Endometriosis story

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

Symptoms worse with stress and certain foods

by Teresa
(Medway, Kent England)

I have noticed a link between my symptoms and what I eat.

I have had endometriosis since I was 12 years old which was when my periods started, I didn't know I had endometriosis until I was diagnosed which was when I was 34 years old, but I was always off school and in pain and being sick.

When I reached sixteen my doctor would put me on different pills for treatment but none of them worked at this time.

I also started to get bad cold sores and don't know if there is any link to cold sores and endometriosis but they were so bad and big that I was off of school because of them too. Any way I was put on medication to stop them from appearing, which worked.

When I got to my twenties my periods were worse. One month my period would start after 14 days when I would finish it would start again after 11 days, so that's how my periods were. I don't know if this is something to do with the ovaries. Anyway I was still in absolute agony and being sick so I was never at work and the pill was just making the problem worse.

When I got to my late 20's I would bleed so heavy it would come through my clothes. Still the doctor didn't have any answers so I had to put up with it. When I got to my thirties I was experiencing pain very low down in my pubic area and genitals, inside of my thigh, buttock, hip, lower back. I also started to have severe dizziness which got to the point where I couldn't stand up in the end. It was so bad I had to give up work, when I was 34 years old.

Anyway I was lying down a lot during this time because any time I stood up I was so dizzy things started to look crooked to me, and I couldn't bear any noises, especially like someone putting a cup on a table. It was mad and I had pain in the left side of my head and ear and eye. From then on the whole of my left side, from head down the my foot was painful, and my skin was really red and I was getting a lot of heat in my body and my face was red and hot most of the time.

I was told I had an inner ear imbalance,(if anyone reading this has had any of this please let me know) Anyway after about 8 months I started to move around again but felt really stiff all over so I started to do exercises and yoga at home. The next day I was getting a lot of aching in my genital area and it was like a pulling, tugging pain. The day after that I couldn't put my left foot on the floor.

I could not walk I had so much pain in my groin, thigh, buttock and around my back and hip. The pain was really hot, stabbing, pricking, tugging, and my skin around these areas were constantly red, so in the end my doctor sent me to an orthopaedic doctor who could only find a small bulge between my disc in my back, but said it wouldn't cause these symptoms.

In the end I decided to go private to a gynaecologist as my doctor wasn't doing anything and said basically the pain was in my head. So I saw a gynae and she said that I had a small cyst on my left ovary and some small fibroids. She was going to discharge me but lucky for me I had blood and pus keep appearing in my urine tests, so she sent me to a urologist who did another scan.

The urologist said the cyst was now medium size but as I had so much pain he put me in for an MRI scan which I had a couple of weeks later. The scan showed that the cyst was large, so he sent me back the the gynaecologist this time free of charge.

I think I spent nearly a grand on these tests so the gynaecologist said I would need go into hospital to have the cyst removed. She thought it was a dermoid cyst and my bladder was ok. I went to have the cyst removed and when I woke up the surgeon and consultant said it wasn't a dermoid cyst but it was a chocolate cyst and that I had endometriosis on my womb, ovaries, fallopian tubes, bowel, bladder, appendix and pouch of douglas, and ligaments and everything was just stuck to each other. The consultant said she had never seen anything like it, and it was so bad it had reached stage IV and over.

She said she couldn't take any of it away as she said it was so thick she couldn't get in there. So she put me on zoladex and HRT for 13 months which put me through a mini menopause. After 13 months she then took the endometriosis away. She told me that she had taken it all away and if I still get pain she would send me to a proper endometrial surgeon as I had a uterine nodule on my left side of my womb. This had grown into the muscle and the lining of the uterus.

I still had pain so she sent me to Chertsey hospital where the surgeon there told me he couldn't take the nodule away as he would have to take my womb away. But he said he needed to take the rest of the endometriosis away as it has grown in the ligaments and flesh and the bowel. So my last gynaecologist had lied to me and said she had taken it all away and discharged me!

Anyway he removed the rest of the endometriosis and the pain was better for a while, but he sent me to the pain clinic afterwards nearer to where I live.

I am 43 now and the symptoms are still there. They never went away completely, but now the symptoms are back and the pain clinic have been injecting into my back over the last 4 years. But now they want me to go back to the gynaecologist at the same hospital as the pain clinic. So this time I will be seeing a different surgeon. He is actually the surgeon who removed my sisters womb as she had endometriosis as well as my cousins.

My symptoms now are the same but also in my oesophagus and chest, along with upper stomach acid pain which comes with my monthly's, severe hotness still and red face, leg ache, buttock and pelvic pain. I have begged the doctors to remove my womb in the past but they wouldn't as I hadn't had children. But as I told them, I have to have sexual relations to have children and that's not possible. It is so painful I have given.

Anyway I still haven't had children and at 43 years of age surely now they will take it away, but I will have to wait and see. The excuse this time will probably be 'well its nearly time for you to go through your change'. If anyone knows what my rights are regarding me wanting my womb removed can you please share. For example, I had a bunion on my foot which was causing pain so they removed it, yet the womb can rule and ruin your life but they wont remove it.

I haven't worked for 5 years and I was claiming job-seekers allowance (UK unemployment benefit) for 2 years. I took myself off the sickness benefit as I had had enough, but still couldn't get a job, because when you have been sick for so long then potential employers don't want to know.

I am now back on sickness benefit with pain in pelvis and gullet, upper stomach, shoulder and buttock all on left side again all due to endometriosis.

If anyone has had any similar symptoms please get in touch. Thanks for reading this and sorry it was so long but that has been my life and still is. I can't wait until I am sixty and then perhaps all the problems will go, but I am just wishing my life away. Teresa


Name: Anonymous

Title: Pain in the eye

I also get period pain in my eye, you're not mad, nor alone!! My issues started ten years ago, and thankfully my doctor anticipated what the problem was and told me I'd potentially have child conception problems.

I was engaged, and told my man to hurry up. We've been able to have two kids since. My symptoms have worsened considerably, and currently having hormone manipulation. One progesterone and HRT.

Having horrible side effects, having to remove my wedding ring due to swelling etc.. Without the pills, I have pain all month round, up the right side of my body, shoulder, neck, eye, I suspect due to it being on a nerve. Pain and blood loss intolerable, literally pints lost every month. My haemoglobin is low, anaemia and colds last months.

Name: Anonymous

Title: Thank GOD! I'm not crazy!

I have almost all the endometriosis symptoms you guys are experiencing and all my gynaecologist says is birth control will fix it, and now that you were pregnant 3 times that will fix it too! NOT!!!!!!

My pain is 10x worse than ever with new symptoms. I get over heated and sweat, muscle tenderness and stiffness, severe cramping in my pelvic area, lower back and right side with my tail bone aching really bad as if I had a bladder infection or kidney infection. I have been tested for kidney infection which I don't have.

I also get nausea and bloating to where I look 3 months pregnant, and a weird feeling when I'm at the end of urination - hip and groin pain.

I also suffer headaches, severe cold sores, a low grade fever, dizziness to where I feel like I'm spinning, which turns into me feeling like I'm going faint.

My other endometriosis symptoms involve a combination of constipation or diarrhoea. I now have yellow 'snot looking' discharge which the doctors thought I had an std. I have only been with my husband who is faithful. I have been tested over and over again and all were negative so it is not an std!

I have had problems since I was 12 yrs old and no one will help! I am a stay at home mom but I need to look for a job, but I have a hard time getting out of bed just to tend to my children much less likely a job!

Thanks for sharing your endometriosis symptoms. Now I know my doctor is the crazy one and not me!

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