All in my head?? no you dont understand Contributed by jaymie

My name is Jaymie i am 22 and have suffered with endo for a very long time now. My periods were always painful, painful to the point that i would crawl up in a small ball on my bed and cry for hours.

WHen i was 19 the pain grew so bad that i found myself in the ER every second night. In order to deal witht he pain i was given morphine, and perceset, and the number of tests i had was unbelievable. I had CT scans, Hyda scans, ultrasounds, blood work, ect. At one point for 2 years the doctors told me that the pain was all in my head, and sent me to a psychiatrist to deal with the issues in my head. I was put on antidepressants, and was told that i did not deserve anyones help, because all i wanted was the drugs which they chose to stop giving me because they thought i was a perscription drug user.
For those 2 years i suffered with debilitating pain, i had to leave work and suffer all alone. I truely was alone, no one knew what i was going through, they could not see my pain, infact i became a master at hiding my pain. It took a long time to find someone who would even take the time to speak to me without turning me away, until i found an STD specialist who did an internal ultrasound and found something abnormal, the next day i received a phone call saying that i was to go into surgery for a lap to find out what was wrong.
The day finally came, and when i returned to the gyno’s office and i heard the words ENDOMETRIOSIS pour from her lips my biggest fears came true. That was 1 year ago, and to this day i still find myself hiding my pain, there are the few in my life who say they can see right through me, however they will never be able to understand. That is why i have come here. Where i live, there is no endo facility, knowledge, or support groups where i can find someone who understands. I come seeking one person who can look into my eyes and say, “dont worry, i know, and you are not alone.” Even though you cannot see the disease by looking at me, it is there and it is real

A very positive story Contributed by Carolyn

My own story of Endometriosis is SO different……Please, please read, and let my message give hope.

The content and final outcome of my own story is a stark contrast from that of so many women around the world who suffer from this devastating disease.

The content differs because I did not go through the rounds of drugs, tests, operations, false hopes, mis-guided information, more drugs, more pain, worsening symptoms ….. need I go on; because so many of you know and experience this scenario – year in year out. It is utterly heart breaking.

The outcome of my story was based totally upon my absolute focus and conviction to get well, to get rid of Endometriosis, to banish this disease from my life. And I did. I took the slow, steady, gently, and natural way using alternative therapies and LOTS of positive thinking. And the final outcome …… I did beat Endometriosis, and it never returned. It is nearly 10 years ago that I was given proof that I had beaten endo, by a visual inspection of my internal organs, with a laparoscopy, and the gyne said there was NO active endometriosis and that it had all dried up.

The reason for my second laparoscopy was based purely on a very strong intuitive feeling of the need to be checked internally. I felt something was amiss but I had no idea what, and I had no symptoms. In fact I was fitter than I had been in many years. During the operation one cyst was found on my ovary and treated, but like I said, all the other cysts and signs of Endometriosis had simply dried up.

My homeopath told me that this last cyst was the last physical evidence, the final manifestation of the disease. It was as though all the toxic debris and residue of endo had been moped up into one place, ready for the final treatment. My intuition to get checked internally despite feeling really fit and well, was so strong and would not go away. I tried to ignore it, knowing how fit I felt, but in the end my intuition was screaming at me.

I had worked with my homeopath for 4 years and together we went through ‘layers’ of healing, finally getting to the root causes of my ill health and Endometriosis. The disease was finally laid to rest with the support of homeopathic remedies and many steps I took to help myself. The final cyst on my ovary was the last ‘process’ in my healing, strange as that may sound. This cyst made my intuition kick in, which enabled me to get this last physical evidence cleared up once and for all.

Therefore, it wasn’t simply a case of ‘feeling better’ because my symptoms had subsided, and mine was not a case of simply going into remission, which is the term the medical profession would prefer to call it. I know at a gut level that I was healed. Totally healed.

When I had my first diagnostic laparoscopy, my gyne told me that I had the worst case of Endometriosis she had ever seen – so it is not as though my healing was easier or simpler or quicker because I had a mild case of Endo. No, quite the opposite. I had cysts all over my abdominal cavity and was advised to a have a total hysterectomy.

I have been reading so many desperate stories of women whose lives have been totally devastated by this disease. One woman had actually been omitted into hospital over 100 times. Women are cancelling entire chunks of their lives because of this disease. Many women are opting for a total hysterectomy in a last ditch attempt to gain relief from this disease. Millions of women are in despair of gaining any relief from the pain and agony associated with endo, never mind hoping to be cured or healed.

Which is why I am giving a brief insight into my own story – to give women hope and to spread the word that a ‘cure’, healing, remission, whatever you want to call it, can and does happen. There may be a few successes for women who choose conventional drugs and surgery to treat their endometriosis, but they are few and far between. The best successes are for those women who use natural and alternative treatments.

This is because using natural therapies are natural, and they enable your own body to do the healing by using your immune system to full force. Alternative therapies help you do this by strengthening your immune system. There is not one alternative therapy that does the healing for you – what they all do, without exception, is to help you to heal yourself. Ask any alternative health practitioner, and they will confirm this statement.

It does not matter if you use Homeopathy, Herbalism, Traditional Chinese Medicine, Acupuncture or whatever – they all work to the same basic ‘principle’; that healing comes from within, and any alternative therapy helps the patient to help themselves.

Deciding which alternative therapy to use is down to personal choice with a mixture of finding a practitioner you ‘click with’, combined with a therapy that suits you. For example, if you do not like needles then Acupuncture will not be for you; if you do not like taking strong tasting concoctions, then Herbalism may not be for you. Go for the therapy which ‘feels’ right for you, and it will be right for you.

The other reason why alternative therapies are superior to aid healing is because they are permanent, not temporary, as in the case of drug treatment. As soon as drug treatment is stopped then the symptoms of endo come rushing back with vengeance.

I do read stories of women who have tried different alternative therapies and have felt let down. They have only felt limited benefit from the therapy they have chosen. In every story I have read of women who have ‘tried’ one of the alternative therapies, and have not had total success, the limiting factor has been the time span. These women have not given the therapy a chance to work. They may have only tried a regime of homeopathy or herbalism or whatever, for a few months and then given up because they were not seeing significant improvements.

My own time scale with a homeopath was 4 years – not 4 months. I was committed and determined, and my homeopath forewarned me it could take a long time to get well. But I felt that the ultimate long term benefit of total healing was far better than temporary respite. Therefore, my advice is to see any treatment using alternative therapy for endometrisios as long term (but not permanent).

People are so used to the idea of a quick fix for things in life, especially with modern medicine. We are all so impatient. But if you body has taken years to become dis-eased then it will take a long time to repair the damage and get the body back into equilibrium and balance.

To emphasise my positive message, in my research for my own book and my website, I have started to find stories of other women who have successfully obtained healing from this disease. In almost every case, these women have achieved their healing through different forms of alternative treatment or diet changes or a combination of self help techniques.

This has been more of a positive health and healing story rather then my own personal story of healing. The aim of my communication here is to provide hope that there are other possibilities to gain healing of Endometriosis. Evidence is mounting that it is possible, by the growing numbers of women who have achieved it.

The medical profession is not the ‘be all, and end all’ of health care for the human body. The medical profession is a relatively new phenomenon in the time scale of human society. Throughout history we have used herbs, healing, and essential oils. The practise of acupuncture goes back centuries; massage combined with oils goes way back in history.

Modern medicine is driven by pharmaceutical companies. There are very few doctors who develop new treatments for any of today’s illnesses and diseases. It is the drugs companies who develop new treatments in the form of new drugs. And guess what, that means more profits! I admit that there have been some wonderful developments in the field of medical surgery with the use of clever, and less invasive surgical techniques, like laser surgery and fibre optics, and many lives have been saved.

But when it comes to treating and healing diseases then modern medicine goes in with a sledge hammer, and does more harm than good. There are the dangers of side effects, some of which are permanent and very damaging to the body.

Your body chemistry is very delicate and the most delicate chemical system is the hormone system. We all know that endometriosis is fed and activated by hormones. In the human body, it takes only microscopic amounts of any given hormone to have a powerful and cascading effect in the body. These hormones are very potent, and yet the very treatment being offered for Endometriosis by modern medicine is synthetic hormonal drugs, which will obviously throw the body into disarray and upset a finely tuned orchestra of natural chemicals in the body.

Please be kind to your body. Healing yourself is simply a matter of being committed. A total commitment to change the way you are doing things. Do not leave it up to others; take control of your own health. I did, because after I heard my treatment options from the gyne, and compared that to the treatment potential using natural therapies, I knew I had no choice.

If you wish to find lots of positive advice about healing of Endometriosis visit my website at Your feedback about the site is welcome, as I am continuously aiming to improve the site.

Living with this disease!!!! Contributed by jenhawkeye

I am a 29 year old mom, wife, NICU nurse. I have been living with endo for approx 18 months. I am coming to the breaking point with this disease. I will start from the beginning:

I have had one biological child in 1997. I developed pre-eclampsia at 27 weeks. We held off delivery until 31 weeks. I was on strict hospital bed rest. I am an NICU nurse so my fears were huge. I have since had issues with hypertension. I was scheduled for a tubal ligation one year ago because birth control was not an option for me. The desire for me to have a biological child was not that strong. We have adopted since then. My periods had been becoming increasingly painful. I had spoken with my GYN MD about this. He descided to do exploratory surgery with the tubal.

Well once in surgery my MD found 2 areas of endo inutero and 2 in the pelvic cavity. He hoped with the lap that all of the sites were taken care of for the time being. Well the lap worked for 4 months. By Christmas time of 2002 I was in so much pain that I was vomiting. Tylenol with Codeine was not working. I was not able to work… Which was very difficult for me. I love my job. I could not function as a mother, wife, lover etc….

So my MD wanted me to try Lupron injections. I was willing to try anything by this point. He kept telling me we were not going to do anything drastic (hyst) because of my age also he wanted to be sure we were dealing with the same thing again. I got very frustated with him because here I was in agony effecting my whole life and he is telling me to hold out. I work with this Md on a continuing basis with my job. I trust his judgement but I was beginning to have my doubts. The first month did not show any relief. I tried one more month of injections and proceeded to get a 2nd and 3rd opinion. This was hard for me to do because of the trust and respect I have with him with my job. All the MDs felt the I should see if the injections worked for one more month. Well they did!!! I got injections from January until June. I began to have bone density loss so I had to only do the 6 month cycle. Also my body was becoming “immune” to the injections.

So here I sit….. I am now taking 30mg doses of Provera. I have now been taking this for 3 weeks. As of two days ago the same exact symptoms have started with increased pain. I am back to using the tylenol with codiene when i can. No bleeding, but everything else that acts like a menses of before. I have spoken with my MD at length today. I am going to increase my Provera dosage but he utimately feels the next step is a hyst with ovary removal. And then explore to see were in the pelvic cavity has any sites to burn. I feel this is a tremendous step for him to say.

But I have done alot of research. I have my doubts about this being the next step due to alot of women not getting relief after this. My husband is worried sick. Our love life is next to nothing for the past month. I find it very sad that my 6 year old said to me yesterday :Mom you are not pink anymore. You look like Casper (ghost). Are you sick?

Does anyone else out there have any suggestions? I want to have all the information or paths they have taken that I could try. I don’t want to make a hasty desicion. Also being a nurse, I want as much proof as one can get………

This comment was submitted to us:
Location: Flagstaff, Arizona
Company: Poppy Publishing
I read your story today. You said something about your doc wanting to “burn” if there is anything in the pelvic cavity. Research shows that ablation is the best way to deal with the endo because the tissue is actually cut out, as if to remove the root. Think of it as finding a black spot in a potato. The best way to get rid of it is NOT to use a peeler, and just scrape the layers, but to dig it out, thus making sure that you remove the entire spot. I’m not sure if you are aware of this process, but I would highly suggest you look into this, and see a doc who practices this. Also, please do not worry about hurting your doc’s feeling by seeing a different doc. This is about you and your health. If he can’t accept that you go elsewhere, I would question why I would put my health in his hands. Feel free to contact me. I am involved with the ERC.

SCHEDULED FOR LAPAROSCOPY Contributed by nadineparks

My name is Nadine. Here I sit in my tiny apartment in a narcotic stupor. Tylenol 3 with Codiene, one every four hours around the clock. Aleve doesn’t work any more. A nightgown is my constant wardrobe now. My left side and abdomen hurts too much for pants. Besides, the gown makes it easier for the frequent runs to the ladies room (bladder pressure).

I am a newspaper reporter, but I haven’t been able to work for weeks. Thank God my publishing company has a generous, short-term disability plan. It will pay 100% of my salary for six months while I’m out of work. I only have six months to find out what’s wrong with me and get better. I am frightened that I will lose my job. It’s a 10-year career at stake. My gynecologist suspects endmetriosis and has scheduled an exploratory laparoscopy and hysteroscopy for Aug. 7, 2003. A second surgeon will attend to repair my belly button, which herniated or popped out a few weeks ago. They suspect that there may be a section of colon adhered to the belly button. They plan to place a piece of mesh behind my belly button for support when the surgery is complete. This started about three months ago with mild lower back pain and a swollen abdomen. My white blood cell count was elevated to about 15 and lab tests revealed traces of blood in my urine. We checked my records for the past several years and I have never had blood in my urine. I couldn’t get comfortable in any position except standing. Then my left side started hurting and I developed a small lump just under my left rib on the abdomen. It went away for about a week, came back then went away. When it came back again, it was much worse and the pain eventually grew to an excrutiating level and I had to stop working. I’ve had both a vaginal and abdominal CT scan, vaginal ultrasound, colonoscopy and IVP, all were clear. We didn’t make the potential endometriosis link until my general practitioner said this was acting like an infection or cyst in my fallopian tube or ovary and she asked about my periods. About a year ago I had two episodes of vaginal breakthrough bleeding inbetween periods. Since then, my periods have become very painful the week before menstruation and the first couple of days of menstruation. They have become very heavy as well. When I am menstruating, every time I sit on the toilet blood and large clots drip into the bowl. I used to have my period about every 28 days like clockwork. Now they are coming every 23 to 26 days and last for five to seven days, where they used to be a short three to five days. Sex has been painful for at least six months now and after sex I have what feels like menstrual cramps. When I visited my gyn about a year ago about this he said I was getting older, the body changes as you get older and I may even be beginning early menopause. It was nothing to be concerned about, he assured me. When I saw him three months ago about the lump and the pain on my side and abdomen, he said the pain was up too high and sent me to a gastroenterologist. That specialist found no problems with my colon. After my general practioner mentioned my periods, I went back to my gyn and he said we needed to “get in there and see what’s going on.” If I understand correctly, he will check my uterus area with a scope (hysteroscopy). For the laparoscopy, he will expand my abdominal cavity with a gas, make three small incisions in my belly, insert a scope and search for any endometriosis spots and for any cysts or tumours, etc. If he finds any he will cut and remove them, unless they are attached to critical areas, such as the colon or bladder. He has warned me that laparoscopy may not get all the lesions, if there are any, and that many women ultimately require a hysterectomy, which he said has a high cure success rate. I’m 41. Both of my children are grown and I do not wan’t any more children. I had a tubal ligation 16 years ago. I asked him if he found endemetriosis if he could just go ahead and perform a hysterectomy. I want to knock this thing out and get back to work. He said he could but that insurance companies generally won’t pay for it unless laparoscopy and medications don’t work. I’m a little frightened about the surgery next week. The doctor said the pain should not be intolerable and I should recover in a few days. Still, it is surgery, there will be pain. I’m sure it will be complicated by the herniated belly button repair as well. My poor boyfriend. We live together. He has had to go without sex for so long. I thank God he sent me an understanding man. He’s been great, done all the cooking and cleaning, the grocery shopping, everything. At my son’s graduation ceremony, I could not walk from the car to the auditorium. I cried through the ceremony and everybody thought I was being sentimental, but I was crying because I was in pain. I didn’t want to spoil the event as we had family come in from all around the country. My mother had a pacemaker put in last month and I went to Georgia to try to help her with her recuperation. But I had to leave the day after her surgery because my period started and I was hurting too much to help her. I really feel quite useless right now. But I am praying that the surgery leads to a diagnosis and, ultimately, an end to this pain. I plan to update this after the laparoscopy to let you know the outcome. I may not have endometriosis. But I think it is important for all women to know that painful sex and debilitating menstruation is not normal and should be reported to a physician.

by Ariadm

Hi Nadine,

I read your story with interest and I apologise if my response sounds blunt.

First of all – a hyst is in no way a cure for endo – many women who have adeno no longer have problems after a hyst, but for women who have endo at least 90% of them continue to have problems. Endo doesn’t need the ovaries to produce food – it makes it own. If you have a hyst, but you have endo on the bowel, bladder, ureter, etc. the endo doesn’t go away – it stays there and can cause a lot of problems.

Second – it’s very possible to remove endo from the bowel, bladder, ureter etc etc as I’ve had that done by a top endo specialist in August 2001 and I’ve been pain free since.

Make sure you rest a lot after your operation – whether it’s a hyst or a lap. Why is your doctor not going to remove endo he finds on the bowel or bladder? Could he not work with someone who can do this for you?

I really wish you all the best and I hope the surgery does work for you. Please keep us updated, and you’re welcome to post any questions you may have on the forums.


by nadineparks

Arianna, thank you so much for your response. It is very comforting to know that I am not alone at a time like this. It is very difficult to talk to friends and family because they dont really understand what I am going through. So to have an caring and empathetic ear is very comforting. I guess we’ll have to see what the laparascopy reveals. If I do have endometriosis, I plan to find an endometriosis speciliast. I am in Charleston, S.C. Can anyone recommend a reliable, compassionate specialist in my area please?

by EvaAnn

I have just found this website and read a few comments – Yours peaked my interest. I have lived with endometriosis for 8 years and it has been progressivley worse. The medications dont work anymore – either to minimize endo or to treat the pain. The laporoscopy didnt do anything. The specialist wants me to consider a hysterectomy – we are not having more children. I am hoping to find success rates for a hysterectomy as treatment for endo. What can you share with me as far as the likelihood of symptoms after surgery?

by JenBison

Wow. First off, I wish you all the best. 2nd, I’m still new to this endo thing and didn’t realize the bladder thing was part of my symptoms. I’ve been going a lot more frequently lately. Also my periods: I, too, used to be every 28 days like clockwork. Then I started with the pain and the gyn put me on the pill. And then my period got messed up. I thought it was something to do with the pill. Anyway, I’m also having a lap. I was supposed to have on 7/28. I got all the way down to the Surgery Center and was told the laser was not working. The repair guy was coming later that afternoon, but didn’t know if he could even fix it that day. So I called the Dr’s office and the lady who schedules surgery was quite pissed at the surgery center. The upshot of all this is my surgery got rescheduled for 8/11, which is today! I’m very nervous.
But anyway, thanks for letting me know some of these symptoms are normal, and not just me. And I hope everything works out for you. 🙂

Finding out Contributed by tristelle

Today is the 29th May and yesterday I found out that i had endometriosis. I cried to start of with then went numb I havent felt a lot since. I am getting married in a year, and had planned kids soon after that so this has come as quite a shock. I had a laporoscomy to see what years of painful periods erregular bleeding and pain during sex was infact endo or not. The gyno didnt speculate but told me i shouldnt worry that it might not be anything, but i will never forget the look on his face when he came to tell me. I think the person it has hit the most was my mother we are very close and she broke down in tears and went to tlk to the gyno without me. It turns out I only have 4 spots and he burnt then, though i apparently have a 60% chance of them growing back and having slight problems falling pregnant. I would just like to see if anyone can help me though this initial denial stage and if anyone eles is going though it or went though it themselfs and can give me some pointers on what to expect next!


Pain-Free and Well After 12 Years-Please Read My Story

I just wanted to provide this forum with some valuable information. I have done tremendous research and traveled the country in search of the best resources to cope with endometriosis. I recently underwent surgery with Dr. John Rock, former president of the World Endometriosis Society. He is a leading expert and innovator in the research and treatment of endometriosis. He performed a laparotomy on me in October 2002 and the results have already been remarkable.

I am finally pain-free.

I am 23 years old

and I have been suffering from endometriosis since my first menstrual period at age 11. My younger sister was diagnosed with endometriosis at age 13. She and I have been treated by the most prestigious medical facilities and doctors in this country. I have visited the Mayo Clinic in Rochester, Minnesota, the University of Michigan Hospital in Ann Arbor, Michigan, Dr. Marc Laufer at Boston Children’s Hospital in Boston, Massachusetts and with doctors such as Dr. Rock at Emory University in Atlanta, Georgia. I have also consulted with Dr. David Redwine in Bend, Oregon and gynecological specialists at the University of Miami Medical Center as well. I have done tremendous research in medical journals and consulted with numerous other physicians nationwide.

It saddens me to hear of the countless surgeries that you all have undergone and the fact that doctors do not know how to properly treat endometriosis. I have been in your shoes.

But now with the expertise of Dr. John Rock and his team of gynecological specialists at Emory University, I am well now and I am off all hormones and prescription drugs for the first time in 12 years.

Since I was 11, I have been plagued with cramps, lower back pain, cystic ovaries, gastrointestinal and urological symptoms due to the endometriosis. There is no cure for endometriosis.

But there is help out there.

Dr. Rock has taught me that often times, as with my case, laparoscopic surgery is not thorough enough in exploring and treating endometriosis. Often times, the endometriosis is deep within the pelvic cavity, it is in the retro-peritoneum and deep in the utero-sacral ligaments. The laparoscope is often unable to see all of this deep endometriosis. That is why a laparotomy is often necessary.

I was first diagnosed and treated laparoscopically in 1999 but my symptoms did not improve, even with continuous birth control usage to suppress my periods. I have learned that there is a type of endometriosis that one is born with, like myself and my sister. The pain is present before one’s first menstruation or at the onset of menstruation. This type of endometriosi is congenital-one is born with the disease. This is the deep disease that needs to be removed by laparotomy.

I have also learned that hormones do not always suppress the growth of endometriosis. Often times, hormones are only implemented to suppress the symptoms, not the growth. In addition to excising, not lasering or burning the endometriosis, Dr. Rock and his colleagues at Emory also perform a procedure called a presacral neurectomy to combat the neurological pathways that transmit pelvic pain.

It is important that young girls and women, like yourselves, realize that painful, debilitating periods are not normal. It is very important that you find the right specialists. There are too many myths and misconceptions out there regrading endometriosis. You owe it to yourselves to find the best healthcare providers. I consulted with very reputable specialists in my hometown of Miami, Florida but I was misdiagnosed for nine years and not treated comprehensively enough with laparoscopic surgery.

I urge those of you out there, both young and old, to find the best doctors. Your pain is real. Wonderful endometriosis specialists are out there. They are just often difficult to find.

Endometriosis can only be diagnosed through exploratory surgery such as laparoscopy and laparotomy. It is not necessary to have multiple surgeries and radical surgery such as hysterectomy. My reproductive organs have been spared because I found the best resources and the best doctors. I have tried everything from hormones to acupuncture. These treatments only mask the pain-they do not rid you of the disease.

If you have any questions, please contact me via e-mail at and I will help get you in touch with the best endometriosis specialists. I want to help spare you some of the pain my sister and I have endured. It is important that you take an active role in your health-your quality of life and your fertility are at stake.

Mandi’s Story – Surviving Endometriosis and Infertility

My name is Mandi Hood. As I sit and write this I am recovering from a hysterectomy on October 2, 2002. I am 32 and was diagnosed with Endometriosis at 21. I have had 12 surgeries in the last 11 years. I almost feel like an expert now. I had Endometriosis, polycystic ovaries, and fibrocystic tumors. I so wanted a child so when the doctors told me to have a hysterectomy at 21 I told them no that my God was bigger than them and they were not removing any of my body parts… thus begins my long journey.

After many fertility treatments, Lupron treatments, and many other treatments, I did eventually lose my left ovary and fallopian tube in January 2000 because of a cyst the size of an orange. Every surgery brought more bad news of scar tissue and Endometriosis. My uterus was always stuck to my endometrial wall as well as my ovaries. I also had Endometriosis on my colon and no doctor dared to touch that. Pain has been my constant companion for all of these years. I was diagnosed with fibromyalgia in August 1999. I had no idea the two were related until now.
In August 2000, after giving up hope I found out I was pregnant. My husband, Edward and I now have a beautiful 18 month old baby girl. She is my miracle. Last month I started my period and it was awful. I was bleeding so heavy and passing large clots(4inches in diameter). I had to wear adult diapers. After two weeks of bleeding like this we did another surgery. By the time I got to the hospital my blood count was down to 9. When they got inside they found horrendous scar tissue. My uterus and colon were completely fused together and once again I had fibroids in my uterus. I started bleeding and lost 900cc more blood. I had to have a transfusion. The first few days after surgery I was in so much pain that I swore that if I died and went to hell that Satan would used a hysterectomy as my eternal punishment. Now 9 days later I look at my little girl and thank God for her and for my life. I needed to share my story to let other with this condition know there is hope.
Copyright © 2002. Mandi Hood. All Rights Reserved.

A Mother’s Story

Here is a mother’s story on how she deals with her daughter having Endometriosis.
I’m a 40-something woman who has known a few women who had a condition called Endometriosis. I knew these women had occassional pain and both had difficulty having children. One of my friends was able to conceive, but miscarried several times before having two successful pregnancies. I also knew they took medication to help with the endo and had some side effects. At that time, I never gave endometriosis much additional thought.
That all changed in September 2000 when a surgeon came out to tell my husband and me that our 13 year old daughter had endometriosis. Briefly, here’s how it started:

Our family was vacationing out of the country in June 2000 when my daughter, Angela, began having severe abdominal pain a few days before her period began. Her pain level remained high and it lasted for almost 2 weeks. Until that month, she had experienced little, if any, menstrual cramping. For that reason, I just assumed it was a one time problem and treated her symptoms with Tylenol. However, the next month, she once again began having excruciating pain but that time, it started about a week before her period and continued for a week and half during and after her period. In total, she was in extreme pain for about 2 1/2 weeks in July. I called her pediatrician and he wanted to examine her.
Her pediatrician found nothing during the exam which would cause such intense pain and he told us that the pain was lasting too long to be related to her menses. He said he would consult with a pediatric gynecologist. At that time, I didn’t know that there were gynecologists who specialized in pediatric and adolescent gynecology.
The next day, Angela’s pediatrician called to report on his consultation with the gynecologist. The specialist agreed that ‘something’ was not right and he wanted Angela to have an ultrasound. That was scheduled just a few days later at a local children’s hospital. The ultrasound indicated she had a cyst in her right ovary and in the fallopian tube. With that finding, Angela then became a patient of the pediatric gynecologist.
At our first appointment, he explained there were two kinds of ovarian cysts; one was filled with liguid and usually responded well to hormonal treatments and the other was a dermoid cyst which was a solid mass that would never respond to medication. The only way to get rid of a dermoid cyst would be surgery. We were told that many women and girls had liquid filled ovarian cysts that never caused any pain because they responded to the body’s natural hormonal cycles. In other words, they would fill with blood and then shrink and the blood would be expelled during the monthly menstrual period. However, some girls and women had these liquid filled cysts that did cause pain and a low estrogen birth control pill was prescribed along with an anti-inflammatory drug (such as Anaprox) and this prescription combination controlled the pain. So, being optimistic that she had the liquid filled cyst, she was started on the birth control pill and the Anaprox.
We were cautiously optimistic as we waited to see what the month of August would bring. Unfortunately, it was a total repeat of the prior two months. She was in so much pain she just laid on the couch curled up in a fetal position with a heating pad. Again, this went on for about 2 1/2 weeks.
I was getting very concerned especially because her 8th grade school year would be starting soon and I knew she couldn’t miss over 2 weeks of school a month. So I called the doctor and explained what had happened. Though he was a little less optimistic as before, he did ask that we try to give the medications another month to see if they kicked in and began to ease the pain.
On September 1st, less than two weeks since the pain ended in August, Angela awoke with a lot of pain. I think I knew at that point that surgery was going to be required. School began after Labor Day, and she spent as much time in the nurse’s office as she did in the classroom. After many phone calls and visits to the doctor, we decided to go ahead and have him perform surgery to remove the cyst. The surgery was scheduled for September 29th. During the month of September, she did not have one pain free day.
Her surgery was performed via laparoscopy at our local children’s hospital. Our doctor said it should only take about an hour to remove the cyst and get her back into recovery and that he would be out to speak to us as soon as he finished. When he came out about an hour and a half later, he immediately told us she was ok. We then went into a small conference room to get a full report. He told us he was so glad we went ahead with the surgery because “he found a lot more inside than he was expecting”. Nothing horrible, he said, but in addition to the cysts, he discovered endometriosis in her right ovary and he found she was retaining a lot of blood in the uterine cavity that shouldn’t be there.
He then told us that any one of those three conditions (cyst, endo, and excess blood) could cause intense pain and considering the fact that she had all three, he was amazed that she was functioning as well as she had been. Because of finding endo in the right ovary, he also went into the left one to see if there was any sign of endo there. Fortunately, he did not see any but he did biopsy it to make sure. The pathology reports indicated microscopic endo was still present in the right ovary but the left one was clear.
A few days following her surgery, I began my quest to learn as much about endometriosis as I could. What I found was a lot of conflicting information. I felt confused and overwhelmed. At our first post-op check-up, her doctor recommended Angela be placed on Lupron for 6-8 months which would temporarily put her body in a pseudo-menopause state to allow her insides time to heal properly. Lupron would stop her periods but she could experience the usual side-effects of menopause such as hot flashes, weight gain, etc. I am not a medical person in any way, but although the explanation of Lupron sounded feasible, many red flags were waving in my mind. These red flags were questioning the physical changes we’d be putting on a 13 year girl who had only been having her menstrual periods for just over a year. I kept thinking this way: She has a period for let’s say 14 or 15 months, now we’re going to stop them for 6 – 8 months, and then we’re going to let her start them again. Somehow I kept telling myself this could not be good for her young body.
I questioned the doctor on the potential side effects Lupron could have on Angela and young teenage girls. The response was that research has shown only that some girls experience a small amount of bone density loss but that calcium supplements could counter that. Being optimistic, I refused to begin the series of Lupron shots until I had done more research.
Unfortunately, my research revealed that not much research has been done on the side effects of Lupron on teenagers. What I did find was that the results of lupon shots in ladies in their 20’s and 30’s were not all that positive. Many did find some pain relief while they were on the shots, but most reported that all or some of the pain returned immediately after they stopped the series of treatments. It seemed to me that quite a few of these women felt the side effects of Lupron were as bad as, if not worse, than the original endo pain they were trying to relieve. Some of these side effects were the hot flashes, weight gain, extreme mood swings, very dry vaginas and painful intercourse. The more I read, the more I decided that I did not want to put my young daughter through all that.
As I continued to research endometriosis on the web, I found two places that I personally place the most trust in. While there are many websites related to endo and I do not pass judgement on their validity or their views, I felt more comfortable with the Endometriosis Association founded by Mary Lou Balweg, an endo survivor, to try to educate and support other patients with endo. This organization provides support, educational materials, books, pamphlets, videos but more importantly, are involved in cutting edge research on endometriosis.
My second saving grace was an online support group called DaughtersWithEndo at Just reading the name alone gave me great comfort in my early days of reserach because I thought “I’m not alone”. There are other Moms or Dads trying to cope with the knowledge that their precious daughter has an incurrable disease. DaughtersWithEndo is a message board where parents can ask questions, share their personal stories, and lift others up when they are emotionally and phycially drained. What I found on those boards were real parents with real teenagers living with endo. Some of these parents have daughters who are doing amazingly well since their endo diagnosis. Some of them have daughters who seem not to respond to any treatment and whose quality of life is so difficult, it will bring tears to your eyes as you read and share their struggles.
For me, the greatest thing I have gotten through this board is validation for my red-flag decision not to use Lupron. While some of these young girls did find relief from Lupron, the parents have reported the same side effects mentioned above, as well as severe depression and memory loss. In many cases, these young girls became so depressed they were near suicidal. The depression led to additional medications such as Prozac and then it was like a never stopping merry-go-round. Each additional medication would lead to other problems and more medication. That certainly is not what we want for any of our daughters. The memory loss from Lupron has made school a major struggle for many of these girls who were once honor students. After Lupron, they can read assignments yet not be able to remember what they’ve read. What most of these parents have taught me, is that I should consider Lupron only as a last resort and that’s been my decision.
It’s now been almost two years since Angela was diagnosed with endo. Overall, she is doing remarkably well and I consider her to be one of the lucky ones because this disease may slow her down at times but it hasn’t completely changed her life. I credit this to our continual research about endo, our positive outlook in dealing with an incurrable disease, to her doctors, her school and our wonderful support network of friends and family. She remains on birth control pills to control the amount of estrogin in her system and we’ve found ways to help with pain. She will be starting her sophomore year of high school next month where she actively participates in the drama and musical clubs and sports. We don’t know what the future holds for her but we take each day one at a time. As a Mom, I worry somewhat about the future. I wonder if the endo will get worse, will it appear in more places, how will this affect her fertility down the road should she want children. I try not to borrow trouble from tomorrow because we’ve got enough to deal with today. We continue to educate people about endo, especially her teachers at school (with help from the nurses and guidance counselor).
Many people find it strange to hear me say, I’m glad Angela had an ovarian cyst two years ago. I say that because it led us to a definite diagnosis of endo within 3 months of the onset of her pain. Considering that it takes most women 6 to 7 YEARS on average to get an accurate diagnosis, I’m forever grateful to her pediatrician and her gynocologist.
© Bert Thomas

Question about Endo Symptoms?

Hi Everyone,

I’m posting this for one of the users on the site who has some questions. If you can help her out, please respond.

I’m also putting the information in the forums so that might be the best place to respond. Thanks!

Hi folks,
Just found the info and I am desperate to find out if anyone is suffering from the same symptoms as me. Three years ago I found a lump in my perineum (that bit between fanny and bum), which was very sore, large and not very pretty. After several visits to my GP, who is very good, she referred me to the Gyn for further tests. Initial thoughts were that it was some sort of cyst or abcess. As you can imagine, the antibotics came and went on several occasions, accompanied by every type of pain relief on the market.
In addition to my lump I had severe ‘flu’ like symptoms, the worst shivering and fluctuating fevers I’ve ever experienced in my life. The lump stays between five to ten days depending on the severity and always arrives at the same time or just at the end of my period. In February 2000 I was rushed to hospital as the lump was very large and infected and the operation remained inconclusive. Only the infected tissue was removed as they thought it was an abcess, they thought wrong. I have always suffered with extremely painful and heavy periods since starting at the ripe old age of ten??.
I have received three, four month sessions of zoladex, which made me feel like granny grumps to begin with but did eventually ease the suffering fro a few months. The Gyn want me to have a full hyst but I am very reluctant. Lap only revealed some evidence of a history of PID and no endo at uterus site.
Eventually they summised that it could be endo in a strange site on my perineum due to the scar tissue from a very traumatic forceps birth 15 years ago. I try to cope but the psychological effects are now becoming intolerable and I am no use to anybody three weeks out of every four. it usually takes at least a week to ten days to recover. In context I know my symptoms are not as severe as some suffers but trying to walk, sit or drive when my ‘visitor’ arrives is not an easy task and it has a major impact on my marriage – I do have an understanding husband to apply the germolene?? If anybody can relate to these symptoms I would appreciate some info as no-one is quite sure what it is.
Many thanks in anticipation

Re: Question about Endo Symptoms? (Score: 1)
by hell (-)
on Dec 17, 2004 – 10:56 AM
Hi Michelle
wow never thought I would read my own life written by someone else!
I too had a very difficult time when I gave birth to my son with ventousse and forceps.
I started my periods at ten years old and they have always been heavy long and extremely painful, I had major problems with perineum scar as in it didn’t heal at all for three years , I had two excisions of the scar but after each op the scar broke down again to leave a gaping wound with a lump infection after infection antibiotic after antibiotic I even had special dressings and physio untill eventually my Gyn suggested a steroid injection into the scar itself as you can imagine this was extremely painful but it worked!
During all this time the drs refused to even comtemplate the idea of endometriosis, untill two years ago I had had enough of the excruiating pain I was in and the heavy bleedin even though I was on depropervera and had been since the birth of my son three years earlier.
My G.P referred me to a different consultant and hospital I had a lap in feb 2004 which discovered endo since then various treatments have been tried and failed am currently on the mirena coil and prostap injections.
I am pleased you have such a wonderful husband it must be great to have his support, unfortunately i am on my own but that only means I can concentrate on my son and myself without worrying about someone else.
Hang on in there and keep on at the docs there is always an option to try!
I don’t know if this has helped but reading your story helped me so THANKYOU so much for sharing your story

One Year Anniversary Contributed by Arianna

Today, August 22, 2002, I have been pain free for 1 whole year!!!! For me this is a great achievement. I lived for several years prior to having a lap with a specialist in constant pain with nothing that would take it away.

Thanks to my specialist, Dr. Lie, I have spent the past year with my life back. I was able to focus in classes. I didn’t have to take high doses of pain killers just to make it through the day.

To not be in pain for an entire year, except of course for the pain with my period which was mild, is something that I have never really known since starting my period. It is a totally amazing feeling.

I hope that one day, all of the women who suffer from endometriosis, will know what it’s like to be pain free, forever.

August 22, 2002

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