Endometriosis Stories - Page 4


Here is a very positive story of healing from Ingrid. Thank you for sharing your story with us Ingrid, as women who suffer this awful disease need all the hope they can get. Hugs from Carolyn and well done. 

Dear Carolyne, I discovered your site last year and bought the book online. It helped me tremendously and today I went to see the doctor who told me I am clear of endometriosis !!!Victory ! So I will gladly share my story how I managed to avoid hysterectomy and heal naturally from this illness. I just got from the doctor right now, and I first I just wanted to tell you the good news . I will submit the detailed story within the month of August. I have to think through all the details and stuff that I applied... So until next time, take care. I’m so grateful for your site. It gave me HOPE and knowledge that now has spared me my uterus and ovary! THANK YOU! Love Ingrid. 

Update - You can now read Ingrid's full story of healing HERE


Where to start, I wrote a little just a while ago but I'm still waiting to see another specialist, I changed my diet to the endometriosis diet, I’m talking some natural herbs and also a lupron shot. But I'm still having bad days some days I can't keep anything down, get really shaky, it hurts to go to the bathroom, it’s very frustrated.

Some days I'm just beside myself and don't know what to do, I still try my best to work cause it keeps me going and I have a wonderful boss who allows me to leave early if I’m having a bad day. It feels like flu symptoms sometimes with the pain also. I'm open to any suggestions please or willing to talk to someone else with this horrible endometriosis as a part of our life. 

Leigh Nolte
South Africa

For years and years I thought the CRIPPLING pain associated with my periods was normal. I dreaded them for the whole month. I became addicted to painkillers and still am. I ended up in hospital finally quite recently, 1 August 2005 to be exact, after collapsing on the kitchen floor and lay there for hours screaming and cursing. My period had started. It felt how I would imagine it feels to be shot in the stomach. The very next morning my Mom helped me to the doctor who booked me into hospital straight away thinking either a burst appendix or endometriosis.

I thought endometriosis was something that only happened to sexually active women, like cystitis. It was very difficult having to be scrutinized and prodded by various gynae's. I refused to let anyone look inside me. Nobody had ever seen my body before. I was given Depo-provera immediately and it was arranged that a laparoscopy should follow a.s.a.p. The Depo caused me to bleed a disturbing black blood everyday for a month.

At first I bloated up and had severe breast swelling and pain, but after a few weeks these symptoms subsided. Thank God. I changed gynaecologists at this point because the woman I had been seeing had a rather abrupt 'Oh get over yourself' manner which was unsettling and frankly unprofessional. I decided to see my mother's gynae. A sweet, kind, gentleman if ever there was one. Like a Father Christmas.

But I remain fundamentally wary of all gynaecologists. His initial diagnosis was Primary Dismenhorria. I pushed for a laparoscopy because I couldn't endure an intimate examination. It would have meant that this strange, older man would not only have to see my legs but also break my hymen manually. I would be unconscious during a laparoscopy. That was a nightmare all it's own.

Surrounded by nurses, knickerless and terrified, I awaited the operstion in the ward, fighting panic attacks and tears. Being wheeled down the corridor was on par with a walk to the electric chair. MEN were going to be LOOKING AT ME and doing UNSPEAKABLE INTIMATE things to me. I almost fainted several times. Indeed I had to be cut and widened inside so that my uterus would be accessible. I am no longer a virgin now.

The diagnosis is SEVERE ENDOMETRIOSIS. I have pockets of internal bleeding and endometrium extensions on just about everything outside but luckily not inside my womb. My doctor decided an injection of Zoladex(Goserelin) would help to dry up the pockets of blood. By the way, Zoladex is a long, thin, absorbable crystal implant, inserted diagonally into the surface flesh of the abdomen. Interesting. I am now experiencing menopause at the age of 26.

I have noticed that I'm gaining weight and having mood swings. Even more than my usual pathological ones. Suicide is constantly on my mind these days. I am to see a Belgian specialist at the end of this month. From here on it's uncertain terrain. If the hormone treatment doesn't work a partial hysterectomy might be needed. I might never even have the option of having children. I have many more operations to look forward to. But thanks DR SHERWOOD. You are a kind man. Written by Leigh. Endometriosis sufferer and general sufferer from South Africa. My best, best wishes to all other ladies with this disease. 

Trisha Young-Sneed 
United States

I was diagnosed with endometriosis at the age of 19. Just out the blue one day I had a terrible pain, and blood began running down my legs as if I had been shot. After going to the ER they notice that I had endometriosis and the disease had pushed my right ovary behind my uterus, so I had to have surgery right away.

Well, that was 8 years ago, and I still suffered with the disease. My doctor placed me on Depo Lupron for 2 years (20-22). After that they were so sure that I'll never suffer again! Not true, At 23 I had to have the laparoscopy, because the disease had spread over my uterus and ovaries. Next, they tried Depro Vera, that did not work either, so after being told that I'll never have a child, and to deal with the pain, I finally had my daughter Lauren and I had an total hysterectomy 3 months ago and I feel great.

So I just want to encourage the ladies to hang in there, if you planning on having a child or children take Depro Lupron, first sight of your period, after the treatment is over that is the best time to try to conceive. Ladies, please stop being someone's cutting practice dummy, you know what your body can take and can handle. Having a hysterectomy has been the best thing that happened to me since I had my daughter 2 years ago, when all the doctors said that the endometriosis had damaged any chances for me to conceive, keep the faith and keep trying. Stay strong, Trish 

United States

I was diagnosed with endometriosis at 14. I had two surgeries that resulted in a lot of scar tissue. I was told I'd never have a baby without help. That was five years ago and since then I got married and got pregnant on my honeymoon! Now we have a 4 month old son and can't wait to have another! 

Brenna Kern
United States

My name is Brenna and I am from a little town called Spooner (in Wisconsin). I've been reading womens' stories about endometriosis from many places. I am 20 yrs old (21 in Nov.) and have recently been diagnosed with endometriosis (I had my laparoscopy on August 5th of this year). Here's my story, its short, compared to many... but you're the only one I've emailed who will actually understand.

I got my first period two days before 4th grade, I was 8 yrs old. I was so scared, and felt alone. As I got older I assumed that monthly period pain was normal because I have an older sister who told me of her cramps and irritability, and my mom too. Periods were always heavy until a few years ago. I had an ultrasound and my doctor had said that there was a cyst on my ovary about an inch in diameter. He said that was a decent size for a 16 yr old, and probably wasn't done growing (not that he thought it was good or anything).

It was the kind of cyst that bursts right before or during your period where you are in so much pain that you can't move. It burst when I was in school one time; I was bending down to get a pen that had fallen... I couldn't get up for 10 minutes. I wanted to cry. I had another cyst burst when I was walking up my deck stairs at home after school one day. I had a backpack full of books when it happened, and all I could do was hold on to the railing for dear life... or else I would have fallen backwards. It hurt so bad.

I was put on BCP when I was 17, to control the cysts, no big deal. I thought it was working. I assumed it was working. But I continued to have mild pain before, during, and after periods. I dismissed it as cysts, and "toughed it out" month after month in the beginning. Recently (a year or more), there has been continuous pain between periods, and then some... but I continued to "tough it out". Pain had been increasing during periods and for a little over a year now, the pain had become extremely horrible between periods as well.

Again I thought that was normal and just prepared for my monthly friend to drop by for a visit. Midol had become my best friend... but still didn't work. For over a year, the pain has increased greatly with sex, going to the bathroom, and even walking around. The only thing that keeps me going is the motivation of college. There have been many days that I could have easily (and should have) stayed in bed because of the pain. I didn't understand it. I had never heard of endometriosis before.

I had finally made an appt. to see my family doctor after a horrible night of excruciating pain during and after sex. My boyfriend insisted that I see a doctor even though I just kept dismissing it as a cyst all the other times. My family doctor did a pelvic exam, and that hurt like hell. He said that he didn't feel a cyst but that could be because it may have ruptured when he was giving me a pelvic exam, so he made me an appt for the same day to get an ultrasound. No cyst.

So he recommended that I see a gyno. I couldn't get in for a month. Finally! I saw my gyno for the first time. He told me that we could either switch my pills for a few months or do a laparoscopy. The risks were either the pills wouldn't help or they would, or that a laparoscopy would find endometriosis or not and then I would have been cut into. I told him that I didn't care about scars from a laparoscopy because I had had one a few years before to get my gallbladder removed. I didn't want to wait to see if another pill had worked, I had already been on a BCP for a few years... So I had the laparoscopy a week and a half later.

He wrote on my take home sheet that he found endometriosis and removed what he could see, and that we would talk about treatment options at my follow-up. My follow-up wasn't til 2 1/2 weeks later. And I was still in pain (and not because of the surgery). I went to my follow-up and asked him how much longer until I feel no pain. He said, "You're still feeling pain?" I said, "yes". He told me to wait a bit and come back and see him in a month. I made it no longer than a week before I went back to see him.

He told me all about Lupron and said that that would be my best bet for pain and feeling better. So I scheduled an appt to get my first shot. I got my first hot flash the next day, and countless other times until now... they suck as well as the night sweats, migraine and borderline migraine headaches, body aches, fatigue, not sleeping at night, and everything else. I'm almost to my 3rd shot, and I am still having horrible pains that keep me up at night, make me doubled over, not concentrate on other things (like school), and cry. It hurts.

I have no close friends or relatives that have endometriosis to talk with, and therefore don't fully understand. I don't even really have anybody to talk to about the "menopausal" symptoms... And everybody thinks I'm exaggerating. I don't want to continue Lupron if its not going to work for me. I lie awake at night, unable to sleep, in pain, with tears streaming down my face. I'm usually good at hiding that from my family... I've been so moody and rotten to them these past few months that I feel bad showing discomfort- although they can usually tell when my face is distorted, showing much pain.

I would try to exercise or do other activities to help, but at this point I have no energy. I have my appt in about a week, and was thinking of asking for a referral to Mayo Clinic in Rochester, MN for a second opinion. Do you have any suggestions? I hate this stuff. Best of wishes to all... Feeling Lost and Alone With my Endometriosis, Brenna 

Stories Page 5