# Endometriosis



## Guest (Feb 21, 2004)

Hi!I guess I am not completely ruling out endometriosis as a possibility for all of this constant pain that I am having. My doctor thinks that I could have cysts on my ovaries or elsewhere that's why I haven't (or my doctor) hasn't ruled it out yet.Any ways, for those of you who are comfortable with it would you mind sharing your story with me about how you first noticed symptoms relating to endometriosis, how it got diagnosed, what symptoms you experience and the whole experience in general -what you went through and what has helped relieve the pain of it (if any).Thanks so much!


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## Mishy (Mar 20, 2000)

I'll put this in point form, otherwise it's way too long!-Stomach aches from 5 years old. Eased off until I turned 12 and got my period, then they came back. Heavy periods that lasted a week, and shocking cramps.-First lap in September 2000, endo was diagnosed. Put on the Pill.-Second lap in October 2001, I was told I couldn't have children. However I conceived in November and had my daughter in July 2002. I told my doctor that endo was back during my pregnancy, but he told me not to be silly since "Pregnancy cures endo." Put me on another Pill and when that didn't work, onto Provera. -Third lap, my endo was worse than ever, and adhesions reaching across my pelvic region and attached to my uterus. Put onto another Pill. However my GP told me I can't take the pill due to migraines, so he put me onto the Depo Provera shot. The pain was less, but I developed tachycardia so I can't take it again.I found out about an endo clinic 8 hours from where I live, so I went to see a new doctor. He doesn't use diathermy like my other doctors did, instead he excises endo and adhesions. So I'm scheduled to have my fourth lap on the 2nd of March. I figure I have nothing to lose. I've tried the Pill, Depo Provera, natural therapies, pain killers and whatever else and nothing has worked. I have constant nagging pain, bloating, headaches, backache, sore legs, extremely heavy, long, periods, cramping a week before I start and I'm always nauseaus and throw up a lot. so there's my story, I'm only 22 years old and will be getting a hysterectomy in around 3 years. I hope you're lucky enough to not have endo, it's hard to live with and affects nearly every aspect of your life. It's also not understood by a lot of people, who think that you're overreacting to what's "normal for every woman". Let us know how you go!


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## AZ101 (Feb 15, 2004)

Hi,This my first post here. I saw your post and decided this was the best of any to put my feet on the ground. I started w/severe pain in my abdomen 5 years ago. Throwing up, severe periods, horrible stomache cramping, swollen belly, periods lasting for weeks on the end. Numerous symptoms, I can't even remember when this all started. I got pregnant and that quieted the Endo but it didn't go away. After my son all my symptoms came back with a vengeance. I was in severe pain about half the month. I had a lap in Oct of 01 to see what was going on as I still hadn't been diagnosed. (The doc's all thought it was in my head.) He found Endo all over in there along with a grapefruit size cyst. I was put on depo lupron for six months which gave me an irregular heart beat and put me into menopause. I decided to get more than one opinion so I went to a couple doc's. Each one said I was a good candidate for a Hysterectomy. They told me I couldn't have anymore kids but I got pregnant one more time. Then it got real bad. Pain regularly for almost a year, everyday I was in pain. I missed a lot of work. I also had colonoscopies and endoscopies and different tests. Nothing was coming back but I was still in bad pain. Then in Sept 03 another doc found Adenomyosis in my uterus but didn't tell me. It was in my reports but she didn't inform me. I went to another doc and he told me I would be fighting all this pain until I went into menopause and that I should consider a Hysterectomy. I did A LOT of research and decided after awhile to go for the Hyst. I am 3 1/2 months post-op and I am NOT in pain. When the doc went in he found my left ovary attached to my intestine (probably started with Endo adhesions), a WHITE not pink, ugly looking uterus and acute appendicitis. I did not realize how much pain I had been in until about six weeks post-op. The worst for me going through all this was the severe back pain. My uterus was so full of blood that it was causing me to have such bad back pain it was unbearable at times. Depending on your age, you might want to look into Adenomyosis as well as Endo because they go hand in hand. Adeno is just like endo but is within your uterine walls. It creates little vines and lakes of this endo and implants it in your uterus. The doc told me I was young for all this to have jumped into my uterus but I was not going to be in pain for another 30 years as I am only 24. I probably was not going to be able to have anymore kids anyways so I think this was the best decision for my body mind and health. I do know a wonderful website to go for some possible answers to if you want it. Anyways that is about 60% of my story in a nut shell. If you have anymore questions, I know where you are coming from.


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## christywisty (Mar 12, 2002)

Canuk,It's a long story for sure, but I've had terrible periods since I was 13. They're very painful, to the point of not being able to function, and very heavy. I went to see a doctor when I was 17, but he said it was something I had to live with. I was one of the "unlucky" ones. When I was 20, I had a large ovarian cyst and was sent to see a specialist. Once the cyst was resolved, I started seeking treatment for my periods. One day, I took in all of my narcotic pain killer prescriptions and put them all on his desk. He scheduled me for surgery that day, and about three weeks later, I was diagnosed with endometriosis on January 23, 2003. I've tried a bit of everything since then. You name it, and I've been on it. I've tried BCP (both cyclical and continuous), anti-inflammatories, nerve blockers, temporary nerve blocks, anti-depressants, anti-seizure medications, narcotic pain killers, muscle relaxers ... pain management even. I didn't get relief from my first laparoscopy, so I started searching for another surgeon (the one that diagnosed me with endo moved to another state soon after my first surgery) to perform another laparoscopy over my Christmas break (I'm 22 years old and a full time student in college), but everyone refused. They said it was too soon and that I had to try other options. The very last surgeon I saw was the one that agreed to a laparoscopy with a presacral neurectomy (cutting of the nerves going into the uterus). My best options before finding him were morphine, methadone, or 12 months of Lupron, none of which I wanted. I've not had the chance to try accupuncture yet due to finances, but I have tried exercise and some changes to my diet (less sodium, more calcium, as well as avoiding meat and other products that may have artificial hormones).I had my second surgery on December 23 of 2003. The endo was back, and I really wanted to go back to see those other surgeons and tell them, "I told you so." It's still unclear as to how much good it did, but we are planning on a total hysterectomy within two years. It's the best chance I have to gain back some quality of life, especially since I have so many other health problems. It isn't the best decision for everyone, though, so always do a lot of research and be very active in your treatment.These are some of the symptoms I experience when I'm on my period: severe cramping, heavy bleeding, quarter-sized blood clots, low back pain, nausea, vomiting, diarrhea, chronic pelvic pain, pain during intercourse, fatigue, pressure -- It feels like I am bearing down without consciously doing so.Do you know what a laparoscopy is? You need to have this surgical procedure done to diagnose endometriosis. It's an outpatient procedure, and it takes around a week to get back to work or school, although it can be different on an individual basis. They make an incision in your navel to put a camera in your pelvic cavity. They make up to three other little incisions above your pubic hair line. They use CO2 to blow up your belly, which helps to keep them from accidently puncturing an internal organ. They can use other tools to burn the endo with a lazer or cut it out, and they also take biopsies. If you have any questions, feel free to email me privately at christywisty###hotmail.com ... I can tell you more about the procedure or the treatments, and I can send you pictures of what those incisions look like, as well as pictures from my surgery. I wish you the best of luck.Regards,Christy


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## Guest (Feb 22, 2004)

Hi everyone!First of all, I want to thank you very much for posting your stories and filling me in on your personal lives. These stories and symptoms are all very too familiar. I am scheduled to see a surgeon on March 19th. I'll have to wait and see what she thinks is going on. Then I am going to see a G.I. specialist in July. I hope by July after I see the last specialist things will at least have a diagnosis. I am walking around in pain and not even having a proper diagnosis besides it's IBS. I know IBS can affect your period as well, but I mean I think that this pain is more and it's kind of odd that the pain and all of these symptoms get so much worse around my period time. I just have a gut feeling that this is not only IBS but it's more to it then that. I know I'm not a doctor but it's just a gut feeling that I have.Thank you again so much for sharing and opening up your life to me


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## Bathroomqueen (Jun 20, 2003)

Hi everyone! I have been having these horrible pains in my left ovary area off and on for the past year and a half. I had two ultrasounds done to check for ovarian cysts and nothing abnormal was found. I just had my 2nd child in January.. I still had the pain during pregnancy but not as frequently as before. Anyway, since my ultrasounds didn't show cysts I was chalking it up to my IBS. I finally went and saw my gastro yesterday and he didn't think it was IBS since the pain lasts for several days and doesn't seem to have any relation to my bowel habits. He said it sounded more like a reproductive issue and suggested endometriosis as a possibility. I looked it up when I got home, my pain symptoms and pattern matched exactly! I get awful pain with ovulation, starting 2-3 days before and lasting 2-3 days after. I also get horrible cramps in that left side during my period. My pain is also in my back which is typical of endo patients. The only things that don't match are the heavy bleeding and infertility problems. So I'm off to my gyno on Monday.. I'm not sure what he'll suggest. I am still on maternity leave for the next 2 weeks so if he wants to do the lap, I will have it done soon. If not, I'll have to wait several months to build up my sick/vaca time again! I will keep you guys posted... I'm wondering if alot of us actually DO have endometriosis since the symtpoms mimic those of IBS????Angie


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## *Luna* (Nov 19, 2001)

Endo doesn't always cause fertility problems. It all depends on where it is growing. My gyn told me he has some patients who have been diagnosed with IBS and when they discover and treat that patient's endo, the "IBS" goes away. There are other patients that really do have both problems, though.


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