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 - Wondering What Will Happen

by Katy

I am 17 years old, having been diagnosed with Endo at 16. As far as I am aware, this is a relatively young age to be diagnosed. I began having a stabbing pain in my pelvis area, and went to the ER. I had an ultrasound done and the doctor said there was nothing there. He suggested I go home and drink broth.

The pain increased over the next five months, with more spots that were in pain. I went to another doctor, and the only suggestion he had was that I had pinworms. I took the pinworm medicine, and obviously nothing was resolved. A month later I finally went and saw a lady doctor, and she referred me to an OBGYN, who then immediately saw the symptoms.

I was scheduled to have surgery, but it was cancelled due to the fact that they hadn't done another sonogram (ultrasound) on me. I am currently waiting for an open appointment.

The Endometriosis affects my entire pelvis area, with extreme bloating. My ribs and stomach feel as if they are all "stitched together" and breathing is sometimes difficult (as in getting a good breath in).

It also affect the muscles in my back, to where it twitches and "corkscrews" my vertebrae. As soon as the chiropractor sets my back, the muscle twitches and they corkscrew again.

I believe that with Endometriosis, there is a connection with yeast. Before it began, I had a horrible yeast infection (I still do). It will not go away, but I believe that is because of my diet, which I have not changed. I have read up on the yeast connection with Endo, and it makes a lot of sense. I encourage others to look that up, as it might be helpful.

I am hoping that this will be treatable and successful, as I hope to have many children of my own someday. What a tragedy it would be if this blighted my chances. I pray that it will be resolved!

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when will this stop.

by Dee

I was diagnosed with endometriosis when I was 23. My symptoms started when I first got my periods at 13. Very painful periods where I used to vomit and blackout from the pain.

No doctor could explain why. After years of pain symptoms I had a hysterectomy at 33. They left both my ovaries as they were fine and because of my age.

At 42 I had my left ovary taken because of endometriosis which was also found on the lining of my stomach and on my bowel.

When I was 44 I started to bleed from my vagina. I was found to have endometriosis in my vagina. My right ovary was then taken hoping it would stop the growth of the endometriosis.

But at 46 it was found to be blocking my urethra which was killing my left kidney. It only works at 23% now. At the same time endometriosis was found in my bowel and rectum.

I lost some of my bowel and rectum and half my urethra. Now at 48 my bowel symptoms are starting again and need to have an MRI.

When will this stop. If any one is or has been in a similar situation I would love some feed back.

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Endometriosis hell

by Regina

I am 28 and was diagnosed about 4 years ago. I have always had very long painful periods and when I was 17 I had cysts covering both my ovaries.

My doctor at the time had me wait it out and allow my body to absorb the cysts which eventually it did. 4 years ago went for a check up because I was having severe pain during and after sex.

My regular physician was convinced I was drug seeking because all my tests came back negative, after many months of doctors appointments he finally referred me to a gynaecologist. They put me on lupron for 4 months and I was taking pain blockers and killers to dull the pain.

I had laparoscopy surgery and she found a lot of scar tissue, she removed everything she could find and she took me off the shot and told me to take birth control for 3 months. I started bleeding as soon as I went on birth control and didn't stop until I went off of it. I then lost my insurance.

Less the 6 months after my surgery the pain came back and was manageable until about a year ago. I have 8 to 10 day periods now and my cramps are so bad I'm in bed for at least 3 days of my period and they are coming every 2 weeks.

I have opted to get a hysterectomy but there is a chance I will still continue to have pain because they are leaving my ovaries. Its been a long road and I thank god everyday my fiance and family are so supportive.

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Hope I will overcome endometriosis

by Celia
(South Africa)

Well it all started in 1999, my periods would be so painful to a point where I had to stop walking when I felt a sharp pain, same as the ovulation.

Then in 2001 I became pregnant but had a miscarriage on the 3rd month, and also had another miscarriage in 2003. Since then I haven't become pregnant.

My doctor started monitoring my periods and saw that the pains where severe and he suggested laparoscopy and that's where I was diagnosed with endometriosis in 2008.

The doctor told me that it was not curable and I will not fall pregnant, and guess what I believed him to the point that it ended up being severe.

Since 2008 my periods would torture me month in month out till last month where I decided to consult with my new gynaecologist. I went for the second laparoscopy and the results were bad.

The doctor said I was in stage 4 endometriosis, my womb, ovaries, and bladder where pulled together by the "spiderweb" of adhesions. The doctor had to treat the adhesions and pushed my organs to where they should be.

I cried my eyes out and I asked the doctor if I will be able to conceive, and he said yes.

Now I believe that I will over come this illness and that all is in good health with me. I am very happy to have found this site and hope that all are healthy and blessed.

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Trying to function with endometriosis

by Angelique
(Baltimore, MD, USA)

I am a 36yr old mother of two, I have had 5 surgeries due to endometriosis since May of 2010, including a partial hysterectomy.

My most recent being April 26th of this year, and I'm tired. This disease has taken so much from me and I'm exhausted with dealing with it. I don't know how much more of this a person can take.

It has effected every single aspect of my life. Physically, financially, socially, emotionally, intimately and I am completely exhausted.

I am beyond frustrated and my children have suffered with me through all of this because it's affected them as well. I'm tired.

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7 years finally diagnosed with endometriosis

by Spotter
(Sydney, Australia)

8 years ago, During 2005 I started spotting about a week before my period. This scared me as I had a friend who had recently been diagnosed with cervical cancer.

I obviously thought my spotting was something very sinister. I spoke to my mum about it who told me she had similar issues when she was younger and it never interfered with her having kids etc.

I decided to get it checked out anyway and went to the doctors for advice, followed by gyn appointment who advised there was nothing wrong and the lazy explanation 'some women spot'.

I reluctantly accepted the diagnosis and got on with life. Changed to different pills etc but nothing ever stopped my spotting. Fast forward 7 years, married and trying to start my family unsuccessfully for a year. More tests, nothing found. Idiopathic infertility.

Frustrated and desperate for a family we tried ivf twice. BFN both times and no explanation other than 'maybe egg quality'. Try again?

My husband and I changed ivf clinics and as a general work up I had a hycosy. The most single painful experience of my life. The best part was they finally found something!!! A chocolate cyst, suspected endometrioma on my right ovary!! Finally a reason for my spotting and maybe a reason for my unexplained infertility.

Overjoyed but frustrated at the incompetent medical system. Don't ever take unexplained as a diagnosis and don't let anyone tell you bleeding for 2 weeks of the month is normal. Fingers crossed for the future, hopefully light at the end of the tunnel!

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Affects of Endometriosis

by Liza
(White Plains, NY USA)

Endometriosis has made Liza more assertive ....

Endometriosis has most definitely affected every aspect of my life. Emotions, relationships, work, social, trust, faith, really, everything.
But, I believe we all know the negative.

There is a positive aspect from dealing with endometriosis. That is, I have learned to be more assertive; which in turn has helped me push my way forward in general life aspects; work, school and relationships.

I express myself when I am disappointed, and no longer wait for someone to ask me what's wrong. I ask questions when I don't understand, without feeling shame or embarrassment.

I would have never became this way, without me going through the pain and symptoms of endometriosis; my frustration with Dr.s, to disappointments in treatment and surgeries. It has made me learn to help myself, and push forward; no looking back!

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