I have this horrible disabling disease of endometriosis

by Elizabeth
(Houston Tx )

My heart goes out to all the women that have this disease because I know how you all feel!! I had a total hysterectomy at the age of 28.


It was September of 1997 when I had my first surgery for endometriosis. The day of the surgery the doctor did not even do a pregnancy test like they are suppose to do before any surgery.


He went ahead and did the laparoscopy but after the surgery I still was in so much pain! On November, just 2 months after my laparoscopy I went to an infertility doctor because I knew my clock was ticking and I wanted a family desperately!


So I went and she said I was already pregnant 11 weeks! How? You ask I don't know but if you do the math I was already pregnant!! I thank God that my baby didn't die while he, the doctor did the surgery because he wouldn't of told me.....I have soooo much to my story but it's too long to write it here.


I feel lonely and depressed which I know you all do as well....on that note I know we all need to stick together! I'm here if any one needs a friend cuz I know I do...... Thanks for listening :)

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Jul 14, 2015
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No relief after hysterectomy
by: Anonymous

I hear you! My name is Elizabeth, you probably read my story about "I have this horrible disabling disease of endometriosis". I'm in so much pain still after my hysterectomy at the age of 28, now I'm 40.

Now I have some accidents, I mean I have urinary incontinence. My ob/gyn sent me to get an ultrasound of my bladder & it showed I have nothing! That the results were "normal"!! But I don't feel normal! I then called her, her nurse answered, I then asked what do we do now. She said, Now that my ob/gyn said she couldn't treat me because I didn't have any reproductive organs any more & couldn't treat me.

So she referred me to a general surgeon. I know in my heart it's endometriosis again cuz I've been on hormone replacement meds since my hysterectomy. I have so much pain in my low back & down my legs! I fell three times. Twice in the shower & once on a step at my house. Now I have pain in my hip constantly.

Dr did an MRI & my hip has a tear. I have osteopenia & I think it's cuz I have lost calcium due to my hysterectomy. All cuz of my endometriosis! I wish you & all the other women all the best but I don't know what else to do!

Drs don't believe me cuz they can't see it on a test or a paper. So to them I have nothing wrong. Your damed if you do have hysterectomy & damed if you don't! There's no win for us! Again, I wish all of you the very best :)

Jun 26, 2015
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No relief after hysterectomy.
by: Anonymous

I had a hysterectomy in my 30's. Immediately went on hormone replacement. When I turned 50 I was at work and noticed that my leg had swollen three times its normal size and felt like a piece of wood. After seven doctors and numerous diagnosis including a major diagnosis of cancer.

I was scheduled for exploratory surgery. After surgery no cancer was found, it was endometriosis. It was on all my blood vessels, nerves, intestines, tubes going to the bladder on my right side. They were unable to remove any of it due to the extensive amount of lesions and scar tissue. Now I live with the pain and the swelling and bladder and bowel problems.

I have been placed on so many pain meds but due to severe side effects and unable to function I have to try alternative ways to make it through the day the pain from sitting, standing, and walking is what I deal with on a daily basis. Doctors have no clue what it is like to have this disease.

Jun 10, 2015
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Endometriosis Sucks! I wouldn't wish it on my greatest enemy!
by: Anonymous

I have always been in constant pain. I remember when I was a teenager missing school because I was in so much pain I would shake. My periods were 15 days apart so I missed a lot of school. This went on for years before I was actually diagnosed.

About 5 years ago I was diagnosed after a car accident. It started to hurt to breath so they did all these tests and determined I had a large cyst on my ovary. It took six weeks to get an appointment with the doctor who would perform the surgery. Another month before the surgery was actually performed. I probably would have continued living with the pain if not for the accident. I though it was normal because everyone is in pain during their periods.

After the surgery the doctor came back and said yes it's endometriosis. They prescribed Lupron. Let me tell you Lupron made me crazy. It made me see things from the point of view of the people who go and commit crimes when they are on certain medications.

I dreamed of killing random people and plenty of other crazy things. I am NOT a violent person but the medication made me that way. My friends and family started avoiding me. I was miserable. The hot flashes were awful, I probably would have lost my job if I didn't let HR know what was going on. I blew up at co-workers. I do NOT recommend Lupron.

I went off the Lupron and told the doctor I will never take it again. Well I ended up needing another surgery because my ovary became attached to my uterus. So I had the ovary removed. The first thing the doctor tried to do is put me back on Lupron. I told her no! The doctor prescribed different birth controls to get my period to stop but it didn't work. I even tried the Mirena but my body rejected it.

Having my ovary removed was the best thing ever for about two years. My pain was cut in half. My periods became regular. I didn't have heavy clots and I didn't have overflow accidents due to heavy bleeding.

About six months ago that all changed. My pain is back (I've started shaking again due to pain levels). My periods last a minimum of seven days. The difference now is my flow is so light a majority of the period I don't need any protection (I still wear something b/c you never know). The concerning part is the blood is black and comes out more like spiderwebs.

Then on the last day of my period it will be so heavy I bleed through an overnight pad in minutes. I sometimes feel like I'm going to pass out. I've had to leave work because of it too.

My family asks when are you going have kids. I'm very depressed because in certain ways I do not feel like a woman b/c of the difficulties. I have a hard time talking to some of my family because I think it isn't fair your sixteen and have a kid. You are unable to support the child on your own while someone like me who could actually support the child and really would like to have one will probably never experience it. I sometimes wonder what the hell I did in my previous life that has caused me to be punished like this.

I have an appointment with a new doctor at the end of this month and I'm praying she will say yes lets do a hysterectomy. I'm also praying my pain will go away like before.

I have no children and I'm 30 years old.

May 08, 2015
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Endometriosis in the lungs...
by: Toni W

Well here's my story...... My lungs collapsed about 3 weeks ago. I went in to the hospital and it was determined that I had scar tissue on my lungs that looked like I had phenomena. The doctor inserted a tube in my chest and placed me on suction so that my lung would inflate. Then what do you know....2 weeks later the process happens again and they decide to go inside my chest this time to try to close off the area in which I have the scar tissue.

Once they got inside my chest they noticed that the tissue was not what they thought it was..Endometriosis in the lungs...so now I have to go to the doctor in 2 weeks to discuss my options. I always wondered why I could not have another child. I am 37 years old and my only child will be 16. So many decisions on a disease that doesn't have a FIX....

Apr 07, 2015
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Endometriosis terrible disease
by: Beth

I'm so glad I found this. I'm in so much pain every month. I was diagnosed in 2005. I'm 35 yrs old & have 2 children. It's very hard for me to get pregnant. My children are 5 yrs apart. We've been trying for a year to have one more.

The pain has gotten so bad that I want the Dr to take out all of my female organs, but I'm so scared!! My poor family had to deal with this every month!! I'm crying now just thinking about it. I'm depressed & feel alone. My friends have no idea what I'm dealing with. I wouldn't wish this on my worst enemy. :-(

Mar 05, 2015
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Endometriosis
by: Kel

Hi, I am 34 and was first diagnosed with endometriosis when I was 19. I have 2 children so no complications there but have lived with chronic pain, I have had 5 laparoscopies, various coils, pills, and meds etc.

I have just been tested for bladder cancer as I have blood in urine but I think its my endometriosis, my consultants and doctors have not been helpful at all in fact they have belittled me and I've even nearly been thrown off wards as I always argue my point. Especially when they say your endometriosis is not much and should not cause pain.

If they knew what they were doing they would know it doesn't matter weather it is big or small amounts it can be painful. I wish this could be helped.

I understand that a hysterectomy may not be the answer and may not get rid of it but I'm Tired of being in pain and not only my life but my kids lifes are affected. Just want to say thanks for reading and listening xx

Mar 03, 2015
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Endo after bilateral oopherectomy
by: Lindsay

I cannot tell you how relieved I am to see I am not alone! I've had 5 surgeries in 13 months. They diagnosed me on surgery 1 with endometriosis. Surgery 2 they removed my uterus. Surgery 3 they removed a "chocolate cyst"(for those who don't know its a haemorrhagic cyst where my left ovary was filling w/blood.

To make matters worse the cyst began to leak out into my body irritating other organs which you can only imagine the fun there. With constant pain. surgery 4 removed my ovaries as the endometriosis had spread. Now 6 weeks post-op my ovary removal, I had surgery 5 as the endo spread to my colon.... I'm in constant pain..as we all can relate..and have a "consultation" this week to discuss why I'm STILL in pain.

I just found out you cannot get on Lupron if you've had your ovaries removed as the guidelines changed per my doctor. So, now what..you know...I'm on zero hormones and, at the age of 32, is a nightmare...anyhow ..sorry but needed to vent with those who "get it"..=)

Feb 17, 2015
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Hysterectomy
by: Anonymous

I am 39 with 3 children.. Had 2 IVF cycles.. Had Endometriosis since I was 21..Just had a total Hysterectomy.. Love it. Pain free.. Hot flashes are no joke.. But I will take them over the pain any day..

Jan 31, 2015
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Stuck between lupron and hysterectomy...please help
by: Anonymous

My name is Samantha, I am 32 years old and I have a beautiful 4 year old daughter. I went through 5 years of turmoil (pre-diagnosis) being told everything from I have stomach migraines, to IBS to my favorite "it's all in your head". After I finally pushed for my first surgery...with a doctor who didn't think I had the disease, I was finally diagnosed.

After doing enough research I knew that had to be what was going on. The first surgery provided little relief for a few months till I found a better surgeon. I had my second lap 6 months later and the results from that lasted much longer.

I am now slowly getting back to the debilitating point. I either end up on heavy pain meds or in the ER once a month and I am told my only options are a hysterectomy or lupron.

I just started a new job and I am fearful to do the lupron because I do not want to be going through menopause symptoms at work...I would like the option to have more children but I cannot bear to keep doing this any longer. The pain is excruciating and is causing problems with my digestion, frequent urinary tract infections and yeast infections in addition to a 7 day extremely heavy period. I am at my wits end.

I am also concerned about taking pain medication for any length of time as addiction runs in my family. My doctor will not post date prescriptions for me so every month I end up missing work or in the ER when my period hits.

I am a mom, I work full time and I am in school, so these medical issues are ruining my life. I have heard some women have good luck with lupron but it still carries hefty side effects. My first instinct is to have everything taken out...any advice from people who have tried lupron would be greatly appreciated.

I can't keep doing this. The worst part is that every ER doc seems to think it is some mild discomfort/ that I'm over reacting or they don't understand what the disease is truly about or how painful or debilitating it can be. I need to make a change in the next 30 days...anyone who can speak to lupron versus a hysterectomy please help! Any advice would be greatly appreciated.

Jan 26, 2015
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Hysterectomy cures endometriosis LIE
by: Anonymous

I had a full hysterectomy and 2 laproscopic surgeries to rid the didease. It has been 5 years and I have had no relief since surgery. The pain never subsided. Before you make the decision to have hysterectomy think about it long and hard.

Jan 19, 2015
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It's like I'm reading my own story.
by: Leslie

Hello. My name is Leslie. I am in constant pain due to my recently diagnosed endometriosis. I am fortunate enough to have been blessed with 5 pregnancies, 4 live births. 4 beautiful babies.

I was surgically diagnosed 5 months ago during c section but I have known that something was not right for many years. Visiting ERs, different drs, just to be written off as a woman who simply thinks her PMS is worse than others and just needs to go away.

I, too, struggle with terrible lower back pain, with most of the pain deep in my pelvis and constant leg aches. I am a very active woman. Working ok my yoga instructor certification. I take vitamins, drink lots of h2o and try to not let this get me down but I don't feel like anyone understands.

My drs only suggestion is lupron(still breastfeeding some) and guarantees a radical hysterectomy is in my near future. I just have a very hard time accepting that. I am terrified of the side effects and hormone replacement. I am 31 years old and losing these precious organs my creator put into my body just feels like it should be the LAST option.

My OB will not help me with pain management at all. We are lucky enough to be Native American so we have free healthcare but sometimes it feels like u get what u pay for:). No insurance, means no 2nd opinion. No one to help me unless I do it their way. I'm in agony most days and I just wish I could find a dr who cares and will help me.

I knew I had this disease long before I was diagnosed because I know my body. I listen to it. I wasn't aware there were stages either! But when you are cut open under heavy sedation giving birth and you hear the validation you have prayed for, for so long you don't always ask all the questions you probably should.

I am so glad I found this forum. I need it. This affects all aspects of my life. My kids lives. My husbands life. I feel guilty. Thanks for listening. PEACE, LOVE, and NAMASTE.

Jan 12, 2015
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Hysterectomy recommended
by: Jessica

Hello, I'm 23 and was diagnosed through laser laparoscopy with endometriosis when I was 12. I've had 5 laser laparoscopies and 1 uterine suspension surgery. I've undergone fertility treatment and successfully had a beautiful boy who is now 3 years old and the endometriosis beast has returned.

My doctor is opting for a total hysterectomy ovaries included! I just want to be out of pain and enjoy the son I have!!! Any opinons? I feel alone, angry, and scared... thankyou

Dec 27, 2014
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Returning Kelly's comment
by: Elizabeth

Hi Kelly,
I'm sorry I haven't been able to get back to you. Between Christmas & just hurting its been hard. How have you been feeling? I hope your doing well. I'm so sorry to hear that you also have this horrible disease. My heart goes out to you.

I know you said that Endometriosis has left you infertile but have you gotten more than one opinion. The only reason I ask is because I too was told that and thank God I had my two boys!

At the beginning I was naive, I believed everything my doctors told me but then I started getting more than one opinion. If I were you start researching everything and anything they tell you!

You also said that you have stage 4 Endometriosis. I didn't even know there was stages to it!!! I also, like you had it on my intestines, cul de sac, bowel, ovaries, uterus, appendix, basically everything too! My lower back has been hurting for many years now which radiates down my legs.

I can't stand, sit, or walk for along period of time because it kills me! I now spend my time switching between walking, standing, sitting or anything that can relieve the pain. I've also have had stomach problems that gastro-enterologists can't explain why! I know that they probably think I'm making it all up!

Some docs have said its all in my head and that there's nothing wrong because all the test come out fine. But I know that it's probably the endometriosis.

I'm afraid I'm going to be like this and worse the rest of my life. Which scares me because my boys have only seen me sick all there lives! I'm on pain killers and going to different other specialists. At this point I don't know what to do. I can go on and on so I'll let you go.

Thank you for listening
Elizabeth

P.S. this is my email elizabethf27@aol.com

Dec 12, 2014
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So lonely
by: Kelly

Good morning Elizabeth,
I'm so sorry that you are having such a difficult time, but am totally made up for you that you now have a beautiful baby, thank god !!!

Sadly Endometriosis has left me infertile, which breaks my heart everyday, I have had 3 miscarriages. I only found out I have Endo 2 years ago, since then I have had two operations, (one major) my Endometriosis is stage 4 and is covering my bowel, womb, uterus, bladder basically covering everything!!

I have been on Zoladex injections which have made me more ill than I can begin to explain, like you my story is too long to go into on here, but your story touched my heart!

If you would like a friend and support I would love to keep in contact, this is a lonely disease.....
All the best Elizabeth.
Kelly xxxx

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