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Support for endometriosis sufferers
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Its me again
 Jul 24, 04 - 6:59 PM |
Your Stories
Please post your Endometriosis stories here. |
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Lisa
Jul 25th, 2004 - 1:11 AM |
Re: Your Stories
Hi, my name is Lisa, I might have already posted my story on another part of this website, but I just received the email that said a new forum was started so I thought I would post. I am 28, married 10 yrs and have three children, 8, 5, and 15mo. I have had horrible cramps since I first got my period at 9, by the time I was 10, I was on tylenol with codein for the pain, but nothing else was done. At the age of 14 the dr. suggested b/c pills to help, but they never did. On the last day of my honeymoon, I woke up with horrible pain, turned out to be a large cyst on my right ovary. My gyn. gave me a shot in the hip of antibiotics to see if it would take care of it, but the pain only worsened, I had it removed a week later and that's when he found the endo. I was 18 at the time. Since the first lap I have had 2 miscarriges and three children, my last being a major surprise. I was scheduled to have a complete hyst. done in august of 2002 because I had had my second lap done in may of 2002 with no relief at all. Well the night before I was supposed to go in for my pre-op work up, I missed my period and took a home test and found out I was pregnant! Talk about a shock, I had been in so much pain since April that I could barely walk let alone even do anything with my husband, for awhile I swore it had to have been immaculate conception LOLOL. Needless to say I haven't had the hyst. but I am back in horrible pain, I have been on b/c pills, vioxx, pain meds, and nothing has worked. I live on hope and prayers as I'm sure alot of us do. Sorry this was so long, thanks for reading it  Lisa |
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Brittany
Jul 29th, 2004 - 9:29 AM |
Re: Your Stories
Hi, My Name is Brittany, i am 17 and live in Australia. My periods started at 12 and were text book perfect until i was 13 or 14 when i started cramping. Aspro-clear worked for a while, then i upgraded to panadeine forte then finally to Endone (morphine) and pethadene and now nothing works. I am yet to be professionally diagnosed with Endo, but i have been un-professionally diagnosed by other sufferers. Im constantly in pain...not a day goes by without me being in some grade of pain 9.99 times out of 10 its crippling. If i dont get any professional help i will go nuts! hehe My symptoms: *Jet Black period blood accompanied by an extremly heavy period -Maternity o'nighter pad change every 20 mins!!!  *severe cramping  *Fatigue  *Depression  *Hyper Sensitivity when in pain- not even a sheet can touch me...  *24/7 pain   * Feeling Faint most of the time  * Feeling the need to use smilies after every sentence...hehe Cheers Brittany 
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Melanie
Jul 29th, 2004 - 7:38 PM |
Re: Your Stories
Hey Folks, I have to agree with Laurie with respect to checking out some alternative treatments. My story isn't nearly as bad as those I have read about, but I was experiencing a lot of pain nonetheless. Three weeks after my surgery I was tired of of feeling as though I had no control over endo. I kept thinking of my gyn telling me, "It's most likely going to come back." He was very respectful of my decision not to take Lupron and I told him that I would go on the pill and see how I did with that. Well after much thought I decided the pill was not for me even thought I had very few endo symptoms while I had been on the pill for 8 years (I did have pain prior to the pill and experienced no side effects). My reason for not going on the pill was mainly because I didn't want to be pumping more hormones into my body because I am high risk for breast cancer (a sib diagnosed in her 30s and genetic mutation for cancer). So I chose the diet/supplement route. Now quite a bit of my endo had been removed through surgery, but my first period was a piece of cake (some cramping and one HEAVY day). And the tremendous bloating I had been experiencing for several months is finally gone! I haven't started my supplement treatment, but I am very eager to start the protocol my naturopath has designed for me. Forum's like Laurie's has really helped me be more proactive about my disease and feel very empowered. I wish that for all of you! Melanie |
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Melissa
Aug 2nd, 2004 - 4:44 PM |
Re: Your Stories I NEED ADVICE PLEASE
I am very confused about what i even have. I have never had painful periods, actually they were like only thrre to five days with one haevy day and some clots, have four kids even on all forms of birth control, I am 32 and had my last child four years ago. Well four months ago I had a period and the day after and had a severe pain in my left pelvic area that lasted for about eight hours. I didn't do anything because it went away ( and i have no insurance) Next peiod I had sever pain on the same side for about two hours on my second day of my period. we looked stuff up on the interenet and figured it must have been a cyst. THEN the next month as soon as period started I had the severe pain again and went to the ER they said it was just cramps and sent me home with pain meds. The next three days were bareable but then on the fourth and fifth I had sever pain again even on the pain meds. went back they took a pelvic ultrasound and told me they thought i had endo. and go to the dr. So i went to a low cost dr. at the university and he told me he thought i either had a cyst (even though the ultrasound didn't show anything) or an inflamed ovary/fallopian tube or endo. but he didn't think so since i am so regular and got pregnant so easy (which didn't make sense to me) or maybe a kidney stone ( ok?) Anyway he put me on birth control pills and told me to take them continously and they would help any othe those and to come back in eight weeks Well since then i have had some mild pain off and on Until this week when i am "supposed to be having my period" and i had sever pain (on the left side still) today (that ibrofen didn't take away) so i took a toradol that i had left and it is better for now SO after all that do any of you think i am dealing with endo. or something else? It seems to me from what I am reading that is what it is and I am going to have deal with this the rest of my life but i gusee my dr.'s opinion i don't Should i still be having pain when i am not even bleeding? and since it is on the same side every time is that more likely to be endo. or something else? I have never had period problems except for clots Anyones advice would help I know you are not a dr but i really am scared and concerned Thank You Melissa jmmmwilder@hotmail.com |
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Melanie
Aug 2nd, 2004 - 8:49 PM |
Re: Your Stories
Hi Melissa... Well I'm not a doctor, but I can share with you what I experienced... For more than a year I was getting severe pain on my right side every month I had my period. Then the pain started happening mid-month, until finally it was continuous and I was taking anaprox every day. If I took it before the pain hit I could last the whole day. But then I would forget to take another one and the pain would hit me in the middle of the night. I'd take pain meds and it would take between 2-4 hours for the pain to subside. My doctor kept insisting it wasn't anything more than period pain and pain associated with ovulation (the German word, mittleschmertz). After a couple of near fainting spells along with excruciating pain, I had one while with my nieces that put me in the ER (I didn't go to the ER immediately, but saw an urgent care doctor--not my regular doctor--and he sent me to the ER because he couldn't figure out what was wrong, but suspected something serious because of my high WBC count). The ultrasound showed a very large (chocolate) cyst on my right ovary and the doctor also suspected endo (which was confirmed during my laparotomy). More FYI... My sister wasn't diagnosed with endo until after she had two kids. She was having all sorts of problems that her dr. thought was related to GI issues. Her ultrasound did not show a cyst either, but her dr. decided to to a lap. What she found was significant scar tissue (from endo) inside her ovary, which was causing all the pain. She ended up needing to have her ovary removed and has not had any other endo related pain. I hope you can find out what's going on with you... Melanie |
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Lori
Aug 3rd, 2004 - 9:41 AM |
Re: Your Stories
Hi Melissa, You are heading in the right direction by researching! Some women get pregnant easily with this disease & some women have normal cyles. Mine was exactly 26 days for many years. You really need a diagnosis. I have found that the women who are proactive with their health have had the best success, so I would urge you to push more with the Drs. at the University. I am not sure how that works, but can you get a referal to somewhere else? Or go back to them for further testing. The only way to diagnose endometriosis is thru a laporoscopy. Once you have a diagnosis their are many options. Can you push the Drs. more to find out where this pain is coming from? To me it does not make sense to mask the problem with the pill. It seems most women with endometriosis have passing of clots, but I have also read that it is also part of an estrogen dominance problem-not enough progesterone, so maybe you can also push to get some hormone testing done. Here is a link to a Dr. I have read about, his articles seem to coincide with other natural Drs. who treat these kinds of problems. I have written to him a few times & he has replied with suggestions before to me. He says he offers a free service? not sure exactly how that works, but maybe worth a try. You can copy & paste this link-an article & his info to write to him is their. http://www.lammd.com/A3R_brief_in_doc_format/Estrogen_Dominance.cfm Feel free to write back & let us know how it goes with you! Lori |
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Kim
Aug 8th, 2004 - 5:18 PM |
Re: Your Stories
I am 26 and have been suffering from endometriosis since I began my period at age 12. I had the typical endo periods that were horrrible. They often lasted 10 days and were complete with pain, nausea, and fainting spells. The periods got better when I started birth control pills when I was 17. When I was a freshman in college (age 1  I began cramping severely, absent my period. The doctors thought a cyst had ruptured, but the ultra-sound was negative. The pain lasted 2 months and 3 doctors later before I had my first laporoscopy. The OB/GYN told my mom it was the worst case of endo he had seen in 30 years of practicing. He removed it and I began a 6 month series of Lupron. The pain came back 4 months later and the surgery was repeated. The OB/GYN said it was as if I had never had the original endo removed. It was everywhere. I only had a month of minor pain relief. I started my sophomore year of college in so much pain I was taking 2 percoset every 4 hours. I couldn't find a doctor to help me. The next OB/GYN reassured me that I would not need a hysterectomy, but he did not know how to help me. We began a nation wide search for a doctor. I was accepted to the Endometriosis Care Center in Atlanta, GA, the Mayo Clinic, and a Clinic in Cincinatti. I was also referred to a doctor in Denver. He is a Pelvic Pain Specialist. I began seeing him in the winter of 1997. He informed me that not only did I have severe endo, but I also had a disease called intersistial cystitis. This disease affects the bladder and produces pain much like endo pain. The doctor began doing trigger point injections into the abdominal wall to numb my nerves. This treatment provided pain releif for many years. I also continued on depro provera and birth control pills. A year and a half after I married, my husband and I decided to try to have children. I went off the hormones for two years. We have had no success. I am now quite ill and the pain is no longer under control. I have had to quit my job as a social worker. I can no longer drive due to the pain killers. I have been referred to another pain specialist in Denver who is working on doing nerve blocks to control my pain. My pelvic pain specialist operated in March of 04 and has told me that a hysterectomy will not help because the endo has damaged my nerves so badly that they will continue to send pain messages even if I have the hysterectomy. I realize this is quite long, and if you are still reading it, I thank you. My family and husband have been extremely supportive, but I feel I struggle each day to find the joy in my life. If you have any questions about my doctors, whom I would highly recommend, please email me. If you would just like to chat I will admit, I could really use the support. Thank you again.Kim |
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Melanie
Aug 12th, 2004 - 9:30 PM |
Re: Your Stories
Hi Kim, It was so hard to read about all the pain you are going through. I just can't imagine it. I have at times felt quite overwhelmed and it can get hard to maintain my optimism. I am so glad that you have such support from your husband and family, I think that is critical to maintaining your sanity. I have been fortunate to have friends I least expected support me in very critical ways. This has been very good for me because a few that I would normally turn to in a time of need were pretty much absent. And if it not for Lori's site (thanks, Lori), I might not feel as though I was on a path to being proactive about my care. My drs didn't quite know what to do with me. My gyn wanted me on Lupron (because he agreed I wasn't in a situation to havea hyst) and I wasn't comfortable with it. At the very least he wanted me on BCPs, but my breast specialist was very against it (he had taken me off years ago because I am high risk for breast cancer). So I wouldn't go on the pill either (which my gyn does not know about yet, why I haven't told him, I'm not sure because I really like him). At the same time though, he's very concerned about my quality of life. So he relented to my using progesterone cream on the condition that I now be monitored every 3 months rather than every 6. How can I complain about someone wanting to look out for me? Kaiser has been really great to me. Also I really love my naturopathic doctor and have noticed many changes in my body/mind/spirit since I've made alterations in my lifestyle. Sure, there are still times when I'm quite emotional and cry at the drop of the hat, but I keep getting back on my feet. I'm not sure if you've tried alternative treatments, but what have you got to lose? You mentioned you could use some support, so if you think I could lend a supportive ear, please contact me. My email: pokilani@hotmail.com You are in my thoughts. Melanie
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Ciara
Aug 19th, 2004 - 7:51 PM |
Re: Your Stories
Hi All, My name is Ciara, I fear that my story has just started. I started my period on my 11th birthday. From the start I experienced discomfort. The women in my family are plagued with bad periods. My 17 year old cousin survived ovarian cancer and has two boys whereas my aunt, grandmother and two grandaunts died of ovarian cancer. I have one aunt officialy diagnosed with endo and five other aunts who had full hysto's due to abnormalities. Six years ago my symptoms hit over drive. The day before my bleeding would start my body would literaly lock up. I would black out, and feel intense pain in my lower abdomen. My amazing mother and sister would try to hold me while for forty minutes i would vomit....and the other way too. After being rushed to the emergency room the first three times (and being diagnosed with everything from 'its all in her head' to 'colon problems') we decided that we needed to do our own research. When I was 17 we found a doctor who did a lap and found the endo. For some reason I thought that was it. I have been on b/c since. But it has come back. Same as before, now I am learning to live with it, I have developed a system as to how to deal with it and detect it . What I have learned is that healthy eating and excersise is important. I take pain killers for my leg cramps, but other then that I try to deal with non-perscription drugs. My goal is to have children someday (like most of us).
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Lori
Aug 20th, 2004 - 9:43 AM |
Re: Your Stories
Hi Ciara, Thank you for posting your story & so sorry for all of the troubles you are having. That must be so difficult with cancer in the family & period problems..., but their are ways to lessen the risk of ovarian cancer & at the same time your chances of eventually conceiving will be better. I think you are on the right track with nutrition & exercise, but also you may want to look into some of the supplements on the natural page, like vitamin C... I have always read that we are at a higher risk of cancer, when we have excess estrogen, so you may want to look into balancing your hormones & building up your immune system. Of course, this will also help the endometriosis. A good book to read about this is "What your Dr. may not tell you about premenopause" Dr. Lee. Even though the cover of the book says balance your hormones from 30-50 this really applies to all of us, as hormones are getting out of balance at younger ages. Anyways, thank you again for writing & I hope it all gets better for you! Lori |
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Alisia
Aug 24th, 2004 - 4:39 PM |
Re: Your Stories
I dont know if I have endo but I thought maybe if I post what has been going on with me, some of you ladies can help. It started 3-4 months ago. The pain started maybe a week before my period and continued through. I went to the doctor and he told me if the pain continued to come back so 6-weeks later I went back because I was still having pain. I had an ultrasound, cat scan, blood tests, pap, etc. My ultrasound showed two cysts, which he said were normal. My cat scan showed that my colon was fuller than the average persons. My first blood test showed I had an inflammation somewhere but they didnt know where so I was put on antibiotics. And he told me I was anemic. I asked him if I could haven endo and he told me there was no possible way because I had pain that wasnt during my period. So he gave me a stool softner and at my request referred me to a gastroenterologist. Well on my own I made an appt. with a gyno. Which I go to on Thursday, hopefully he will listen to me and not just assume its all in my head. Here are a list of my symptoms: *Heavy periods-(sometimes black blood), with clots *Painful period *painful bowel movements (really bad when on period) *painful urination (also really bad when on my period, its a sharp crampy feeling) *painful sex (on entering and deep inside) *exhausted *bloating (I have also noticed that my lower abdominal is swollen) *constipated during period *nausea (just happens sometimes dont know why, I was also vomiting every once in a while about 3 weeks ago) *anemia What do you ladies think? |
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Kim
Aug 24th, 2004 - 5:42 PM |
Re: Your Stories
Alisia, Thank you for posting your message. I am so glad that you are seeking answers for your health. Before my surgry and official endo diagnosis I heard from many doctors over and over again that there was nothing wrong with me. I knew better. Your symptoms list mirror mine. And your doctor's comment about about it not being endo because you have pain w/o a period doesn't make any sense to me. I certainly can't, nor would I try, to diagnose you, but I don't think you should stop asking questions until you get answers that help you. I think going to your OB/GYN is smart and if you don't get any answers, get a second opinion. I saw approx. 6 doctors before I had a real diagnosis. Know that you are the best advocate for your health. I am sorry to hear that you are in pain. All of the women here understand. If you have any more questions please feel free to email me or post on other threads. My email is kimkalina@yahoo.com. Take Care. |
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Alisia
Aug 25th, 2004 - 8:23 AM |
Re: Your Stories
Thank you so much for the quick reply and letting me know that Im not alone because nobody seems to understand and they just think Im making it up or being to dramatic, but I am not. Some days I cant deal with the pain and others I feel like curling up in bed and never leaving. But thank you for the help. |
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Lori
Aug 25th, 2004 - 12:49 PM |
Re: Your Stories
Hi Alisia! From all the symptoms, it sure sounds like endo. Keep pushing for answers & testing though. The only way to diagnose endometriosis is a laporoscopy. Sorry to be blunt, but In the health industry, they say it is very important to go #2 twice a day, so this may also be contributing to the problem. Maybe look at some of the remedies on this site, but ask your dr. about that also! I hope you can get some answers at this next appt. Feel free to keep us posted ok Lori
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Jen S.
Aug 26th, 2004 - 5:02 AM |
Re: Your Stories
Hello, Here's my saga, I'll try to keep it smaller than a novel. I am 28 years old I am married for 3 years but we've been together 8. We have no children but have been trying since April. I haven't been offically diagnosed with Endo yet, but I am confident that's what I have. I've been waiting for DH's insurance at work to kick in, which should be within the month. My pain started 3 years ago. I stopped taking BCP because I was tired of the side effects. That first month w/o them, I had pain in my right side. Even thought it was the Appendix for a bit, but when the pain went away, I figured it's not that. I asked a regular Doc, he said it was Ovulation pain since it was middle of the cycle. I just believed that's what I had until it started getting to be more and more days, I realized that if I was ovulating that long I'd be pregnant. So I'll jump a head to this April, I'm telling my Mom about my pain and some things I think it was, I think I might have mentioned Endo, she told My Aunt had Endo so that's probably what it was. When I went to OB/GYN and told them my symptoms, she figured it might be as well. I had an Ultrasound which showed nothing. She told me the next step was a Lap to confirm, and wanted me to schedule it that day. Well I had NO insurance and said I'm going to wait. I took anti-inflammatory med's and was not so bad. Even had a few months where I thought I was feeling better. I think it was when I was trying the Diet, which I hate because I love all the foods and that I shouldn't eat. I had dreams of opening my own restaurant one day, but the food I'd cook I shouldn't eat. That depresses me. Well the last 2 months have been miserable. When I have my period my whole body aches, and if a sit down I can feel everything squish together. During that week immediately after sitting down my stomach will cramp and hurt and I'll feel nauseous. Not to mention the normal cramps, lower back pain, frequent urination, and pelvic & leg pain. I've also noticed the last 2 months during the first 2 weeks of my cycle if I sit down my right leg, gets twitches or feels like it's going to sleep or actually goes kinda numb. For those 2 weeks sitting is absolutely painful and horrible (I have a job where I sit at a computer all day). Even now, the third week of cycle my leg or hip hurts when sitting, although it's not as bad as the other weeks. I have my pelvic pain I think everyday now, it's not as bad the last week of the cycle. I can see my abdomen is swollen, I've only gained 5 pounds more than I was, but I look a few months pregnant. I hope to have get a Lap soon to confirm, and hopefully give me some relief so I can once again sit. And maybe get some of my life back. However after doing all my reading on various websites it seems that it might help but it might not. Sorry to make this so long, it kinda hard to sum up the disease and my experience with it in just a few sentences. |
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Lori
Aug 26th, 2004 - 9:20 PM |
Re: Your Stories
Hi Jen and all you other girls! Welcome Here I am hoping for much success for you Jen to get your insurance soon and a diagnosis. You can come here and vent anytime and write as much as you like! It is my reprieve as perhaps you can tell. It sure makes me feel better knowing that we are all in this together. Whatever your diagnosis is, even it is not endo, please feel free to come here and talk about it. Blessings to all of you!  Lori |
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Alisia
Aug 27th, 2004 - 8:51 AM |
Re: Your Stories
Well I went to my ob-gyn yesterday and he gave me some samples of zelnorm to try (its for IBS with constipation) and made an appt. for me to come back in 3 weeks. He said if that doesnt help then they want to do the lap. to look for endometriosis. Im so glad that he actually listen to me and wanted to help me. But I just wonder why my general doctor didnt prescribe zelnorm to try? But anyways I hope this helps and its not endo but I still think that its endo so we'll see. Thanks for all the help, I will keep you posted. |
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Margaret Moran
Sep 10th, 2004 - 12:14 PM |
Re: Your Stories
Here is my endo story. I hope someone can read it and understand that they aren't alone and this disease hits women of any age, color, or background. I have had menstrual problems since the day I started at the age of 11 I would skip them and have nausea all the time, but the doctors excused it as me being athletic or say it was all in my head. By the time I was 15 I began to get unbearable pain and nausea. I went to see a nurse prac. who told me,"your either pregnant or you have ovarian cysts", well I wasn't pregnant. Time went on and I was in the doctors at least once a week having paps/ultrasounds done and trying every kind of birth control pill on the market. At the age of 17 I had my first lap to remove 2 abnormal cysts and when they went in they discovered a large tumor. They removed it all, but the pain never seemed to go away. I was still in the doctors all the time, but this time no cysts were showing up and I could tell my gyn was growing very tired of me. When I was 19, he reluctantly told me the only other thing we can do is another lap and see what was going on;he never mentioned endo. He did the lap and at post-op he told me he was very suprised to find that I had severe endo and he got what he could, but couldn't get it all. ENDOMEWHATSIT, I had never heard of this before so I wasn't to worried about it, but could tell the doctor was in shock with his findings. Shortly, after that I got married to a wonderful man who had just joined the Army and didn't completely know about my illness and how debilitating it was. The first time he saw me with my nausea nearly passed out on the floor was the first time he saw the real me, the endo me. He freaked out, trust me he has gotten used to it now. When I was 20 I started to get the rectal bleeding w/ periods So, I went to a specialist, that was recommended by a gyn that went to our church,in Winter Park,Fl because I started to get real sick again. He decided to put me on Lupron, but forgot to tell me the severity of the side effects. That had to be the worst experience of my life. I was supposed to be on it for 6mths which lasted 3mths. It never stopped my periods, I gained 40pds, and had unbearable hot flashes, migraines. When I tried to call the doctor he wouldn't speak to me and so I made another appt to see him in Fl (i lived in Ga). When I was in the office with him, he told me my weight gain was because I was a newly wed(i looked like the pillsbury dough boy and if poked me i would pop, not normal). I began to cry and he literally threw a box of kleenex at me and he started to raise his voice and started to rant and raive and said he wouldn't treat me anymore and stormed out of his office (well needless to say I already decided he wasn't going to treat me anymore). Five yrs later I am still dealing with hot flashes, migraines, and memory loss. Many pain pills later, at the age of 23 I had a colonoscopy and another lap done by a military doc. The general doc told me after the col. that he couldn't see anything, but believes there was endo. He wanted me to come back when I was closer to my menstrual so the endo would be inflared and he would have better chance of seeing something. The gyn who did the 3rd lap told me he couldn't see anything, but believes it was there. Although, he did cut some adhesions that were attaching themselves to my organs and also that my right tube is clogged, but couldn't see the reason for it so didn't want to mess with it. My day surgery ended up taking me 3 days to just leave the hospital because I was in so much pain and I still haven't fully recovered from it. Now at the age of 25, I am dealing with more *sshole doctors and not being able to get into a doctor for at least a mth. I am having super amts of pelvic pain (right side), back pain (to the point I can't bendover or walk), pain w/ sex (wondering if I can even make love to my husband on our anniversay coming up), and nausea (to the point I want to die). But, I am tryng to do some natural remedies and pray to God they give me some relief and fast. I pray for all of us with this horrible disease and wish you all luck on finding the best care and/ treatment. I just try to remember that 1 there are people who have it worse than me, 2 that God doesn't give us anything we can't handle, and 3 I'm not alone in this battle. I also want to give thanks that I have a great mom who stands by side, a very patient husband who tries his best to understand, and 2 dogs that are at my side no matter what and always know how to comfort me. margaret |
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Kristina
Sep 10th, 2004 - 12:30 PM |
Re: Your Stories
My Endo story... Well, I am 20 yrs old now..I started my period at age 12. I have always had heavy painful periods...With lots of clotting and cramping. I just always thought I was supposed to bleed like a stuck pig and cramp like I was in labor! Well, Sometime around age 18-19..I started having diharrea, and either my periods were really close together, or non-existant for a while. Finally I went to both a gastro Dr, and my Gyn. I was tested for everything under the sun by the gastro..The only thing that showed up there was gastritis, an ulcer, and IBS. After these things were "under control", I continued to have pain. My Gyn did many tests and an ultrasound..Those came back that I had PCOS, A moderate size fibroid and that's about it. Well, after being on BC pills and several other things, I continued to have pain. She then decided because of my mom's history, and my pain not going away with treatment that I needed a lap to find out what was going on. Luckily this was all during about a 2-3 mths span, not several years. I went in for my lap on 3/24/04, and was diagnosed with endo on that very day. Confirmed with the lab reports 2 wks later. I continued on BC pills and even skipped my period a few times. I've been to the ER with severe pain since my lap...I then went back to my Gyn who did more U/S to make sure no cysts had appeared, or that my fibroid was growing. It was then determined that my endo was flaring up again. I then, with the help of my Gyn, and Praying to God for help...Decided to do Lupron shots. I am going this monday, 9/13/04 for my second one. I pray that all will work well and I'll have pain free months during and even after I'm done with lupron. Thanks all for listening to my story... kristina |
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dolphinsdive
Sep 11th, 2004 - 10:53 PM |
Re: Your Stories
Reading the stories of others sure explains alot in my own life. I too started with symptoms before I knew what was going on. At 12 I began to have painful periods, miagraines, nausea to the point I remained in bed for days. I began bcps to regulate my periods and shorten them at 17. While in college I was sent to a specialist for appendistis, which was diagnosised as a ruptured ovarian cyst with many more to follow. At 22 I was diagnosis with IBS. I was finally diagnosised after ttc for 1 1/2 at 23. I went to my dr complaining of pain during sex. During my painful exam, she found a mass on both of my ovaries. An ultrasound revealed cyst on both ovaries and a large mass, possible ectopic pregnancy on my right side. I was called around 11:00 pm, that night and told to be in the office first thing in the morning for a lap. I was shocked and scared. The lap revealed endo and I had some lessions removed and my tube cleared. The following month I began clomid. I now have a three year old son. I am presently trying for #3 and have been off the pill since March. The pain has worsen quiet considerably. Symptoms: Period begins heavy, stops for a day sometimes two, begins again, and lingers for weeks Pain on right side low, near ovary, worse around begining of period and around ovulation and recently during and after intercourse Fatique Painful intercourse Sharp pains near tailbone Leg pain Right side pain high near rib cage Urination freq and pain, similiar to UTI, but not present I feel sometimes as if I am just a weak individual with a heightned sense to pain. My only vent is online. I don't want my friends and family to think less of me. I am trying not to go to the dr with any complaints until my yearly appt in Nov in fear she may grow tried of my issues. Some of the problems I am unsure of and worried, but I will wait. Thank you for listening and sharring. Gina |
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Alisia
Sep 15th, 2004 - 10:41 AM |
Re: Your Stories
I feel so icky right now. The pain has gotten really bad, I feel like Im going to pass out. I also started having axiety attacks. I quit taking my birth control thinking maybe that had something to do with it, but no, its still horrible as ever. So I called the gyno today and told them I couldnt wait until Oct. 7 to come in again. So hes supposed to call me after hes out of surgery. Which I imagine is what hes going to want me to do, have the lap. done...Im really scared about it. He said either that or just get the lupron shots, I dont know, I dont have good insurance anymore now that Im done with school so I dont know how I am going to pay for all this stuff but then again Im not going to be able to work much longer if this pain doesnt go away. I have also had a lot of people comment on how much weight I look like Ive lost! Does that have anything to do with endo Im wondering? Thank you guys so much for being here and Lori thank you so much for starting this I dont know what I would do with out you guys. |
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NIKKIE
Nov 5th, 2004 - 5:04 AM |
Re: Your Stories
HI LADIES, WELL I AM GOING TO BE 32.I HAVE ENDO SINCRE I WAS ABOUT 15. I HAD AN ACCIDENT WHEN I WAS A CHILD. I FEEL ON A PARK BENCH BETWEEN MY LEGS WHEN I WAS 9. I HAD TO GET STICHES FROM ONE END TO THEY OTHER. I HAD PUSHED MY TUBE UPWARDS AND INVERTED MY UTERIS. I BELEIVE THAT WAS THE BEGINING OF MY PROBLEM. I HAD GOTTEN MY PERIOD FROM THAT TIME ON. IT EVEN BROKE MY HYMEN. ANYWAY I ALWAYS HAD IRREGULAR PERIODS. WOULD BLEED FOR HALF THE MONTH. WHEN I WAS ABOUT 20 I HAD THAT TUBE REMOVED AND AN OVARIE. I HAD 3 LAPS BOTH TIMES I HAD A FEW OVARIAN CYSTS ONCE IT WAS IN MY OVARIE. I HAVE ENDO REMOVED FOM MY FEMALE PRGANS AND MY BLADDRE AND BOWEL SACS. ON TOP OF THIS I HAVE IRREGULAR PAP SMEARS.I WAS CURRENLTY TAKING LUPRON BUT HAVE DECIDED OTHERWISE. ENDO HAS CAUSED MY LIFE TO CHANGE SO MUCH. I LOST A PREGNANCY FORM ALL MY FEMALE TROUBLE. SO I HAVE DECIDED MY NEXT STEP IS TO TRY AND GET PREGANANT. FOR ALL YOU LADIES WHO SUFFER FROM THIS DISEASE I PRAY FOR YOU NIKKIE |
Alisia
Nov 5th, 2004 - 11:09 AM |
Re: Your Stories
Lori I just wanted to say thanks for everything but I dont think its endo that I have, because for the last month I have felt fine, just a little pain here and there, nothing like before, and I havent been bloated, Ive lost 7lbs I feel great. Thank you so much all of you and I hope that it would be all right if I came back and talked with you ladies even though I dont have endo. Good luck to everyone and I hope you ladies feel better soon. AlisiaChristine |
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Melissa
Nov 5th, 2004 - 5:05 PM |
Re: Your Stories
I have come back to update I had to go to the ER again due to severe pain but I hadn't had a period in three months and it wasn't close to that time anyway The Dr. in the ER said it sure could be endo and i finally got to another dr at the clinic and he said that it wasn't He put me on a different kind of birth control and i will have a period every month and gave me 800 mg of ibubrofen to take as soon as i started bleeding Well i had my period and i just took reg advil 200 each every 4-6 hours and had very mild pain and a normal non clotting period So if it keeps up like that for the next three months i will be happy but i don't know if it will I wish i couild be sure of this thing Also a question I seem to feel pain related to my bowels I don't want to get graphic but it hurts in that place when i have gas or when i have to go alot Is this a sign too? I told the dr. but he didn't say anything The one good thing was he believed i was in pain not just cramps so that was good I undersatand about the money I ahve no insurance and the lab work alone was $800 just to find out i didn't have any std's! oh well i was trying to get some answers I hope i never have to go to the ER again I had to quit work my boss wasn't being suppoprtive at all and wouldn't get people to cover for me when i was in pain My husband's contract ends on Jan 1st and we ahve four kids I don't even know if i will be able to get them christmas gifts anyway i am trying to find a work at home job so far no luck this is off the subject but if anyone knows of a legit work at home job plesae let me know Thanks I will be praying for all of you and I hope things go our way |
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Stephanie
Dec 16th, 2004 - 2:40 PM |
Re: Your Stories
I was diagnosed with endo at age 14. The specialist said that I have had it for a less 4 ½ years before I was diagnosed. I start my period when I was about 9. Around 10 or so I started getting really bad cramps. I started bleeding really bad and nothing seemed to help me. The summer before my freshmen year I was diagnosed with endo. I haven’t found anything that will take the pain away. So far I have had 2 laps, birth control, depo, Lupron, and for the last three months they have to give me estrogen shots to stop my bleeding every month. It’s getting bad I get my period one every two weeks so I have pain 24/7. The pain has gotten worse over the last two years I have ended up in the ER do to dehydration because the pain in really bad. They have given me some many different things for the pain. I need to find something that will help me so if anyone knows of anything that has helped them please tell me thanks My symptoms: *an extremely heavy period, I have to change about every 15-20 mins. *severe cramping *Fatigue *Depression * Sensitive when in pain-can’t wear my PJ’s *24/7 pain * Feeling Faint most of the time * Dehydration do to pain “can’t Eat or Drink”
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Brandi
Feb 22nd, 2005 - 10:41 AM |
Re: Your Stories
Amy, you may want to read some of these so that you know you're not alone in all of this! :) ~Brandi
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Gail
Feb 25th, 2005 - 10:46 PM |
Re: Your Stories
I have suffered from endo for 35 years. It attacked my left uretur and shut down my left kidney for a year in 1993, but they didn't find out that the kidney wasn't working until severe pain put me in the hospital in 1994 and they did emergency surgery. They were able to restart the kidney, but in 2000 l had to have a full hyterectomy. They cut out several pounds of endo inside my pelvis, after a 5 hour operation, my left ovary was crushed by it, but the right ovary could be saved. They couldn't get at the endo near my bladder so they left it there. Last year the endo attacked it again and now the left kidney is dead and I now have to have it removed. I just found out today that the endo is back, and now it is attacking my only good kidney left, and I now have to have that last ovary removed, as well as all the endo that has grown back, in April 2005 They say I'm full of scar tissue because of endo. I am 44 years old and have 2 kids, both natural, no drugs. I have suffered since I was 10 with this, and put on birth control at 11. So if they say to have things removed, take my word for it, after 3 surgerys for this, get it removed as best as you can, before it attacks organs that you need for life. Thanks |
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Lori
Feb 28th, 2005 - 10:11 AM |
Re: Your Stories
Hi Gail, Thank you for sharing your story. I am very sorry to hear of it attacking the kidneys and of the hard times you are having. Have you thought about the possibility of seeing a naturopathic dr or another type of Dr. to help? I am reading a great book lately regarding another therapy (besides the progesterone cream, diet, fish oil...that some of us use here). It is www.gardenoflifeusa.com In my opinion it seems promising. I will pray, feel free to keep us posted on how it goes with you. Lori |
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Sonia D.
Mar 3rd, 2005 - 9:48 PM |
Re: Your Stories
Hello!!! My name is Sonia, is this the first time I write in this forum, I haven't do it sooner, I did not know why but I thin that talking about Endo makes me sad. I start having problems in my period when I had 16 years old on one valentines day while I was on class suddenly I wasn’t able to stand up no even walk, the paramedics had to take me from the second floor of the school, a couple of days later an ob-gyn said that I had my left ovary attach to the back wall of the uterus, since then the pain got worst and it was until I had 22 years that my ob-gyn told me that it was endometriosis and there were not much to do, Lupron (chemical menopause), Depo-Provera shots (every 3 months to stop having menstruation), Birth Control Pills, try to get pregnant (but already had been two years of infertility) or maybe an hysterectomy, as I start reading about the Endo now I know that others of my health conditions (migraines, fatigue, allergies, infertility, chronic pelvic pain that increases with the menstruation, constipation, to have a very low immune system, between others). A year and a halve later I meet Nelson my ex and at that moment I wanted to fell better for me, for him and because we wanted a couple of babies and on this kind of sites I found out some “hints” and everything changed and I became pregnant I didn’t know until we lost the baby, we stay together for a year and two months, then we break up, then depression, insomnia, anxiety comes taking out all I experience with the diagnosis of the Endo and what it does to me. Now almost three years later thanks for the sites and its “hints” I felt better, I know how to manage my health better, praying to God for everyday that he gave is not one more, is one fill with many things new to learn, many new things to look forward, now I meet a divorce with two children’s and open to try anything to have two more, so even in the darkest moments there is light at the end of the tunnel, that light came from God, he send to our lives what we are asking to have, you just have to know how to see it. |
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WarrenChild
Apr 12th, 2005 - 4:05 PM |
Re: Your Stories
Hi Folks, I'm Anna from Scotland. Health and Nutrtition are my hobby. I have studied alot, these subjects and can definately say that some of your Doctors are not giving you a fair deal. You can't just give someone half a diagnosis, and you shouldn't just accept it! But I understand that our countries have different laws re healthcare. So, my advice. You must visit a website called www.sensiblehealth.com. The lady who wrote it is a chemist, and she knows what she is talking about. She has combined Chinese Medicine with her knowledge of hormones. Basically, our bodies are overloaded with Oestrogens due to our diets (pesticides, dairy, stress, late child birth, birth control etc) and our Livers, the poor things, cannot cope with it. You see, it is the Liver which deals with Oestrogens and turning them into other products (such as cholesterols and bile, or weaker oestrogens). If the liver is overloaded, you get stagnation and disease such as endo, piles, etc. I urge you to come off of your hormone drugs, don't trust Doctors who earn thier wages from drug companies. Try www.sensiblehealth.com and just see if her advice helps you. I must warn you, some of the medicine tastes like nothing you'll have tasted before. But, really, I'd never had a pain free period before! I was convinced I was pregnant; there was no cramps, no sore breasts, nothing. Just a bleed! And it happenned again the next period! It's worth a try isn't it. Take care. Anna x 
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Laurel
Apr 13th, 2005 - 4:58 AM |
Re: Your Stories
I had a hysterectomy due to endometriosis and adenomyosis (endo embedded in the uterine wall), but I wanted to share with my experience on Lupron Depot first. Based on symptoms only, my doctor, at the time, told me she would treat me with the "cure for endometriosis"...Lupron Depot. Not knowing much about endometriosis or Lupron, I thought I would check the Lupron website which had pictures of smiling, happy women who had been treated with Lupron. At that point, I really wanted my life back and decided to start treatment. My doctor gave me the choice of six injections, one per month or two injections, each lasting 3 months. When I asked what the difference would be, she said with the 3 month shot I wouldn't have to drive to the office as much. So I stupidly opted for the big daddy shot that lasts three months. I had the first shot the end of March and for the first month felt irritable, but okay. By May I began having terrible pressure in my head, especially at night, I felt like the blood vessels in my head were going to explode. I went to the ER..but nothing helped. In the middle May, my children and I tagged along with my husband on a business trip he had in Miami. All hell broke loose there. I began having seizures at night. Had to have my mother-in- law fly to Florida and be with my kids while I was in the hospital. Along with the seizures, my endo pain was the worst it had ever been and it felt like someone was stabbing my ovaries with an icepick and my uterus felt like it was on fire...an absolute nightmare. We flew back early, I went to doctor after doctor to see if there would be anything to rid my body of the Lupron... no one could help. At one point, I was rushed to the ER convulsing and they did a spinal tap, because they thought I might have bleeding in the brain. I was hospitalized for over a week...had an MRI done on my brain...nothing helped. I had these, which I only can describe as surges, which felt like adrenaline rushes up the back of neck. The surges would chemically burn the blood vessels in my neck and head. The burn went up my neck and head and down thru my sinuses. Then chemcials came through the roof of my mouth. I was spitting out chemicals constantly. My heart raced and pounded off and on. It was extremely painful and frightening. My husband called TAPP Pharmacuiticals, while I was screaming...yes screaming, in the background, and demanded something be done. There was a point, that I went NINE nights straight without sleep, even when taking ambien. I writhed in pain for the better part of May and June, cried NONSTOP, and felt like jumping off a bridge. By July, I had some improvement as far as the Lupron, my endo pain went away, but the Lupron did not take away the pain in my uterus,(adenomyosis). The adverse effects of Lupron gradually decreased over about 9 months. I found one other woman on the internet who had an experience similiar to mine. After this horrific experience, I researched Lupron and discovered some women have suffered permanent joint and bone pain from this drug. Thankfully, I didn't experience this. But I am certain Lupron has damaged my memory. I also found out that Lupron was approved by the FDA as a sort of chemotherapy for prostate cancer in men. The drug has never been approved for women. Apparently, when the FDA approves a drug for one specific use, it can then be used for other things. I know many of you ladies are on Lupron with few problems. Just don't believe a doctor if they tell you Lupron cures endometriosis. It only suppresses it temporarily and sometimes the adverse effects can be worse than the endo. I will post my hysterectomy story next time. Don't worry, it's not nearly as dramatic! Laurel |
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Laurel
Apr 13th, 2005 - 8:01 AM |
Re: Your Stories
Hi again, Here is a good article explaining the potential dangers of Lupron. www.mercola.com/2002/feb/9/lupron.htm After reading through the article again I noticed it said that the FDA did approve Lupron for endometriosis in 1990......Awhile back I read somewhere that it hadn't. Laurel |
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mikki
Apr 13th, 2005 - 11:55 PM |
Re: Your Stories
Hi guys Im here to vent my feelings.I recently found out I have ovarian endometrioma.I never knew I had endometriosis.I always had painful periods but thought nothing of it cuz my mom had painful periods and so I thought it was normal.I found out I had endo kinda in the worst way.Im a newlywed and in feb this year I found out I was pregnant.I was so excited but got freaked out when I was having pain.So I went to my obgyn and he said it was nothing.I started to bleed really badly and my doc just kept on telling me it was nothing.Finally one night I started to bleed badly and cramp up.I had to go to the er and they just thought it was a spontauns abortion.Still my doc kept on telling me that he could see a baby.Finally one day I started to have bad pains again and my doc was gone so I had to see another doctor.This doctor looked over all my info and er pictures and wanted to check to see if I was having a epcoptic pregnancy. During the surgery he found out that my baby had been sucked up into a ovarian cyst and that in my ovary was endometrioma.I guess I just needed to vent this out because my husband is ok to talk to but yeah hes a guy and so it a little hard for him to understand me.So thank you guys! I like your site alot=)
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Niki
Apr 14th, 2005 - 9:28 AM |
Re: Your Stories
I was just diagnosed with endo last year (June) but I am already scheduled for my 2nd lap in a couple months!! How do you all deal with the depression/irritability?? I am normally very laid back and loving but when that time of the month comes around I am almost impossible to be around. That's the hardest thing to deal with for me.
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Monica
May 2nd, 2005 - 1:37 PM |
Endometriosis
I WAS DIAGNOSSED WITH AN OVARIAN CYSTS ABOUT 6 INCHES AND WAS TOLD THAT I ALSO HAVE ENDOMETRIOSIS. I HAVE BEEN FEELING PAIN IN MY PELVIC AREA, AND HAVE A HEAVY PERIOD. MY OHER SYMPTOMS INCLUDE: FATIGUE HEADACHES FEELING FAINT CRAMPS IN LEGS STOMACHE CRAMPS OVERALL JUST AN ILL FEELING I WAS WONDERING IS THERE ANYONE ELSE OUT THERE WITH THEASE SYMPTOMS!!!!!!! |
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Graceinwaiting
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