Endometriosis Stories - Page 3



Sherry Ramirez
US 


I am now 33 years old. I was diagnosed with endometriosis at the age of 30, right after the birth of my last child. I started to notice spotting when ovulating and menstruating. It worsened with aching radiating from inside out on my right side and out my lower back on the right side.

I sometimes describe it as a feeling that something is eating away at my insides. I had a laparoscopy done in jan. 2003. Then endometriosis was confirmed and lasered off. A few months later symptoms returned.

I had tried 3 different birth control pills and had the laparoscopy, and it still returned. I decided to have a hysterectomy. I knew we were done having children, thankfully. I had it done in Jan. 2004. 

They did ultrasounds and vaginal ultrasounds and showed nothing. My doctor decided to try me on the pellet injected into my abdomen to put me in menopause. It lasted a few months and I started having symptoms again.

He decided to go in and remove my ovaries, fallopian tubes, and a 1 1/2 inch section of my vaginal cuff. When he got in there he discovered, even after having had a hysterectomy a year prior, my appendix was attached to my right ovary, and my intestines were wrapped around my left ovary.

He was shocked at what a mess it was in there. None of the ultrasounds had shown any of this. He removed all he could see, along with my appendix, ovaries and fallopian tubes, and section of my vagina.

I had this surgery in Jan of 2005. It is now March and I have begun, once again, to have symptoms. My doctor thinks I have microscopic endometriosis cells and the only way to treat them is with the depo shot. 

I feel this has consumed my life and want nothing more than to have this monster out of my body. My doctor is now treating me with depo provera shots, in addition to my estrogen pills. I have heard bad things about depo and I am worried about side affects.

I just got my first shot 3 days ago, and though I am worried about the side affects, I pray this combined with the estrogen will make me normal again. For my sake and my family. I truly feel for all out there who are living with this disease. 


Magdalene Joubert
South Africa
 


One cannot believe there are a lot of woman suffering from this chronic disease, I am here to also tell you my story: It all started from 14 years of age, at school I would also have these huge cramps that would make me scream for days and it did not get any better.

I am 26 years of age and have been married for 5 years. We have decided together that after we got married that I should go off the pill and that if the miracle happens so be it. Well after 4 1/2 years still no baby, something told me there must be something terribly wrong. 

Endometriosis was diagnosed, and in the last 2 years I have had 2 Laparoscopies and one laparotomy (to remove a huge growth off my left ovary). The end of the story is no new active endometriosis only blocked and damaged Fallopian tubes with no function any more, adhesions/scarring almost all over due to previous surgery.

The only option that they have given me is to try the IVF, as you know this is very costly probably all over the world. I underwent another Laparoscopic procedure on the 2nd of March 2005 with two professors and it seems like most of the scarring has been removed and the Fallopian tubes, and they are now clear and free from growths. Thank you for all your stories, it makes one feel not so alone. Will keep you updated as I need to see my Gyne that did the last op to discuss the way forward. 


Nariah Davis
US


Where do I begin with this nightmare. I started having my cycles at the age of 10. By the time I was in high school I noticed I was having very heavy bleeding and quite a few blood clots, my doctor said 'oh that’s normal'.

My mother bless her heart would say lay down with a heating pad and take a couple of aspirins. So I just paid no attention and kept suffering with severe cramps, blood clots and bowel troubles and irritability and depression at times.

My mother died after I finished high school, I was only 18 at that time, and all hell broke loose. I thought it was because I was struggling to get over her death that was causing me to be sick but it wasn't. I thought I had some kind of food poisoning, went from doctor to doctor, checked my colon for polyps, nothing, just stayed sick.

I thought I was going to die at one time because I couldn't keep any thing down. People even accused me of being pregnant. How in the hell can I be pregnant when I was still a virgin (no lie). I knew something was not right. 

I started having bloody stools, nausea, vomiting, huge blood clots, and very bad cramps. It got so bad that one day while driving home from school I had to pull over to the side of the road because I was in agony, oh by the way I was 22 years old at the time, so that meant more time had been wasted.

Needless to say I went to ob/gyn at women’s hospital and he ran some tests, ultrasounds and the like, and he could not find my left ovary because it is the size of a baseball, he scared me because he 1st thought it was cancer; I cried like a baby. Well any way after performing surgery he discovered it was endometriosis. 

And now I am 28 years old and the treatment option is estrostep birth control pills. Thank God the only side effect has been my blood pressure has increased. But I exercise regularly, eat right to help control that.

I felt like I was the only one in the world that this has happened to, but since doing research it’s comforting to know that you are not alone. The only thing I regret is that no one told me about these kinds of disorders earlier in my life.

Maybe if I could have started taking the pills earlier I would have never gone through all this misery. Anyway I feel a lot better since taking the pill. I never knew that you could take the pill for medicinal purposes but I'm glad to know. You know the strange thing about it is, one of my cousins has the same damn disorder and we are the same age. I wonder if it hereditary. 


Christine Taylor
US
 


About a year ago I began having yeast infection after yeast infection and constant vaginosis. Then about six months ago I started having constant abdominal cramps, which felt a lot like my right ovary was swollen. It went on for about three months and has now mostly stopped.

Just the other day I experienced a stabbing sensation on my right side, somewhat in the appendix region, that lasted for over 8 hours and made it almost impossible to walk and made it impossible for me to straighten my stomach. I used to have this same type of pain when I was 16, and I am now 20.

I have had an ultrasound and a cat scan of my stomach and they both have come back normal. I am devastated at the idea of not being able to have children and it has made this last year of my life horrible. I keep going to the doctor and there is nothing... they don't know anything.

Endometriosis has been mentioned as a possibility. I feel as though I have to be in constant pain for anyone to take me seriously, even though I know something isn't right. I have been on birth control since age 17 and have had regular periods. 


Sharon Tudor
UK


Well it all began when I started my periods at 9. Yes I know I was very young, but I can remember even before starting being in and out of hospital for stomach cramps. After many years of pain and numerous amount of hospital appointments, I was told that I had IBS, cysts on my ovaries and that it was all in my head, I was diagnosed in 1990.

I was told that there was no chance that I could have children and the best option was for a hysterectomy. I decided to suffer and before you know it I am 30 and have three children, one 8, 4 and 1.

I have suffered for too many years and tried every medication going and am now scheduled to have this operation in August 2005. I am hopeful and I know that there are a lot of factors that this might not cure this horrible condition, but I will give anything a try not to go through this 3 weeks out of every month. I am so sick of being tired all the time and having no energy. 


K Ramlall
South Africa


Hi there, With regards to endometriosis my doctor advised inserting the Mirena is the wise option for treatment. I was suppose to have this done 3 years ago but heard some negative stories hence left it. A recent visit meant him reiterating the same advice. However, I have been looking up info & it seems many people had some terrible experiences.

I have no kids but plan to have in the next 2 yrs. I’m' 27, medium built, height. Can anyone out there give me some advice please if you had it? I will really appreciate it. The side effects are worrying me as it incl. headaches, weight-gain, vomiting etc. I see it hasn't happened to everyone however its common yet I was told the mirena has little to none side effects. 


Julie-Louise Simoneau
Canada
 

I am a 30 year old stay at home mom with 3 young children, 6 Jessica, 5 Alicia, and 4 Pacey. I am very lucky that I got pregnant. I was told when I started my period at age 13 that I was a person who just had bad menstrual cramps, until the day that I was in the shower and passed out, my older brother came in picked me up and brought me into my room and covered me up and kept me warm.

I had already been on the pill for almost a year. This was a normal thing for me. Dizziness, bloating, mood swings, the heavy periods with big clots that were sizes of eggs. I had to wear 2 pads at a time to cover the back and front and this was during the day.

With time and being on the pill for many years, In 1998 my boyfriend and I were talking about having a family and I stopped the pill and the first month I was pregnant. Still not knowing all this was endometriosis I gave birth Dec 24 1998. I was breast feeding when I got pregnant for Alicia, Jessica was 3 months old.

Alicia was born January 7 2000. She was now 3 months old, Jessica was 1 year and 2 weeks and Pacey was announced to be coming. After the Birth of Pacey February 3 2001, the pain was unbearable.

Now that I was older I couldn't take the symptoms. I would feel my ovulation and could tell what side I was ovulating, then I would start 1 week before with the very bad mood swings, the bloating, clothes would not fit.

One day my yearly check-up with my doctor who followed me for the pregnancies came up, and I asked him for something stronger than the tylenols and he sent me for an ultrasound which came back positive for endometriosis.

The person doing the ultrasound found it a miracle that I had had 3 children. I had many cysts. With these results my doctor wanted to try and reduce the cysts with medication. I tried the Depo-provera which made me depressive, at first it was working so I thought even if I am feeling down at least the symptoms are no longer there.

But then one day I wake up and it started again. This period lasted 4 weeks, and when I went to get my shot, the doctor giving the shot sent me home without the shot and said wait until your time is up. Since September 2004, (we are now end April) I have been on a pill that I take every morning called megestrol which has not made me have 1 period since.

But the weight gain is 25 pounds so far, the cravings for sweets, food chomping just to have something to put in my mouth. I saw my doctor last month and he laughed and said it is normal, 'I told you there would be weight gain like the other medication'.

When he came to write up the prescription he looked at the name and said this medication is also used for anorexics and bulimics (sorry if misspelled). It activates the cravings, keeps fluids so I can drink my 6 glasses of water a day but hardly go to the bathroom. 


Katie
US
 


I am sixteen years old and I started having symptoms in the pelvic region. I went to the doctor and I had some simple testing done, like urine test and an ultra sound. He told me my tests were fine and the symptoms were most likely caused by ovulation.

When the symptoms didn't go away for 2 months and my period didn't come one of the months I didn't understand. At track one day the pain was so bad I had to leave to go home. The next day my mom took me back to the doctor. He referred me to another doctor.

So now it is believed I have endometriosis, and in 3 months I go back and see how its coming along. So far nothing has gotten better but only worse. Each day I seem to develop another symptom. All I have to say This Sucks! I’m a little worried about it too. Well in 3 months I'll let you all know how it went. 


Lindsay
Canada

I have been suffering from chronic pelvic symptoms since I was 16. At that time I had my first laparoscopy which found ovarian cysts and endometriosis, although the ultrasound had shown almost nothing!

Since then I have had three other laparoscopies to remove everything, and each time the ultrasounds showed nothing at all and there was less to remove inside!

So frustrating! It is so hard to have everyone think it's "in my head", and to get annoyed by me always saying "I'm so sick!" During this time I have been pregnant five times, three miscarriages and two beautiful children, I'm very blessed. But my pain still continues! I had my second child just four months ago, and I swear she wasn't a week old and the pain symptoms all came back.

Fullness in my lower abdomen, constant aches on the right side, sometimes shooting down my leg or into my hip! And once again, the ultrasound was NORMAL! So, I declined another laparoscopy and have pretty much given up on ever treating this. My doctors have all basically said I just have to live with it! 


Abbey Gear
Australia
 


My name is Abbey and I have suffered with severe endometriosis since I started menstruating, I am 23 y.o and got my period when I was 11. We went from doctor to doctor with all the symptoms but they kept on telling me I would grow out of it cause I was too young.

When I was 17 I had a laparoscopy to diagnose the condition. It was classed as severe with nothing they could do with surgery to treat it (the surgeon actually told them to sew me straight back up) only hormone drugs.

Well as many of you who have been on hormone drugs know, its like a roller coaster ride that you can't get off. My partner has been very supportive, but I know there are days when he would like to put me on the roof! I finished a hairdressing apprenticeship a few years ago and just recently quit my job due to the endometriosis.

My boss was at his wits end with me taking time off, squatting out the back in pain, and generally not being well enough to cope with the 9 hours on your feet and no lunch work schedule.

I now do some hairdressing from home but I have to be flexible to fit around the condition. Today I am having another operation as treatment for endometriosis and hopefully I will still have my fertility intact afterwards, as now I contemplate the likelihood of early motherhood (if any).

I needed to get out my story to: 1-keep me occupied before my op and 2-to let women know that your never too young for endometriosis, no matter what the doctors say.

They didn't think it was possible at my age let alone severe, but I have it and now they must deal with it. Most of the time I get sent from specialist to specialist because nobody knows how to treat endometriosis, and they keep telling me I'm a textbook case, so if anyone out there has had anything that has worked for them I would love to hear from you as I am willing to try anything. Every time I get sent to hospital they threaten me with a hysterectomy.  


Michelle Lonergan
US
 


Since I was 16 years old I've had major pelvic discomfort. I went to the doctor who told me that it was all in my head. NICE! Then when I was 21 I had my first child. Of course I had problems. Went into premature labour when I was 6 months. My child was born 6 weeks earlier. Then I got pregnant with my second child.

Come to find out that my placenta was ageing faster than the baby. Then when I was 28 I got pregnant again. I had to have a C-section because my baby was breech. During my C-section the doctors started taking pictures of my insides. When I asked them about it, they said that they seen something and wanted to get another opinion about it.

Well after my forth child I had my tubes tied. Then at 30 my period had gotten really heavy, the symptoms were really bad. So I went to another doctor. She told me I was going through my change. That I didn't believe. So I got a second opinion. This doctor told me I had a cyst on my left ovary.

So I was fed up and thought I will just deal with the symptoms. But after 2 years it was getting worse!. Next I went to see the specialist. He did an exam which I almost punched him cause of the pain. He wanted to do a laparoscopy surgery for treatment. After I went through that, he told me that I have Adenomyosis and that I also have endometriosis on my uterus.

He said that the only way to treat this problem is to remove my uterus, or if I can deal with the symptoms to let it go. If I let it go my uterus will continue to grow from the Adenomyosis. Plus he forgot to mention the endometriosis will continue to spread. He put me on nothing and basically said to get a hold of him in 2 months if I decide to get it done. 


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