Endometriosis and my story so far

by Victoria Goehring

I have been struggling with Endometriosis and it's symptoms for two years now. I'm 21 years old and I've always been a healthy eater, athletic and full of energy.

But ever since my endometriosis symptoms, my whole life has changed. I've always had a very high pain tolerance and never really complained about anything, but I've realized that listening to your body is the most important, even if doctors or anyone else tells you otherwise.

Two years ago, I started getting symptoms of constant severe bloating, extreme constipation, shooting pain from my pelvis down my right thigh, dull back aches, stabbing pain in my stomach and vagina all the time or with anything I eat, foggy thinking, memory loss, fatigue, weight gain, shortness of breath and the list goes on.

It's conflicted with college, work, my mental health, physical health, social life and totally changed my personality. I would tell my parents and friends, but they would tell me "oh its all in your head" or "oh you eat too much, oh you drink too much."

Or that I was just constipated even though taking laxatives did not relieve my bloating, sometimes the laxatives didn't even work. I went to so many different doctors and got put on anti-depressants, thyroid meds, different birth controls etc.

They did tons of blood tests and ultra sounds. Nothing seemed to work nor could they figure out what was wrong. The doctors would tell me I didn't have endometriosis and that "I'm just constipated" or "My body is just changing because I'm getting older" which is all BS.. because we know our bodies and how we feel is different from before.

With my family and friends thinking my pain was a joke, and my doctors... I was an emotional wreck. It took until just recently to find out I had endometriosis.

I went to an endometriosis specialist at Stanford University who has helped thousands of women with my same symptoms. He even said he has found endometriosis in girls as young as 8 years old.

Anyways I had my first laparoscopy a little over a month ago. I had stage III endometriosis, he took out my appendix, fixed my hernia, and removed ovarian cysts I had that "apparently" didn't show up on all the ultrasounds.

I am still feeling exhausted from the anaesthesia, still extremely bloated and have all and more of the same symptoms I had before my laparoscopy. Everything seems even more painful now.

I've been back for my post op, he said everything looked normal. Then last week I went back because of my pain and he prescribed me Loestrin Fe to even out my hormones and prevent more cysts from growing, and a moduretic to help with bloating and water retention.

It's been a week and I feel even more exhausted and have been in the same amount of pain. I had to drop the summer school class I was in because my body can't handle work, school and the gym.

I know I need to give it time, its just so frustrating and deceiving that I thought surgery would fix everything. Even though I feel alone dealing with this because I'm off at school and my family isn't here, I'm going to try my hardest to stay strong and have hope, not only for me, but all the other girls and women who are suffering too.

I wish their were more doctors who understood about endometriosis and hope to figure out the cure to this crazy disease. I also wish more people were aware of this disease and how much it affects our daily lives.

P.S. If anyone has any advice or experience with Lo Loestrin Fe or Moduretics I would love to hear about it.. Thanks :)

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by: Anonymous

I've been dealing with the same issue sense last year I just recently Finally was scheduled to see a GYN Ever sense my grandmother told me about what my symptoms sounded like which was endo, I've looked up tons of things on the disease I've read so many story's and my symptoms have been the same as every single story I read. My doctor has put me to the side so much sense last year of February I just really hope the gyn I see will figure something out. Best of luck to you.

Suffering with pelvic pain
by: Anonymous

I have all the same symptoms that you described. Totally feeling drained. I lost about 40 pounds 2 years ago and I have gained 20 pounds back. Totally feel defeated and frustrated with all of this. I have trouble sleeping so my primary doctor prescribe me ambien and it helps a little. I have not been diagnosed but I know I have it. Totally relate!

Hoping to find an endometriosis specialist
by: Jade Tay

I' m so happy to be reading this. I've been in pain for a year now, I've been through so many MRI & ultrasound scans they seem to say there is nothing there I have been on T3's & hydro morphpine for a year - it started in my vagina on the left side in a certain spot, if affects my whole left leg.

The doctors said if I had endometriosis it wouldn't affect my leg. I have seen so many specialists in the past year they still can't figure out what's wrong with me. Sometimes I feel like giving up.

I'm going to try to find an endometriosis specialist around Vancouver BC, hopefully there is one. I pray for everyone and you who have been in excruciating pain for a year or more. I'm 17 years old and I'm in pain everyday of my life.

by: Jayne

I feel so much better after reading this. I have had symptoms for 10 years now. When I first went to the doctors they told me I had a urine infection for 3 years until one day I refused to take anti-biotics and insist they did something to find out the problem.

After 2 years of seeing a gynaecologist and trying all different hormone treatments etc. I was booked in for a laparoscopy which showed the endometriosis but they said there was just a few spots, which were removed, so the should go now.

My doctor doesn't appear to know anything about endometriosis and just says the surgery should be the best treatment and have cured the symptoms.

And my partner just seems to think I love taking pain killers for fun and doesn't understand that I am in pain every day, some day's it is so severe I just want curl up in a ball and not move.

I get hot flushes, am always tired and forgetful and get back pain symptoms all the time, but no -body understands, so I just take painkillers and try to get on with things for my kids' sakes.

Soooooo frustrating - doctors need to research more and understand just how bad it is rather than letting people like us suffer x

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