Endometriosis story

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

Living hell every two weeks

by Kristy

I have always had a problem with my periods. I didn't start them until I was 16 and then every time has been like a miscarriage for the first few days. I am now 23 and have never had a normal life since.

I have been on many different contraceptive pills as doctors think this will sort itself out. I have also been told it will sort itself out "when I have babies" but at 23 I have no plans to start a family and cannot imagine looking after a newborn on my own with this pain.

Also during the start of my two weeks I tend to get chronic diarrhoea followed by constipation later on which causes additional pain upon the cramps. It is just now that I have found that this is connected with endometriosis.

I know I have endometriosis, and have had so for years. My mother had it and had to get her lesions burned off twice and has always had the same symptoms as myself.

I cannot go on like this anymore. It is ruining my relationship and my work life, and quite frankly it is embarrassing to have to explain to someone why I have to have at least a week off every month or run back and forth to the toilet all day long in work.

I am the only female in the office and it is often a running joke between my colleagues who are also my good friends.

I would like advice on how to get my doctors to react. I have been sent for scans on my ovaries which revealed nothing.

Put on Iron and Transexamic acid which made my Diarrhoea problems worsen and refused a smear at my doctors as I am under 25. I have changed doctors 3 times and have had the same reaction each time: Deal With It!

At 23 I would just like to know if I can have a family or whether I should start trying now and postpone my career.

Can anyone offer any solutions or advice. I will try anything at this point.


Name: Erin K

Title: WOW this is Eerily familiar!

Your post caught my eye b/c of all of the similarities we have (minus the diarrhea), you're lucky you still have a job b/c I have lost MANY jobs b/c of being out of work for at least a week every month b/c of the cramping to the huge blood clots hindering me from getting out of bed. Also, our ages seem to be only a few yrs different as I'm 30 (June 1982) & from your post you're 23y/o.

I'm wondering if you ever dealt with any other painful symptoms: Feeling like your insides are being scraped/torn out during your period?? I think it's the stool pushing on the Endometriosis adhesions from within & that's why it hurts so bad). This is by far the worse symptom I have experienced!

I'm wondering if you ever found an OBGYN to help you? I started going to my OBGYN at 15y/o b/c of how bad periods were (it was keeping me out of school 1wk/month) & she, OF COURSE, put me on birth control. That seems to be her fix all (I've had to beg her for 5mg percocet!) Even though every month is the same.

None of the birth controls help & I, like you, am fed up with being put on one birth control after another, instead of them finding out what's wrong. I was told that 2yrs ago & just recently 6 months ago, I was diagnosed with endometriosis where symptoms are concerned, but both ovaries are covered in cysts & my uterus is full of fibroids. 6 months ago she put me on ANOTHER birth control & told me that in 1 month she'd schedule a laparoscopy & get to the bottom of my symptoms.

Just this week (Sept.2012) I went into her office unannounced because I'm fed up. She gave me,yet AGAIN, ANOTHER birth control (Nuva Ring)& an RX for 5mg percocet, but only after I broke down crying because the pain is so bad (when I went to the ER in Feb.2012 they had to give me morphine for it!)

I am really interested to find out how things are going with you, what they found & what's been done.

I have a feeling that I'm Stage 4 because my DR's have ignored me & my symptoms & just kept handing me birth control after birth control as a way of treating my problems for the last 16yrs, which allowed the Endometriosis to get worse. Instead of them treating the core problem Endometriosis ... I was given birth control.

I got my period last night & I want to go to the ER. I'm 30y/o & may not even be able to have children. I've lost multiple jobs because of not being able to get out of bed! I know what you're going thru. So if you could give me an update I'd appreciate it.

I hope you have found relief or find it soon from this hell!

Name: Fellow sufferer

Title: Thank you for sharing your endometriosis stories!

I am so glad I discovered this website. I have searched for so long to find one that is informative and gives more than just the word for word common symptoms I usually find. Your story and symptoms sound exactly like mine. There are so many times that I almost went to the ER with severe menstrual cramps with endometriosis and bladder pain with interstitial cystitis.

I didn't go because all the doctors I have seen for these conditions seem to have the attitude that strong pain medication is unnecessary, and make you feel like they think you're a drug addict seeking a fix.

People have no idea what the agony and discomfort is like, and have no patience when it comes to having to miss social and work functions because you are in bed in a ball in excruciating agony.

I've tried every treatment including laparoscopy surgery, hormones, etc. The birth control pills made me immobile with pain and severe bleeding for 30 days straight. I am having new symptoms in my skin, shoulder, and getting severe menstrual cramps just a week after my period.

No one understands just how bad it is. Excruciating pain during intercourse is another self-esteem and relationship crusher. Severe fatigue and discomfort along with urinating every 20 minutes, has made working impossible, which makes you feel even more worthless.

If people were more understanding, it would help. Hopefully more education for the public on this disease will happen. Hearing the suffering stories of others, while sad, does make me feel less alone and less crazy! Sincerely, Fellow sufferer

Name: Elizabeth

Title: Interesting page about your endometriosis symptoms

Hi Folks, I'm 55 years old, suffered with the symptoms of endometriosis for the past 40 years. Many visits to doctors, same thing, birth control pills, scrapes, miscarriages, cysts, fibroids, bowel problems, heavy bleeding.

Eventually at 52 years old had the merina coil fitted for the past three years it has been a god send, no bleeding and all the other symptoms had subsided until now.

Very tender all around belly button area and especially middle of my stomach area, back pain and side pain. I am waiting for an ultra sound test in two weeks time.

I honestly thought I sounded like a hypochondriac over the years. I also have under active thyroid. It was only today I looked on here when the doctor thought it was endometriosis. I have never had children which I deeply regret because it never happened and when I investigated IVF I was on the wrong side of 40.

I am delighted to have found this site, I don't really have much to input, but have found a site that relates to my symptoms so much. Thanks to all for your useful comments on here. By the way, I had the merena coil as a last resort before a hysterectomy, and it has given me three years, more or less, with no bother which I have been so thankful for.

Once again thanks folks. Liz

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