Your Story Here! In your own words. A place for you to share your individual battle with Endo, Infertility, Treatment and Effects.

Ladies, welcome!

Thank you all in advance for sharing these personal details of your life. 

If you are interested hit me up at belladonnaheather@gmail.com or alternatlively leave a comment and I will get back to you and explain what you need to do.

Want to share but don't want your name published? No problem.
This is completely confidential. Anything you share here will not be shared with a third party so have no fear.

We simply want to create a community for women to get there story out there and above all create awareness for Endo.

Thank you my Endo Sisters. Stay strong.

Welcome, one and all and thank you for you bravery in sharing your story here so that other's can see they are not alone.


Well ladies, here you will find the beginning of our "Your Story Here" link. I would like to thank each and every one of you for sharing your experiences with Endometriosis with us here.

Tracie Foreman,Wichita, Kansas, USA

I first began to experience symptoms right around when I turned 20. For two years, they never quite figured out what was causing my pain. More intense testing to see what was the cause of my symptoms was put on hold when I finally became pregnant at the age of 22, after having tried for over a year. In retrospect, when I reviewed my medical records many years later, I saw that they had suspected endometriosis, even though no one ever mentioned this suspicion to me. I probably would have received this diagnosis then, had it not been for my pregnancy.

Pregnancy is known to put endometriosis into a type of remission so thankfully during my pregnancy and for several years afterwards, I no longer experienced any painful symptoms associated with endometriosis.

Then, when I was 28, the symptoms returned. This is where my experience with doctors begins to take it’s dark turn. I was told that it was my bowel, a common error made by doctors when it comes to women with endometriosis. For the next 2 years, I was told that my symptoms were bowel-related or stress and I was dismissed as though I was not having serious pain.

Right before my 30th birthday, I was admitted to the hospital for what was suspected to be appendicitis. I underwent surgery and was told that I had a cyst on my ovary. There was never a mention of endometriosis. I did not find out until years later when I obtained my medical records that my appendix had been adhered to my side.

Following surgery, I still continued to have pain, which continued to be dismissed by the operating surgeon and my primary care physician. Finally, 5 months after this surgery, I saw my OB/GYN, who took my complaints seriously and scheduled me for a follow-up surgery. It was at this time that she found endometriosis on my right ovary, right uterosacral ligament, and a cyst on my left ovary. When asked after the surgery whether this would have been present at the last surgery, she stated that it most likely was there then.

I continued to experience pain following surgery, which again was dismissed as being bowel and this is when I had the bad luck of a doctor now mentioning irritable bowel syndrome in my medical records. This is a serious problem for women with endometriosis, because endometriosis is commonly being misdiagnosed as irritable bowel syndrome.

Try to get a doctor to take your abdominal complaints seriously when you have this misdiagnosis in your medical history.

To make a long story short, I have fought on and off throughout the years with doctors about my symptoms being endometriosis, as opposed to irritable bowel syndrome, despite the fact that I have had surgery for endometriosis in the past.

I have now had a total of 4 surgeries for this awful condition. I had to fight tooth and nail each time to get taken serious. Guess what, endometriosis was found each time, not to mention in my last surgery my bowel was adhered to my side.

I have now lost all faith in the medical profession. I no longer seek their assistance. Do you want to know why? Even after 4 surgeries confirming endometriosis and 1 where my bowel was actually adhered to my side, they still ignored my complaints and wanted to obsess over irritable bowel syndrome.

Women Suffer Tremendously With Endometriosis

I know there are tons of other women out there with stories identical to mine. The sad part is that you would think by now that doctors would start to take this disease seriously and start taking their patients seriously instead of continuing to dismiss them and their pain.

I welcome everyone who has read this post to become more familiar with endometriosis and the plight of women with endometriosis and maybe we can finally do something to help us improve the quality of our lives! Feel free to comment!

To read my other parts of this story, please feel free to visit my blog at  www.empowernetwork.com/tiforeman/ .

A very big thanks to Tracie for sharing her story. 

Joyce Mc Kinsey, North Dakota, USA

This is a personal story about my battle with endometriosis, and what I learned through years of seeing doctors and holistic practitioners.

In my mid-twenties, I had horrible cramps and pelvic pain daily, and ended up in the hospital twice because of this pain.  I couldn’t sleep at night, work was becoming increasingly difficult, and I felt tired all the time.  After doing several ultra-sounds and a colonoscopy, my gynecologist decided to send me through fertility testing, despite the fact that I was not trying to have a baby.  The idea was that the extensive and rigorous testing necessary to determine fertility would probably find the cause of my pain.  It did.  A laparoscopy confirmed the endometriosis diagnostic.While the surgery removed the endometrial lesions, I had more pain than ever before.  I was desperate for relief.  The allopathic protocol?  Painkillers, and hormones that induce menopause.  I took the pain pills, but not the hormones.

I sought help elsewhere.  I hired a nutritionist who specialized in endometriosis.  She put me on probiotics, detox herbs, and gave me lectures on what not to eat.  At that time, I wasn’t ready to see the connection between food and health.  I ignored her advice and continued to eat and drink as I pleased.

Several friends of mine were pushing me to seek acupuncture.  I resisted.  I didn’t think it would help.  Then, my psychologist, who heard about my pain every week, gave me a proposal:  to forego paying her for one week, and use the money towards acupuncture instead.  I agreed.I saw Adele Reising in New York City, whom my therapist had recommended and who specialized in women’s issues.  Adele informed me that it would take at least 3 months of weekly treatments to get to the core of the issue.  I bit the bullet and paid the $90 a week despite the fact that I couldn’t afford it.  At first, the pain remained the same.  But gradually, the pain lessened.  Then, after 3 months, something magical happened:  the pain actually went away.

Fast forward a year, and a move to San Francisco.  The pain returned.  It wasn’t nearly as intense, but it hurt.  After extensive research, I found Joelle Dussuyer.  With 20 years of experience and a solid practice, she was the right choice.  3 sessions later, and I was pain free again.  Every 4-5 months for a few years, I had relapses.  But one or two sessions of acupuncture always does the trick.

Now, it’s been almost 2 years since my last session.  I don’t have pain anymore.  The endometriosis isn’t completely cured, but there is no pain.

Acupuncture literally saved my quality of life.  Without it, I’d be miserable, sick, and in constant pain.  My life would be a different life.  In all, it cost me less than $4000 to be pain free.  I’m not rich and I can’t really afford it.  

Kerry, United Kingdom

I was 20 years old when I was diagnosed with endometriosis. Prior to that, I had been experiencing chronic pelvic and lower back pain, heavy and painful periods and extreme fatigue.

I saw my GP about these symptoms when I was 18. Due to my history with anorexia, they told me I was too young to have endometriosis. I was told to go away and “eat more.”

I knew that something wasn’t right. I was backwards and forwards to the doctors. They told me I had IBS (irritable bowel syndrome), and said my pain could be due to a food allergy. I was told the pain was “normal.” My parents took me to see a private gynecologist. I felt no one was taking my pain seriously and thought this could be a means to an end. Surely a consultant gynecologist could get to the bottom of this? My expectations were far from the truth. He told me I hadn’t had enough periods to have endometriosis and that I was too young. He knew about my mum and auntie’s battle with the condition yet sent me away.

I was losing hope, I didn’t know what to do. I was studying psychology at university but because of the pain I had to come home. I could barely function, let alone study for a degree. I felt this pain was ruining everything.

Then we went to see a specialist consultant in endometriosis. He said there is a strong possibility that I had it and the only way to find out was to perform a laparoscopy. I was scared. Part of me wanted them to find endometriosis, but part of me didn’t as I knew it can affect fertility.

The surgery found severe stage endometriosis. I didn’t know what to think. It took a while to sink in that this could stop me from having a family. The registrar decided not to put me on any hormone medications and she felt I wouldn’t need any more surgery for a good three years. Knowing no different, I believed what she told me.

A few months later, I was still in pain. I went back to see her and she said the pain was “in my head” and there is no way it could be endometriosis that quickly. I cried all the way home as the pain had come back, my periods were awful and I was feeling very low.

My parents paid for me to see another gynecologist privately. He was lovely. He wanted to perform a second laparoscopy. He found a new growth of endometriosis and put me on the combined pill. It is too early to see whether it’s working, but I have hope.

Infertility does concern me. If I’m not able to conceive naturally, I’ll adopt. Endometriosis is a difficult illness to battle with but, due to the amazing support groups it’s hard to feel alone, especially when so many women are dealing with the pain of endometriosis on a day to day basis.

I may only be 22, but I’m determined to be stronger than the endometriosis.

I’d tell anyone else: if you think something isn’t right, the likelihood is that it isn’t. You are never alone and there are many people who can support you, and many professionals who can help you deal with the pain of Endometriosis.

Jessica, Maine (USA)

I was diagnosed with Endo 21 years ago and I have seen the progress of treatments (and have been apart of many of them). 

I am currently deciding if it is time to have surgery. I have been told that I would have to have a full Hysterectomy and I am worried about what would follow. 

My mom had her surgery at the age of 26 due to Endo but was able to keep her ovaries and had little complications. I also have been recently diagnosed with Fibromyalgia and trying to deal with my "demons" one at a time. (TBC)

Caroline (USA)

My Mom was diagnosed with Endo when I was under 10 years old--I don't exactly remember. She has had 4 open surgeries, including a drastic hysterectomy when I was 17. Her reproductive endocrinologist has had an eye on me, tracking my puberty experience, since I was 10.

My period started on time at 13, but for an entire year before, I experienced monthly pain in my ovaries, so the current theory (myself and my mother) is that I ovulated for a year before my period started. They became increasingly painful, intense, and irregular. I would go 100 days without a period, then 11, then 28, then 115. The doctor decided it was time to do a blood test to see if I had PCOS. The test was positive, and they put me on Yasmin at 15 and a half, 5 years ago. Everything was fine in the reproductive organs department until my first year of college, age 18. The pain and intensity of my periods had been steadily increasing for six months, and I had a period with intense cramping that did not stop when I went back on active pills. I ended up in the ER three times in a week with unbelieveable pain that only increased. The third night they gave my IV Dilaudid, that did not touch the pain.

The next day, my parents flew me home (I was 2000 miles away at school) and I had laproscopic surgery two days later. I was diagnosed with stage 2 endo, and was instructed to have children early (of course). I was also told that the surgery would "last" for about two or three years, and then there was the possibility of it coming back. Of course, I have been on some form of birth control for five years without stop, but this is not the solution. Lupron has been threatened and I have declined. I am 20 years old, in college, and trying to have a life. I have no desire to go into chemical menopause. I feel this is within my rights as a woman.

I have four female relatives with confirmed endometriosis, one with confirmed PCOS, and we suspect that at least 3 others had/have PCOS or endo or both.

Now I am about two and a half years out from my surgery and I am getting worried. Because I am currently studying abroad, I have gone on continuous birth control without stopping. My body, of course, doesn't like this so much, and I had a period in February because it had been about 3.5 months since the last one. However, I have lucked out since. I look forward to conversing with you on the site and hearing your stories. If you have any questions, please do not hesitate to ask. Because I have been a patient most of my life and my mother is a medical professional, I know much more than I should...

Sincerely,

Caroline

Cassy (LA, USA)

Since diagnosed after showing symptoms for 15 yrs, my life and particularly my immune system has been in a downward spiral. By the time I had a laparoscope I was stage 4 severe Endo. 

I have tried continuous birth control pills, Depo Provera (caused seizures), Danzonal and the Endo diet as well as naturopathic and chinese medicines. 

I have been pregnant twice and even though progesterone therapy and bed rest (saw heart beat both times) miscarried at 9.5 and 13 weeks. I have been through infertility twice and am treatment free after being referred to a palliative pain specialist last year.

I have endo on my bladder, uterus, bowel, cul de sac and supporting ligaments. My uterus has been adheized twice causing over 60 kidney and bladder infections. Treatment for the last infection caused c difficile (Clostridium Difficile-a bacterium that can cause symptoms ranging from diarrhea to life-threatening inflammation of the colon) that killed me for two minutes when my bowel bled out and has caused constant colitis for the last 8 years. 

Due to this disease I have lost my career as a horse trainer/rider and am currently unemployed although hoping to start a home business grooming pets. Last year my pain specialist diagnosed me with severe pelvic nerve neuropathy of which of course no treatments are available. 

Kids are out of the question as is quality of life. Anyone else out there feeling as alone as me? Since being diagnosed with Endo I have been diagnosed with 9 other auto immune diseases.

Young Hopeful Endo Sufferer (USA) 

I am 20 years old and having been living with Endometriosis for the past two years. I feel like I've been through hell and back. I've had a few surgeries, I've been to see several different doctors, I've had multiple procedures done, and I've been on several medications to try to help me, but all to no avail. I have been in constant pain for the past 16 months. I feel tired all the time, despite if I get enough sleep or not. 

Before Endometriosis, I was a fairly happy and a real go-getter. I participated in sports throughout school and several activities. I loved running and hanging out with my friends. Now, it's very hard for me to keep up with my daily life. I cannot run and walk by dog every day like I used to. It's very hard for me to do any sort of physical activity. I'm currently going to school (I made the switch this semester to almost all online classes because of my health) and I work part-time. I'm starting to feel like I need to find a different job, something that is less demanding and will allow me to sit down (I have to stand and walk around quite a bit at my job). 

Some days are better than others. I've pretty much given up by friendships and relationships. It's hard to go out and do things with other people when you're always tired and hurting. Plus, who wants to hang out with someone who's like that? I try to stay positive, but at this point in time, I really don't know what to do or think any more. It always seems that I just hear horror stories about women with Endometriosis who have been dealing with it for multiple years and nothing can be done. I hope like hell that doesn't happen to me. I don't know what I'll do if that's the case.(TBC)

        Mrs. Rosaline Dibbs (United Kingdom)

First off I would like to thank you for sharing my story on how I was diagnosed with Endo. I really believe in this cause and letting our voices be heard is so important for other Women going through a similar situation.

After I had my son at age 28, I didn't go back on the pill. I'd been taking it since I was 14 and, looking back, I think it masked my Endometriosis symptoms.My periods had always been painful but not intolerable. Although I had irregular bleeding when I was 18 or 19, nobody mentioned Endometriosis. They changed my contraceptive pill to see if that would help, and the results of a cervical smear test showed irregularities. 

This led to a colposcopy (a procedure that examines the cells in the womb), and pre-cancerous cells were removed.I'd also had trouble with my bowels – bloating, diarrhoea and sometimes bleeding. I know now that these can be symptoms of Endometriosis. 

At 25 I came off the pill to start my family. I got pregnant quickly, but miscarried. My second and third pregnancies happened soon after, and although both my son and daughter were premature, they're both fine.

After having my son, my periods were heavier and I gradually started becoming unwell. The main symptom was fatigue. Pushing the baby buggy up a hill was exhausting.Then, last summer, I had severe pain during intercourse. 

Endometriosis adhesions are fibrous, like a web, and can join organs together. Apparently my ovary is attached to my bowel, and this could be causing the pain. I also had a bad bout of bleeding after sex. I bled for about a week.

The first GP I saw told me to wait and see what happened, but I didn't want to do that, so I saw another doctor. He gave me medication to stop the bleeding, sent me for an ultrasound scan and referred me to a gynaecological consultant. The scan showed a small cyst on one of my ovaries but they said this was nothing to worry about.

{At my consultant appointment, I was referred for a laparoscopy, the only way you can definitely diagnose Endo. After the op, my consultant simply said to me "Well, you've got Endometriosis".}

I’d never heard of it. He didn’t really explain what it was, but said they’d give me hormones to slow down my ovaries and put me in a fake menopause, and HRT (Hormone Replacement Therapy) to combat side effects such as hot flushes.

I was hurrying to pick up the kids from nursery, and I think I was in shock because I didn’t ask any questions, which isn’t like me. I had the injection, and when I got home I thought, ‘What have I done?’.The injection helped reduce the pain during sex, but it affectedly me badly. At first I felt great. I had so much energy. But it soon got worse. I was exhausted and emotional. I felt as though I had PMS every day. My bowels caused problems, and I became really bloated. After two months I came off the HRT and felt better. I stayed on Zoladex,

the fake-menopause injections, for four months, and stopped having periods during that time. I've been offered another course of Zoladex, but I've decided to wait for a few months before taking it.

I want to let my menstrual cycle get back to normal, and I'm keeping a diary of my symptoms so I can relate them to my cycle. 

I'm trying natural ways to improve my health. I eat more healthily, I've stopped having caffeine, I'm jogging, and I feel much better. The pain during sex has returned, which is disappointing.

If a woman has been diagnosed with Endometriosis, I’d want to reassure her that she's not alone. People worry about how the illness will progress, but it’s different for everyone. 

If you go to internet message boards and read about people who have a very bad experience of Endometriosis, try to be objective. There will be people who no longer write messages because they feel better and are getting on with their lives.

CharlyBear (Australia)

My name is Charly I'm 19 years old and live in Australia. I have always had very severe pains during my periods and extremely heavy bleeding. I went to the gyno in march 2011 and explained my symptoms, I also thought I had IBS (irritable bowel syndrome) as I was always constipated. I had the trans-vaginal ultrasound and was sent for an exploratory laparoscopy to see what was causing all of this. 

I was having to take time off work every month because I couldn't even get out of bed some days, I was in agony. I was bleeding through a super tampon as well as a maxi pad almost every hour. 

I had my first surgery at the end of may 2011, I woke up and they explained that I had stage 3 Endo and several polyps. The Endo was on my fallopian tubes, right ovary, peritoneum and on my bladder. 

They told me that they weren't able to perform the removal of it as they were not prepared. I had another surgery 2 weeks later and they removed all the Endo ad polyps. It's been almost 6 months since my last surgery and everything was going well for the dirt few months and my husband and I have been trying to have a baby but nothing so far. 

The last 2 periods I have had, I have been in a lot of pain again, but the periods are heavier than before my surgeries! I've had more clots in my period in 2 days than I would have in a whole period and I'm starting to get worried that the Endo has already come back (my story as you can tell is to be continued)

Infertility issues; 
The stories of real women with Endo.

MadisonS (USA)

I had been having heavy periods and cramps for years. It had been getting worse but I was able to cope until I had a severe attack. I was an Army nurse stationed at the Balad airbase in Iraq. 

The first day of my period the pain was so severe I couldn't walk and almost passed out. The doctors thought it was Endometriosis but lacked the diagnostic facilities to be certain. I was medevaced, along with a plane load of wounded soldiers, to Germany. 

There I was diagnosed with Endo and sent back to the States for evaluation and treatment. They removed all the implants they could but the following months I still had severe cramps and pain. 

They decided to treat me with drugs (Gn-RH agonists I think) for 6 months. The treatment worked, I didn't have any periods during treatment and was pain free. 

In the meantime, my case was reviewed and with my consent, I was given a medical discharge. I remained pain free, with normal menstrual cramps, for 4 years. I was just starting to get more severe cramps when I got pregnant. It's been a year since my delivery and I only have normal menstrual cramps.

CosmicKitty (New Mexico)

Hi, I am a 35 year old female with severe stage IV Endometriosis that has been TTC (trying to conceive) for over 3 years (2 failed IUI's.) I have had 2 laparoscopies to remove as much Endo as possible. 

During my last surgery a couple of weeks ago, a grapefruit sized cyst was removed from my right ovary, and my right tube was also removed because of significant damage. My left tube is not looking so good either, so the outcome of the surgery was that we should move on to IVF asap. 

My Doc recommended doing 1 month of Lupron in April 2012 before starting the IVF stimulation meds and IVF in May. I am just so confused by this entire process, because I've heard that generally 3 months of Lupron is recommended before IVF. 

My doctor is concerned that too much Lupron will over-supress the ovaries, and that I will not have a good response to the stimulation at that point. I only have a total of 10 follices, and that was pre-surgery, so now it could be less, and I just feel like maybe it is not worth it to go through the entire process being that it is so expensive and that our chances of conceiving are only about 40%. 

Our doc also encouraged us to consider the Attain program, which allows for 3 regular and 3 frozen IVF cycles, with a 70% refund in costs if it doesn't work. 

In theory, this sounds good, but I'm worried that with severe Endometriosis, my body might not be able to handle multiple rounds of stimulation (wouldn't this make everything worse!?) 

Patricia Margit (Dallas, Texas)

Hello. I'm an Endometriosis patient - all Doctors told me that I have less than 7% chance of getting pregnant even with IVF. 

Doctors told me my hormonal level was too low for a pregnancy, I needed a third surgery even before I could think about IVF. 

I cried my eyes out for years. Then one day I did get pregnant completely naturally. It's in God's hands.

My OBGYN called my baby 'miracle baby' and said this pregnancy 'shouldn't have happened'. I'd like to share our story and give hope to other women.

Lauren Jespen Mace (Idaho, USA)

I found out I have Endometriosis while having some fibroids removed. When he told me I also had endo, my heart sank. 

Not one, but two things against me. I am 32 and want to have a baby and this news broke my heart. 

He did say that I now have doubled my chances of becoming pregnant since the removal of the fibroids and the treatment of the endo, but it is still in the back of my head. 

I am going to focus on eating well and exercising and taking care of my body and pray that I can have a baby.

Doctor's Experiences

Hav Monirath (Medical Doc/Pathologist at Calmette Hospital)

There are many cases of Endometriosis in Cambodia, particularly in Calmette Hospital where I work. I doubt that infertility rate is not low given the increasing number of Endometriosis I see every day.