Endometriosis story

  These stories can help other women so they do not feel so alone when trying to cope with effects of this disease.

Answers to my pain symptoms

by Jess

Suffering extremely painful periods, with a long time to get diagnosed with endometriosis ....

Ever since I got my first period at age 13 I have suffered excruciating symptoms. I would always know when my period was due because for a week leading up to it I would suffer strong pelvic cramps and have bowel pain and discomfort.

I would get extremely bloated and then when I get my period I would spend the first couple of days vomiting and curled up in a ball crying and screaming in agony. My period would always last for at least 7 days and was extremely heavy.

I thought that I must have had a really low pain threshold as none of my friends seemed to experience this kind of problem. My parents saw how traumatic this was for me and sent me to the doctors many times. The doctors always put me on "the pill"; there were many different kinds that they tried and none of them ever seemed to work. In fact some of them made my period last for up to a month or caused me to experience other problems.

I would stock up on pain killers before every period and nicknamed these my period cocktail. I would take nurofen, panadol extra and naprogesic, yet my pain was still strong and often debilitating. This caused me to miss many days of school and to not want to partake in sports as I was unreliable.

As I got older it just got worse. Doctors had told me that it would probably get better with age, and I even had one doctor tell me that maybe I should think of having children as that would make it better.

At the age of 21 everything all just got too much for me and I fought a long battle of depression. I really felt like the symptoms must have all been in my head. I got through that time of my life and decided that I needed to focus on my health. I started running and doing yoga and Pilates, and I changed my diet to just vegetables, fruit, nuts, beans and spices. The pain did decrease a little bit but I still suffered at times.

My work was always impacted by my periods and I have been so fortunate to always have the most amazing and understanding bosses, because if I didn't I could have lost my job due to the problems they caused. One day I was late to work due to intense period cramps and vomiting. When I finally got to work I went to start but had to rush to the bathroom. It was awful, my bowels felt awful and I had diarrhoea, while at the same time I was vomiting.

I walked out into the the staff room and collapsed in pain to the point of almost being unconscious. I was shaking and screaming and nobody could do anything, so they called an ambulance and I was rushed to hospital. This was embarrassing for me, even though everyone was very supportive. However, unfortunately the hospital couldn't tell me what was wrong.

I was finally sent to see a gynaecologist and they did some tests and told me they would check for endometriosis. The gyno told me after testing for everything that they didn't think I had endometriosis and I must just have heavy periods.

Again I was given another pill that never worked. I gave up on finding answers because if the gyno couldn't find anything it must have really been all in my head.

I then moved countries and started a new job, however I continued to experience extreme agony during my period. My new friends and workmates constantly told me that I really needed to see someone about this suffered. I didn't really want to have to waste my time and money to go and see another doctor, to hear the same answers I had always heard but I didn't want to let my new job down, so thought that I should at least do it for them.

My new doctor was amazing, she sent me for tests for everything and sent me to the best gyno she knew. My gyno was also amazing and booked me in for a laparoscopy and also inserted an IUD as treatment.

Finally I received an answer... I have endometriosis and have had ever since I was a teenager. I am now 30 years old and have only just found out that I am not crazy, I do suffer immense pain and I'm not the only one.

The symptoms I suffer don't only last during my period, I also get pain and discomfort when I ovulate and after my period as well as the week leading up to my period. Sometimes I get what I call a pre-period, which is when I get my period for a couple of days then it goes away and a couple of days later I get the real thing, which usually lasts around 8 days and is extremely heavy the whole time. I fight my way through my periods, I try so hard not to let it rule my life. I try to ignore the pains and carry on but sometimes I just can't and the symptoms win the battle.

But now I have an answer; now I know why I have so many problems. So now I can try and control my problems with diet and by communicating everything to my new fantastic doctor and gynaecologist. I can't get rid of endometriosis but I can at least explain why I live the life I live.


Name: Anonymous

Title: You are so brave !

I have just read your post - and have the utmost admiration for you... Years of distress !!!!!! I found out I had endometriosis 2 years ago after an acute period of pain and infection, followed by 3 months of drug treatment (which didn't work). I was lucky - I had the best advice and after 4 months of HELL I had a total hysterectomy age 33yrs.

I would advise anyone who is suffering with all these horrible endometriosis symptoms to seriously consider surgery IF you have HAD your children. My life is now totally different - I am well (albeit I still have chronic IBS so follow a gluten free diet).

My thoughts are with you x
Good luck x

Name: Anonymous

Title: Endometriosis since I was 11 - after 16 years finally found out after nobody believed me

I too have been exactly where you have been, started at 11 years old, and the symptoms have always been horrific. I had 3 cysocopies and nothing showed up, a kidney cyst drained.

I even had a laparoscopy and every one who operated on me thought it was in my head, which in turn my family believed the doctors, and wouldn't believe that I had excruciation pain a week before my period. Also I suffer aches during sex and when I urinate.

The pain got so bad I'd pass out in shops and felt I couldn't go out on my own or leave my flat. My mum died nine months ago and I lost my job and home. Then the doctors would say its stress but I knew they were wrong.

I kept fighting (god knows how) as each month I really thought that as the pain was so bad I was going die. I changed doctors with moving and then tried the depo for treatment the first month. I thought wow this is the miracle I'd been waiting for.

But things got really bad - I was having periods all the time. So I went back and got referred to a gynaecologist. I walked in the room and almost burst into tears, saying please believe me I am not making this up. She referred me for another laparoscopy which was yesterday.

My greatest worry was them not being able to find it, and I sat there before my operation saying please find what's wrong with me. The surgeon came to see me and said it's very unlikely they will ever find what's wrong with me, and it's a 50/50 chance.

I came round from my operation to hear the words that made me burst into tears and that the surgeon had found several patches of endometriosis. I am so relieved, I was so happy.

So today I am recovering from my operation believing I've got to tell people this story to help other people in the same boat not to give up. Keep fighting and be strong. You know your own body better than anyone else. Xxxxxxx good luck girls

Name: Jess

Title: Thank you for reading and sharing

Thank you both for your kind and supporting words and for sharing your experiences. It's so good to be able to hear other peoples experiences and know that I am not alone in my journey. There are so many girls and women out there who have no idea why they suffer so much pain and I hope that by us sharing our experiences it can offer answers to some of those women. Having an answer to all this may not be the solution but it does help to figure out ways of creating a happy and healthy life.

May we keep spreading the word and highlight to the world that we are not crazy women who have low pain thresholds, we are indeed strong, determined women who did not give up until we found an answer.

Name: Anonymous

Title: I can TOTALLY relate to your experience

I am recovering from laparoscopic surgery. It has been about two months. I feel A LOT better. I am currently taking loestrin 24 and iron pills for my anaemia. I too was diagnosed with endometriosis and ovarian cysts. The doctor suggested that I need to get pregnant so that I can get my uterus taken out.

I rebuke that comment! He didn't mention anything about my diet and what foods to avoid until I read posts on this site. I know it is going to be hard to stick to this strict diet but I am at a point where I want to keep the amount of doctor visits to a minimum.

I have had several ultrasounds before finally I was diagnosed with ovarian cysts and that I would need surgery. You can imagine for someone who has led a healthy life I did not think this sort of thing would happen to me because no one in my family has experienced this.

So, it had been really hard to digest everything my doctors (as in more than one, so that I am sure before I went under the knife) told me. I am glad that I have had the chance to read everyone's blog and the information on this site is very helpful and encouraging.

Every now and then after eating certain foods (especially sweets of any kind), I can feel a little twinge every now and then. So, after reading the posts on this site I know for sure to keep my distance away from certain foods.
Thanks ladies!

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