Endometriosis Stories - Page 2


Leigh LeRiche
France
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 



Renee
US
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 



Kayla
US
 

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. 



Corrinne
US
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. 


Anna
US

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
US

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
US

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
Australia

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
France

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 






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