Endometriosis Stories - Page 2

Leigh LeRiche
March 2005

An update from Leigh – with GOOD NEWS!!! 

I have previously written in - last year - advising of my struggle with endometriosis and how it affected my life... All my hubby and I wanted was / is to have a baby - well, we have been undergoing fertility treatment and had the insemination process twice, it never worked. We then saved up enough money and went along with the IVF (Invitro-fertilization).

I'm now just on two weeks pregnant !!!!! We are over the moon, totally overwhelmed. I was at the verge of giving up hope, but decided to persist and pursue our dream, and it has finally come true, and we are being blessed. I will let you know how things go, and if I've been able to carry full term, which i'm truly hoping for. DONT GIVE UP FAITH, it will happen in due time.... All the best Leigh xxxxx 

I am sure all our hopes and prayers go out to Leigh for a successful pregnancy and a healthy baby – Lots of love and prayers to you, Carolyn 

March 2005

Renne's bad experiences with her doctor – she advices you to get informed! 

As long as I can remember I have had pelvic cramps I was 11.5 years old when I first went to an OBGYN, but I was in terrible shape. I was haemorrhaging with massive blood loss and agony. I was given a DNC, by the time I was 16 I was told that I had a molar pregnancy, but I was not sexually active at that time. I was scared and confused.

Then they came back and said I had endometriosis and that it needed to be burned off!!! Many years I suffered and seen a lot of doctor's to get the closure I needed. I finally at the last result of my 30th b-day had a partial hysterectomy, leaving the left ovary, but the badly diseased one was the left and they took out the wrong one - that's a whole other story.

Now that I'm 33 I have to have the left ovary removed. I will be put on hormone replacement that I was never put on before, and now I was told that I have endometriosis back again as well.

Bottom line - learn from me, I was put through HELL from a doctor that I thought knew what he was doing, and I was in his best interest. Now longing for another child. I can't because the doctor made that decision, for not only me but my husband, with the big doctor words and the reassuring that this is the only way. Well he is WRONG.

Do your homework, get second opinions and talk to other women in your state and out of your state for guidance. I sure wish I had the internet to learn what I know now has almost killed my spirit as a woman !! THANKS FOR LISTING. RENEE FROM CINCINNATI OHIO 

Feb 2005

Looking for advice about Lupron

I am 22 years old and was diagnosed with endometriosis in June 2004. My life has been totally turned upside down from not only the distress of endometriosis but also the emotional side effects as well.

I started my cycle when I was 12 yrs old and it has never been normal for me. It started out only getting my period two or three times a year for over six years. I knew this wasn't normal but no one would listen to me. I would get horrible lower back ache but never any abdominal pain (this comes later). I was in a steady relationship for 3 years and never used protection ( immature, I know) but I never got pregnant and deep down I knew something was wrong. I went to over five different doctors and not one of them would listen to me.

I started getting dark hair on my stomach, craving food all the time, depression and mood swings, as well as weight gain and hypoglycaemia. I finally started getting really bad cramps on the few times a year that I would actually get my period. I would be out of work for at least three days and was stuck in bed with a heating pad doubled over with extremely painful symptoms and no relief.

As time went on I started experiencing shooting sensations that felt like a knife stabbing though my sides almost on a daily basis. It finally came down to my husband rushing me to the hospital. I was hooked up to an iv and they were pumping pain killers into me every few hours.

I told the ER doctor my history and that this was something I had been experiencing for years and that I tried several doctors and no one would listen to me. Finally and ultrasound (which showed my ovaries to look like swiss cheese due to being covered with cysts) and blood work diagnosed me with Polycystic Ovarian Syndrome. This is a fertility disease of which there is no cure. I had all the signs all along!!

I finally started seeing a specialist and was started on birth control to get my periods regular. I was told I would have an extremely hard time getting pregnant and would need fertility treatments. They also said if I did succeed in getting pregnant I would have a difficult time making it through the pregnancy and would be high risk.

Things only got worse from here, I was extremely depressed because I have always wanted my own children. I became obsessed about getting pregnant and was let down every time I took a test and it came back negative. I felt so alone, no one could relate to me and still can't for that matter. The birth control was doing its job and giving me my period every month except my pain started getting worse every month and all month.

I started having to urinate all the time and my bowel movements were becoming a problem; to make matters worse it was tender during intercourse. Finally I stood my ground and got a new doctor because I knew I shouldn't be in this much agony with the PCOS. I went to a male doctor and he listened to me and sympathized with me more that the female doctors I had. He suspected Endometriosis and performed a Laparoscopy. To no surprise it showed that my bladder was covered with endometriosis as well as my bowel and uterus.

He was not able to remove a lot of it because it was next to too many blood vessels. Finding this out only led to more depression because I had yet another infertility condition. Only a month after the laparoscopy I stopped my birth control and tried getting pregnant.

To everyone’s surprise I found out I was seven weeks pregnant when I went to the hospital for dehydration. I was so happy I can't even begin to try to put it in words. But there was a nagging feeling that something was wrong the next day when I started getting this nagging ache in my left side. I was so scared, I ended up having a miscarriage four days later and getting a d&c.

I'm running out of room so I will finish this up. The symptoms were only getting worse to the point where I was rushed to the hospital from work because I passed out from the pain of my last period. That was 4 months ago now. My doctor put me in medicated menopause with lupron ever since then.

I have three more months left to go and I hate the side effects. The hot flashes, night sweats, depression and I have no energy. All I can think about is having a baby, I was due in April if I wouldn't have lost the baby and as the date fast approaches I think about it even more.

I hate going through this and I hope the lupron helps, because I am considering a hysterectomy, the only thing stopping me is wanting to have a child of my own and to experience pregnancy. 

Feb 2005

I was reading over some of the stories that women have posted on here about endometriosis, and I decided to post a question in regards to this foul condition: I haven't had symptoms for very long, but they seem to slightly match those of the women in the stories. I haven't had my period (due to years of Depo Provera birth control) for over 2 and a half years, but have gotten severe cramping over the past month.

Also included with the symptoms are nausea, lower back aches, and constipation. It's hard to know if I even do have the endometriosis, considering my gynaecologist hasn't pin-pointed anything down yet, except merely suggesting it as a cause. 

Date: Feb 2008

I cant believe that there are so many of us (endometriosis Women) out there. For so long I though I was all alone. I had a complete hysterectomy at age 27. I already had 3 children. So, the fact of having it done, was so exciting esp because I believed that would end all my problems. Boy, was I mistaking. That was only the beginning.

A year later the agonising symptoms ware back. (I did still have my ovaries. My Dr. said they were perfect). I had a laparoscopy done, and I was full of adhesions. He cleaned me out and I was Okay. Well, for about 6 mths. Then it all started again.

Everyone thought it was all in my head.(including my doctor) So #3 surgery, I was once again full of endometriosis and cysts on my ovaries, and adhesions. I felt great. Well for about 3 months.

Then the symptoms came on so strong, every day it got worse and worse. I was on prescription pain medications. It was the only way to make it through the day. I have 3 young children. I have to get out of bed and take care of them. #4 surgery came in July. He took out my ovaries and lasered the endometriosis.

Well, needless to say the symptoms never left. Actually, it was worse after my surgery. I tried to talk to my doctor but he released me of his care and referred me to Pain Management. He said that there was nothing left in me for him to take out or treat. 

So, here I am scared, in agony, and now my doctor releases me. I found another ob/gyn and he tried to tell me I was having a flare up. I said he was crazy. He wanted to treat me for IBS. I had a barium enema done. Low and behold the results came back Negative. I told him !! But they never listen to us. They think its all in our heads.

I found another doctor who really seemed to care. So in Nov I had surgery#5. there was a piece of my ovary left in me, which was covered in cysts. I was full of endometriosis. Anyway, I felt great for about 3 weeks. And ever since I haven’t gone a day without symptoms. My doctor (of course) wanted to treat me for IBS. I said no way.

I have come off my hormones. Since oestrogen feeds endometriosis I'm staying away from them. I started taking Pro-gesterone cream. It helps with the hot flashes and mood swings. But I haven’t noticed anything else. I can't eat. I feel like I could sleep 20 hours a day and still be tired. I catch every cold that goes around, my immune system is down. I take multi-vitamins, multi-minerals, vit c, d, e, b, iron, and calcium every day.

I quit all sweets and caffeine. I buy my meat without hormones. I eat only raw fruit and veggies. I drink only water. I sleep every night with my heating-pad. I have tremendous faith in God. I wouldn't have made it this far without him.

My husband is awesome. He's been my strength. He has missed so much work. Thank-you to all who have shared your life, I don’t feel alone any more. We all suffer. We have to get through this, and stop letting this ruin our lives..... 

Nancy Ann
Feb 2005

Hi, I was 29 when I started to have these awful periods. I would cramp and bleed very bad, of course as a teen I had very painful periods as well. I had two children and both by c-section. After my second child was born I had my tubes burnt and tied. BIG mistake! I wouldn't have done it at all, but I didn't want another child at the time. I was 25, and two was all I wanted.

When I was 29 like I said things changed, symptoms of very bad periods, cramps, PMS, heavy bleeding. I went to get my yearly check up and I knew he would find something wrong with me. I got the phone call, he wanted me in his office for biopsies. He said I had a pap to come back and it didn't look good. So off I went through a very painful day at the doctors office. I had pre cancer cells, I was scared and knew that wasn't all that was there.

Endometriosis can't be found unless you find it inside your body. An x-ray won't find it. Well after finding the pre-cancer cells and I had a family history of cancer I didn't want to take the chance of it spreading. I was going into cancer, at 29 just like my Aunt did. 

So I had a Hysterectomy, they removed everything but one ovary. My doctor told me after the surgery that I had Endometriosis, and it had been there ever since my son was born. I had it for 5 1/2 years. The endometriosis had spread all over my pelvis, it was like gum they said. It was all over my bladder, bowel, ovaries, tubes, you name it, it was on it. They burned it all off of everything. After all that I was fine for a while.

Years went by, I had a cyst come up on my ovary that was left. It was big, and needed to come out. It was causing too much pain. So I went in and they cut me again where I had my c-section. The Doc told me that my endometriosis had come back and they had to burn it away again. 

Years have passed now, I am 42. (I have had eleven surgeries through my life time.) I am still scared of it returning, because I have been having some pain in my pelvis like before. I suffer from Chronic Fatigue, and Fibromyalgia. I have been sick for years now. I have lost over 66 pounds because of all the sickness. I can't gain weight if I do I lose it in 3 days. I am very tried a lot, and I have ran a low grade fever for 2 years now.

I am on hormone replacement Celestin, I am also going to a pain management doctor, and I take muscle relaxers and pills everyday just so i can get out of bed. If I am not too tried I get out of bed, my body aches all the time. I use to feel great I was wonder mom for years. I don't know what happened, I have been through every test known to man and nothing.

I see a shrink, I am on Xanax for the stress of just everyday living. I am blessed though I have a supportive hubby, he loves me a lot. He is always there for me when I feel my worse. 

Lyn Willis
Dec 2004

Okay, No symptoms of distressing or abnormal periods, no cramping etc..... I have one child and have tried 5 yrs. for a second, and have been unsuccessful. 2 fertility specialist, just from a vaginal exam, say 99% Endometriosis, 1% chance of getting pregnant. What? no pain, no suffering, nothing, and from reading the stories today, and seeing how many women suffer from Endometriosis, I have not experienced any where close do what these women have experienced.

The doctor said I have a tilted uterus, well after some research, many women have a tilted uterus, and has been said not to be a concern. Lynn 

Elle Wilson
Dec 2004

December 2004. I got my period when I was 14 and well the symptoms just started from then on. I have been to many doctors over the years and quite simply told that I was a woman and needed to just get over it. My friends never understood what I was going through and I was pretty much called a hypochondriac.

I am now 24 and was diagnosed with endometriosis in June of this year. I had my daughter in April 2002, the pregnancy was hell for me, my mum had always told me that being pregnant was wonderful and that by enjoying it, it would help me bond with my baby, but to be honest I just wanted her out. I could not stand up straight and constantly had pains. I have been told I have a miracle baby and that my endometriosis is so bad that I never should have fallen pregnant.

Sex after the birth (of course we waited) was dreadful, I would often just grin and bare it for the sake of my partner. I remember waking up one day with pains that I was convinced were appendicitis, my partner just thought that I was overreacting. I drove myself to the doctors and was immediately told that I had a pelvic infection. I took the antibiotics for a few days but I was feeling worse, I went back to the doctor who just prescribed me with different medication.

I had been to the hospital twice during my course of medication and sent home with pain killers. I remembered my sister telling me that her friend had endometriosis and decided to ring her to find out the name of the doctor who had helped her. The doctor was amazingly sensitive to my feelings and I found myself sitting in his office for over an hour while he made an emergency appointment for me to see a specialist (he thought I had an ectopic pregnancy), but he had not ruled out endometriosis.

I went to my specialist and after having an ultrasound was told that my uterus was retroverted and would need surgery to be fixed. The specialist told me that he was also going to do a laparoscopy to rule out endometriosis. I woke from my operation in immediate pain, I was given pain killers and told that they could not give me much more until I had seen my specialist and he could explain what was found.

I had 5 procedures done on me during my laparoscopy, and yes, endometriosis was found. I was told that it had been 'burnt' off and that I would feel much better after I had recovered. It took me 12 weeks to recover and it has been 5 months since my op but guess what ladies???? it's back and today I find myself surfing the net looking for answers on how to deal with this.

I have read all your stories and they scare me but it also helps me realise that I'm not suffering alone and that mine could be a lot worse. I am so sorry for what many of you have gone through and I pray that one day soon someone will miraculously discover a cure for all of us.

I just hope that this time I can be strong enough not to let it ruin my life and my relationship. My only advice is to hold your loved ones close and explain things to them because I'm sure that if your moods are anything like mine, they are suffering too!!! Stay strong and healthy, Elle 

Leigh LeRiche
Oct 2004

Hi there, I'm actually from South Africa not France as indicated, there was no option for me. I discovered i had endometriosis about 5 years ago - it was really bad then. Was having an operation every 3 months. The doctors could not find my ovaries most times, they had to lift my uterus as the endometriosis had gone behind and under it.

My last operation was the 22nd August 2003 - and I've been clean since then. My husband and I are trying to have a baby for the last 6 years, so this has been a huge obstacle for us both. My ovaries are badly scarred due to the endometriosis, and I was given a 1% chance of having kids ever. I'm currently on my 9th gyne in the last 5 years, as not many doctors are familiar with the endometriosis, the causes and the treatments.

I was totally beside myself when I was diagnosed 5 years ago, to know you have a disease is a frightening thing. Then I did research, and lots of it. I have a lever arch file at home just on endometriosis, mostly from Carolyn here at Endo Resolved on how to manage, cope, and conquer this disease.

I also went to the library, and gathered a lot of info there also. Some scary things came about, and I thought there and then, do I take all this in and use it constructively, or do I just sit back and allow this disease to run all over my body, and shut me down! Absolutely not !!

As mentioned previously, I've been clear since August last year - that is a whole year (and two months) without an operation! My secret: eating correctly, exercising in moderation, changing my lifestyle, and in a good way. I've not as yet bought any of Carolyn's books, but I certainly do plan too.

My husband and myself went to see a fertility doctor, and we / I had the insemination done last week Wednesday - I now have to wait for two weeks to do a scan to see if it has taken or not. I went on fertility tablets, to create not only one ovary, but two on the left hand side, and two on the right hand side - hopefully it would of taken at least with one. They actually insert the "goods" (hubby's goods) straight into the uterus at ovulation time...I will definitely let you know if it has worked or not. But if not, there are other options, IVF (In-Vitro Fertilization) when they take the ovary out and then fertilize and place back to develop!

There are ways, so if you are trying to have kids, DON'T GIVE UP - I'm certainly not going to. I was told 4 years ago, my endometriosis is so bad, my ovaries are so damaged, if I don’t have kids in the next 6 months I will never have! that has not stopped me! and won’t either...there is always adoption?

I would love to hear of your story, and how you have managed / coped with endometriosis? I love advice, and to hear of things that are working for others - maybe it could work for me too. All I can say is: "Carolyn - THANK YOU for all your inspiration and courage you have given me to get through these difficult times I have experienced" Best Regards Leigh Le Riche 

Oct 2004

Hi, my name is Tanja, I am 24 yrs. old and I was diagnosed with endometriosis 2 years ago ... as a teenager I always had bad periods, with vomiting, and severe agony, but my doctor never took it seriously. About three years ago I had my first visit to the ER with what they thought to be a ruptured appendix, which of course it was not.

My symptoms were so bad that I had to be in the ER several times a week, for pain management and every time I went it was the same old spiel, I'm either pregnant or it is my appendix. Finally after months of ER trips my doctor sent me to a specialist, I had a laparoscopy, where they removed the implants and did a DnC. I was informed of what I had and told not to worry, and the surgery should relieve it.

It was a month later that I started getting more symptoms than ever. That's when the different medications started, from birth control, to cyclomen to Lupron, they tried it all, then I did a special diet, very similar to the one described here, but everything just seems to work for 2-3 months. (The diet worked for 6 months). The worst was Lupron, the side effects made my life hell.

For me the worst feeling is that most people don't know or don't understand this disease. My daily life is interrupted so much, I cannot wear heels because it hurts, I cannot stand for too long because it hurts, I cannot do sports because I start bleeding right away. I missed school regularly and I miss work, what I wear, how I sit it - all affects my endometriosis, and it really sucks.

My symptoms are unpredictable. I have gotten used to living with discomfort on a daily basis. I had to leave work two days ago because I passed out from the pain, my co-workers think it was because I had too much fun at a party.

I feel bad for my husband, he had to endure so much, the side effects from medications, the unexpected calls to pick me up and take me to the ER, the fact that sex has to be scheduled and carefully planned out. We want to have children, but were hoping to wait, since we both just finished university, but I am scared that if I wait too long it will be too late for me.

My doctor does not believe in doing too many laparoscopy surgeries, he says they do more damage than good, I wanna agree with him, but at the same time I want to know what is going on inside of me. So now he says I have three options left, have babies, a hysterectomy or deal with the symptoms.

I decided in July not to take another Lupron shot and not to go on birth-control, well it lasted...for awhile at least. I managed to only get pain during my period and so it only incapacitated me for 2-3 days at a time.

I don't know if reading these stories helped me or scared me more, it just comforts me to know that there are others who know what it is like. Thank you for your stories. 

Margaret Moran
Sept 2004

My name is Margaret, I am 25 and have been dealing with this illness for almost 7 yrs and female problems for 14 yrs. It all started with my first period at the age of 11. I was always sick and my periods were never on time or I wouldn't get them at all. Well, the doctors just told me I was young and very athletic and it was all completely normal.

By the time I was 15 it really started getting out of hand because all the other girls were having normal periods and never experienced the pain that I quite did. So, I went to the doctors again and they had me see a nurse practitioner because my problems weren't serious enough to see the actual doctor. Well, thank God they did because she told me straight up, "you are either pregnant or you have an ovarian cyst".

Well, I wasn't pregnant so I had my first ultrasound and pap smear done at the ripe old age of 15. I was also put on birth control to get rid of the cysts, which didn't help at all. I was loosing my friends and hurting at school because I was always sick and had a boyfriend that was getting real tired of hearing me say, "I'm so sick".

Well, I continued life the best I knew how and was in the doctors about once a week, having ultrasounds done about once a month, and changing birth control pills about every few months. By the time I was 17, my doctor discovered two abnormal cysts and told me we need to do a laparoscopy. When the laparoscopy was done he told my parents that they got them and also a tumor which was benign. I had 2 long weeks of recovering from my laparoscopy.

I also should add that my maternal grandmother died of ovarian cancer and this was on my mind the whole time. Of course, my depression went into a downward spiral and things were only going to get worse. I also started to develop anxiety. Well, shortly after the surgery I was back to the doctors and ultrasounds. My senior yr I was unable to swim or cheer because my grade pt average was .1 below due to having surgery and being ill and life wasn't improving much, except for meeting a great guy.

Now, I am 19 and still dating this great guy(Robert) and looking at getting married soon. He was in AIT in the Army and I was working at a horrible job and put college on hold. I went to the doctor and told him something is wrong and I know it and he (not to happily) said, well we can do another laparoscopy and see if anything is going on. So, I agreed to having it done and at the post-op he told me that he was surprised to find endometriosis and it was severe. He also said, "I got what I could, but I couldn't get everything".

Endometrio-whatsit, I had never heard of such a thing. Then he continued to tell me that if I want children that I have to start now because everyday that goes by is less of chance to have children. Well, Robert and I agreed on a date to get married which was about 3 mths away, so I luckily had a quick recovery and had my mind in other places. So, on 9-25-99 I was married and we had about a week together before he had to leave for Virginia and on to Arizona.

I became very crazy/scared and would tell him we have to get pregnant now and he would tell me to calm down and realize that he isn't even there to get me pregnant. Time went on and I was still sick all the time and after 4 mths of living apart we finally got to be together and he for the first time got to see the real me, the endometriosis me. I get the worst nausea to the point of passing out on the bathroom floor.

When he first saw me in this state he freaked out and didn't know what to do and now he knows to just leave me alone. In about spring of '99 I started bleeding rectally and it totally scared me, I made Robert take me to the ER because I thought I was dying. My mom and I decided that I need to go to a new doctor so I drove to Fla and went to this one who went to our church, he wasn't all that great, but found a new cyst and suggested I go to a specialist in Winter Park,Fl.

I went and he seemed real nice and I felt like maybe I am finally going to get some help. He told me he wanted to try me on Lupron and said their were some side-effects, but nothing horrible. I made it 3 mths out of 6 on the Lupron. I gained 40pds, I was having horrible hot flashes (to the point Robert would cover me in wash clothes while I was sleeping to cool me off), migraines, major mood-swings and worst of all it never stopped my periods, so I was still dealing with the PMS, bleeding, and of course nausea.

I tried calling him and he would never talk to me so I decided I would make another appt, which meant I had to drive from Ga to Fl for this. I went in with my mom and I started to cry and I said, "all I wanted was help", he then tossed a box of Kleenex at me and told me to get out of his office he wasn't going to deal with me any more (just fine w/ me).

In 2002, I had a colonoscopy for the rectal bleeding and the doctor said, I would have to do it over and closer to my period because he believes I have endometriosis their, but he can't see it because its not flared up. I then had my 3rd laparoscopy, by a military doc and I woke up in the recovery room in so much pain(screaming bloody murder). He didn't spot the endometriosis that time, but believed it was in areas he couldn't get to, but did however fix some areas of scar tissue attaching itself from organ to organ, and also discovered I had a clogged right tube and didn't do anything about it.

What was supposed to be a day surgery treatment, took 3 days for me to leave the hospital and 2 wks to recover, and I have never really recovered. Needless to say I wasn't going back for another colonoscopy.

I started to get symptoms of severe lower back ache about a yr ago and it gets to the point I can't walk/ bend over and I am still dealing with daily nausea, hot flashes, sharp pains on the right side and just trying to get through one day at a time.

Today, I am 4 days on the Progesta-care and going to try out the diet, otherwise looking at hysterectomy and adoption. I owe many thanks to a wonderful husband, a comforting mother, two dogs that are always at my side whether I am in bed sick or up feeling good. 

Morgan Bozzo
August 2004

I am 24 years old, I was diagnosed with endometriosis barely one year ago. It first started with painful intercourse. I had my last child in august of 2003 and I had a tubal ligation, after that is when my symptoms started. After my six week recovery I was looking forward to not bleeding any more, well that never happened!

My doctor put me on birth-control to stop my bleeding. The first one didn't work so he put me on another, that worked for a couple weeks then the bleeding started again. He then decided with Lupron treatment, that worked for a few weeks then the bleeding started again. I then had a laparoscopy and he put me on ortrha evra patches to stop the bleeding. That worked for 2 weeks and here I am bleeding again.

I have been married for two years and my marriage is already in major trouble because I cannot be intimate. I feel like my world is falling apart because of this. I feel my only option is to have a complete hysterectomy. I am only 24! I estimate that there has been a total of 3 months out of 13 that I haven’t bled.

I suffer daily with painful stymptoms and bleeding and it seems to be hopeless. I am grateful that I have my children cause I know that my only other option is a hysterectomy. Endometriosis has literally destroyed my life! 

July 2004

I am new to the endometriosis scene - only having been diagnosed since January 2004. I am 35 now and I was married for the second time in September 2001 and my husband and I decided to wait a couple of months before trying to conceive. We tried unsuccessfully for about 8 months and then I went in to see an obgyn, who had me chart my temps. I did this for about 2 months with no success and then we talked about doing a laparoscopy on me in Dec. 2002.

The laparoscopy proved to be of some use in that it showed the doctor that I had a uterine fibroid that had my cervix closed shut. He dilated me open and said that he saw very minimal endometriosis but nothing to be concerned about. After 2 post-coital tests and an HSG test, nearly 6 months later, nothing was happening. I complained to the doctor that I was starting to feel things - like painful lower abdominal cramps and problem bowel movements where I would nearly be throwing up.

I told him before my initial surgery of my family's history with this disease. When I approached him 6 months post-op, I was basically dismissed as a nut-job so I went in search of another obgyn who would talk to me about my situation instead of shuffling me off down the road. My new obgyn ordered the post-op report from my other doctor and said that the "very minimal endometriosis" was of concern to him.

He monitored me for a few months and put me on serophene, but still nothing was happening. He decided he wanted to do a 2nd laparoscopy on me in January 2004 and discovered that I had Stage 2 endometriosis, bordering on Stage 3. The surgery showed that my right ovary was nearly consumed with "chocolate" endometriosis and was pulled by the scar tissue behind my uterus. He lasered the endometriosis out and saved my right ovary. My left ovary showed some signs of endometriosis but he cleaned it out too. He cleaned out everything, even my tubes and I went home that evening. My recovery was slower than my first lap.

I went in for my one week post-op follow-up and he showed me the pictures and I sat there crying my eyes out 'cus it just looked so horrendous. We decided to put me on zoladex for 3 months to suppress my cycles and put me into a menopausal state to suppress the microscopic endometriosis that he couldn't get out. It took 13 weeks for my period to come after the last zoladex injection. My period wasn't as bad as the others had been before surgery. He put me on serophene again.

I believe the drug is messing my cycles up. This past Sunday, I started spotting as tho my period was gonna show and I had spotting for 3 days since and now nothing today. I read that taking evening primrose oil is good for pms so I started taking it on Sunday so I don't know if that had anything to do with my spotting, thought it shouldn't have.

The endometriosis ride has been a very emotional one and I'm trying to take things as they come. I can relate to you all out there with the frustrations of ill-mannered doctors and their misdiagnoses. We just have to remember to be good to ourselves and take one day at a time. Thank you for letting me share my story with you all. 

July 2004

Hi. my name is Beatrice and I just wanted to share my story with everyone. I am eighteen years old and just had laparoscopic surgery to diagnose endometriosis. The doctor performed the surgery and he found nothing. This has left me feeling very frustrated because I know my symptoms are real and that there really is a problem.

I read somewhere that sometimes endometriosis does not always show up during the surgery. Is this true? I am very frustrated because I would really like to know what is going on here. If anyone has any help or suggestions please write to my email address. I would really appreciate it. Thank you. 

July 2004

Hi, my name is Andrea. I am 18 years old and I have been having pelvic cramps for about two years now. When I realized that the pain wasn't considered "normal", I decided to go to the gynaecologist. The doctor gave me a pelvic exam and then ordered me to have an ultrasound. The ultra sound came back as normal, and months had gone by, and by this point I was very frustrated with myself and the doctor, knowing that something was wrong but we just didn't know what.

After this, the doctor put me on birth control pills. For the week I took them, I had a horrible reaction to them. I broke out in a rash on my face and could not sleep at all for the week I took them. I had been keeping track of the symptoms for a while on a calendar and the doctor wanted to see it. When he looked at it he told me the pain was probably just due to ovulation. I knew it wasn't though.

Before that, I had read something in a magazine that described my symptoms fully. It was Endometriosis, which is very prevalent in my family. After this, I told myself that I did not want to go back to a doctor's office no matter what, because I did not want to listen to another doctor that would not listen.

Fast forward.... The symptoms soon became worse with each passing month. Each month the pain would last longer and was more frequent. I decided to see the gynaecologist again, stating that I did not want to have another internal exam, and that I just wanted to talk about the symptoms and maybe go on the pill again. At the appointment, I talked with the doctor about my symptoms, so he told me that they would do another ultra sound, I didn't see the point because the last one had shown nothing out of the ordinary.

He said that if this came back regular that they would schedule me for a laparoscopy. I am scheduled to have this surgery July 19, which is coming up pretty quick. I am scared because I have never been in the hospital before for surgery. 

July 2004

I was trying to get pregnant for two years with no success. I went to the doctor who sent me to do some test. The test claimed I had a blocked left tube. Surgery was planed. After the surgery my doctor informed me it was actually endometriosis. I had no idea what this was. Thank god for the web. I was put on lupron which cost me a fortune. I went through mood swings, depression even hair loss with this medication. I’m now separated from my husband and I do believe this was a factor as he did not understand my mood swings and depression so we constantly argued.

Luckily I did have a son before but it hurts to know I can't get pregnant just like that. I’m trying again to get pregnant, I just pray it will happen before the year ends. I am pleading to god my son is eight he needs a sibling.

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