Endometriosis story

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

Endometriosis returned after child-birth

by Anne

Diagnosed with stage 4 endometriosis ....

I started suffering at the age of 19 with very heavy periods, within 6 months I was being took home from work every month by my boyfriend at the time, regular timing as clockwork.

Got progressively worse, was fobbed of by g.p. saying its period pains, given feminax and paracetamol. It was like taking a couple of smarties, introduced hot water bottles for comfort at this time as well.

My mum gave me stronger tablets as GP still said in my head. My mum and aunty also suffered and they could see what was wrong. Got my 1st laparoscopy at age 22 due to me being so anxious, they were convinced they would not see anything.

Confirmed stage 4 endometriosis, they didn't say what that meant so i did my own research and it opened my eyes up to what i had been dealing with and not realising.

Mine had spread up to my belly button. Now at the age of 34 I have had to have 4 laparoscopies to remove cysts up to 4 inches in diameter. Have to have lots of ivf due to being infertile to have children.

I am blessed with a gorgeous 20 month old son. When my son was just 2 months old i got my 1st infection again after birth. Sympton come back one by one. Went in april of this year for mri so they could see what was happening before going under the knife again and indeed it has come back, stage 4 again.

They are giving me till november then having my 5th laparoscopy, we can then try for baby number 2 for six months, and in july next year they want me to have hrt until im 50 or a hysterectomy.

I am opting for the latter, at least i will be able to finally get on with my life normally, be able to go swimming and do other things with my son without waking up and finding out i have come on again.

If anybody wants a chat my email is annehunter1378@hotmail.com. Good luck all you ladies out there suffering in silence. My advice would be don't ever give up. You know your body better than anybody else. anne xx

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Tired all the time with sharp pains in pelvic area

by Tiffany
(United states)

I'm 28 years old. I was diagnosed with endometriosis in 2011 after many painful periods, so bad that my blood pressure would drop and I would end up in the ER.

I was on birth control for about 10 years and a few years ago I came off of it to try to get pregnant. After coming of the birth control I started having very irregular periods and severe pain symptoms.

I kept telling my doctor and he said we should just chalk it up to a bad period. I finally got tired of hearing it when I was in so much pain. I found another doctor who decided to do exploratory surgery.

I has the surgery in May of 2011. My doctor told me he found spots of endometriosis on the front of my uterus and that he cauterized the area. After the surgery I was fine for about 4 months, I had a regular 30-33 day cycle with some cramping but not severe.

After the 4 months I began experiencing the severe symptoms and agony at other times of the month, my cycles got longer some months and then were normal other months.

I'm constantly tired, nauseous, at times I have pain down my legs and in my tailbone, as well as in my pelvic area. At times I also have symptoms when urinating & with bowel movements.

At this point I have been trying to get pregnant for a few years with no luck. I feel like I never have enough energy and its causing my to miss out on things cause I'm so tired all the time.

It's hard for people around me to understand what it is like on a daily basis. I always feel anxious not knowing when I will get my period and how bad the symptoms will be from period to period.

I'm glad I am able to share my story and to read stories of other women who suffer from the same thing on a daily basis, I know I'm not alone.

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Diagnosed fibroids not endometriosis - I wonder!

by Faithful One
(New York)

I am over 50 years old, a woman who has never been pregnant now going through menopause. I have always had super heavy periods and clots. Had some things earlier in teen years I chalked up as growing pains. I once had chocolate cyst. I have had over the past few years once in a blue moon severe pain when urinating like someone took a butcher knife and stabbed me straight through.

I suffer with bloating, sometimes I can look 6 months pregnant, it would get bad. I've had the feeling of not wanting anything to touch my stomach for the slightest wind was irritating and painful. I also suffer with insomnia so I figured that's why I'm tired all the time!

I just woke up 2 days ago with major lower back pain and lower abdomen pain which is in surrounding pelvic area. I am not clear where it is stemming from. Today I could barely walk, and if I breathed in wrong the shooting pain in my abdomen and back! Whoa!

I turned to see if car was coming and that nearly crippled me the pain was horrid. I felt like a barbie doll that you could twist the body and bottom half (but with legs) separates from top torso. I feel like there's a twisting and the pain is excruciating.

I pulled up lower back pain and decided to check out Endometriosis because it was listed and I have an older sister that has it. Thinking maybe my fibroid's is not the proper diagnosis.

I will be making an appointment but felt like I was going crazy thinking only me, but after reading your stories you have helped me to see I need to further investigate and get the right diagnosis so I can get the right treatment!

Thanks for sharing and my Prayers are with you all.

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Symptoms every day

by catherine

I found out I had severe endometriosis at a very young age. I have the disease on all of my organs. I have had 4 different surgeries. All of my organs were glued together, and I have had several tumours, cyst, and a ruptured ovary.

I am now 28 years old and I am infertile and I wake up every morning with pain in my back, lower
abdomen, and my legs and arms. I have very painful periods and keep a notebook with all of my symptoms that I feel daily.

I don't have health insurance so getting help
to deal with endometriosis as been hard.


Name: Terese

Title: Medication for pain

Hi Catherine, Sorry to hear that you have this terrible disease too. I also have Endometriosis
stage IV and all of my organs were stuck together and I have had 3 operations for it.

I was given all the medications to stop it from growing but none worked. In the end, after my last operation I was put on the contraceptive pill which I take 4 months non stop. Then I have a period then go back on the pill again for another 4 months.

The pill is called yasmin in this country but it might come under a different name in your country, but it is a pill that the doctors use for endometriosis and for pre-menstrual symptoms. Its the best medication that I have been given, not having any periods for 4 months at a time is brilliant.

In England where I live we luckily do not have to pay health insurance yet! and the pill is free.
It must be terrible to be in pain and have to pay for health insurance to be able to get help.

Anyway if it is possible to get the contraceptive pill then its worth a try. I do still have some symptoms but nothing like they were when i wasn't on the pill. Hope this helps, take care.

Name: Hannah

Title: I know how endometriosis makes you feel

I was diagnosed at 17 with endometriosis. At first we started out with the birth control. I was on yaz and then seasonique. It helped for about a year and then I started Depo. The first 3 months were somewhat okay, and then the next shot I received, I had constant bleeding and pain.

The doctor said it was because my endo was so severe it was "eating through" the progesterone.
SO, now I am on Lupron. I have injections once a month. It brings relief to the pain, BUT I am experiencing the same effects as menopause. Which, my mother finds some relief and humour out of it because she is also going through menopause at this time to! haha.

I'm not quiet sure that i like it though because I'm also experiencing depression, severe mood swings, nausea, hot flashes, and very bad night sweats. I'm considering getting off the shot and trying to have a baby.

I'm now 21, and engaged.. and seeking some sort of relief :( .. hope you are feeling somewhat
better though! I know how much it sucks dealing with it and its hard to find a doctor that

will actually work with you!

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