Listen to your body

by Maria


I haven't been diagnosed with endometriosis but after reading almost every single article, story and wiki pages about this I am convinced I have endometriosis. I am very relieved to have found this site and read other women's stories since I don't know anyone else who has this.

Before I started taking birth control (around 16-17 years of age) I remember having severe cramps during menstruation. I couldn't go jogging (that resulted in painful stabbing sensation in my uterus and pain in my hip). Once taking birth control pills all symptoms went away. Got clear skin, almost no pain at all during menstruation and no hip pain. (Yasmin BC)

Now I am 25 years old, I stopped taking BC last year and during this 1 whole year everything changed.

Menstruation and ovulation is extremely painful.
A deep burning/stabbing/stitch pain after intercourse. Menstrual kind of pain but 100x worse. It's so bad I don't know what to do as every single movement makes the pain even worse.

All I can do is cry and try to breath and try not to throw up. This pain can last up to 12 hours - 3 days. Gradually gets better each day but I have to walk slowly and try not to move so much. Laughing, coughing, sneezing, urinating hurts so much.

I am always tired and experiencing nausea during every menstruation, the past 2 months I have even been throwing up a little. I can't jog, that makes my whole uterus hurt and will continue to hurt a few hours and also make me feel nauseous.

I saw 2 different gynecologists last year. The first one said "it's probably just gas, don't think about it too much". I then told her "I can't even go jogging, not on any single day during my cycle" she then said "Okey, let's have you do an ultrasound for your peace of mind"... I got furious. I felt like she didn't take me seriously.

So I went to see another gyno. She ran some blood tests and said everything was fine and wanted to give me birth control pills. Yes, BC might relieve the symptoms but I want to know why I can't live a normal life without BC.?!

I recently found out my mother had one of her ovaries removed when she was my age but she doesn't remember exactly what it was. Apparently some kind of cyst on her ovary.

Other than above symptoms I also suffer from headaches, bloated before/during/after ovulation, constipation. I can feel a certain stabbing sensation in my pelvic / rectal area when I jump and hit the ground, or in the car driving and hitting a bump on the road. I am also very sensitive to cold.

While everyone else walk around in t-shirt I have to wear socks, jeans and jacket but sometimes that doesn't even help. My lips will turn purple and I need an extra blanket to warm myself. Past 2-3 month I've been feeling dizzy from time to time. Especially when I jump in the shower in the evening everything all of a sudden spins around and i feel like I'm about to faint.

It saddens me that doctors don't take you seriously. I even mentioned endometriosis to the doctors I had seen and they did not believe I had it.

I'm trying to get laparoscopy surgery, I'm pretty sure that will give me the answers to all the pain I am experiencing.

I am not going to listen to the doctors and what they have told me, I KNOW and I can feel something is wrong. There is NO WAY this kind of pain is "normal". Listen to your body, only you know your body best.

Thanks everyone for sharing your experience with this disease. I'm glad I am not alone.

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by: Debbie

I have finally had a laparoscopy after years of misdiagnosis. I could see on the screen all the lesions which looked like spiderweb, the pain was that bad as he tried to enter my womb with the camera that he had to stop. I said that's that pain I've been trying to describe for years.

The pain was/is in my left lower side of my pelvic. That appointment was a week ago and I am still awaiting a letter for treatment under general anaesthetic. My pain has intensified and spread to my lower back chest and the worst pain is still in my womb and stomach area.

Hi Erica
by: Maria

Erica, thank you for your comment and I'm glad to hear you're doing better. If only doctors would listen it wouldn't go that far to where cysts finally rapture and be left with excruciating pain :( the awareness of endometriosis needs to be raised all over the world.

by: Erica C

I was in a similar boat as you. I as 13-14 and my periods started to get really bad, I would get nausea and stop eating for almost an entire week, some times longer. My entire right side would burn like I had touched a hot pan and the cramps were insane. I found little relief with hot pads and medications.

December of 2008 I was told to get to the ER because the pain had gotten so bad and the Dr. pressed where the appendix would be and I jumped.

Turns out I had ruptured 2 cysts. Was given meds and sent home. Shortly after I was put on birth control and it was changed several times since, to where I wouldn't get my period at all (false pregnancy).

I have been to several different doctors (md and at least 3 ob-gyns) and they kept telling me that there was nothing there, they kept sending me for ultrasounds/mri's ect but nothing was showing up.

Finally the last doctor I saw made the suggestion of diagnostic laparoscopy surgery. I finally agreed and had it done over my spring break. They found lessons and adhesions and that all my organs were inflamed which is what could have been causing the burning sensation.

At least I know it wasn't in my head and finally gave me answers to what was causing the pain. I still have to take BC to keep everything in check but for now but my pain has almost diminished. I still get twinges here and there but on where near what i was getting.

The recovery from it wasn't all that bad, I had quite a bit of bruising, and some tenseness but not anywhere near the pain scale I was expecting.

Hi Kara muller
by: Maria

Thank you for your comment. No unfortunately I haven't. I'm planning to move back to Sweden and seek help there since they have more specialized doctors and centers there.. Hopefully I'll get help there.

I really had no choice but starting with birth control pills again, so far it's alright but still feel the pain from time to time and not really helping like it used to.

Hope you'll find another doctor as well. Good luck and keep fighting for a laparoscopy.

Feel Your Pain
by: Kara Muller

I'm really glad I came across your story. I've been dealing with intense ovulation pain and menstrual pain ever since I went off the pill. All my symptoms point to endometriosis. I've seen three doctors now and they all tell me that my pain is normal. None of them want to do laparoscopy.

I feel like I can't even fully describe all my symptoms because they shut me down and proceed to lecture me on the benefits of the pill and say it's my only option. Each month the pain gets worse and more and more I feel a sensation in my lower left side even after my period has ended.

I used to have a break in the pains from when my period ended to when I would ovulate next.. I feel so defeated and helpless. I hope you've been able to find a doctor who actually listens and helps you.

Thank you
by: Maria

Thank you for your comment. Will definitely keep trying.

by: Anonymous

After reading your post and from everything your experiencing it definitely sounds like Endometriosis. Doctors will lead you to believe it's all in your head. Don't give up trying to figure out what's wrong. Research Gynaecologist that specialize in Endometriosis and demand a laparoscopy. Endometriosis will not show up on a ultrasound or in your blood.

I have been living with Endometriosis for 27 years and have had four surgeries. I don't have any thing left inside, ovaries, uterus, and Fallopian tubes. Plus a bowel resection. Now there is still ovarian remnants inside and now I have two cysts.

Due to all the surgeries and endometriosis I live with chronic pain every day if my life. Don't let doctors make you believe it's in your head. That's what happened to me and when they performed surgeries they were shocked by the mess inside. Stage 4 endometriosis I was told after a five hour surgery.
Don't give up!!!!

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