Endometriosis Stories - Page 9


Anna
Poland
Sept 2006


Hello, Before I start my story I would like you to advise to find the best specialist in endometriosis you can. In my case, I trusted my gynaecologist too much. He turned out to be the specialist let's say for soft and not complicated cases. I was 29 years old when I was diagnosed with endometriosis. It was like a nightmare because I knew what my mother suffered from, who had endometriosis as well.

When I went to my doctor and complained about my problems, he ignored the symptoms. What is strange in my story, that I have never suffered from any pain during my menses. He just said that I had had a cyst which would have be be cut out some day. By accident I went to another doctor which diagnosed me with endometriosis. I had a surgery in December 2005. It was another shock to me to know that I had my left ovary and oviduct cut out cause it was totally devastated by endometriosis.


I have only half of my right ovary left with 50% chance to have any baby. I was treated with Danazol for 3 months and stopped to start taking clostilbegyt to stimulate ovulation. Unfortunately, after 3 months I had the reemission of my endometriosis. I started taking Danazol again but now after two-month' treatment I stopped again. During the time of my illness I have been changing doctors because it turned out that one of them wasn't competent enough and I stopped trusting his diagnosis.

Now I have found a great doctor who seems to know how to treat my endometriosis and helps me to get pregnant. My story is a kind of a tip-off. Be sure that the doctor who treats your endometriosis is a well-qualified specialist in this field. 


Canada
Sep 2006

Many of the stories I just read all sound sooo familiar. Missing time from school, work, and relationship difficulties all added up for me too. Since I was 15 I had painful cycles and between cycles. I am now 30, and last week I just underwent the removal of my uterus and cervix. I hope that with meditation and reading, I can find healing and support.

It feels as though life is not fair, and you find yourself angry with those who haven't "walked in your shoes", but still have nerve enough to make rude comments about your situation. I don't blame other people for avoiding the thought of what it would be like to be me when I have symptoms, or miss out on work, etc. It would be good if the people for which a woman has to discuss her medical issues with, could work on solutions for a productive future for her, rather than wash their hands clean of it.

When positive support is given to individuals who are having medical issues, their lives in the workplace, and at home, can change for the better. When I decided to take charge of my life, and make it better, I couldn't have done it without the support of family and friends. I chose alternative methods (meditation, visualization, counselling etc.)as well as conventional means (medication from time to time), and found I had fewer symptoms. Pain from Endometriosis can be reduced but only if you have the right support, frame of mind to make changes, and commit to them.

Making the most of symptom free days was great, but I found myself apologizing more often than not for being absent when I had symptoms. Now I state my reason for missing work, etc., but there is no need to apologize. Does anyone apologize for having a cold? Hormones can change so much about a person. When I read stories about how endometriosis has affected a woman, her partner, her family, her lifestyle and much more, I relate and sympathize.

Finding what works to eliminate the symptoms can be a very big task, not to mention an emotional one. I know that my story is similar, and/or different to other women. At the same time we all share the need to be loved and supported. I'm not sure if I have found a concrete solution for all the symptoms, but I have noticed that different forms of meditation have worked for me on different days. It all depends on the amount of pain I am experiencing. I only hope that what I have written will open up other women to try different methods for coping with endometriosis.

I didn't believe in alternative methods at first. I thought they would be too time consuming and difficult. After only 2 weeks of meditation people started saying to me, "You seem so happy with your life right now". I was and I still am. I have accepted that change is inevitable, and although there are things I can do to make my life better, the present solutions may not work in the future. Alternating what works for you is very helpful. 


Kari Jenkins
United States
September 2006


I am 24 years old and have been dealing with severe pelvic cramps and bleeding for as long as I can remember. I always felt something was wrong but didn’t pay that much attention to it until I started having sex. It seemed like every time I would be intimate with my boyfriend it would hurt for days afterwards. I also was feeling tired all the time and would bleed for weeks. The first time I had a pelvic exam I should have known for sure something was seriously wrong, the exam left me in excruciating pain for a week.

My doctor at the time did nothing except put me on depo which made me bleed on and off for a year. I had even mentioned to her that my cousin had severe endometriosis and two of my sisters had it along with cancer running in my family and she still never tried to see if that’s what was wrong. Finally in 2003 I saw a different doctor that said after the very first visit he was pretty sure I had endometriosis and scheduled me for surgery.

Sure enough he found it all over. He said it was very diffuse and he didn’t take any of it out. I went on lupron and didn’t feel it was helping after four months so I got off. I ended up trying it again for the full six months and felt a little better but still had symptoms. My doctor prescribed pain meds on and off but always made me feel like a drug addict even though I only asked a few times a year. Finally he said he felt he couldn't help me any more and sent me to a specialist in D.C..

The doctors there did another surgery and this time they took out as much as they could. The doctor said I had so much damage in there that no hormones would have helped me. I actually felt relief from the surgery for about a month and a half, then it all started back. I was supposed to be trying to get pregnant but my boyfriend and I had a falling out so there went that idea. In the meanwhile I switched jobs and had no insurance to even get on lupron again.

Whenever I've gone to the specialist I've paid out of pocket and all he can do right now is give me pain meds every once and a while. I have always loved children and dreamed of having a big family one day. I have helped raise my sisters children and work at a day-care but there's nothing like having your own.

The agony has gotten so bad that I have actually talked to my doctor about a hysterectomy. He said he wouldn’t do it. I have come to peace with the fact that I don't think I can have children and feel that God has chosen me to be a foster mother. Right now I still have no insurance and no one will help me get any. 


Louise
United Kingdom
October 2006


Firstly I have not yet been diagnosed with endometriosis, I am currently being pumped full of the combined pill Yasmin (3 month blocks). My gyno said this would help them determine whether or not I have it. I have a swollen lower belly, pain most of the time but it worsens during intercourse, before and during bowel movements, and if I am more active than normal. I have an ovarian cyst(2.6cm), which they thought nothing about, but when I started getting pain when I sat down or had a bowel movement I made an appointment with my gp, who referred me to the gyno.

All I knew when I came away from the gyno was that I was to take bcp's for 3 months then break for a week to help them rule out endometriosis, but 2 days later I got an appointment through for an ultrasound. This made me panic, why did she not mention this at my appt? Surely they must think there is something there when they decided to send me for a scan?!

Anyway, I'm onto the second month of taking the bcp continuously, I started getting what I can only describe as "old blood". I thought it was just because it was when I would usually be getting "aunt flo" but while in the bath I felt a (sorry about this) warm gush, there was a blood clot in the water. I have never had clots before, I felt numb. After the clot, I bled for more than a week. I assumed that the bcp's would stop me from having aunt flo, maybe I'm just naive. My fiancé does not know what to say to me or how to approach the subject of endometriosis, so it is difficult to talk about. 


Mandy
United States
October 2006


Hello, I have not officially been diagnosed with Endometriosis, nor do I want to be, but I have endured a lot of the frustrations I see mentioned here - such as being told I have IBS and to take fibre supplements.

At the age of 15 or so, I began having what I came to refer to as "ovulation pain". It always occurred during ovulation, sometimes lasting a few hours up to a couple of days. In recent years, I have found that Advil will take the it away, but I'm not crazy about taking ANY medication unless I desperately need it.

From the age of 17, for over a year, I had unprotected sex with my boyfriend at the time (shame on me) but never became pregnant. Looking back, I wonder if that wasn't a sign. Now, after 4-1/2 years of marriage without using any form of birth control 99.9% of the time, I still have not conceived (didn't marry the old boyfriend, so I know it's not the men who have fertility issues). We are not actively trying to conceive, but we often seem to coincidentally have sex during fertile days, and yet nothing.

I have average periods, but usually a lot of cramping and clotting. For the past 3-4 months, however, I begin bleeding after ovulation - my period will stop, a week or so will go by, then I ovulate, then bleed again for 5 or 6 days. Exercise and sex also bring on bouts of cramps and bleeding. And for the past week or so, when I urinate, I have sharp pains when I am finishing, perhaps when the muscles are contracting?? There is no burning, blood in the urine, foul odour, or increased frequency, so I don't think it's a bladder infection.

I have always had a gut feeling that I could have Endometriosis, and I have yet another appointment with my gyno on Monday. I've had a vaginal ultrasound which revealed ovarian cysts, but the doctor said they were common and not of concern. 


Jennifer Schaffer
United States
October 2006


I was diagnosed with endometriosis when I was 20? I think I was 20, and had a dnc, which was no fun experience, but I had a significant amount of relief from my cramps afterwards, so I was very happy that I went through it. I'm now 30 and have not had insurance for a while now (I now recently do) and I'm having severe pain again.

My biggest problem is getting a doctor to listen and understand and take this seriously. When I was young and finally diagnosed it took me actually passing out on the bathroom floor to get the doctor to take me seriously. I do not want it to go that far again.  


Mandy Ng
Hong Kong
October 2006


I am a Chinese woman aged 34, this is the third week after my second surgery (with three keyholes). I started to find out the chocolate cyst in my right ovary in 2003 and unfortunately it returned in 2006, just three years after the first surgery. As it is the second time, I become more aware of the diet and lifestyle that I need to change. Actually I am the sort of nervous and stressful woman who always worries about small stuffs. So now I am searching through different websites and see how I can fight against this disease.

But the journey for dealing and healing with this should not be easy as I am a busy teacher in Hong Kong. The modern and polluted city where I find it hard to maintain a healthy and balanced diet. And it is a huge challenge for me to eat less (high fibre and less fat). Anyway I know I need to start to deal with this, otherwise it might return again! Hope those who suffer from endometriosis can have confidence and patience to face with all the changes and challenges. Mandy Ng 


Leslie
United States
October 2006


I have had endometriosis since I was age 15. I knew something was wrong at the time, I had my first period. I would bleed so heavy and would produce huge blood clots. The doctor put me on birth control and I have been on birth control for many years to control my pain symptoms. No one ever really explained the seriousness of my problem to me in the 80's, which is a pity for me.

In 2003, I had ovarian cyst and a D& C to remove adhesions when I was living in Germany. I was hospitalized for 2 weeks, but at the time... My fiancé at that time had bought us a vacation to the Canary Islands. He pressured me to leave the hospital early as he could not get a refund on vacation. So, I endured the pain and went on this vacation to the canaries. The doctors begged me to stay in the hospital, as I was very ill. But, I loved my boyfriend a little bit more than I loved myself. Which was a mistake.

The German doctors pressured me to get pregnant to cure endometriosis, which is not a good cure, since I am having pain with sex to begin with. After, we broke up in 2004, which was because he complained about lack of sex all the time. I have suffered aches with sex my entire life.

That same year, I was diagnosed with another ovarian cyst on the same right ovary of course. I took some birth control to manage the cyst and tried to forget about it. I didn't want to always be whining about my issues. I started having some spinal symptoms in 2005 and 2006 and during the MRI, the x-ray specialist noticed I had fibroids in my pelvis.

Now, On October 7th I went to a OB/GYN appointment as I am having new issues. This time I was told my condition is chronic and I need a hysterectomy. The doctor thinks I have a mass in my pelvis, severe adhesions, ovarian cyst, fibroids, prolapsed uterus.

He said I had only 3 options which is depo-provera, menopause causing hormones or hysterectomy. He said I need the hysterectomy as my symptoms would only get more crippling. Currently, I have 2 forms of anaemia and a crazy spastic colon which causes problems, heart palpitations during my period, nausea, weight loss as my period makes me sick in general.

I used to enjoy fun with my girlfriends and guy friends, now everything seems so distant. My options fade every day as the pain is all I know. I am sad as I am giving up my chance at motherhood, which is the only thing I wanted my entire life.

The rewards of hysterectomy could be greater than motherhood, as it can give me my life back. I feel sometimes sad, as my menstrual cycle is something that lasts only 3 days in normal people, seems to last me 10 and 14 days and rob my body of energy. Until I get a scheduled date for my operation I will have to go through another monthly cycle which I dread.. 


Julie
United States
October 2006


Ever since I was 12 I have had horrific cramps that would make me miss school and basically cripple me for a day or two at a time. My mom always thought I was exaggerating and we never went to see a doctor. I am now 23 and last year I had my first Laparscopic surgery to remove what the doctors thought was a dermoid. I was in unbearable pain before the surgery, it hurt to walk, it hurt to move, it hurt to do anything! The pain was only on my left side.

After coming out of surgery the doctor told me that he had removed a hemorratic cyst as well as a massive amount of scar tissue from my pelvic wall, keep in mind this is my first surgery ever, so there is no explanation for the scarring. He also stated that both my left ovary and fallopian tube were "stuck" to my pelvic wall. So he freed them up, took out my cyst and sent me home on continuous birth control saying that it would suppress my ovaries and I wouldn’t have any more cysts.

Lo and behold I was back the next month and the month after that, and the next month, with pain in my left ovary. Finally my doctor tried to put me on lupron, but after reading many "Lupron" related websites, I decided that the long term side effects weren’t worth it and very very scary. So they kept doing ultra-sounds on me and the only information I was getting is... Yep you have another hemorratic cyst in your left ovary.

The largest one I've had so far was a little over 3cm. The doctors tell me that until they get to 4cm, isn't something to worry about. So, I continue to be in agony every month, having my period is fine but when its over the pain starts. So I went to see a second doctor. With him reading the notes from my surgery he looked at me and said... 'well this all sounds like endometriosis, didn’t he (the surgery doctor) do a biopsy?' I looked at him puzzled and replied No.

So here I am almost a year later after my surgery thinking about removing my left ovary so I can start to have a normal life with my boyfriend. Something new that I have been reading about, that I have found more information on this page is diet. Removing wheat totally. I'm not sure if this will work yet, but it is my last hope before surgery. 


Michelle Ross
United States
November 2006


I was 19 years old when I went into the hospital with major abdominal pain. It took the doctors 3 days to finally figure out what was going on. All that they knew was that I had a massive mass. It turned out that I had endometriosis, the biggest case that the hospital had ever seen. They did surgery and told me that my ovary was the size of a big grapefruit and that it had turned over 3 times and was completely dead.

The doctors told me that it had been growing for 4 years, until I was in so much pain that I couldn't even walk. It has been 3 years and so far so good. Luckily it hasn't come back yet. I know that it is happening to many younger girls. It was a very scary situation for me, but everything turned out ok. To all of you, just remember that we know what you are or had gone through. Stay strong and help raise awareness in others. 


Genn
Canada
November 2006


I am only 22. I am a recovered drug addict. I was a single mom till 3 years when I met my love of my life. I have a successful career and a wonderful family. Sounds perfect? I am constantly in pain, I am embarrassed about what is wrong with me and the constant label of being 'the sick girl' at work. I am depressed and confused and feel helpless. And little did I know that this, which has been going on for at least 3 years now, has been caused by endometriosis.

After my son's first birthday, my periods became extremely painful; I had long lasting tingling headaches and couldn’t stop bleeding. I figured this was all the effects of pregnancy and breastfeeding, so I didn’t look too hard into it. Then I became pregnant in 2004, lost my daughter at 5 months foetal age. This is when I became extremely depressed and anxiety started taking on. I assumed this was mostly due to her death and the fact that I was recovering still from a long term addiction to street drugs.

Still I didn’t search. This past summer however, I noticed I was having painful diarrhoea for weeks. I found a good family physician who pushed for many gastro diagnosis tests. Yet, everything came back normal. I was getting ultrasounds and blood work done every month and finally after 5 months, they found something. With my physician being suspicious of what looked like a giant varicose vein on my ovary and uterus, she sent me to a OBGYN specialist.

Meanwhile, I have used up all my sickdays, my performance at work was being effected, and even my son was starting to pick up on 'the mummy syndrome' "mummy, I will give you magic touch to make you feel better, mummy, don’t feel sick anymore'. I was soo excited to see this specialist, thinking ok, they'll fix it and I can go back to living a great life that I've made for myself.

This doctor was outrageous. His first treatment, which he really pushed, was a full hysterectomy on a 22 year old. I still want kids so I've refused that. However he did explain that my depression, my anxiety, my pains and what other doctors had originally diagnosed as IBS was all part of this. Finally something made sense yet he wasn’t providing any treatment options to treat the now disabling symptoms.

I've gone to family doctor again and she is referring me to another specialist for a second opinion, and will be doing a follow up with me to talk about taking a sick leave. I am 22, unhappy, unimpressed, and feel my life is getting out of my control, Mine and my husband’s relationship is suffering because sex is so painful, and I am no longer myself. Mine and my son's life is less active, I no longer have all the energy to play, I feel I am on the verge of losing my job, and now have fellow employees confronting me about my health.

How long will it take to get a good solution, is there one? I sympathize for all the women who have been experiencing this for so much longer and who have more serious cases. I couldn’t imagine what life is like for them. 



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