Endometriosis Stories - Page 8

United States
June 2006

I didn’t find out I had endometriosis until last year 2005 of April...my doctor told me that I had it since I was little but it didn't start to grow until I started my menstrual period .. but I was going for my yearly physical check-up because I had been on the birth control patch for 1yr.

She did a vaginal examination on me and found out my uterus was bigger than it is supposed to be, so she did an ultrasound on my belly and couldn’t really see clearly on it, so she ordered an MRI. I went to get the MRI and they found out I had endometriosis sitting behind my uterus. I was so afraid because I didn't know how to take it at the time. I was 16 at the time and I didn't know what to expect from all this, so then she gave me a choice either to wait until I got out of school to get surgery or either go on home-bound and get it done.

So I said to go ahead and get it done because I didn't want to be summertime getting that done and my summer would have been messed up! So after all planning my surgery date I planned it 2 weeks after the MRI testing, and I went to get my surgery done and I did have a picture of it, but it got deleted off my mom's camera phone because it broke.

But it was really big and today I just think that I’m so lucky it wasn't cancerous because it's so many girls that wait until it’s to late and die. But I had to be smart about the situation and accept what god has put there, so now I live today telling my story, but I feel so much better that I have gotten it out of me because I had so much pain through out my lifetime of having it inside of me.....so to anybody that comes down with that and is scared and reads my story, it's nothing to ignore, but not anything to be afraid about. 

Charu Singh
June 2006

It was very sad to know about you pain and suffering of endometriosis. I have it too and I had a cyst and fibroids too. Then my doctor first gave me zoladex injections as treatment to dry up the scars, then after 2 shots of zoladex I was operated upon (open conservative surgery).

I had endometriosis stage 4. Then after my operation I was put on danazol for a year. My father is a homeopath so he gave me 3 medicines namely HAMMAMELIS, THLAPSI AND VIBURNUM OPULUS. These medicines cure haemorhrages caused by endometriosis which cause pain.

I was lucky to be born in India so I had the chance of doing YOGA. This is what has helped me the most. Do try taking these homeopathy drugs and do rigorous yoga. You have astha channels in your body also. Swami ramdev teaches yoga. Do it. I never believed in it's healing but now I do. It has been 2 years and I am, by god's grace, all fine with no pain.

But though last but not the least, pray, pray hard to god to ask his forgiveness. Ask for his support he will surely help you. I am unable to get pregnant but after 2 operations I realized that if god saved me he did it for some purpose.

On the net you will find sites showing yoga asanas, just type "ASANAS OF YOGA FOR FEMALES/PRANAYAM FOR LADIES,IN GOOGLE AND SEE WHAT YOU REQUIRE. BUT IT will take 3 to 4 months, but don't give up. Start at early morning, fresh air with remembering god first before beginning just say to him" you have given me birth with sufferings and only you will heal me " and believe me he hears.

So I want to hear from you soon with good news of curing yourself. Believe in yourself, love yourself and then see with hard work and determination you will heal. luv charu 

Leslie Tavares
United States
July 2006

First let me say that it feels so good to hear all of these stories and know that I am not alone. I am 31 years old and was diagnosed with endometriosis 2 years ago. I had always had problem periods, but the birth control helped to regulate my cycle. Then in May of 2004, I found out I was pregnant. My fiancé and I have been together for 6 years and we were thrilled since we both wanted children.

When I was 5 weeks along I had a miscarriage, and 2 weeks later, an ectopic pregnancy- it would have been twins! I was very depressed, but returned to my job as a waitress/bartender. Two months later, I started having really symptoms of painful cramps and thought it might be related to the miscarriage. I went to three different doctors before I was diagnosed with endometriosis by a laparoscopy surgery.

After the operation, I had 3 weeks with no symptoms, and then it came back with a vengeance. They could not remove all of the endometriosis without taking out my ovaries, etc. and since then, my life has been a living hell. I am out of work for months at a time because the agony is so bad that I can't even stand up. It no longer begins when I have my period because it never goes away any more.

I have been on 6 different kinds of birth control as treatment, which have been useless in my case, Megace (which had horrible side effects),surgery, anti-inflammatory drugs, painkillers, you name it and the symptoms are still there. 

Rachael Anderton
United States
July 2006

I didn't want to share my story as much as my understanding for the woman who was wanting help understanding Depo Lupron. I hope it isn't too late to write a response to your latest story. My heart goes out to you with your miscarriage. I can't even imagine what you must feel. You are a strong woman. For this reason I fear becoming pregnant...because of my history with endometriosis.

The Depo Lupron shot, though you are now probably off it, is hard. Hopefully, this makes what you felt normal. The hot flashes were hard. It made me a girl of 21 not want to go into public, because I knew my face would go bright red...and there is nothing you could do about it. And you didn't want to explain to the world that you and your mother were going through menopause together, so you would just tell people that you embarrass easily.

Oh well. This was the least of your worries. Then there was the not wanting to be touched at all!!!! This was the worst for me, my boyfriend, and all those around me. All those desires to be intimate were completely gone!!! How do you explain that to the guy you were close with the night before, and within a day your feelings change? How do you explain this to the guy you love? This instantly leads to depression. There was no other route for me. Without the human touch, it gets lonely. No even wanting other people around...but being depressed without them. It's a confusing road. I did understand my mother a little better, but is that worth the sacrifice? I guess that's up to you, for me it wasn't. 

United States
July 2006

I am a pharmacist, so when I first got endometriosis I tried the "U.S. Medical approach". Or shall I say it choose me. I first had a fibroid and was put on the worst drug ever-syneral which causes you to go into menopause. I later found out that this drug makes your hormones go way over at first because they are all released and this probably caused the endometriosis.

However, my doctor would not remove the fibroid without the syneral--she said it made it easier for her to remove the fibroid. About three months later I was sitting with a doctor friend eating diner and he said "I looked green". I vomited all night and finally took myself to the hospital to find out endometriosis had wrapped itself around my intestine and part of my intestine would have to be removed because it was blocking my food going through.

Then after I went on birth control pills every day, after I gained 40 lbs and became depressed--I did not know what to do. Unfortunately/or fortunately for me, my mom had developed ovarian cancer and we decided to go to an alternative doctor who had "cured my cousins cancer". At that meeting the doctor said with my medical history I should also go on the approach.

Unfortunately, my mother chose to not do it and pass on. The doctor had me on a strict diet of mostly raw fruits and vegetables with some brown rice and baked potatoes. I did eat organic butter. I also took herbs to build up my adrenal glands and clean my lymphatic system. I cut out almost all meat, with the only meat being organic maybe 1 time a month. I think eating all the chicken, and learning about all the hormones they put in the meat, along with all the stress I was under caused the disease.

I lost 25 lbs, and have not had endometriosis or anything for 3 years. I am 47 and still have my periods on a regular basis. I feel great and blessed that this alternative doctor came into my life. 

A Hall 
United States
July 2006

I am 36 yrs old and have four children. I have had endometriosis for 9 yrs. I lost my left tube and ovary to it. I have been having chest pain for about a year now. I had my heart check and it was fine. I have recently been having symptoms of endometriosis again and was doing some research on ovulation and leg pain. While reading this website, I learned of a type on endometriosis that bonds in the chest. I was so shocked, I had never heard of such. This could be my problem. 

Sarb Raiyat
United Kingdom
July 2006

Hi, I am 36 and am blessed with children and a fantastic husband. I have had endometriosis for 5 yrs. Back and forth to the hospital, had 2 laparoscopy surgeries and been on the provera twice, just finished 6 mths of prostap!!! It hasn’t been easy coping with the pain and seeing to the kids. I have had to go private for my consultation because there is a 6 mths waiting list to see my gyny.

I am in a dilemma, I had a vaginal scan last week and has revealed that the endometriosis is back not that it had gone!! It is eating at my womb and it has dropped into my pelvis also both my ovaries are infected. We have to decide whether to have another laparoscopy or to have hysterectomy. If I want hysterectomy I have to lose weight, which I have put on due to the hormones!!!

I understand that hysterectomy is not the answer to pain relief but what else can I do? I want my life back so I can enjoy the kids and my husband. Its not easy not making love. My husband says he understands but its a big decision to make. I only had my 2nd laparoscopy in 2005 June, so I don’t understand how it has come back so quickly, makes you wonder whether my gyny missed something!!! Anyway god bless to you all and thank you for reading my story. sarb.xx 

Natasha Gordon
United Kingdom
July 2006

hi I’m new on here and 33 just been diagnosed with endometriosis, its behind my bladder and on my ovaries. I refused the zoladex treatment they have give me as I'm very hormonal at the moment and can't take any more drugs that will have bad side effects. My mum had hysterectomy who also suffered heavy periods and skin problems like myself. Although she said the hysterectomy helped she still got the symptoms every month.

I think I’m suffering from Candida as well, as I’m suffering from eczema and constipation. I went to my doctor and explained I’m too hormonal and know my body better than anyone and refused to take any more drugs. I've started taking vit b6 and counselling as I’m very emotional about it all, but I really would like to talk to other women about it, and what has helped them.

My doctor said he’s going to find a hospital that does surgery to remove the endometriosis around the bladder. I go to the toilet all the time. My mum used to as well. I believe your body has the power to heal itself, you have to fight, be strong. 

Faith Tancrede 
United States
July 2006

Fortunately for me I have 4 lttle girls, but things have been CRAZY since my 3rd one was born. I went to my regular OB/Gny complaining of pain in my left ovary, he passed it as "normal female issues", puts me on the pill, ok I am BAD at that, told him....nothing.

Pain persisted so I ended up in urgent care where I was misdiagnosed with PID, on antibiotics with a referral to a women's clinic upstairs. So I go there to find out I have this cyst on my ovary, do surgery (9 cm in diameter) and told my chances of having kids not likely any more.

Got pregnant in april of 2005, ok lost the baby at 4-5 wks ( Told my ovaries are covered, diagnosed PCOS. Got pregnant again in june of 2005, hard pregnancy, high risk, blah blah blah, had been pregnant with twins, lost one at 9 weeks, bed rest till 18 wks, had left pain again at 26 weeks, told another cyst, rushed into emergency surgery only to be told I looked fine.

Its in the process of lawsuit right now....switched docs. Go to this new one at 32 weeks (had perterm labour for 2 weeks from 26 wks-28 wks gestation) so delivery took a while and luckily had a healthy little girl :). But now I had blood issues and immense pain, put on methragine (sp) for 6 weeks. things are OK for a little while, still pain but I can take it, so I thought. Went in 8 weeks after delivery for the new sterilization Essure, non invasive and quick recovery.

Well, I was on medicaid till that point, to date job loss and trying to work with chronic pain don’t go well, family starts to sink in financial hardship. After the Essure the pain persisted, mid may went to ER for SEVERE pain, doped me up, deemed it as a ruptured cyst, sent home with a 8k bill. Doctor tries to put me on seasonale (pills don’t do me any good but she does it anyway).

Having to PEE like crazy, sometimes just the mere urgency, seriously tired too, cant be having this with 4 little ones, so this sunday (I still had flexiril from last issue) I have to take it so I can function, meds wear off and viola! pain back with a vengeance. Get into the doctor today who does an ultrasound and pelvic, sees obvious discomfort but tells me for financial reasons she can no longer help.

Refers me to sliding scale docs she knows, telling me she has no idea but is guessing with her education endometriosis. GREAT! what is that? Look it up and find all these things and notice that there are more symptoms I have/had/having that match, like hypoglycaemia, headaches, pain with sex and with menses..... I don’t know how to cope, my entire family is suffering cause mom is ill, could this really be endometriosis? 

United States
August 2006

I'm usually pretty resourceful but Endometriosis has worn me down. Where to begin such a long and depressing story and though I'm usually very optimistic -- today's a bad day. First, I'm in pain all the time. I've had two laparoscopies and one pelviscopy. I've been on lupron, and some super duper birth control pills which blew my weight way out of proportion. Stopped pills -- weight gone. The doctor who diagnosed me with the condition 10 years ago (I was 26) has since retired.

In fact all of the doctors in his office have retired. So get a new one you say? Ah grasshopper, I've been to an army of doctors some familiar with the scourge of endometriosis, some feigning the knowledge needed to tackle this monster. I believe I'm probably still at stage III, I hope it hasn't progressed further but the adhesions from my uterus have found their way to my bladder and bowel -- again. During one laparoscopy my surgeon discovered that my organs were tangled from the adhesions -- so he burned them of -- the adhesions not the organs. With the blockage, I have constipation a truckload of bulgar wheat couldn't move -- so I'm on liquid laxatives.

I have focused on my career and had many successes however because of my condition; I have also had losses and upheaval. Right now I'm focusing on exercise and diet to manage the condition, I've lost weight and I'm trying to stay away from foods with toxins. At least it makes me feel better mentally that I'm treating myself well.

Meanwhile, another surgery is ahead. Did I mention I am now 37 wanting to get married and have a baby? How do you have the endometriosis conversation? Um dear (clearing throat), I've waited for you all my life and now you're here and I know how much you want children but we've got a little problem and its called endometriosis. 

United States
August 2006

30yrs old.....Where to begin!?! I feel for anyone feeling the pain, I feel daily! It’s so sad to have to deal with this, but I guess we all just deal with it because most think we are crazy. I had my hysterectomy 2 years ago, November. I went through it all. I had my son after they said I couldn't have any.....then went through 6 miscarriages.

They finally diagnosed me with having Endometriosis. I went through the shots/patches for 1 1/2yrs and then had the laparoscopy a few times.....then finally I gave in to the big surgery! Everything....took it all! (Was 28yrs. I felt better for a bit and now I am exactly where I started....Horrible pain! I couldn't believe it so I made them test me for every STD known to man (even though I am happily married...desperate to figure it out!) but it wasn't anything but Endometriosis again.

I don't take any replacement therapy (even though I am in the middle of premature menopause, which sucks!) and I still have it. About sex, forget it…..it hurts so badly and I am fearful I will lose my marriage to the disease! They need sex sometime, right! I am desperately trying to figure out what my next move is because the pain is just so horrible! 

United States
August 2006

Hello, I have just been diagnosed with Endometriosis and a Fibroid Tumor the size of my Uterus, in May 2006. I was going to have my tubes tied and in the process of my Doctor doing this he found these 2 things wrong with me. I am 37, soon to be 38 and I was NEVER told about this before. I have had very bad left lower pelvic pain, but I was always told that it was a cyst, they told me to take 800mg of Motrin (this was when I was in my late teens)

When I went back for an Ultrasound, they told me that the cyst went away. My Dr. told me that doing a routine pap, he would not have been able to find this. But I saw the pics and it is truly there. I am an over weight person to begin with and I would like to find a way to change my diet and help reduce these symptoms, I have always had bleeding between periods, but figured this was a way of life, because no one ever found what was wrong with me

Now that I know, I completely understand why I was having such pain and still am. I am looking to find someone to help me with this and so far, this is the only website that I have found to be informational. The "Endometriosis Diet" seems very harsh (I guess because I am not use to any of these foods) but I would love to change this, but not sure how!! If anyone would like to give some suggestions, I would love to hear them. 

Angela Grube
United States
August 2006

I’m considering sending my info to CEC, this is the narration I wrote for that. I write for a living, so I'm sorry If I get a little long winded at times, but it's my profession. First off… I’m in the U.S. Navy, active duty. This means…

1. All my medical expenses are 100% paid for, which is great because I would be thousand of dollars in debt if not. But, they are paid for as long as I use their doctors, I’m not sure if they would clear me to go to CEC, and I know I can’t really afford it.

2. Because I’m using Navy doctors at Navy facilities it’s takes forever to do anything. Every test I get, every doctor besides my PCP I have to be screened to see if I am deserving of their care

3. Unfortunately, I have to go to work, unless I have doctors apt for the same day, I have to be at work, no questions asked.

4. The only way I can leave work if I’m not feeling well, is to go straight to the doctors office and have it approved that I really don’t feel healthy enough to be at work.

5. Fortunately, though, since I am active duty military, they know I’m not “faking” it. They know I’m in a lot of pain, and they are willing to do whatever is necessary to make me feel better, to keep me as healthy as possible, to try and get me back into shape so I can be “deployable” and such..

In January of ’06 my right side began to hurt. It was accompanied with occassional nausea and vomiting. I went to my primary care physician, lets call him doctor #1 and had x-rays, urinalyses and blood work done. They showed an abnormal amount of stool in my intestine. They gave me magnesium citrate to “Clean me out,” but it didn’t help with the pain. I was also sent to another doctor, #2 to have a pap just in case.

It came back negative, but #2 sent me to have an ultrasound and CAT scan. Both came back negative. I had been on the birth control patch for about a year, so she doubted endometriosis, but sent me to OB/GYN. Doctor #3 did a pelvic exam and then sent me to general surgery to see Doctor #4 where I got a colonoscopy, biopsies came back negative.

Had to go back to OB/GYN and see a different doctor, #5. Through out all this my side has been hurting progressively worse. #5 decided on a Laparoscopy to determine if it was endometriosis. During diagnostic laparoscopic surgery, May 31, #5 removed tissue from my right ovary and left abdominal wall that appeared to be endometriosis but the pathology report came back negative. I was put on Lupron after my post-operative appointment with doctor #6, who assisted during the surgery, and was given a 3-month shot.

For a month the symptoms in my right side were gone but I had post op pain in my left side. As soon as that eased up my right side came back with a vengeance. By the beginning of August the Lupron didn’t help the problem. I went back to #5 and he put me on Gabapentin and Amitriptyline with Vicodin for the rougher times and said come back and see him in two months. He also recommended I see a colleague of his, #7.

After visiting her, she seems to think it might be a GI issue. She gave me fibre supplements and said to increase fruit and veggie intake and discuss at my next appointment with #5. Right now I don’t know what to do. It could be endometriosis but the pathology report suggests otherwise. The Gabapentin and Amitriptyline don’t seem to be helping because though I don’t have the constant pain I seem to notice it more when it does hurt, and it usually hurts on a daily basis.

The vicodin does help but I only take it when I can’t stand it any more and only at night because I have to be able to drive during work hours. The doctors would give me a weaker narcotic I could take on a daily basis but I’m allergic to morphine (they found out after my surgery when they gave it to me and I couldn’t breath and got real bad hives) and that’s all I’ve had so they are afraid to try anything else.

Current symptoms include chronic right lower abdominal and lower back pain, painful bowel movements. My quality of life is what’s to be expected with all this going on. If I’m not at work I’m home in bed. I tend to sleep a lot more because the current meds I’m on all cause drowsiness.

Now the Amitriptyline I’m taking knocks me out cold at night. I’m in the military so I don’t have the option of calling in sick; I have to go to work or the Hospital. I hate going to the Hospital because when I last did they just took an x-ray gave me some magnesium citrate and said follow up with your doctor. At this point I wouldn’t know which one I was supposed to follow up with.

It couldn’t be Dr. Quesada because it takes a month to get an appointment at GYN. Other medical issues are urinary tract infections, haemorrhoids, and cervical dysphasia. I've also had painful menstruation as long as I can remember. 

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