo, and even more difficult to hear doctors telling me there's nothing I can do about it except surgery. Talk about disempowering. It's also not true! The Internet has been my biggest resource. Through organizations like the Endometriosis Research Center and online support groups, I found out about excision (a technique used during laparoscopy). Every woman with endometriosis should be told about excision! It is our best chance for long-term, if not permanent, pain relief. Endo lesions must be cut out, not burned or otherwise "removed." Few surgeons are skilled enough to remove it all. There are three or four specialty centers in the United States that do nothing but excision. They track their patients. Long-term, only 20 percent need additional treatment for endometriosis. All of the pain I experienced from being on Lupron (which did not go away when I stopped treatment), disappeared after excision surgery. My life was returned to me because of the fabulous doctors and care I received. Excision is no guarantee, but it is the best hope. To anyone newly diagnosed with endometriosis, my advice is to educate yourself. * Endometriosis can not be seen in an x-ray. It is rarely seen in an ultrasound. It can not be seen in an MRI. The only definitive way to see it is through surgery. You need to know more than your doctors. Don't start any treatment before you've researched it. Remember that you can stop any treatment if you don't like what it's doing. Do not be pressured into something! You need to find a doctor willing to work *with* you. Keep searching until you find one. Allow yourself to feel down, to cry, to be angry. Then pick yourself up and keep going. Do not give up. Do not give in. Look for little things in life that give joy, peace, and appreciation. Allow yourself to rest. You have to treat yourself well or you won't be able to treat anyone else well. Keep trying new ways to help you deal with endo. Most importantly: Be an advocate for yourself! Be actively involved in your health and treatment and do not hesitate to voice concern and listen to your gut.

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Rhonda | 23/05/2007 20:01:00

I was always very sick since age 12 with menstral cramping to the point of vomiting. I missed school once a month for a few days. I was diagnosed at age 17 as having endometriosis, At age 18 I had a laser laperotomy to remove it so I could become pregnant(hopefully) as for 2 yrs I had been trying and nothing happened. At age 19 I tried fertility drugs and nothing. I finally at age 19 got pregnant but that ended quicky in a miscarriage with 2 more to follow. I had more laser surgery to remove more endo when I was 21. At age 24 I got pregnant and finally had a beautiful baby girl, When she was 6 months old I got pregnant again them had a beautiful baby boy. My periods after those 2 pregnancy were normal with minimal pain. When he was 2 I had another miscarriage then had another when he was 3, I got pregnant again when I was 31 and had another girl then when I was 34 we had another surprise another boy. My periods don't bother me any more and I rarely take anything for pain. I was told that the cure for endo is to Get pregnant but getting pregnant is the biggest hurdle ever. It is when I gave up that I became pregnant, without the use of fertility drugs. I just fear that my aughter will go through what I did. But I will know the symptoms.

Rebecca | 23/05/2007 21:44:00

I was diagnosed with endo in may 2006 after ungoing laprescopy surgery. I've always had somewhat difficult periods from an early age. I went on birth control at the age of 18 and have been on it since. It was the only thing I knew that would somewhat control my cramps and period. I used to get my period 2 times a month and it would last for at least 7 days at a time. The flow was heavy and the cramps unbearable, but at the age of 16 and 17, I didn't realize that this could be something worse. Last February, about one week before my period, I started having some abdominal cramping, mainly on the right side. I thought it was just pms cramps, which was fairly normal for me. But the pain never went away. Weeks after my period in February and getting ready for my March period, I still was in pain and actually they were getting worse. I started on my search to pinpoint where the pain was coming from. This was not an easy road to travel. I was sent for mri's, ultrasounds, even an emergency room visit on st. patty's day because the pain was so bad. I also was sent to a gastointestinal specialist where he proceeded to tell me that I was just constipated and sent me home with a 30 day supply of benefiber. He told me to follow up with him in a month. I was furious at this point. I KNEW I was not constipated and every doctor (total of 6) I saw, I told them that I think its coming from my ovary and I just kept getting brushed off. All I wanted to do was to see a gyno and because of my insurance plan, I had to wait until someone actually wrote me a referral. But of course, I had to get one of those 6 doctors to trust me that I knew where the pain was IN MY OWN BODY!!! It was a long 3 month process. And of course the whole time, living with the pain in my lower right side. The pain effected me in ways that I never thought it would. I am also a restaurant manager, so my work day was usually about 12 hours a day, 5 days a week and always on my feet. After dealing with my pain for 2 months, my manager had a sit down talk with me because he said that he saw changes in me. He was concerned because he knew I wasn't the same person. I was always very outgoing, energenic, and positive. 2 months in pain, constant 24 hour a day pain, I was not the same person. Once I finally got the referral I asked for time and time again, I spoke to a gyno for literally THREE MINUTES and she said its probably endometriosis. I felt such a relief because I finally felt like I was talking to someone who was listening and understood what I was going through. (At previous doctors, I was actually being told that there was nothing wrong, that it was all in my head.) My doc explained laprescopy to me and told me they were only going to make 2 small incisions (one in the belly button and one below the bikini line on the right side). I was ready! I wanted to know what this was and how to fix it! Honestly, I was unprepared. Turns out, the doctor had to make 3 incisions because once they got in there, they said the endo was everywhere. I was told in recovery that the endo had built itself a tunnel back to my intestines and there was no way for the team of doctors in the surgery room to get everything. They did use an "argon laser" to get out a lot of it, but there was definitely some left behind. The pain following the surgery was indescribable for me. I underestimated my recovery time. I thought I had a pretty good tolerance for pain, but this was tough. Makes me question whether or not I'd go through it again. My personal options after the surgery were pretty standard for endo patients. I was told 3 choices: full hysterectomy, hormone pills or shots or continued surgeries. However, I didn't like any of these choices. I was 27 when diagnosed and that is way to young to take away my whole reproductive system. The hormone shots and pills give you all of the symptoms of menopause. Again, at 27, no thank you. And finally, continued surgeries doesn't seem all that appealing either considering the pain that I was in after the first surgery. I have for the past year just been taking my birth control and monitoring my pain. Recently, the pain has come back. This time I'm more informed thanks to the internet and a couple of books I've read. I've decided to try different herbal remedies. I've found a recipe for an herbal tea that seems to help a little. But what I've heard that has helped the most is maintaining a positive attitude and yoga. Breathing excercises are the best. I am still looking for better remedies because nothing has worked completely. But with websites like this, hopefully we can continue the reseach and find a cure. Endo is frustrating, painful, depressing, alienating and so on. Everyone seems to deal with it in a different way. My way is no better than someone else's. It's just that it's the only way that I know how to deal with it.

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Katherine | 24/05/2007 04:19:00

I started having problems at about age 14. I had severe cramps that would make me vomit or even pass out. so my mom took me to see a gynecologist and they told her because I started my period at the age of 8 that my body didnt know how to handle the pain and that my pain tolerence was just low. by the age of 16 my periods were lasting up to two weeks and the doctors were telling me that my pain was all in my head. the whole time my mom was nothing but supportive she had gone through the same thing as a teen. By the age of 18 I had been exsisting soley on high powered pain med like hydrocodone. Finally a doctor decided to do a lap to see what was going on. because even on B/C my periods were lasting whole months and were heavy causing me to be anemic and very weak. After surgery the doctor diagnosed me with stage 3 endometriosis. He said he'd lasered most of it off and that it was on my bowels, bladder,uterus,overies and along the wall of my abdominal cavity. I felt relieved that someone was acknowledging my pain was real and the torments I had been through. I felt better for about a year then it came back in force. the same doctor began pushing a drug called lupron telling me I would feel better instantly. reluctant but tired of not being able to function normally I agreed I wish I never had the drug made things worse the first two weeks something they called a "flare" he had neglected to tell me that. and many other things I was 19 at the time and things just kept getting worse. finally one night it was so bad that I was rushed to the emergency room and he did another lap. but there were complications. during the surgery he hit my Illiac vein and punctured the Illiac artery causing me to bleed out and code on the table. after that I was put back on the depot shot imediately after surgery with no hormone add back therapy and when I began bleeding profusely through that was put on Yaz as well. none of this has helped and because of the lupron and all the scar tissue they are now saying that at the age of 21 it is a 10% chance that I will be able to carry a child. I have recieved no more treatments and am back to living off of high powered pain meds just too try to exsist normally which is impossible to do. my family have been great supporters encouraging me to keep going even when depression and the disease have taken their toll on me. I am now part of an online support group and encourage my friends too stay strong that have been diagnosed with it, but I myself am at my wits end. when will the pain stop? am I going to be able to have children? Is this going to be a problem in a relationship? I just hope someday all of these problems that plague me and many like me will no longer plague others. I am 21 and currently at stage 4 endometriosis.



Alison | 24/05/2007 05:22:00

-How long did it take and by what process were you or your family member diagnosed? Suffered for 20+ years because there seems to be a perception that painful periods are normal. Finally had diagnostic laparoscopy when ovarian cyst pain became constant. • How well prepared were you or they for the outcome? What kind of support were you or your family member given by healthcare professionals, patient support groups, family and the community around you generally? - I knew there was something called endo which gave you bad periods. Family members experienced denial because they didn't want their little girl to have an incurable disease. Surgery with unqualified ob/gyn made things worse. Further symptoms dismissed by dr & staff. 2 further surgeries required. No support from community. • Do you feel there is a stigma attached with Endometriosis? If so why and what can be done to overcome it? Definitely. You don't look sick. People see you on your good days when you seem to be ok, therefore if you are not working or doing something with your life that society thinks you should, you are lazy. Education -- of the public, and of drs -- could help to make people understand the life-controlling nature of the disease. More publicity needed; people need to stop being afraid to talk about "female problems" in public. • How effective is the treatment you or they are provided with? Surgery #1: utter failure, made pain worse, created a mess. Dr was a general ob/gyn who should not be treating endo. No relief. Surgery #2 following year: endo specialist; better atmosphere & relations with patient; only a few months' relief. Surgery #3: Had to travel out of country for super qualified surgeon. Hysterectomy. Now in remission. • What advice would you give to a woman who had just been diagnosed with Endometriosis? EDUCATE YOURSELF EDUCATE YOURSELF EDUCATE YOURSELF Learn as much as you can about the disease & treatment options, from reliable sources (drs' websites, medical journals). Read, read, read. The more you know about the disease the better able you will be to figure out which treatment option you might have some success with, & be comfortable with, & you will feel more in control of things. Education is your best defence against the hordes of ignorant health care "professionals" who are still using outdated information or dispensing drugs that are not cures, willy-nilly. Education of drs is needed. The information is out there. The patients know it. Many of the endo veterans out there know more than their drs. Why are gynecologists & surgeons not better informed about this disease? WHAT are they teaching them in medical school? This might be where the treatment revolution needs to start.

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Rebecca | 24/05/2007 18:00:00

I was diagnosed with Adenomyosis in 2005. Before the diagnosis I had suffered from ovarian demoid cysts, with two rupturing. I was having a lot of spotting throughout the month and my periods were extremely heavy with enormous blood clots. I was experiencing bloatness that would not go away and my clothes were beginning to fit tight. The worst of my symptoms was the lower back pain and I was convinced i had sciatica but when I went to the Chiropractor, he had stated that I did not and that maybe I should get my uterus checked out and maybe it had something to do with my dermoid cysts. I finally went to a new gyno who diagnosed me almost immediately with Adenomyosis. My uterus is very large, squishy, and pressed up against my back, which explains my unbearable back pain. He did an utrasound which showed my ovarian cysts and we scheduled a laproscopy surgery. The surgery went well and all cysts were removed and he removed the endo around my uterus. I felt like a brand new women for the first five months after surgery. I had energy, I didn't feel bogged down. But after the five months, I knew the tissue was growing again inside my uterus because my energy level was decreasing and I began having uterine pain. My doctor put on the birth control pill and so far it has helped with my symptoms. I have come to the conclusion that the more I work out, the better I fee. I play bankded track Roller Derby and it's a pretty intense workout and environment and I feel great and my back pain no longer bothers me. It's when I take a break from skating that I feel crummy. When I can't skate, since I am a mother of two, I try my best to do somthing else to keep my body moving. I haven't changed my diet but intense exercise works for me and takes away my worst symptom..lower back pain.

Janis | 25/05/2007 15:08:00

I was not diagnosed with endo until I was 28. One year after I had my son. I had been having terrible cramping for 10 years or so, but was told it was normal by my family doc. At times I could not stand let alone go to school or work. I had never seen a GYN. When I was 20 I had my first child and the pain went away during the time I was pregnant, but came back as soon as my cycle began after giving birth. My second child came at the age of 27, which was delivered by c-section, and still nothing was ever said to me about endo. I went to a GYN because my husband and I wanted to have my tubes tied becuase I was sick of the pain, and it was the only thing I could think of was to get rid of the period. I went through a laproscopy which was extremely painful and was told I had endo. They treated me with Lupron, which almost made me insane. I was extreamly depressed while taking it. I couldn't function as a person, wife, or mother. This also did not help the symptoms. Finally my GYN suggested that I could consider a hyst. and very flipantly suggested that I might want to look up what is involved with it. In no way did SHE every tell me what it was, what would happen, or the seriousness of the situation. I looked up hyst and spoke to a few people about it. I was not truely informed of the consequences until I experienced them AFTER my total hyst. Which was a shock, as the GYN said that she should not have to do a total. But after the surgery when I woke up in the hospital with stitches accross my abdomen she said that she was unable to save anything and it was the worst case she had ever seen. That my abdominal cavity was basically a solid adhesison. I still to this day have no idea what she actully did, or did not do. There was no great explaination, or even coded explaination. I was once again treated with Lupron, which once again made me crazy, and so did the hormones they gave me to take place of my overies. So I went off all treatment and went into surgical menopause about 2 months after. And I am still there. I am just within the last few months starting to be able to find out that I am not the only one. That I am not crazy and that this is a quiet epidemic that is running accross America. There are support groups on line, but what to do if you don't have internet these days? Most local hospitals wont even acknowledge endo, let alone have a support group for it. And if they do acknowledge, they certainly don't inform you of the facts. I urge all women to get a second, third, fourth, and fifthe opinion. Get the facts. Talk to MANY people who have gone through it. If you are suspicious that something is wrong, research your GYN and know that they do not have a problem diagnosing these types of deseases.

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Lynn | 26/05/2007 04:58:00

I was diagnosed with endo in 1997 at age 18. I started menstruating at age 12 and I had periods that would last for up to 7 days in the early years. My periods were always accompanied by severe cramping, vomiting, diarrhea and/or constipation. I went to several doctors none diagnosed endometriosis, I was continuously told that it was normal to have such pain. Around age 16, the pain would start about 2 weeks before my period. I was in so much pain I was in bed for hours. I went to bed in pain and woke up in pain. I eventually went to a female gyn who recommended a sonogram. I was told I had an ovarian cyst. A different gyn (male) did my surgery and when they went in they found adhesions on both ovaries. The endo had stretched from the left ovary over to the right ovary. During the surgery (laparoscopy), the doctor removed half of my left ovary and a quarter of my right ovary. I was diagnosed with stage IV endometriosis. After the surgery I was put on 6 months of Lupron. I was symptom free (mild to moderate pain with some periods) for about 8 years. Last November, my abdomen started to bloat. I thought it was gas because I had been chewing gum profusely. However, the bloating continued and no gas medicine worked I went to the hospital and had an X-ray, nothing was visible. After 3 days of being bloated, I ended up in the emergency room where an MRI showed that there was a bloody mass attached to my ovary. The doctor told me that he would have to remove my left ovary and fallopian tube. I was in shock but agreed. The next morning he recommended me to an endo specialist. I was given pain meds and sent home. I am currently in a study where I have taken Lupron for a second time and I am currently on aygestin. My stomach was so bloated that people thought I was pregnant. It took 4 months of treatment with Lupron for the bloating to go away. I did not have the surgery but may have to in the future.

Kim | 27/05/2007 00:49:00

I had my first period at 13 and have always had cramps. I started having minor pain in my left side at around 17 or so, but my doctors just brushed it off. I was on birth control pills from 19 to 28. At 29 or so I started having very bad pain which progressed to vomiting and almost passing out by the time I was 33, but my doctor passed it off as PMS and told me to take Advil. When I was 35 I was diagnosed with an ovarian cyst, and during surgery to remove it they came up with a diagnosis of endometriosis. (I had to request that they remove the cyst since I believed I had endometriosis and the only way to diagnose it is surgically. I was also missing a lot of work, and didn't want to take the 'wait and see' approach that my doctor was recommending.) So all told, it took almost 20 years to diagnose, but I was only experiencing bad pain for a few of those years. I was well prepared for the outcome, but that's due to my sister (who also has endometriosis) and on-line support and information groups. I had to diagnose myself before I had the surgery. When I told my gyn I thought I had endometriosis and that my sister and aunt had it he said that yeah, maybe I had it, and that I should take Advil. He did not discuss what it meant to have this disease, nor what treatments there are. My surgeon (a gynecological oncologist) on the other hand was very supportive, but he didn't give me much information. When I came out of surgery he said I should take Lupron followed by BCP. He didn't talk about any of the side effects. When I said I didn't want to use Lupron he said 'oh, because of the side effects', but I only knew about them from researching online. I also didn't want to do BCP because I was trying to get pregnant and he had nothing else to offer nor any referrals to someone who could help. I wouldn't go so far as to say there's a stigma associated with endo, so much as a cloud of secrecy. My aunt was diagnosed with endo when I was 9 or 10 and all I was told was that she was having 'women's problems'. My sister was diagnosed when I was in my early 20's and was prescribed Lupron when I was in my mid-20's. But even then she didn't talk about it. She mentioned it once when we were on a long car ride (don't need to make eye contact) as something I should watch out for, but she didn't feel comfortable talking about it until I was diagnosed almost 10 years later. I find myself perpetuating the cloud of secrecy. I took time off work for my surgery but most of my co-workers thought I had gone on vacation. I think the only way to resolve this problem is to advertise this disease. No one seems to have a problem talking about breast cancer these days, but it used to be a taboo subject. My treatment (laproscopic surgery) was short-term effective. After 5 months the symptoms are starting to return. My sister found her Lupron treatment very effective: she had 7 pain-free years but she has suffered from side effects. My advise to anyone diagnosed is learn as much as you can and research everything your doctor tells you, especially about any drugs he want to prescribe. Of course, if you've been diagnosed you probably know more than most of the doctors anyway since most of them seem ignorant of this disease. (My gyn thought it was normal PMS to be vomiting, constipated to the point where a bowel movement every other day was a victory and in terrible pain.) Also, from reading what other ladies have written, I would suggest seeing a psin specialist if the pain gets too bad (fortunately I'm not there yet).

Janie | 28/05/2007 06:11:00

I began having pain around the age of 14, approx. two years after my first period. It was bad enough for my mom to take me to the gyn. Unfortunately, the doctor didn't even take the time to figure out what was causing the pain, she just blindly put me on BCP. I was on BCPs until I was 22. The pills worked for a long time but they started making the pain worse which is why I quit taking them. I had one full year of not having a period after I quit taking the BCPs. I felt GREAT! Then, I finally had my period and it was pretty awful. Before I got married at the age of 25, my new doctor asked me to try BCPs one more time. When it didn't work, she wanted to find out what was going on with me. So, I went in for a laparoscopy. She found free fluid and endo adhesions. Since BCPs did not work for me, my doctor didn't know what to do for me. I was given some pain medicine. I did some research of my own and tried acupuncture. It worked really well for a long time. This past year, the pain came back and acupuncture isn't working too well. Now I'm trying myofascial release along with the acupuncture. I'm slowly seeing results. I'd love to see the medical community find out what is causing this disease. It seems like such a mystery. It causes so much pain to so many women. I would also like to see a pill or something that we could use that doesn't cause so many weird side effects--like osteoporosis, weight gain, mood swings. I don't want to take medicine that causes another whole list of secondary health issues. Thankfully, I do enough research on my own that I haven't fallen for that type of medication. I've heard horror stories from people who have taken Lupron and other drugs. Anything you can find out about this disease would be great. Please help us!

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MJ | 30/05/2007 15:25:00

I was diagnosed in November 2006 with Stage IV Endometriosis. I started menstruating at the age of 11. Not even a year later I started experiencing discomfort in my right hip bone. My GP sent me for many US’s and found out I had ovarian cysts. I was immediately prescribed Birth Control Pills, which seemed to do the trick. I had no pain, and was fortunate that my periods lasted less than 2 days. When I was 19, I married and we decided I should go off the pill and try to conceive. A year later, I finally became pregnant. At the age of 21 I gave birth to a beautiful little girl. Shortly after having my daughter by Cesarean Section, I went back on the pill when I felt the onset of pain in my hip bone again. I had little or no pain, short periods, everything was fine. Until I discovered I had venereal warts, brought on by HPV. After having the warts removed, I was diagnosed with Dysphasia and had to undergo LEEP to remove it, all done by a obgyn/fertility specialist. I re-married in June 2004 and immediately went off the BC pill, since we desperately wanted more children and we were both in our early 30’s. I just assumed that since I had already had a child that it would be easy to get pregnant, maybe even be quicker than last time. Almost immediately the suffering began. My legs and arms would ache, my back would ache or lock, I suffered severe bouts of PMS, my flow became heavy, and the cramping and rectal pain was excruciating! The hot water bottle and heating pad became my constant companion. My female GP gave me the song and dance about it being part of being a woman, it was completely normal and should subside in a few months once the BC pill wore off. I changed GP’s shortly after that. After a year I decided that a referral to a Fertility specialist was in order. I requested the referral to the specialist that had done my LEEP procedure as he seemed very competent and experienced. He had me temp and chart for over a year, and put me on Serophene (Clomid) to stimulate egg production. I had numerous blood tests, US’s and trans vag’s. In the mean time the pain was becoming intolerable. Every 2 months when I went into see him, I would try to express just how badly I was affected by the pain and he always blew me off. It never clued into him that this could be Endometriosis. At one point, in July 2006 when I went for my regular check up with the specialist, he mentioned that he’d give it a few more months and then we’d talk about scheduling Laparoscopic surgery to investigate the possibility of Endometriosis, if I still wasn’t pregnant. This freaked me out! I did some research and spoke to women that have suffered from it and decided that if I waited, it could be well in to 2007 before I had answers and results. I called my specialist and insisted on having the Lap scheduled asap. I also had to insist on having any Endo he might find removed, as he wanted to just “look around” and I felt I couldn’t afford to miss that much time off of work when I could have the whole thing done at once. The specialist was adamant that I probably didn’t have Endo through all of this, and still continued to prescribe the Clomid to me. Just before the surgery in November 2006, the pain finally left me no choice during my period but to be put in the hospital for the night. Demerol eased the pain slightly, enough for me to get some much needed sleep. As the days approached leading up to the Lap, I became very anxious. I was afraid of not waking up, of what they would find, of what irreparable damage they might do to me. It was every bit as traumatic as I had feared. My specialist was an hour and a half late getting to me, which meant I was beyond starving (fasting for over 15 hrs) with a migraine to boot. The Anesthesiologist had me sobbing on the table as he put me under as he felt it was his God given right to belittle and berate me about certain medical choices I had made. And of course, the specialist didn’t have the time to do anything extensive. I was lucky that he decided to drain a chocolate cyst he found. He spoke to my husband while I was still out and my husband was just devastated! For me and us. Shortly after I woke, the specialist came to see me. I didn’t fully understand what he told me, just that I was “a mess-worst case I've ever seen”. He said he hoped I had a good drug plan and walked away. My husband held me as I sobbed uncontrollably. The specialist had also told my husband, not me, to discontinue taking the Clomid. That’s when I realized how badly he had messed up. During the weeks that followed, I researched every ounce of literature I could get my hands on about Endo. I came to the realization that I had displayed many of the numerous symptoms that occur with Endometriosis. Diarrhea, constipation, severe pain, sharp pains in rectum, aching in back and limbs, fallen arches, severe PMS, headaches, immune problems…the list went on and on. Looking back, it’s quite apparent that there are other females in my family suffering from Endo too, including my sister, who after many years of complete torture, was diagnosed with Fibermayalga and Chronic Fatigue Syndrome. She has bladder problems, painful periods, etc. I endured family and friends advising me to have a hysterectomy and “get it over with”, to move on, it wasn’t worth it. Or maintaining that we “just relax and let it happen” like we had a choice. But, this is coming from people that are either done having children, or haven’t had any with no plans to anytime soon. Still, the emotional pain and heartache this caused me was profound, to the point that I have withdrawn from quite a few family and friends just to keep some semblance of emotional control. A few weeks later I saw my specialist for the results of the Lap.Stage IV. Total obliteration of the Cul-de-Sac. My ovaries and fallopian tubes are attached to my uterus. He suggested we immediately start IVF. My husband asked about the pain I had. The specialist said “OH yeah, I forgot about that.” I wish I could forget. He said that my only option then was to have a Laparotomy to remove as much endo as possible. Right now there is a 0% change of pregnancy. There may be a 40% chance after the Laparotomy. All this time wasted. When I asked about the rectal pain and the possibility of my bowels being affected too, he decided to have me go for a Barium Enema. The Barium Enema led to a Sigmoidoscopy. Though the Endo hasn't punctured my bowels, there is compression and tightening. This would explain my intestinal and diaphram pain during my period. I was given Zolodex in January 2007 in preparation for my Laparotomy, in hopes that it would loosen my ovaries up enough for the Specialist to work on them. After serious thought, I made the decision to search for a new specialist, one that specializes in Fertility and Laproscopic surgery. This led me to the SOFT Clinic in London. After one meeting, the specialist decided it would be best for me to be referred to one of the best Laproscopic surgeon's in Canada, Dr. Vilos. I am scheduled to meet with him late June. In the mean time, the surgery has obviously been put on hold, and as it turns out, I should never have been given the $1200 injection of Zolodex, as it's normally given after surgery to keep the endo at bay. On a positive note, the Zolodex has stopped my periods, so I am relatively pain free for the time being. However the severe side effects of the medication are taking a toll as well. Hot flashes, night sweats, memory loss & confusion, heart palpitations, migraines, nausea and vomiting, dizziness, et el, are just some of the side effects that I put up with on a daily basis. Needless to say my journey is far from over. There are still options available to us for having children of our own, or so we’ve been told. That’s my top priority, at least for the time being. Ask me again when my period returns. Both my husband and I have discussed Endometriosis with friends and family. Some think I’m full of it, that I’m a wimp or exaggerating. There is a stigma that; a) It’s a woman problem so it should be taboo to speak about b) They can’t see it, so it doesn’t really exist c) There are many people, including medical professionals that don’t believe that a lot of diseases exist, that they’re excuses for not wanting to work or live, and Endo seems to fall in to this category for them, and lastly d) It’s not terminal, it won’t kill you, so it can’t be that bad. I think ultimately women should be comfortable with what their bodies are telling them. You know if something’s not right or normal. And medical professionals must start taking the female anatomy and it’s complaints more seriously. The majority of us are not crazy, lazy, hypochondriacs, or low pain tolerance people. We need compassion, expertise, sympathy and advocates to actually do something about a disease that affects so many of us. If someone’s just recently been diagnosed, the first thing I’d say is “I’m sorry this happened to you.” A hug is another good place to start. Then I’d advise her to do all the research she can, whether it’s the library or on line to find out what her options are. That way she’s walking into any situation with her eyes wide open. Join an online group or support group in your area, if you can.

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Valerie | 07/06/2007 19:30:00

I began feeling severe pelvic pain in October of 2004 at the age of 22. My ObGyn at the time told me that the pain was due to a STD, Chlamydia, and simply treated me. I was never actually tested for or diagnosed with the STD. Still horrified to think I had somehow contracted a STD and after months of persisting pain, I decided to visit a primary care physician. This was now early January 2005; after blood test, ultrasounds, x-rays and a very long and detailed discussion of my pain and history, my PCP told me that I never actually had the STD. He then referred me to a new, more creditable ObGyn who specialized in pelvic pain. He believed that I had Endometriosis but would need to perform a laparoscopy to be certain. By this time the pelvic pain had become debilitating, so my surgery was scheduled for just a few days later. I was told the surgery would be only 2 hours and I would be going home the same day. I wasn’t scared; I was just so desperate for someone to find out what was wrong with me. Coming out of the anesthesia, I remember every inch of my body hurting; it felt as if my chest was being ripped open. I was dry heaving, shaking, and crying. They decided against letting me go home that day because they said I wasn’t handling my emotions well. I kept telling the nurse that I couldn’t breathe well and it felt as if my lungs would not expand all the way. She told me it was a side effect from the nitrous oxide and injected me with more Demerol for the pain. That only made it worse though. I soon signed papers refusing pain medication in fear that it was doing more harm than good. Eventually, the nurses got annoyed with me complaining about the breathing problems and stopped responding to the call button. I laid there for what seemed like an eternity trying my best to just concentrate on breathing. At one point, I thought to myself that I was going to die. Thankfully around 8pm, about 6 hours after my surgery, there was a shift change in the nurse’s station. The new nurse came in to introduce herself to me and immediately recognized that I was having a serious allergic reaction. The next thing I knew, I had tubes down my nose & throat and wires all over my chest. If I could go back now, I would thank that woman a million times; I honestly believe that she saved my life! After returning home, my ObGyn confirmed that it was Endometriosis and prescribed me to continue on my regular birth control, but to skip the placebos. Instead, I was to start a new pack every three weeks. This was in an attempt to stop the menstrual cycles, therefore stopping the development of the lesions. This worked for a while, but then the bleeding started again and my dosage had to be increased. This continued every 4 months for about a year. Finally I was put on Necon 1/35, which contains only progestin and estrogen. At last, the menstrual cycles had stop and the pain became bearable. The pain never completely went away with the Necon and I always had discomfort, but compared to what I had been through before, I was good enough. I had a horribly weak immune system though and I was always feeling tired and irritable. It was obvious to everyone, or so I thought, that I was sick. I was very angry about my condition and never wanted to talk about. I just wanted to be normal and healthy. I hated the pity and sympathy, to the point where I stopped talking to anyone who would so much as mention my condition. I even stopped visiting my ObGyn because I believed that he was keeping me sick. I thought he was lying and I didn’t need surgeries and procedures and medications. My PCP was the only one I would trust and the only doctor that I wanted to see. In August 2006, my PCP had finally convinced me to go back to a specialist for a follow up and even offered for me to go to someone new. I visited this new ObGyn, and so many of my fears and suspicions had been put to rest. She was so kind and understanding. The most optimistic doctor I had ever met. We talked about my diagnosis and misdiagnosis, my surgery, fears, concerns, and having children…she was so informative. In early November 2006, the pain had come back and worse than even. I went straight to my ObGyn and once again was scheduled for a laparoscopy. I was so terrified after what had happened last time. I even wrote out a will and letters to all the people I loved, just incase I didn’t come home. On December 22, 2006, at the age of 24, I went in for my second surgery. I made sure I spoke with the anesthesiologist before hand and told him about my allergies, and then called my PCP’s office and had him speak to the anesthesiologist and the recovery room nurses. He even requested for someone literally standing there watching me until I was released. When I woke up from the surgery; sure enough there was someone there and I was breathing ok. I went home within 1 hour of opening my eyes. My ObGyn showed me pictures of everything, even gave me copies to keep. She said that the Endometriosis is definitely still there, but that I also have Adenomyosis. There was no way they could get to the lesions to remove them…therefore, they can’t stop the pain. The good news though, is that everything else looked good and they believe that I can still conceive. Actually, it was recommended for me to have a baby as soon as possible. Not exactly the advice or remedy I was looking for, so I went back to the Necon and continued my battle. I’m allergic to all pain medication, so everyday has an uncertain beginning and ending. I can honestly say that not a day goes by where I don’t feel some amount of pain. Growing up in South Florida, I compare my Endo pain to our weather. Completely unpredictable! Some days are beautiful, other days; you don’t even want to open the windows. I rate my pain the same way we rate our hurricanes down here, with categories. Most days are a category 2, with category 3 winds every now and then. About once every week or so, it’s a category 4 or 5. Those are the times when it hurts so bad I can breathe, move, or talk. The times when I cry out to any high power that’s listening; begging and pleading to make it stop. The times when it literally fells as if I am being stabbed repeatedly through my uterus. To any woman who has endometriosis, my advice is this. Don’t ever be scared to talk to your doctors, even if it seems like you’ve said it a million times. Share your concerns and make sure you understand everything they tell you. Then research everything that they tell you. Always get second, third, even fourth opinions. Don’t ever feel ashamed that you have this disease. You’re a warrior because you live with this! It’s ok to cry! Its ok, to say it hurts! Educate people; both men and women…make them understand that this is not just cramps! Finally; know that you are NOT alone! There are so many of us out there.

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Lori Beth | 10/06/2007 00:02:00

I was diagnosed with Endo when I was 25 years old. For approximately 3 years I had been in my doctors office every couple of months complaining of fatiigue,"feeling sick", and being really letharrgic around my period. I had no pain or any history of irregular or heavy periods. My OB insisted I was depressed and sent me away each time telling me to get on with my life and that I was too young to be so sad about things. This went on for several years until I moved away and got a new doctor. I had internalized what my previous doctor had said and did not bring it up with my new doctor becuase I thought it was "all in my head". After a couple of months a large bump formed over my right ovary that was visible from the outside of my body. The new doctor was concerned and asked my why I had let this go on for so long. I told her my story and she sent me to get my first ultrasound. They found two large masses that together wieghed over 10 pounds on my ovaries. I had surgery and they were removed, leaving behind massive amounts of scar tissue. I was told at my post op visit to have a great summer and not worry about it. I moved again and went to a doctor several months later only to find out I had to have more surgery becuase the endometriosis was back. I had surgery three months ago and am taking hormones and trying to get pregnant. I have my fingers crossed about that becuase of all the scarring, but my doctor says I have a good chance and I am excited. I have a lot of support form my husband adn friends; I can tell they want the best form e and understand when I am stressed about it. There is somewhat of a stigma about it becuase it as to do with female anatomy and sex organs and some people are uncomfortale about that.I would say to any woman who has this that they are very strong and there is help and support available. However we find our support and way of dealing with it is individual , but we are meant to live the lives we have and we know somewhere inside of ourselves what we need in order to heal ourselves from the emotional and spiritual stress this leaves.

KS | 13/06/2007 17:05:00

I was diagnosed in 1999 after having symptoms for 12 years (my symptoms started when I was 16). I went to the doctor regularly during those 12 years and told various doctors about my symptoms, but they would say things like, "Well, some women just have bad periods. Try taking birth control pills." I was only diagnosed after I got so sick I had to be hospitalized and have surgery. I had a completed blockage of the rectosigmoid colon, caused by an endo growth that adhered my colon to my uterus and cinched the colon closed. Initially, I had no idea what endo was. My doctor gave me some very brief information about it, but my family went online and printed off a bunch of info. My husband found out about the Endometriosis Association, and I joined a local support group. That support group was really my lifesaver. I'm glad I found out about the group myself - I never would have heard about them if I relied on my doctors. Yes, there is definitely a stigma. First, there's the fact that in order to even explain the disease, you have to talk about uterine tissue and the menstrual cycle - something that causes a lot of people to start slowly backing away from you! Secondly, there's the whole infertility issue associated w/endo - this also makes people uncomfortable. Finally, there's the incorrect, but prevalent, myth that menstrual pain is "normal" and that if you complain about it, you're just a whiner (a view I think my doctors - both male and female - had). As far as overcoming this stigma, I think the best way to fight it is education. We have to get the word out so people know the facts, especially so they know that menstrual pain is not "normal." My treatment has been fairly effective - in that it has controlled my pain - although at times I feel like it's been of the "So your thumb hurts? Let's cut if off!" variety. I've taken birth control pills, Provera, Lupron, Femara (letrozole) and had excision surgery. Provera and Aygestin (both sythetic progesterones) have probably been my preferred treatments, in that they stopped my periods and pain and had the least side effects. I have not had a hysterectomy, although I have been strongly urged to do so. Of course, I still have endo, and face the prospect of being in medically-induced menopause until I reach natural menopause. To women who have just been diagnosed, I would advise you to read as much as you can about endo -educate yourself - knowledge is power. In the US, the Endometriosis Association and the Endometriosis Research Center are good places to start. We would like to think that we can trust the doctors to tell us everything we need to know, but the truth is that they either don't have the time and/or the inclination to do this. Let's face it - unless they are an endo "specialist," (and most Gyns are not endo specialists) they are probably not staying current on the best treatments for endo. Women w/endo need to be their own health advocates. Join a support group. Join a support group. Join a support group. I'll say it again - join a support group. If you don't have one in your area, start one. Again, the Endo Association and the Endo Reseach Center can both help you with this. Even if you think you're not the "support group type" - join a support group. Sharing your experience with other women w/endo, or just listening, will help you more than you realize. Finally, remember that YOU have a say in your treatment. You do NOT have to follow a course of treatment simply because your doctor recommends it. Your doctor can recommend treatment for a disease, but you are more than a disease, you are a PERSON, and what your doctor feels is the best way to treat a disease may not be best for you as a PERSON. Don't be afraid to do your own research and ask questions about the side effects and effectiveness of any treatment. Ask your doctor what percentage of his/her practice is made up of endo patients. Ask how many endo surgeries he/she typically does in a month. The answers to these questions can be real eye-openers and help you decide if that doctor is really the best one to be treating your endo. If a doctor balks at answering these questions or refuses to answer, that's code for, "I'm not very experienced at treating endo but I'm afraid to admit it."

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nicole | 26/06/2007 14:01:00

I'm 25 years old and just now finding the right doctor to treat my endo in Atlanta GA at the cec (knowledge is the key).I've had four surgrie and not until the 3rd one I started filling normal and with out dieing pain. It started when I was 18 years of age and always having doctors telling me either its all in your head or its normal(don't take that as an answer). If you are in pain its not normal and if you have to do your research and ask questions until you are happy with the response. Its your body so take care of it. I'm just now recovering from my fourth surgie and finally had to take out my right ovarie and tub, hope this is it.

Laura | 26/06/2007 19:00:00

I was diagnosed in 11/99 with endo. (I was 26) It basically started when I started dating my husband. I was experiencing extremely painful periods and pain during sex. I consulted my GYN who asked me several questions and determined he thought I had endo. He immediately scheduled me for a laparoscopy. Upon doing the surgery, his conclusions were correct. Thankfully, I was only stage 1. He removed the endo and said it might come back. Well, it's been almost 8 yrs since that surgery and I am now experiencing the same pain. I have a new GYN (my old one closed his practice, much to my dismay) and I really wanted her to maybe do another lap....she said no. So, I am now in search of a new GYN. I didn't get depressed when I initially was diagnosed...my old GYN was great with keeping me informed. But, now after 6 yrs of trying to have a baby, I am depressed. The endo isn't the only culprit I'm sure, but how would I know when my GYN won't do anything. I found out a few years ago that my right tube is completely blocked. By what, I have no idea because my stupid GYN won't do anything. She claims I can still get pregnant with one tube. What kind of stupid logic is this? So, now I'm on a quest to find another doctor, one that is willing to hear me out.

Carla | 25/04/2008 20:33:00

I was diagnosed with endo by lap in april of 07. I was 21 with that diagnosis. I had always had extremely painful periods. It took probably 6 years of complaining before doing an ultrasound where they found a large cyst on one of my ovaries. The doctor did the lap and removed the cyst and the endo. I was on lupron for 3 months and doing okay for about a year. I started having the same problems again and my doctor wouldn't listen to me because it's only been a year. I went to another doctor and had an ultrasound. I have another large cyst on my other ovary. I'm in pain a lot lately, I don't go out much. I've found a lot of people (even family) to be not very understanding. I try to stay positive and do what I can when I'm having good days. On bad days, I try to pamper myself and rest and try not to feel guilty. I know there worse things out there that I could have so I try to keep telling myself that. I've gone through many emotions after being diagnosed. It's good to read books and get involved in a support group, so you can be educated and find those you can relate to.

Donna | 25/04/2008 22:02:00

I was thirteen when my periods began. From the beginning mine were very painful and heavy. I noticed that the other girls weren't having the problems that I was experiencing so I just ignored the pain. January, 2004, I began to have incredible pain in the pelvic area and a period every thirteen days. An ultra-sound found a cyst that had burst on the ovary. My gynecologist tried to gain control of the pain with birth control pills. She also did a lot of testing, only to find each time everything was normal. I kept thinking normal? How can everything be normal with all of the pain that I was experiencing?In June, 2004, the doctor went in laprascopically and found a cyst on the ovary and endometriosis. The doctor drained the cyst and just cauterized the endometriosis. Her next step for me was Lupron Depo shots.I was devastated with the news of the disease and I began researching on the internet. I even checked out a book from the local library only to find that it was so stone-aged and of no help. I joined the ERC yahoogroups and found some really helpful information. I also became very depressed for at least a month upon reading the experiences of the other ladies.My next step was to locate a specialist for Endometriosis. I began seeing the new doctor in January, 2005. I found this new doctor to be extremely knowledgeable, helpful, and very caring. He did a sonogram and found a cyst, that the previous doctor had drained, was now very large. He first wanted to try to dry up the disease by trying Augestin. It was suppose to stop my period for a short time. I was on it a month and had a month long period.The next step was Danocrine. It did stop my period and shrunk down the cyst to 2 inches in diameter and also elevated the liver levels, so I couldn’t take it. The cyst burst on its own two weeks later. Next step, a cat scan and possibly doing excision surgery. The cat scan, as expected by me, didn’t show anything out of the ordinary. The doctor suspected that I had Adenomyosis in addition to the Endometriosis.The decision was tough to make. I was 37 and I had always wanted to carry my own child and didn’t have one. The only option to now have a child was through Invitro and my husband and I couldn’t afford that and our insurance most surely wouldn’t pay for the procedure. After a lot of research, I decided to go ahead and have the hysterectomy and to keep in mind that I was stopping the disease and not passing it on to the next generation in my family. On January 13, 2006, was the day my hysterectomy with excision surgery was done. I stayed in the hospital for three days and then stopped all pain medications when I got home. The pain before the surgery was so much so that the pain after the surgery was nothing. The lab results confirmed the Adenomyosis. Discovered during the surgery, the Endometriosis had connected one of the ovaries and the colon together. Also, dried up Endometriosis had been found, the Danocrine did do something. I had a remarkable recovery. Here I am over two years later and I am doing wonderfully. The pain and the disease are now no longer controlling my life. My life during the two years that I suffered was horrible. I basically only had one good week a month and that is if you called it good. Each day I drug my self out of bed, to work, home to the couch, then bed, and then the routine would begin again. That one good week was when the house keeping chores was done but I couldn’t do it all in one day, I had to drag it out over the entire week. During this ordeal, my husband, parents, and sisters were all very supportive. My husband was wonderful. He attended every doctor’s appointment and did research on his own. He vowed to not have sex with me because he was so afraid of causing me pain until I was completely healed. He pitched in and did a lot of needed chores around the house. He was an excellent nurse during my recovery from the hysterectomy. The rest of my family lived many hours away but called a lot and was present for both surgeries.I have moved three hours away from my doctor but still see him once a year. It is worth it for me to have him monitor all the hormone levels. I still fear the return of the disease but feel under his care, the chances are slim. My advice for any newly diagnosed Endometriosis patients is research. Research to gain a better understanding of the disease and research the doctors to find one that can do excision surgery and is very knowledgeable in the field and don’t give up hope.

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Pat Khodab | 06/05/2008 18:42:00

Well, girls my best to all the women are passing true this decease, thas is really bad, Im from Mexico, and in here as well as United States the women had the same feelings. I did past true two surgerys the first one hysterectomy with excision they find out adenomiosis so they went to remove my cervix my uterous one ovarium and they did keep 1 because my hormon production at this time I was 45 year old , (do you have to considered the all women with adenomiosis they are at some point carring endometriosis) so.... next I did have another surgery made two month later, I was on stage IV they did an open surgery the removed the last ovarium, the apendice, a tumor made of endometriosis on my colon 5 cms. 35 cms long bowel, because the endometriosis stick on my bowel walls, and they removed too linfatic noodls. I did past for the most awfull pain in my entire life, I did have a boy 14 years ago, they told me I never will be pregnant because of my endometrioAny way I did got pregnant, and was the only child I did guive a birdth ......but they said that after this baby born I did wake up the monster....jajaja.....the terrible endometriosis Is because we carry this desease since we are born, incredible, but is true......another think I did find out, is that the endometriosis is feed by hormons......I didnt know!!!!, other ways I never in my life will be taking the birth control pill,And I did it, what happen.....I did feed the monster and developed as much as to take out of my body as much damage as it did it.....wellGirls.....the secret....is do not have any hormons........change your diet......Since my surgery 5 monts ago all my diet is not oily foods, not dairy products, not soy products, not weath products, no sugar products, not read meats...only you cold have bread or cereal made of corn or rice, you could have withe meat like chicken or fish, and sometimes shrimp, plenty of vegetables and fruits preference all greens incluidin the green tea.This was the best for me, I did took as all women are passing true this surgerys drugs to handell it.But now, no drugs, no birthcontrol pills.....!!!!welcome to my life!!!!.....Im very happy, the past weekend I did have made lab test, enma clolon, ultrasounds, every you named it and everything until now is clear.......so the doctor told me the women with this problem have to look over what they eat.....all the products I did mentioned had a kind of quimical that made your body to think they are hormons, for that reazon the endo sticks in our organs we are fiding them preety well....So this is my experience...actually in Mexico it is only a Chain of hospital around the hole republic they open a endo clinic and it is on Mexico city the principal El Hospital de los Angeles,it is kind of expensive, but they are very good ....So I do hope this will be oppening a window for the world to open the eye¨s doctor and to go for to better research for this decease, thank you to The Patient´S Voice this will be for history (sorry about my english, but I did try to express my concern for the women´s world)

Rhoda | 21/10/2008 15:12:00

I started my periods when I was about 13 (1965) and from the onset was in total agony! My mother would take me to the doctor and they would tell her it was all in my head!! I used to vomit and be rolling on the floor in agony and would sit on the toilet for ages! I would miss about a week off school each month. I was put on several different pills as well, most of them anti-inflammatories (which ended up giving me stomach ulcers)! I was also put on the pill and was told that when I became sexually active and have my first child that this would all disappear.. WRONG!!!! It got worse!!! (I was 25 when I had my son). I was only on the pill for a year and then had to come off it as it was starting to give me severe headaches to the point that I lost my vision. At the age of 35 I finally had a hysterectomy and the pains subsided. I was put on hormone pills, Estrogen and Progesterone. I was put on both of these pills because even though I had a total hysterectomy I was still bleeding! They couldn't figure out what was causing it and then the specialist said that I had severe endometrosis and this was the reason for my bleeding so that is why he added Progesterone. This did settle everything down, or so I thought!After that several times I ended up in hospital and they did all kinds of tests and scopes on my bowel and each time I was told that I had diverticulitis!! (NOT!!)I am now 56 years old and 8 years ago I had an anterior bowel ressection, where they had to remove a large portion of my bowel, because ENDOMETROSIS ate a hole through it!!What I didn't know was that endometrosis keeps growing in your body if your on hormone replacement therapy so needless to say I have stopped all that as well. Unfortunately because of this I am still having bowel problems but at least the dreadful pains are now gone!I would never wish this on anyone. I hope that someone in the medical field reads this and that people are made more aware what hormone replacement therapy can do to someone who has endometrosis and even though you have had a total hysterectomy that the endometrosis can be active elsewhere in the body.I hope my story is of some help.

Kelly | 05/12/2008 16:26:00

I was diagnosed with Endometriosis at the age of 30.  Just a few months before I got married.  For about a year or so before the diagnosis I was experiencing painful periods, pain during sex and painful ovulation that would last a week before and a week after ovulation.  I knew something was wrong.  I also knew that my mother had endometriosis and promptly went to my family doctor to request an ultrasound.  My doctor told me not to worry as she believed that endo caused very heavy menstrual bleeding and since I did not have that I was fine.  Bologna!I had the ultrasound and it was found that I had a cyst on each ovary which after my surgery later that year was determined to have been the size of an orange for each cyst.  No wonder I was having painful bowel movements during my period as well.  The cysts were so large and pressing on my rectum.  Anyways, I was sent to a gyno for surgery.  I had surgery in October of 2007 . I was diagnosed with Stage 4 endo. I was put on Lupron immediately. Lupron is pergatory.  They say drug induced menopause is 50 times as worse as the real deal.  All I can remember is for 2 months I felt like I was internally combusting.Almost like clockwork once the Lupron wore off, I started feeling pain again in the ovarian area, having general pelvic pain and lower back pain, expecially in the morning right out of bed.  The best way I could describe it is like pelvic congestion every morning.   I went back to the gyno repeatedly, each time being dismissed as a cry-baby or anxious hypochondriac.  I kept telling the surgeon that I was feeling pain again.  He had the nerve to suggest that I may be had torn an abdominal muscle and he told me to heat the area!?! Then he suggested that I had colitis or Crohn's disease because I was experiencing pain during bowel movements?!?!?  It must be great to be able to spontaneously diagnose like that without any testing and especially when you are dealing with a patient with endo where abdominal pain is the basic symptom.  Needless to say I left the clown gyno.  I learned that alot of doctors should not be practising with only one neuron in their brain.  I was bitter at the medical profession and knew that I had options. Second opinion was the answer.I finally found Dr. Vilos out of London, Ontario. He examined me in May of 2008 and just upon physical examination and after reading my first operation report, determined that I had endo in the cul de sac area (behind the uterus and in front of the rectum) and upon further investigation with MRI it was found that I have a cyst on each ovary again.  I am off to surgery in the next week with Dr. Vilos.  He is a highly experienced laparoscopist and has done thousands of surgeries on women with endo.  He is sensitive to the issues and instills confidence in his skills as a surgeon. His reputation is impeccable.  Apparently after discussing this with my family, I was told that my first surgeon upon exiting the surgery told them that he could not get everything!  Thanks buddy why could you not tell me that on one of my 5 visits to your office in pain after the surgery. Why lead me on dead-end paths. Endometriosis is simply a test of strength, will, belief in a higher power and learning to truly respect your body and ensure that anyone dealing with you respects your body and the condition of endo as well.  It is not a fable or a figment of our imagination.  It is real and with you always.  Bottom line-listen to what your body tells you, know that proper medical care IS a right and not a privilege and NEVER stop until you get the treatment you need.  Endometriosis has forced me to compromise with my body, not push it the way I used too and to respect my body eventhough it does not function/perform the way it used to before the endometriosis took over.  I thank God for putting Dr. Vilos in my path and for putting my husband in my path.  I felt very distraught and very depressed and very alone because of this disease- many days I HATE it.  But I cannot escape it so I must learn to live with it always remembering that it could be worse.God Bless all of you wonderful women warriors. We win, endo loses! 

John | 30/01/2009 14:29:00

Just wondering if anyone else has server back painand left leg pain associated with their endometriosis cycles. My wifeis in her mid 30's and has had two laproscopy procedures where verydark legions were found and removed, that was a few years ago and thepain continues but is becoming even more frequent not just right beforeher period. Lately she has been experiencing really bad back pain andwe know its not a disc or anything like that because it goes away afterher cycle, she also has left leg pain near where the butt and hamstringwould meet and this pain then goes down into her foot. We researchsome things on the web and found that endometriosis can spread into thespinal canal and also the siatic nerve, we brought this up to her OBGYNand she hadn't heard of that and she tried to get MRI's for the pelvic,left leg and lower lumbar but the insurance denied the request. Doesanyone out there know anything about this issues. This endo has been acurse for my wife and our family with no end in site especially if ithas spread to the areas I mentioned.  If anyone out there knows of a endo specialist in the Northern VA area please post it here.  thank you

SHIRLEY 3 24 09 | 24/03/2009 17:31:00

 HI I HAVE ENDOMETROSIS .ALL THE TROUBLE BEGAN WHEN I FIRST GOT MY PERIOD. I WAS 13. I ALWAYS BLEAD HEAVY BIG CHUNKS OF BLOOD, IWOULD BLEED FOR A MONTH STRAIGHT.AT ONE POINT I HAD TO BE HOSPITALIZED IWAS ENEMIK. AT THAT POINT THEY PUT ME ON HORMONE PILLS AT16.IT HELPED SOME BUT STILL BLEEDING HEAVY. I HAD MY SON AT 19 WAS MARRIED TOO STILL HAD ALL THE BLEEDING AND PAIN AROUND PERIOD TIME. WHJEN IWAS ABOUT 32 IWAS IN THE BEST SHAPEOF MY LIFE I STARTED HAVING PAIN WHEN I WOULD DO MY STOMACH EXCERISES ALOT MORE THAN NORMAL.TO THE POINT I HAD TO STOP ALTOGETHER. I WAS TOLD ABOUT A GO0D GYN I WENT TO GO SEE HER AND THAT IS WHEN SHE TOLD ME IHAD ENDO. I ALSO STARTED HAVING PROBLEMS WITH MY BOWELS. IWENT IN FOR MY FIRST SURGERY A LAPOSCOPY AND THEY FOUND ADHEASIONS ON MY BLADDER AND RECTOME WAS STCK TO MYPELVIC WALL. SO THAT IS WHY I WAS HAVING BOWEL TROUBLE AND STILL DO TO THIS DAY 15 YEARS LATER.  AFTER THE FIRST SURGERY MY OVERIES WHERE SHUT DOWN FOR SIX MONTHS T6HE PILLS MADE ME VERY ANGRY PLUS I WAS SO DEPRESSED AND VERY EMBARESED ABOUT MY  BATHROOM TROUBLES. MY LIFE BECAME A LIVING NIGHTMARE. AS THE YEARS HAVE GONE ON I WAS BED RIDEN WITH PAIN  THAT TIME OF THE MONTH I KEEP HAVING CYSTS SO I EVENTUALLY HAD A HYSTORECTOMY  HAD COMPLCATIONS IN SURGERY AND ENDED UP IN ICU. THEN 6 MONTHS LATER ANOTHER CYST BACK TO SURGERY .I WAS PUT ON BIRTH CONTROL AND ACTUALLY DID MUCH BETER WITH EVERTHING FOR ABOUT 2 YEARS. MY GYN DID NOT EVER WANT TO TAKE MY OVERIES OUT. THEN MY GALL BLADER WHENT BAD AND HAD TO HAVEIT TAKEN OUT. THEN I GOT ANOTHER CYST ON MY OVERIE NOW MIND YOU I WAS TOLD I HAD THE WORST CASE OF ENDO MY DOCTOR HAS EVER SEEN ALL MY ENTESTINES WAS ALL WEBED OVER PLUS ALL THE SURGERYS HAD CAUSED LOTS OF SCARE TISSUE TOO. WELL MY DOCTOR FINNALY SAID YOU HAVE TO GET OVIERS OUT YOU CANNOT HAVE ENY MORE SURGERIES OR I WILL HAVE A BOWEL BLOCK. SO I HAD THE SURGERY AND TWO WEEKS AFTER STARTED HAVING HOT FLASHES AND AMOTH LATER WAS BACK IN THE HOSPITAL WITH  A BOWEL BLOCK LUCKLY IT SRAIGHTENED IT SELFOUT. IT IS NOW 3 YEARS LATER STILL HAVE MENOPAUSE SYMTOMS AND CANNOT TAKE HAOMONE PILLS BECAUSE THE ESTROGENE PROMOTS ENDO SO I SUFFER WITH VERY BAD DRYNESS VAGINALY FATIGUED ALOT MY SKIN HAS SUFFERED ALOT IAM TOO YOUNG FOR ALL THIS CRAP. ENY WAY THE REASON I AM TELLING YOU ALL THIS IS SO IF I CAN HELP ENY ONE GOING THROUGH THIS, THIS IS SO PAINFUL MENTALLY AND PHISICALLY TOO .AND BELIVE ME BECAUSE PEOPLE CANT SEE THIS AS A REAL DEASISE  ALOT OF PEOPLE THINK IT IS IN YOUR HEAD.EVEN MY HUSBAND OF COURSE AFTER ALL THESE YEARS HE GETS IT. SORRY FOR MY BAD SPELLING IDONT HAVE SPELL CHECK ,PLEASE WRITE TO ME FOR QUESTINS THE ADVISE I GIVE YOU ALL PLEASE DO NOT TAKE OVIERIES UNLESS NESSISARY AWHOLE NEW SET OF PROBLEMS I WILL END BY SYING THE ONLY WAY I GOT THROUGH THIS IS WITH THE STRENTH FROM GOD. GOD BLESS YOU ALL I AM HERE FOR YOU LOVE SHIRLEY.

 

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