Endometriosis Support Group
Endometriosis is a common medical condition where the tissue lining the uterus is found outside of the uterus, typically affecting other organs in the pelvis. The condition can lead to serious health problems, primarily pain and infertility. A major symptom of endometriosis is pain, mostly in the lower abdomen, lower back, and pelvic area.
i was diagonised with pre cancer cells in september of 2009. my gyno performed a procedure to burn the cells out of my cervix for the 2nd time in january of 2010.
a few months later I started having horrible stomach and back pains. my stomach would swell up so badly i looked like i was 9 months pregnant!
eventually my gyno had me rushed to the hospital and i under went surgery it was at this time I was told that I had endometrosis!
I had never heard of this illness before in my life, the pain is so horrible every single day. my doctors put me on the lupron shot which costs so much here in the Bahamas, I was spending $350 to $1,000 for lupron shots! The lupron shots did nothing for me. I would have nasty black periods that lasted for weeks! my stomach would swell up, my back would hurt my legs would hurt.
I went from having a job as an office manager of a law firm to quitting. i worked out with a trainer 3 times a week and played tennis now i cant do anything.
the endo is back and its so severe. i attempted to committ suicide in november of 2010 and was almost put in an aslyum!
this illness has destroyed my life i have gained about 40 pounds
i am in pain every single day!
on a scale from 1 to 10 my pain level is an 8 each day
i havent left my house since the last day i went for counselling for the attempted suicide which was december 7th 2010
i dont know who i am anymore
i hate this life
i hate this illness
and i just want someone to help me
there is no cure and the medication that i get does absolutely nothing for me
i have spent hundreds of dollars paying for pain killers but yet i am in pain every single day
please help!
a few months later I started having horrible stomach and back pains. my stomach would swell up so badly i looked like i was 9 months pregnant!
eventually my gyno had me rushed to the hospital and i under went surgery it was at this time I was told that I had endometrosis!
I had never heard of this illness before in my life, the pain is so horrible every single day. my doctors put me on the lupron shot which costs so much here in the Bahamas, I was spending $350 to $1,000 for lupron shots! The lupron shots did nothing for me. I would have nasty black periods that lasted for weeks! my stomach would swell up, my back would hurt my legs would hurt.
I went from having a job as an office manager of a law firm to quitting. i worked out with a trainer 3 times a week and played tennis now i cant do anything.
the endo is back and its so severe. i attempted to committ suicide in november of 2010 and was almost put in an aslyum!
this illness has destroyed my life i have gained about 40 pounds
i am in pain every single day!
on a scale from 1 to 10 my pain level is an 8 each day
i havent left my house since the last day i went for counselling for the attempted suicide which was december 7th 2010
i dont know who i am anymore
i hate this life
i hate this illness
and i just want someone to help me
there is no cure and the medication that i get does absolutely nothing for me
i have spent hundreds of dollars paying for pain killers but yet i am in pain every single day
please help!
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I gave my 2 week notice last Friday 13th. Now to join you fine people in a life of leisure and nothing else to do but to look out for myself....is it just me or does that sound pretty boring? My goal was to live to retire and I guess having to take early retirement because of health reasons wasn't exactly the way I had planned things. I just can't stay in that building that is reeking mildew...
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I'm trying to exercise daily. I was doing fairly well until I sprained my ankle 2 weeks ago but now I'm getting back on the horse. Today I walked over a mile with my arm weights that are about 22lbs total. I was out of shape and it was hard on my arms. I also did my 30 situps. I'm also going to drink a lot of water and try to eat healthy. I do tend to have a sweet tooth but I'm cutting...
The body needs a lot of rest, too. I would reccomend taking Melatonin- you can get it OTC for next to nothing, and since it is natural in your body already it doesn't have any of the bad side effects a narcotic-based drug would. I find that my days go a little better when I get more rest than on the days I don't. My body seems to need more now that I am sicker, than I used to when I was okay.
Do your stores have a generic plan there? We have them here in the states through Walmart- my doctor gives me Tramadol for pain, and it costs $4 USD for 30 of them, or $10 USD for 90.
The depression is something I can't help with. I am still roughing it out with mine; are there any free therapy clinics there, or income-based mental health clinics you could go to? If there is a big mental health place close by, I know some (here, at least) offer free support groups. You may be able to find one for depression.
Also, as one more aside; might you consider a laparascopy? They make a small incision, poke around, and remove any of the patches you might have. Mine did not work, but I hear a lot of people get relief from their endo when they get one.
I don't know if any of this is help to you,but if you need support I am here. :)
my doctor will not perform a hystorectomy on me. he says i am too young and not only that i have learned that even after you have that procedure there is a chance that the endo might come back.
am currently on tylex, apo-norflox, celebrex
my country just introduced a prescription plan but its maninly for elderly people.
i had a laparascopy in may of 2010 but i spoke to my doctor and he said that although they removed the endometri cells during that procedure they will not perform another one on me. this country and its health care is stupid
i had to go to counselling at a community counselling centre and i actually enjoyed going but my endo has me so out of it that i dont even leave my house any more. i haven't seen the light of day since dec 7th 2010.
nothing seems to last when it comes to treatment am just looking for anything that would just help with the pain. am tired of buying hundreds of dollars worth of medication that doesnt do anything
am happy i found this site i need to be able communicate with people who understand what am going through.
thank you so much for your response i really appreciate it
No it is not an easy route. I am on an anti-depressant too. I feel like people don't understand, but who are they to judge they don't know the extent of the pain this disease bring us. I, like many of the others on here have had several surgeries and probably going to have my 4th one soon.
Not to scare you but my endo have traveled to my lungs now :(
Remember we are here and in this together. I wish there was a cure too
Take care and keep on fighting even if you need to switch doctors. YOu need someone that will listen to you. And please continue cousenling it helps
Take care of you and remember you have a purpose in life :)
i absolutely love the ladies on this site so warm and helpful
i started taking the hcg horomone last week and already i've lost 12 pounds in one week and some how my endo pain levels has dropped drastically!
i've gone from an 8 out of 10 on my pain level to a 3!
am monitoring it to see how it progresses as we all know there is no cure but there has to be something that helps other than all of the pain killers!
I did try taking the BC pill and found a lot of relief from it. I am switching to a progesterone only pill in about a week as the effects of the Demulen were wearing off.
Now that you're feeling a bit better, get out of the house! I started a project to redecorate my daughter's room with mostly stuff found from thrift stores. It's cheap, easy and keeps me busy and distracted. There are 5 stores around me that I frequent to see what treasures I can find. See if you can start a project or at least a ritual of coffee with friends on a Tuesday or something. Baby steps. But keep steppin'.
Good luck, sweets! Remember, you're not alone :0)
~Beth~
am actually plotting on getting out of the house by at least next week wednesday it will be the first time that i've been out the house since december 7th 2010!
although the hcg hormones seem to be working i am reserving judgment until its affects are more consistent.
i had started writing a book about my life but i lost interest in it! i think i will resume that
thank you so much for your post and advice you guys are so amazing!
I have lost hope many times.... Just had my 4th surgery. There is clearly not a definative way to get rid of this disease.
You have to keep searching! I don't know about the health system in the Bahamas. See if you can find a Pelvic Pain Specialist.
I have regained my energy and drive to find something that will cure me. I recently came across this web site. Check it out.
http://www.sensiblehealth.com/Journey-05.xhtml
I have actually heard through many sources that liver health may be a key factor in endo, because endo lives on estrogen and if the liver is not processing out the excess estrogen, it could be a major factor. I have also been researching foods and environmental estrogens, xenoestrogens and photoestrogens as well as getting rid of all my personal care products with parabens. These things add estrogen to our body everyday.
I'm no expert, but I am going to try the liver flush and do some lifestyle changes and see what happens..... Just an option for you.
Whatever you decide to do for your health, don't give up!!! hugs.
one of my doctors is actually the leading expert in the gyno field not only in the bahamas but in the entire caribbean.
this illness is brutual! it drains everything from you. one of my doctors told me that he has treated women who have become bankrupt trying to combat this disesase. he said that alot of his patience over the years suffering from endo would fall into depression and that a few of them had committed suicide
it is so true the depression grips you and sometimes its hard to get out of that state.
but i try to get through each day best i can its hard had a horrible episode last night pain level was raising i laid in my bed and wondered if i should cry then i realized that i had cried too much on this disease
stay strong ladies
My gyno gives me pain meds to take when the endo is at its worse (during my period, usually). They are narcotic, but for me they were the only meds that stopped the pain. 5 weeks ago, I had a 3lb mass of endometrioma removed from me (along with my right ovary and tube). They couldn't get the rest of the endo without giving me a full hysto and I'm only 25, so my gyno didn't want to do that. The 3lb mass of endo on my right ovary gave me a swollen stomach, which I just thought I was getting fat. Though I considered it odd, since my metabolism is great (don't eat well, don't exercise much, sit on my ass all day) and I never gain weight.
I should have gone to the doctor as soon as I noticed the stomach swelling instead of just putting it off as gaining weight. Either way, I hope you feel better. Have you tried Celebrex/Flexeril/Vicodin/Percocet for your pain? All are either pain meds, anti-inflammatory drugs, or muscle relaxants.
my doctor will not allow me to have a hysterectomy i sincerely feel as though most of the doctors here are simply quacks
i already have a daughter and my doctor wants me to have another child but that is not going to happen
i was told by my doctor and i've researched that even if you have a hysterectomy endo can still come back
wow about the 3lb mass
my stomach swells up from time to time as well sometimes i look like am 9 months pregnant!
i would call and text one of my doctors to complain about the pain and the swelling and he would tell me that i need to go back on lupron
when i was on lupron it did absolutely nothing for me notwithstanding the fact that i had to pay $350 for a single shot as well
i want another surgery so they can scrape this stuff off my walls but these doctors are lousy
my doctor has prescribed so many pain killers for me i actually found myself asking him for anything with codine in it
i recently put me on the celebrex but it did nothing for me besides make me a little dizzy and high when i first took it
i have spent thousands on meds and nothing so far has worked
At least with a hysto I wouldn't have to deal with the endo pain that gets worse during my period. =\
I just wanted to let you know that I read that codeine isn't good for women with endometriosis because it can cause constipation which women with endo already have issues with. I just wouldn't want you to take something that might exacerbate the problem.
Geez I wish you could come to the states and get that surgery. My heart is sad for you :0(
a hysterectomy will cost me any where around 20,000 or 15,000 none of my doctors will ok that surgery for me because of my age so am basically stuck
i cant imagine myself having 3 and 4 surgeries in one year the one surgery i had last year was already rough i hate the hospital over here the nurses are mean and evil
i attempted suicide in november of last year and was in the hospital for 6 days the nurses treated me like crap because of what i'd done and the law says that before i could have been released from the hospital i had to be evaluated by a physcologist
i waited for days for a physcologist to come and see me on the ward i was admitted to main while the nurses refused to feed me and left in a catheter for days which ended up giving me a horrible infection which later after i was released had me being rushed back to the hospital in less than a week's time
i've been taking these hcg drops for almost 2 weeks now i've lost 14 pounds and so far my endo pain level is been manageable
i dont think this hcg thing is a cure but for right now it seems to be working a little which is more than i can say for all of the pain medication my doctors have put me on without any results
i want to thank each and everyone of you for taking the time to respond to my posts it means so much to me
oh by the way did you ladies know that endo cells can cause your organs to fuse together?
i also found that out in my research as well
what a life!